meanderings of a mary mind

too stressed....

2011-08-12T20:21:00.000-07:00

Hi everyone....I am just here, dropping by to say that I have not felt much like writing these past months. There is just too much going on in my life. Most recently, my lovely dog..my dingo, my soul mate, went across the Rainbow Bridge. This has been so hard for me. Along with that, I went to Arlington National Cemetery to bury my parents. It was wonderful, and I hope I will come back here and write about it. But, until then....I hope that you are all happy, healthy, and living the best life you can, with what you have.

I have been trying to figure out what I can do with what I have right now. I keep coming up with goals, only to not achieve them, which leads to me feeling defeated. I think I have finally come up with something I can do. It is one of those things that I don't think will have immediate pay back....but then again, I think as a society, that is one of the things we have to learn is not something to be expected. I am going to dedicate a portion of each day to live in prayer. I realized, that to be in service is something that I am very dedicated to. My past career was in service to others. My goals that I come up with, are all around that...but I never have the energy. What I can do, is sit in meditation and prayer. Usually, my prayers are all about thanks, and gratitude....but now, I want to focus on the needs of others, and pray. Will anyone benefit? That is where faith comes in. I believe they will. Maybe it is something that will not be apparent to me, or even to those that will be the focus of the prayers.....but, it can't hurt.

So, that is my plan. Along with that, I am trying to figure out my future. Just a small thing! LOL. I do have some huge decisions to make, so I will be focusing on accomplishing this. I am hoping to find some advisors, and some assistance.

I am hoping all the grief that has been in my life for the last few months, with my mother's death and burial, and then my beautiful dog Keefa's death......I am ready to move past all the grief. I know, just because I say I am ready, that may not be the case....but I am hoping.

So, this is why I have not been writing. I should be. I should be sharing some of my thoughts and actions around getting through the grief. I know that could help some. Especially along with the illness, the poverty, etc. But, I just have not felt like sharing. I guess sometimes, going inward is important.

Maybe soon, there will be another round of pithy, informative, entertaining, blogs...LOL...but for now my little group of followers.....please wait it out with me....I will return.....maybe writing from a screen porch in Atlanta....or from this little dump of a place in Vermont (Margret Mitchell wrote a little something from a dump..right?) Or who knows.....what wild and wicked adventure could come my way??? Until then...I bid you.......crap...can't spell it....LOL

When It Was Supposed to Happen

2011-05-10T10:37:00.000-07:00

Yesterday, I was on my way to the pharmacy, when I suddenly found myself in the neighboring grocery store's parking lot. Huh? I laughed at myself, and turned around to go back to the turn off for the pharmacy. I wondered to myself if that was one of those things where I was mysteriously thrown off track to avoid something that would have happened. Like when you hear about someone missing the train that wrecked. I drove the short distance back to the pharmacy and that experience left my mind.

I was told that they were very busy, and wait could be up to 30 minutes long. I had a good book with me, and no where else to go, so I settled into the chair, and got my nose into the book. Suddenly, this woman came in and asked if her scripts were ready. The counter person told her she didn't see anything. This woman became very upset. (this was when my attention turned fully to them). The counter person looked through everything again, twice. Then she went to talk to the pharmacist. In the mean time, a man came in and greeted the customer. She kind of leaned into him, and balled her fists and said, "This is testing all of my Christian patience"...she went on to tell him that she had come in 20 minutes earlier and they told her it would be at least that long until they could get the prescriptions to her. He responded by saying, "Yes, sometimes it isn't easy to be Christian".

The clerk came back and told her that the doctor had called it in, but it was called into the pharmacy she usually uses. She was visibly holding back her anger....her hands were shaking and she was gritting her teeth. The counter person said that they would call that store and have it transferred to this store, but it would be a few minutes more. The customer kind of barked at her..."So how much longer will THAT be?" The clerk said they would try to expedite it, but they were very busy. She agreed to wait, but left in a huff. (she had been coming in and out of the store a few times).

I was thinking, since I was sitting there all comfy reading my book, that if they wanted to put her in front of me, that would be ok with me...but just then one of the pharmacists came out to tell me (rather sheepishly) that my doc had written a script for a strength that didn't exist, and they had put a call into him. I told her I totally understood how that happened (I won't explain why, but I did know why that happened, it wasn't his fault), and I would just sit there and wait. So, I figured I didn't need to mention anything about putting that woman in front of me, as I was going to be waiting anyway.

So, as I sat there, I started examining (as I have a want to do)...what had just happened. I was thinking about her statement to the man, "It is taking all my Christian patience"....why was it "Christian patience?" I thought. That seemed kind of an interesting statement to me. I was sitting there and just "being" patient. I didn't think that Christ had much to do with my patience...directly. But, maybe she had somewhere to go, or had to get children off the bus, or any one of the things a busy life demands....and I had nothing pressing. So, maybe her patience was harder to come by, than mine. But still, I was curious why it would be Christian patience. Did that mean if she didn't have Christ in her heart, she would hurt that clerk? Hmmmm, I wondered. I think maybe, I was being Christian...or at least wanting to be, as I had a thought about putting her in front of me....but I wasn't saying to myself..."I am calling up my Christian compassion." Does Christ really have anything to do with our emotions? Other than wanting to act Christian, so we will be able to get into Heaven, I just couldn't figure out why she had to name her patience "Christian". This is in no way chastising her for saying this, but it just started a whole conversation with myself that seemed somehow important.

I finally let that go, and started reading again. A man who had been sitting beside me commented on my book. So that got us into another conversation. He told me he had just got back from Afghanistan, and was there because he had just had some "junk" taken out of his chest. Someone he knew came in, and he started talking to him too. We started discussing the recent killing of bin Laden, and his hope that this would get us out of Afghanistan. I was in awe of his story, and his dedication as all he wanted to do was get healed and get back. He was not a young man, he said he was 51. He got up to leave as his prescription was ready, and as he was walking by me I called him back to me, I shook his hand and thanked him for what he does for us. He laughed and thanked me. Although, his energy...his demeanor was kind of gruff, and he would usually be someone I would not stop to talk with.......I again started thinking.....

I was a child of the 60's and 70's....and if you were not, you will not understand this....but I was "taught" not to like the military. I was in my most informative teen years during the Vietnam War. Now, I have turned around my thinking that the men and women who went over did not deserve the treatment they got on the return home. (Luckily, I did not participate in the sentiment of the time that soldiers were to be scorned)....but, what did grow out of that time was a dislike of military and war. But, here I was listening to a man who was rather forceful and not my "type" of person I would usually respond to....but yet, I found myself calling out to him so I could shake his hand. I kind of smiled, that I had grown up. If this guy would have been a guy sitting there in his uniform and had the manors that you see soldiers on TV have...then I would have more easily applauded his service to us....but this guy was different. Again, deep thought ensued. About that time, I was interrupted by the counter person, who said to me...."You have the patience of the Saints huh?" I laughed at her, and asked her what time it was...."It is almost 4:30pm" I went in there around 1:00!!!! I went up to her and thanked her for telling me the time and said I thought I would just come back another day. She thanked again, but this time for being so understanding. I returned that thanks by telling her my observations over the day at how many people yelled at them when things did not go right. She just smiled and said, "Yeah, we get used to it."

Once again, as I walked out the pharmacy I went into that deep thinking place. I realized that everyday, they are faced with people that are not feeling good, in pain, in a rush...etc. And, every time I am in there, they are always smiling and helpful....and I bet don't get paid all that much. It made me want to remember to always appreciate them for the work they do when I go in there. After all, isn't that what we all want....just a little appreciation? Then I drove by the entrance to the grocery store.....

I thought back to my wondering if had kept me from some accident waiting to happen....just the total opposite I realized. I think I was given the opportunity to face some of my prejudices, and given a chance to think a little deeper about our interactions with one another. And, I was pretty happy that the outcome was to make a note to be just a little kinder to someone. I am still not certain that God or Jesus is in control of my emotions....but I do think that maybe sometimes I am given lessons....and hopefully...that was one I passed. As I have heard before: "There are no coincidenses, only God seeing if we are paying attention."

Into the LIght of the Day...

2011-05-01T06:38:00.000-07:00

Dear Dercum's Disease, or should I call you by your other name? Adiposis Dolorosa....

For a number of years now, you have taken up residence in my body. I don't know why. Why did you choose me? What makes me a good host for you? You must have some way of overcoming my desires, hopes, thoughts. Because I did not invite you (at least on this plane of existence), nor am I wanting you to continue to stay. But you do...you bastard.

Because of you, I have lost my ability to go out and make a living. Although having enough money to live on would be a nice thing..it really isn't even about the money that makes me want to choke you. It is that you stole the way I had a reason to live. I felt good about myself when I was working with people. Both my clients and my co-workers. I felt like I was making a difference, or at least attempting to. I worked with adolescents and their families. I used to say jokingly, when my job got a little hard..."Well, off to change the world, one kid at a time".....but in my heart and soul, I hoped that this was true. I hoped that by working with any of the people I have worked with over the years, that this was my way to make a positive mark on our world. It was my way of hopefully working toward a kinder and gentler nation. But, then you came into my life, and I began to watch that slowly go away. In fact, it was slowly...so much so that in the beginning, I didn't realize it was you. You were there, silently taking over. My brain was not able to comprehend the way that you came unbidden and started killing me slowly. But there you were, you won.

At first, I tried to hide you. I tried to work and not pay attention to the pain. I tried to cover up that I was not able to concentrate, to make decisions. Partly you accomplished through the pain levels that were starting to make moving through this life difficult, but you also started messing with my mind. Subtly, but I noticed. It caused your friend fear to circle me constantly. My shiny aura was turning dark, and people were noticing. I don't think they understood that it was you that was changing me. Heck, I am not sure I was was aware that it was you....but nevertheless, you won. My coworkers, who were my friends, all started leaving me, as you....you are like an abusive lover...you want me all to yourself. So you made me say things, and do things that were not my personality, but people didn't understand that. They just said..."what is wrong with you" mostly to themselves....they thought I was changing. I was, into what you wanted.

Then, after you accomplished having me to yourself, you decide that you will also take away everything that I like to do. You are very mean. You have these ways of making me seem like I am a bad person, or non compliant. The doctors tell me that exercise is good for me....well, aren't you the cheeky one to make exercise be part of what makes me worse. So, my walks in the woods, my goals to hike the Appalachian Trail evaporated into a distant desire. I like to play music, you make that hurt too much. I like to paint, to draw, to do pottery, weave beads, make jewelry....I have lots of things I like to do, I am lucky that way....I used to say "I never get bored"...well, you have certainly seen to it that I can't do any of that anymore. I try to adapt, to get around your ways to shut me down.....but you seem to find ways to end everything I hold dear. (But, I don't give up, I keep finding ways....but I am not going to say that out loud, as I know you are just waiting to see what you can do to me next!)

So, my friends are gone, my hobbies are gone, my ability to take care of myself financially are gone, my ability to take care of myself in many ways are gone.....and it is all your fault. I hate you.

The other really amazing thing you do, is make people think that all this is my fault. You figured out how to take all this away from me, but what you kept intact......the way I look. In fact, you don't make me gaunt and sickly looking, you make me fat. No one believes that you can become fat without overeating, so everyone thinks that I am just lazy and don't know good nutrition. So this also makes me a liar in other's eyes. You have set it up so that no one sees you, they only see what you have manipulated.

I have learned how to work with you. I no longer cry tears of anger, and sadness that you have entered my life. I try to let people know that you are responsible for my current condition...I am outing you! I know others who don't want to let people know that you are trying to ruin their lives, and that is ok, but I have decided that I am telling as many people as I can about you. You have hidden far too many years. So long in fact that people think you are rare.

Here is what I want. I am telling people about you so that you can no longer hide. I am hoping that people will realize that you are just as bad as AIDS, heart disease, or Diabetes. People think I am just wanting to take pain killers to become non-functional and watch TV all day....really? Have I ever done that in my life???? I have worked, sometimes 2 and 3 jobs at a time. I have worked hard, and I have played hard. I enjoyed so many things, I had many interests and dreams....I had places to go, and people to meet. I was a kind of gypsy, I have always enjoyed travel and learning new cultures. You have taken that away, and I want people to know it is you...it is not me being lazy. And then the ultimate that people, including me, don't want to know or think about......you are a killer. You don't just stop at giving your victims pain, and fatigue, and weakness, and weight gain, and a host of other symptoms...nope...you kill. So, I am confused why people do not take you more seriously.

I am hoping that people read this, and realize that to end your grasp over me, to make you go away, there has to be research into how to do this. Because, as I have already said, you are good at hiding. But, we have at least one person who has dedicated her life to finding a way to eradicate you off the face of this Earth! She is hero to many of us. She is Doctor Karen Herbst. We are hoping that people will understand that I want this pain to end. I want all the medication that I am on, including the narcotics, to be a thing I can talk about in the past. That is now where my dreams go. I dream that one day, people will take you seriously, they will help Dr Herbst by sending her money to continue her research.

Please, those of you who may read this, I am asking for your help. I hope this doesn't make you mad. But those of us with this illness, this intruder into our lives, need your help. We are weak, in pain, fatigued beyond comprehension. We do what we can, but we would like you to help us get our dreams back. You can do this by sending money into the Fat Disorders Research Society (google them for info on how to donate), you can offer to help us out around the house, or by doing errands. You can also help by listening to us without judgment. If we tell you we use narcotics for pain, please....we don't need lectures about addiction, or your hand held out because you want us to share. If we tell you we can't come over to your party, please don't take that personal, we really want to be there and it makes us mad that we can no longer do things that are fun and to others are relaxing. Please also realize that this illness is real, and it is serious. It is progressing and prognosis can be death if a lipoma affects the lungs or heart. Your support to help us become warriors not worriers against this illness is what we want.

I began this blog writing to the illness that has invaded my body, and ended it with an appeal to readers of this blog (hopefully there may be a few! LOL) I am hoping that both of you are listening. And, if you could do me a big favor.....I would love if you could ask your friends, colleagues, family members to read this. I want awareness of this illness to come into the light of day. Namaste my readers.....I hope your dreams come true!

I Am An Official Orphan

2011-04-21T12:47:00.000-07:00

I am back, and I am an orphan. Wow, it has been a long couple of months. For those of you who don't know, I just returned from Montana where I have been for the last month because my mother died. In early January, she learned she had lung cancer. I guess when you are 91, and believed you have had a good life, and are ready to go....you do. It was just a few months from diagnosis to death for her. For me, it was intense.

I had just returned from San Diego, where I got the official diagnosis of Lipa/lymphadema and Dercum's Disease type II, when I got the word that my mother was not doing well at all. She lived in a retirement community, and while she had Hospice, she was in too much pain to be able to stay at home. So, before I could get there, she was put into a nursing home. The hospice staff I had been talking to on the phone said she would stay in this nursing home (my mother always said she never wanted to be in a nursing home) until a bed at the hospice house opened up. The last conversation I had with my mother, prior to seeing her, she said she could hardly wait to see me. She said we would hug and hug and hug.

I tried to fly out, but the weather had different plans, so I ended up staying in a motel in Burlington waiting for a flight to become available. It was the Doubletree Inn, so I was in a very nice place but I can hardly remember those couple of nights now. When I finally got to Montana, a couple of days later, my mother was already in the nursing home. They brought me to her. I didn't even recognize her. She was so little. I knew she had lost weight, but this little person, wasn't the mother I remembered. She looked so tiny (4ft 9inches, and 90 lbs), sitting at the dining table, dressed in her lime green shirt (the one she wore to my father's funeral). I bent down to her and said "Hi".

She said, "Can you tell me when my daughter is coming?" yikes, that just about made my stomach jump into my mouth....

"Mother, it is me"...I said

"Oh, can you call Bill...no, oh what is his name..."

"Bob?" I asked...

"Yes, tell him I am here"

No hugs, just her fear that her "boyfriend" a man she had dated in high school, that had reconnected with her would not know about her condition. I told her I would tell him, and then I hugged her gently. She gasped...."Does that hurt?" she nodded.

I don't remember much of the next days. That was Feb 27th, and until she died on March 10th, (the day I had originally figured I would return home, but instead that was the day she did), I stayed by her side at the nursing home. The staff there were great. The Hospice staff...not so much...but I won't go into that here. I spent those last days watching her sleep, mostly. At times she would talk, but not to me. At times she would see things that I could not, although she was certain I could. I guess it gets a little hazy who is on what side of that veil. I fed her, and rubbed lotion on her. The last kind of lucid moment she had with me, she ran her hands down the locks of my hair that fell from my head down onto the bed. "You never did really like me in long hair, did you?" She smiled and shook her head "no". The last words she uttered to me, as I was feeding her one day were, "I love you"......I said this to her about 300 times a day. It was hard being there. Physically, as I was sleeping (kind of) in a recliner, emotionally as it was a complicated relationship my mother and I had built over the years, spiritually as I had never been with a person who was dying. So, on all levels I was being taxed....then one day, after a short nap I awoke to the CNA's whispering over by her bed. They turned and looked at me, and I knew it was the end. Amazingly to everyone, her breathing had stopped....but her heart just kept ticking. For TWO HOURS!!! But then, in that last beat of her heart.....I became an orphan. Weird.

A friend..well maybe not, sent me an email before I left for Montana saying that this trip was not about me, but about my mother. I am not sure how it could not be about me. I have feelings. Yes, it was my mother leaving this Earth, but it was me having to do everything surrounding this. It is amazing how much you have to do when someone dies. I had so many decisions to make, things to sort through, tears to cry. God it was hard. I really did not think I was going to make it through the whole experience, but I did. Thanks to some good friends, and a few cousins. You see, I am an only child....so no siblings, no spouse, no offspring....it was just me.

Well, I won't go into the whole story, but I am now back. I will write some about my experience there, and about how different I now feel. I am still pretty sick. That will be another story, don't ever run out of narcotics in another State!!! But, I am home now. I was so glad to see my dogs, but am I glad to be back? I am not sure. It was nice being back in Montana. It is where my roots are. I think my heart is in Vermont, but my roots are in MT.....so, it was hard to leave there.

I have lots to say. But for now....I just want to say I am back, and look for some stories and thoughts and meanderings to come......Namaste...

can I become an ostrich?

2011-02-13T07:00:00.000-08:00

I haven't written for a long time. I wish I could say it was because I was feeling so good that I was out doing something, but alas, that is not the case. Although, I have been busy and have much to write about. I have no idea where this writing will take me, but I just need to get some things out of me, so you get to read what I need to dump.....lucky you!

I guess the place to start is that I finally got a diagnosis. After I can't even count how many years of knowing something was wrong with me, I now know. As many of you know, I have been diagnosed with Fibromyalgia, and before that, Chronic Fatigue. However, neither of these illnesses seemed to explain everything. So, I did lots of searching and came up with a possible diagnosis of a rare illness called Dercum's Disease or Adiposis Dolorosa. When I read about it on the net, it just seemed to fit like a glove. So, I discovered that there was a doctor in San Diego who was the leading expert in this disease. I guess the universe was in agreement with me, as I had a number of miracles that led me to her office in San Diego. I would never have been able to afford this trip, but as I have written on Face Book, and maybe here....3 angels came to me, and financed this trip. I have thanked them profusely, but here it goes again: You are my angels, my friends, and I only hope that I can pay forward someday the kindness and generosity that you bestowed upon me. This kind of generosity is really rare in today's world, but all of you stepped up and made my trip possible....not enough words to explain how I feel, and the deep deep gratitude I have for all of you. Bless you all!!!!!

So, my trip to San Diego to see Dr Herbst revealed that I have Dercum's Disease type II, and lipa-lymphadema. Both of these have no cure, and are progressive, however there are ways to slow down the progression. Diet, meds, suppliments and treatments are in my future. When I returned and told my primary care doc, he shook my hand and told me "well done" for sticking with it and coming up with a diagnosis he had never heard of. As one of my angels, Bev says...."mirror mirror on the wall, we are the rarest of them all"!!!

It does feel good to finally have an explanation for all this pain, fatigue, weakness and a host of other conditions that go along with this illness. However, it is also a diagnosis that is not easy to hear, as while it explains the symptoms, it still doesn't cure me. Dr Herbst has spent many years researching fat disorders but because it is so rare, she does not have much money funding her research. I would like to say now, that anyone reading this.....when my birthday comes up in August, I will be asking for donations to Dr Herbst and the organization FDRS (Fat Disorders Research Society), so if you want to donate to them at any time, that would be great! I want a cure!!!! Hopefully, on my birthday, I will be asking for donations, so please...save your pennies as I would love to donate quite a bit to her to help her further the research. She is an amazing Dr. She has dedicated herself to this subject. And, she is very nice and appears to go the extra mile for her patients. I feel so lucky to have her as one of my medical team.

Ok, so I am now diagnosed, and one of the things that I am supposed to do is reduce stress in my life. Well, that is not going to be the case for a while. My mother has been diagnosed with probable lung cancer in both lungs, and she is currently in the hospital with what they are calling "failure to thrive". (I say probable as she does not want any further tests, but the doctor said it looks like lung cancer on the cat scan.....and the diagnosis of failure to thrive is basically because she has given up taking care of herself. She was very dehydrated. I am hoping that now she is in the hospital she will get a team of medical/social workers around her that will help her) She does not want me to tell anyone about this, but sorry Mom, I need support too. I don't know what to do. OF course I want to be with her (she is in Montana), but to do that, I would have to pack up my house, to either rent or sell it. I don't have the energy for this. Along with that, I could bring my shih tzu out there, but not my beloved dingo. I would have to put her down. Hard decision. I know some of you out there would probably not think it to be a decision, but my dog has given me 15 years of unconditional love. My mother and I just started getting along about 3 years ago, and even though I would like to say that was unconditional, it isn't. I know, I am a horrible person for writing this, and I probably should just keep this to myself....but I am tired of pretending everything is ok. I won't go into the details here, but lets just leave it at my childhood and youth were not all that happy. I was very good at pretending, so if any members of my family are reading this....sorry. I have forgiven, and that is all that needs to be said.

So, what do I do? As I write this, I can feel the guilt, the anger, the sadness the emotional whirlwind building up. I am totally overwhelmed with the want to be there with her, and the reality that I am sick and do not have the energy or financial ability to go out there. I am sooooo stressed about this.

The trip to SD was very hard on me, although there was very little stress associated with this trip, just the travel took so much out of me. And then I come home, and get the call from my mother that she was just waiting for me to get home before she went in the hospital. I don't know why, but the mother that has been around, and I have been enjoying for the last 3 years....has reverted back to the mean mama of my youth. I find now I am basking in a whole lot of mama drama, and just do not know how to cope with this.

Of course, my therapist is going on vacation next week.

Well, I just realized that sitting here writing is causing me emotional and physical pain, so I will quit for now.

I wish I was an ostrich.....so, I guess I will continue to write, as that usually helps me to process and figure out what I need to do. Any suggestions are welcome....

overheard on my way home from the store...

2011-01-04T09:36:00.000-08:00

Well, it is the new year. I have always looked forward to new years with a measure of optimism and hope....but this year, I just can no longer find that within me. Only for my health and financial situation, in all other matters, I have lots of hope and optimism.....but I am pretty sure this blog will not reflect that.

Today I was food shopping when I heard from the other isle, "Honey, that is not a necessary food, we can only get what is necessary now" The isle they were in was not candy, or sugary cereals, or soda (this store doesn't even have soda).....the isle they were in was the bulk beans and rice. The child was wanting black beans...yes, the more expensive variety, but none the less....should not be looked at as a luxury item. I happen to know this family, I know they are struggling...and it makes me sad. Both mom and dad work, and rather decent jobs. Just a few years ago, they would be considered middle class by Vermont standards....now, their basket had a few items that looked like maybe it was for a soup. The veggies came from the half price isle. This family, like so many others, make too much for assistance, but not enough to live on.

I came across a friend who I had not seen for awhile. He told me about how he was in trouble because his parent became ill. He makes very good money for Vermont standards, but his parent was elderly and the pension they were promised was pulled away from them, along with the life long health insurance program. They had only medicare, but it did not cover all of what this illness cost. His parent has moved out of their life long home in another state, to move to Vermont and live with their son. This is causing a huge burden on the son, who loves his parents, but looks like the stress has taken a toll.....sad.

Of course, I also was telling people my story. It is also sad....and one I am sure I have written about so does not need repeating. I just put my last bit of money that I had (and really could not afford to as it should have gone for other bills) into my heating oil tank. The $700 I paid out, only put in 1/2 a tank, and is not enough for the minimum delivery for the next fill (which does not fill it)...then I don't know what I am going to do......I could go into the details of why this is so hard, and how keeping my thermostat at 50 to try to make my oil stretch longer...thereby causing me increased illness...but hey, you have heard all that, I won't bore you.....but it sucks.

And then, as I was coming home, I overheard a man talking on his cell phone. He was telling whoever in a very sad and dejected voice, "I am too old to be this poor". I just wanted to cry. I know how he feels.

This is America. The supposedly richest country in the world. How did we get here? My mother, who has lived a fairly financially comfortable existence, is now for the first time in her life wondering where she will go if she can no longer afford the retirement place she lives....she is 91. She has outlived her savings. That is too old to be wondering what is going to happen to her. I feel so bad, I can't help her. I get stressed over that. I get stressed over my financial situation........the number one way to halt the progression of my disease......live with decreased stress in my life. HA HA.

What are we going to do people? I know, many people say "but for God's grace, there go I", and shake their heads and feel sorry for those of us who are in these situations. I do appreciate prayers, lots of prayers.....but something else needs to be done. I write my representatives, both local and in Washington, I beg with them to help people like me. I just heard that our new governor has said he is afraid he is going to piss off those who put him in office, as what needs to be cut are many of the services. How can this happen? What is the plan? Who cares? I think that last question has a double meaning. I am asking who will help us, because who will care enough to take care of those of us who are too sick, too weak, too down trodden to fight for ourselves. But then there is the other meaning....I am afraid it is the one that has more correctness to it....in who cares? No one cares, no one will do anything.....

I think so many people are on the fringe of losing what they have, that they can't even think about helping out those of us who have already lost it. Then there are those who are hiding amongst their money, so afraid that if anyone knows they have it, it will be taken away from them (I don't think I personally know anyone like this, but I can imagine they are out there).

If I had energy, I would think about starting communes again. Or at least some kind of intentional communities made up of those who can do things for one another. On the days I have energy, I use them to help other people. I know there are those out there who have this same feeling. They would like to do anything to help feel productive. I go across the street to my coop and do a little volunteer work. That is one thing I do. Unfortunatly, most of the time I do not feel good enough to be reliable. However, the workers there are wonderful, and they allow me to come and do what I can when i can. This is the way it should be.

I know there are other sickos like me who would give anything to feel productive again. To give back, to take care, to pay it forward. Although I would say overall 2010 sucked, I would also have to say that I have been blessed so much by people I hardly know and their extreme generosity. That will always go down as one of the best things that has ever happened to me. So 2010 was not so bad when I look at this aspect of the year. There are good people out there, and I am blessed to know at least 3 of them!!! (I know more than that, but I am talking about the most recent miracle of friendship and selflessness). I only hope that I can pay this forward.

So, I am saddened. I want to do something. Please help me. Help me think of how I can support a society of people who are struggling. Good people. People who just had the misfortune of getting sick. Or, of having a large family they once upon a time could feed easily. Or of finding out that the place they worked all their life, and felt a loyalty to...has suddenly turned on them. This is happening all over.

So, I would like to suggest that you put aside those video games you got for Christmas, or reduce the amount of lattes and expensive coffee drinks you buy at those large chains....and put aside something for those who think that MacDonalds is now considered fine dining. Use your energy to dream. Dream of places and ways to help all of us who are in this boat. Write your Congress people and let them know you want the people of this country to be taken care of. (Don't forget the animals, they deserve our help too). Do something....please, just do something.

Thank you....

trouble a brewin

2010-11-20T12:33:00.000-08:00

A friend of mine noticed that I have not been blogging. He is correct, I have not been. I have been really sick. You know that things are just not right when you feel very accomplished when you can pay attention to what is on TV! I hesitate to write this, but I guess it is important. It is what I have been dealing with, and how I have been feeling....so, I even though it is more blather about being sick.....here it is.

I was doing pretty good. I had lots of energy, I was over doing it, so I was in more pain...but basically, I was doing better than I had in weeks. During this, I had a referral to home health still left over from the hospitalization in May. The social worker was hoping they may be able to come in and help with house work during the times I got really sick. Well, they couldn't do that, but they decided to come in and monitor the pain for a month to hopefully "help me on the home front".

The first thing they did was suggest a non-narcotic pain med to my doc. I have been on it before and thought I remembered that it was not a good thing. It is the anti-convulsant Gabapentin, that has been found to work mostly for nerve pain. I talked with my doc, and he had written that I couldn't afford to take the suggested dose because of lack of funds. That was true, as when he prescribed it before I was working and I had a huge deductable. So, I thought I would try it again. This was at the beginning of October.

The other thing that these nurses do, is count the narcotics in the house. I joked with the nurse about this calling her "the nazi pill counter". I have been known to take a few extra than prescribed from time to time, but I have always been honest about this and always told my doctor. So, it did not in the least bother me that she was doing this...until....

Toward the end of the October, the pill counts came up very wrong. I mean really wrong. I had no explanation for this. The nurse had me go see the doctor that night (I wish I could get myself in to see him that fast!), and I didn't have any idea why they were so off. In fact, I didn't even figure out how off they were until the next day. I didn't go back and count them, and when she said the numbers it meant nothing to me. (I am horrible with numbers, to the point that I am quite sure I have a learning disorder around them....but that is another story, and problem.....and don't even get me started on story problems as that was the math nightmare of the century when I was a kid...LOL). So, the next day when I counted them myself and looked at the calendar, I was very shocked to find out how many were missing. So, I did what anyone would do, I tried to figure out what happened. Did someone come in my house and steal them? Did I go crazy and toss them? Did I do something in my sleep? I didn't have any idea.

My doctor was basically kind to me. He suggested we blister pack the meds so I would know if I was getting up in the middle of the night....which was fine with me. (however the pharmacy wouldn't do it). Then, although I didn't make a connection....people started pointing out to me that I was forgetting things. I also started realizing that looking back on the month was like looking through swiss cheese. I could remember part of events, but not the whole thing. For instance...I remember putting on make-up for Halloween...but I do not remember handing out candy. I remember going to a friend's house for dinner, but I don't remember actually eating or what we had. The most shocking gap was not remembering that a family member was in a serious accident.

In the mean time, I agreed to go down to the Dartmouth pain clinic to start getting services there to try to get the pain better diagnosed and taken care of......at Home Health's suggestion. My first appointment was on Nov 1. After driving there and back, the pain in my back went from nothing....to about a 20 on a 10 is the worst pain scale. Not only was I dealing with the pain, but with the fact that yet another activity that I enjoyed....driving, seemed to be taken away from me. I was MISERABLE. The doctor there suggested another kind of narcotic, as they believe in something called rotation. They put you on different kinds of narcotic meds so the body does not get used to one kind. She didn't give me a prescription, but wrote a report to my doc suggesting this.

I called both the home health nurse and the doc because my back was hurting so bad, I really needed more meds for the breakthrough pain (for those of you who don't understand this....the narcotics I am on is long acting, then you get short acting to take when the pain gets worse than the ability of the long acting to work). But, you may have guessed....now that the pill count was so off, he didn't want to prescribe me any more meds. He wanted to wait for the report from the Dartmouth doc to see what she suggested. Finally, after a week, he got the report. I went to the pharmacy with the new prescription....and they, and no other pharmacy in the area carried it. I went mental.

I called my doc's office crying, but they ( I was talking to the social worker) would not do anything about it. They said they would order the med and it would be here in a week. I was not happy. I was still taking the old long acting narcotic, but it was not helping that much. So, I did nothing but lay on the couch and wish I were dead. (I was not suicidal, but I was thinking that death would be a good thing). And not only was I in pain, lots of horrible mind wrenching pain....but I was dealing with being called a liar. This, to me is almost worse than calling me the "C" word. I try to live a life of integrity, it is very important to me....and now, I am not being trusted.....

Finally.....after a week (a week ago) the new medication came through, and I took my first dose with a huge prayer......"please God, help this work well and give me back quality of life." On Saturday, it was beautiful outside. I was inside laying in bed, sweating, shivering, and feeling like I was going to die (and still wishing I just would). Years ago, I had been taking Methadone, and decided to go off it. I went into horrible withdrawals, so I know what that feels like....I was in withdrawal. I called Home Health, I called my doc's office.....to not much avail. Finally, on Monday I got in to see my doc.....which turned out to be really awful. Basically, he treated me like a drug seeking abuser. I had to pee in a cup, and worse yet...he did not believe me when I told him I had figured out why I had taken all those extra meds....

It was that new med that I had started in the beginning of October. A friend suggested that I look at all my meds and see if the side affects had memory loss (of course it was the narcotics she was blaming). At the time I said to her "yeah, but I am not on any new meds"......but, that was not true! So I looked up the side effects of Gabapentin, and lo and behold.....amnesia and memory loss was listed. It suddenly made sense to me....I think what happened, I would take the meds, but still be in pain a little while after...and forgetting that I had taken them before..take them again.......no wonder I was doing so well for a couple of weeks!!!! But, how scary is that? (and just for the record, I now use a medicine box so I can tell if I have taken them).

I told my doc, but he said it was just another theory like someone had taken them, or I had done it in my sleep. For the first time in the 10 years I have been working with him, he treated me kind of mean. I was so hurt. I HATE IT when people don't believe me. I also hate it when people who don't even really know me, who have been on my medical "team" for a month...seem to be in his ear with the theory that I am abusing or selling my meds.

So, I started looking at this. I realized how much people, medical professionals, friends, etc.....blame the narcotics on what is going on, rather than what may actually be going on. I have to say, I do this myself too. Possibly the most dangerous (or could have been) example of this was when I was hospitalized the first time in April. I was in kidney failure, which can cause hallucination and altered mental status.....but they said it was a possible overdose. Because of that, I was back in the hospital 2 weeks later, as they had got my kidneys working again, but didn't do anything to address the real reason they were failing. (I will also include here that the home health nurse told me that my doctor told her this story too. I asked her in what context, and she said the same thing I was saying.,...my doc was on vacation for the first hospitalization and the people who didn't know me thought I had been abusing the narcotics, although the drug screen came up negative) The next example....my doc has twice blamed the narcotics on my memory problems, when I know it is not the narcotics, it is the side effects of the anti-convulsants. I know this, as when I quit those meds, my memory returns, even though I continue on the narcotics.....but he wouldn't listen to this. He said he had proof in a report from another doctor I saw......it does say MEDICATION is causing the memory loss, but at the time I was on something called Topamax....aka dopamax and stupamax!

I feel like I am in a really horrible catch 22. The narcotics work, they give me a quality of life. They allow me to do things like stand and cook, sit for more than a few minutes, walk across the street. I don't know if I can live through a life without them. I am NOT psychologically addicted to these things. I don't crave them, I don't take them to get high, I don't do any of the addictive behaviours of trying to figure out how to manipulate the meds to get a high...like crush, snort..etc. I for the most part take them as prescribed. Even people who are my friends have become rather judgemental about them. That also hurts. If I could find something else that works (and it isn't like I haven't been agreeable to trying just about everything that has been suggested)....I would very gladly give over these meds.

So, I am about to make a decision that may be the end of me. I want to go off them. Not because I truly want to go off them....but I think it is time to see who I am without them. I think they have become dangerous. Not because of them, but because of people's attitudes, judgements, misconceptions, and predjudices.

In a way, I feel like I am writing my suicide note. Not that I am going to kill myself....I wouldn't do that, but I may as well be gone and away. I can't imagine that my quality of life is going to be at all good. I won't be able to sit long enough to be on the computer....driving will be out, walking will be out. I rather doubt that I will feel like talking to anyone. I know some people will say those are only fears, and that if I try to go off the meds...maybe it won't be that bad.....and I say.....it has been that bad when I am on them!! For the past 2 weeks, I have been on narcotics, not enough....and my quality of life had been for shit.

But, something has to happen. I have also been doing some research into doing this inpatient....not looking good for that. Since I am not a drug addict, I really don't qualify for rehab. There are some inpatient chronic pain clinics.....that are expensive and not covered by my insurance plan. I don't even know if my doctor will agree to this folly, but I guess we have some talking to do.

I am going to the spine clinic at Dartmouth to explore the cutting, snipping and burning of nerves coming off my spine to help with one aspect of the pain I am in. (I go in soon for a diagnotic injection into my SI Joint, if it helps, then they go back and burn the nerves in that area) So, maybe if I can get at least some of the pain reduced...in theory, that may help me cope with the rest. I am going to see their CBT therapist (which is what I used to be, so I think it is ironic when people think that I don't think this will help. This is their own assumption that goes along with the drug abuser theory, as I am sure many people say "that won't help".......I called them and asked when we can start.....not for many months unfortunatly...apparently this woman is world renouned and popular), so it isn't like I am refusing to exploring other methods of pain control.

I am tired people. I am tired of the pain, the misconceptions, the isolation, the loss of my old "life", and really the loss of me.....that this illness has caused. I don't believe it is the narcotics that has caused all this....but if you do....then you really didn't read what I just wrote...did you?

Treat No Trick!

2010-10-30T06:56:00.000-07:00

A friend of mine just said he would read an experience I put on FB on my blog. Now, he may have read the last one, and is trying to tell me that he did.....as he is my favorite token Republican in my life!! :) So, he may have not enjoyed the last blog......but you will enjoy this one!

I love this little village I live in. It is what American should be. We tend to really watch out for one another, and care for each other, and yesterday was a really good example of that.

I was over at our little food co-op, the local hang out for me. I love everyone who works there, and the atmosphere. There are usually members of the community shopping and we always seem to have time for a conversation deeper than the weather. So, yesterday I was lamenting the fact that I could not afford Halloween candy for the trick- or- treaters this year. I live on a very popular block and can go through $40 of candy easily. A few people were talking to me as I said this.

Later, I was laying on my couch and watching TV. I heard a noise at my door, and looked out the window to see a kid speeding away on a scooter. I didn't feel like getting up at the time, but later when I went out.....what should be hanging on my door, but two large bags of Halloween candy and a note saying it was from my 10 year old (I think) neighbor down the road!!!! HOW SWEET IS THAT!!!!!! I can do Halloween now!!!

I love Halloween in this town. I don't decorate, but I do love handing out candy and seeing the costumes. We have a Halloween Parade that is fun to watch. So, I was sad that I would have to hide in my house and pretend I was not home.....but not now! I also know that the family that helped me out, is not that much better off than I am.....so this is one humbling experience.

So, my Republican friend.....there you go! I suppose, this is really what should be happening in our world. We all should be taking care of one another, so the government doesn't have to step in....but I hate to say it...this is rare! I think though, if we are going to have to weather the upcoming storm.....We need to all take a lesson in this little village of mine. We do need to start taking care of one another. We need to realize those that don't have family or ways to help themselves, and be more proactive in reaching out to them. Maybe that is what this world needs, to get us "out of ourselves" a little bit.

I am sitting here thinking of an elderly woman who lives down the street who has asked me to come visit her. I haven't....I should. Maybe, I need to put my words into action....maybe I need to go visit her. I always think because of my disability "what can I do for anyone"...heck, I can talk! I can go visit! I can sign petitions to help the wild life, I can vote, I can be nice to the little kids in the block, as well as the not so little kids. There are many things I still can do....and I will. Will you?

So, much thanks go out to my little goblin candy provider, I hope your generosity has sparked anyone who reads this to pay something forward this next week. If you do, report back here or on my facebook page....ready, set....go!

Help the Wolves....please!!

2010-10-28T10:44:00.000-07:00

I am sitting here crying. I don't do this very often, so when I do, it is for a damn good reason! I am crying because I just got an e-mail from an organization I support which is Defenders of Wildlife. The email I got was asking me to sign a petition going to the Discovery Channel asking them to ban Sarah Palin's show about "her Alaska". One of the reasons this petition was started was because she has not only allowed but encouraged arial slaughter of the Alaskan Wolf. One way she encouraged this was by paying a $150 bounty on any left leg (I can't remember if hind or fore, but that shouldn't matter here), that was brought in. That is what has made me cry. I can't believe anyone can be so callas and mean. Look into the eyes of this wondeful wolf hybrid that is my neighbor, and tell me these beautiful animals don't have a soul.

I am from Montana, where the wolf was reintroduced into Yellowstone park. On one of my visits back to my old stomping grounds, I went back to Yellowstone and sat and waited and saw the wolves. They are so wonderful. I am kind of strange this way, but that kind of beauty and power, just gets to me....and makes me cry. I cried at the Dolphin show at the Boston Aquarium too. For what ever reasons, I feel so close to these wonderful creatures. All animals, wild or domesticated. Of course, sharing my life with a wild dog has kind of made me more aware of how special and amazing wild animals really are!!!

So, would I be crying if Sarah Palin took out a bounty on right wing fundamentalists?....well, probably not. But then, they can take up arms and defend themselves.....these animals can not. They were here before we are. How dare we think that they are encroaching upon our land. That is complete nonsense. They don't want to have anything to do with us. They just want to do what they do best...exist and make sure their species does not die out. They help our eco system.

I am currently watching a nest cam set in South Africa of an Eagle Owl. I thought the name of the cam was funny....as it is potplantowl. I was tuning in thinking I would see these stoned owls hanging out in marijuana plants, but oh no, much more sad than that. These owls are nesting in someones potted plant on their balcony, as they couldn't find any natural place to nest. Luckily, they picked someone who is just interested in putting a cam up, and showing us the irony of this. How many people would either through ignorance or negligence, destroy the nest?

I cry a lot over animals. I want to see them safe. I want to see them living their lives like they should. If you have a moment and want to do something little to help these wonderful creatures, please go to the web site of Defenders of Wildlife and look at the actions you can take.

One of these days I hope that I can sign a petition to get rid of all the idiots out there like Sarah Palin, but until then......

May I Be a Good Friend...

2010-10-25T23:08:00.000-07:00

One thing I have been thinking about is friendship. I am very lucky, as I have many good friends. Some, I have never met! I guess in years prior to computers, this may have been called "pen-pals". Now however, I have some very good friends who I chat on the phone with, and write emails to, and I consider them just as good of friends as those who are in my everyday life in the flesh. In fact, they may even know more about me than some of my real time friends. When my uncle recently died, I talked to my aunt who I haven't had much contact with in recent years. She told me that one of the qualities that I had that she envied a little, was being able to make friends easily. I guess that is true.

When I was a kid, I thought everyone was our friend. The guy that pumped gas, the store clerk, and the librarian. My father never knew a stranger. He also made friends easily. I suppose I learned that skill from him. The other thing I think caused this friend making behavior, is being an only child. I did not have sisters or brothers, I also did not have any extended family members that lived close, so I had lots of friends. I grew up in a great neighborhood, and there were kids my age in almost every house on the block. So, friends were always an important staple in my life.

Usually, I have always had many good friends, but one or two really close friends. Lately, I have been thinking about all the friends who have left my life. I am sad about that. Some died, some just faded away as our lives took different paths, and some left under stressful conditions. Some have gone away without any real explanation. Those are the hard ones. Actually, both of my closest and longest relationships ended that way. One was a thirty year friendship. We were closer than friends, really. To me we were more like siblings. I don't know what happened. Our lives did take drastically different paths, but it seems like the older I get, the more I want to rekindle this relationship.....but I wonder, can it work? If I can base a friendship on just shared memories of our crazy past, then maybe. But, when our lives are now so different, maybe it isn't possible to become close once again. It makes me sad though. The person who has the most history of me, is unavailable to me.

The other day I was explaining some amazing gifts some new friends have bestowed on me to someone. These are friends who I have met through the internet. The person stopped me and asked, "Do you have any real friends?" I knew what she meant, but I pondered that for a moment before I answered. Are these not "real" friends? They feel real. I suppose if we were in a room together, rather than on the phone or the internet it is possible that the "chemistry" would cause us not to enjoy one another's company.....but I doubt that. I don't have a sense of smell, so even if they never bathed and smelled horrible....I wouldn't care!!! LOL I could imagine a scenario where they were energy suckers and the boundry crossing would be difficult to handle....but usually, I know this just from talking to someone.....so I think, when and if we ever get into the same room...we will still like one another! So, yes....I have real friends, as they are not imaginary! (What the question meant was do I have friends that I go out and do things with....yes I do)

I had a number of these as a child. I apparently thought they were real. My mother told me that I almost had a break down one day when she slammed the car door shut on one of them! So, they must have seemed real to me. I don't remember this. I don't remember my imaginary friends, but I have heard so many stories that I think I remember them. The only one that no one knows about is the only one I actually remember. I wonder what that means? (If you want to do some arm chair psychotherapizing.....go ahead, my ego can take it...LOL)

My other closest friends.....my animals. Some would possibly say that they would not really be friends, but I think they are the closest friends, and the best friends I have ever had. All they seem to want to do is love me. How many of my friends can I say that about? I have some good friends, but lets face it....the human ones always have some kind of strings attached. That isn't necessarily negative...it is just the nature of us humans...

So, as I sit here tonight, and ponder the meaning of friendship, and friends....I feel pretty darn lucky. I have had, and currently have some amazing friends. Because I have lived in many places, I have also had the fortune to make all kinds of friends, learning about all kinds of cultures, beliefs, religions, and backgrounds. Luckily, I think I am pretty open minded and non-judgemental. I learned a long time ago that it is ok to agree to disagree about things. I have learned so much from my travels, and my curiosity of other people's lives. (Good quality for a psychotherapist huh?)

If you are reading this, you may be my friend...or maybe you just started reading my blogs recently. I want to thank all of you who are reading this, but mostly I want to thank all the friends and acquaintances I have had throughout my life. You have come into my life for a reason, and even if we ended our relationship on a negative or hard circumstance....I learned from you. I believe even those that we consider our "enemies" ( a strong word that I don't really think I apply to any of those who have been in my life, but it is 3am and my word choices are not as plentiful as they could be when I am a little less tired) are our greatest teachers. I truly love all my friends, past and present. I wish I could do something for every single one of you to show my appreciation of our walk on this earth together. Whether that walk was a day, or 30 years, you have touched my heart and changed me. I just hope my interaction with you was positive, or helped you grow in some way.

May all of us find friends that nourish our soul. May we hold onto our friends who love us, and let those who challenge us go with a prayer for their continued well being. May I be a good friend to all who come into my life.

Am I Depressed??

2010-10-09T07:52:00.000-07:00

I can start off by saying....NO. But, so many people
seem to think I am, or should be. Yesterday I had an interesting experience at my doctor's office. He said he declined my home health nurses's request for a DNR. I said "no wait, that is correct". He looked all concerned and said, "I have to explain this to you. If you are outside and suddenly drop, no one can touch you, even if you could be resucitated you will die"
" That is correct"
"But you are pretty young to want that"
"Come live in my shoes, and see if you want to continue living if something says it is my time to go"
At that, my dear doctor gave me stats to back up my thinking. I really think he was giving himself stats to be ok with me, at 54 years old, not wanting to be kept alive. I suppose some people would think that was coming from a place of depression, but for me.....I think it is the most sane and wonderful choice there is. I certainly don't want to be kept alive by machines, but really, I want to go when that first touch of the "death angel" comes for me. I think that will be one of my departed animals BTW.

I am not afraid of death. I don't welcome it, but I have lived a pretty event filled life. I have no regrets as I look back, in fact mostly I smile. I have had easy times and hard times. Right now, because of my health, I am having the hardest time ever. Sure, I find ways to keep myself happy. I am enjoying what I do have, but truth be told, I am not all that happy with my quality of life. I have learned to adapt. Another comment made at my doctor's appointment yesterday....
I said in response to a small political discussion we were in, "I pretty much quit watching news, I find that those CNN junkies I know are all pretty depressed. I know that the world has things that suck in it, I really don't need to be reminded on a daily basis".
My doc agreed and said that it gives him a feeling of being out of control, but it is really a mirage that we are in any kind of control at all anyway. I agreed, and said, "Try getting a chronic pain illness, or 5 in my case.....there is nothing like that to wipe away any thoughts that we are actually in control of much of anything. I learned that you learn to roll with the punches, you learn to be grateful of the good things, and you focus on what you have, rather than what you don't have."

So, yes, if you look at my life, you may think I am depressed. I spend a great amount of time inside, laying on my couch. I don't reach out to people like I used to, I don't attend social events. So, based on that, on a forced isolation...well, it could look like depression. But, I am so grateful for those friends that have hung in there with me, that have not given up on me because I can't participate in their social invites. I am very grateful to my medical providers who have hung in with me and know that I am doing my best to help myself feel as good as can be.

So, I am not depressed. I am just moving along the best I can, waiting for the day when the pain will lessen, the fatigue will lift, and my life will have a better quality. I still have some hope that this will happen. As you know if you have been reading this, I have been adjusting my goals so I do have something to look forward to. I think this is key.

So no, I am not depressed...quite the opposite, even if I did request a DNR!!

How Did I Get This Way?

2010-09-25T22:00:00.000-07:00

I have been thinking a lot lately, which can be a dangerous thing, but I have decided to share some of these meanderings through my mind. I have been mostly thinking about what I have. Well, let me be honest, it came originally from my dwelling on what I have not....until one day I was standing at the sink and turned on the water. Magically, it came rushing out. Clear clean water. Yeah, so what you may be thinking (or if you are regularly reading this, you may already know where I am heading), but there it was, clean, clear, safe, water. I could just hold a glass under the faucet, and there it was, water to drink. Amazing. How did I end up being one of the fortunate ones?

How did I end up being born in a place where this is totally taken for granted. I realized at that moment, how incredibly lucky I am. I am not walking 3 miles, to get a little bit of clean water to drink. I am walking to my kitchen sink. Then I started thinking about all the other things that I have that make me feel incredibly lucky. I won't bore you with all these, it is the same things most of you have. A roof over our heads, a car or at least public transportation to get from here to there, a telephone, the internet, wow. Really, how did I end up just plopping down in the middle of a place where things are easy. But yet we complain. Well, I guess I should not use "we", I complain. I imagine you do to, it seems pretty normal for those of us who have everything, to think we want or need more. I wonder what the person in Africa, who has to walk those 3 miles are dreaming about? Maybe the same things as I do. But, I bet there is a huge difference too.

Then I realized how lucky I am because I have done a lot in my life time. Possibly because I have never settled down into a family, or a relationship, I have had the freedom to do a lot of living. I have had so many adventures, that I can't even remember some of them. How lucky is that? I have traveled through most of these 50 states, 7 European countries, and most of Canada. I have experienced other cultures either through living with them, or being friends with a vast variety of people. I know what living in Appalachia feels like, where blue grass music was born. I have had numerous Native American friends and been very lucky to be invited into their culture (my mother was born and raised on the Fort Peck Reservation, which was just one of many times I was living close within this culture). I have done so many things that some people only dream of....walking on fire, shooting class 5 rapids, living in the 60's and 70's (enough said,,wink wink), living through 2 volcanos, 3 hurricanes, a few tornados, one major flood, numerous blizzards and ice storms, and a sand storm. I have met famous people, and people who should be famous. I have even attended an NFL game.

I have hiked in majestic mountains, walked across prairies and on beaches. I have flown in the skies in small planes and jets. I have seen the glaciers in Glacier National Park that are now almost gone. I have watched Old Faithful shoot toward the heavens on countless occasions. I have ridden in semi trucks, rode with a motorcycle club (gang really), lived in a motor home and a teepee. I have lived in very large cities, medium size towns, and a tiny little village. As the song says, "I've been everywhere, man".

Then there are the things that were not easy, but I still feel very lucky to have been placed in these situations...working with children with leukemia, people with Alzheimer's, teens at risk. I have been involved in various churches, a separatist lesbian community, practiced Buddhism, and have many friends who are witches who have shown me how to love the Earth and all it has to give us. I have been involved with a school for psychic healers, where I was there to help them learn by rating their readings/healings of me.

I have lived within the creative community of the arts and performing musicians. I was a starving artist, I have performed in bars, and for crowned heads in Europe. I have lived a life where money did not matter, when my father was considered quite wealthy, as compared to now (and other times in my adult life) where I am living below the poverty level.

I could go on, I could go on for hours....I am so lucky. I also feel very blessed by the people who have come and gone in my life. I have had long lasting relationships with childhood friends, and brief encounters that were all intense and lovely and full of learning opportunities. I have had amazing kindness shown to me, as well as cruelty and abuse. I have cried over lost loves, lost friendships, lost pets. But, I have laughed, and laughed hard and long. I am so very very lucky.

How did I end up being who I am? Nature? Nurture? I believe by being mostly open minded and non-judgemental (or at least I try), this has allowed me to take in all these varied and marvelous adventures in life. And, it is all an adventure, now isn't it? One of my favorite lines from one of my favorite television shows was by Ed Chigliac on Northern Exposure. I don't remember the exact quote, but it was something like "all we have to do is wake up each morning and we have the possibility of another adventure". I like that. Even now, even when my body feels like every single one of these past listed adventures has taken a huge toll on it....waking up each morning still holds numerous possibilities for a new adventure. I may not hike the Appalachian, but something else just as wonderful will come along. I just have to wait, and be open. My adventures are not over. I am lucky. Because not only do I have endless opportunities for wonderment and awe in my life.....I can turn on the water, and take a drink right from the tap. How did I get so lucky?

Entitlement

2010-09-17T09:22:00.000-07:00

I haven't felt like writing in the past couple of weeks. I guess because nothing has come to me that made me feel passionate, or angry, or happy, or whatever it is that makes me want to share my ideas with you all. But today, I got a post on FB that made me stop and think, you may have seen it. It is a pic of a youngish looking ER doctor, who is complaining because the person he is working on is covered in tattoos, has a lot of bling, smokes, and eats at fast food restaurants. He said this is what is wrong with our system. It isn't the medical system that is broken, it is our social system. Well, yes and no.

The first thing this brought to mind is when I was working, within a medical clinic setting where most people there knew I was on medicare/medicaid, a rumor was spread about my spending habits. Basically, someone overheard me say that I wanted an Iphone. It went from this statement, to my supervisor being called in to warn him that someone who is working and claiming to be on SSDI with medicare and medicaid is buying things like an expensive Iphone.

Ok, lets get real here; there are many things wrong with this picture! First, how me saying I wanted an Iphone, transferred to me going out and actually purchasing an Iphone was the first assumption that was just wrong. Next, the fact that anyone can tell me how to spend my money, is just wrong. Also, for those who get all paranoid and freaky about how can I be on SSDI and be working...yes, you can be on disability and work. They actually encourage it. So, what this brings up is: if you are poor, and you are using money that basically you worked for most of your life (I have been giving up a portion of my check since I was 16 to that fund), then apparently people around me have the right to monitor my spending habits. If I am living on a fixed limited income, well by golly, I had better look like I am poor. Nothing new and shiny for me! BTW, I don't even own a trac phone. You see, I can say I want something, it really doesn't mean I am going to get it.

But, this is a good example of how those of us who have had to swallow our dignity, to push away our pride, to become less than....because of something that is totally out of our control, has forced us into living a life we were not planning. Yes, there are those who abuse the system. There are those who have figured out how to screw the government out of money. We say they feel "entitled". But, isn't the example I use above just as bad? Why are people who are working "entitled" to tell me how to spend my money? Why should this be an issue in my work place? Why do they even listen to rumors in the first place? Why wouldn't they just come to me rather than telling my supervisor? Yeah, to me none of this makes any sense.

When I questioned the reasons behind this inquiry into how I am spending my money, the explanation was as follows: "I think it is because there are people here who are working really hard for their money, and to see someone who is on disability affording things that they can't, gets them upset"....ok, wait red flag, red flag..... First, and again....I don't have an Iphone, or any phone that is not connected to a land line. So, this should be a non issue to begin with...maybe we should start talking about rumors....but, that was not the case...the case was "people who are working hard for their money".....Oh, I guess that means because I am on disability, I am somehow taking it easy for mine? I remember working prior to getting sick. Work was most of the time enjoyable, fun, easy. I didn't think twice about getting up in the morning, showering, eating breakfast, and getting out of the door on time to drive to work. Well, since becoming sick and being on disability, just getting to work is more work that most people do at their actual job. I remember a few days during the winter, that by the time I walked through the snow, shoveled to get my car out, and got in the car.....I sat there and cried. I was too exhausted and too much in pain to even think about going in to work....but I did. Did I take a few more breaks that day? Maybe. But, just to be clear, that did not mean I was in some worker's lounge with my feet up, or chatting with co-workers. No, what that meant for me was that I just stayed at my desk and answered the phones, and did some paper work. I tried not to do any extra running around. So, I don't think that because I was on SSDI, somehow my job was any easier than theirs' was. In fact, I would say, I worked even harder for my money.

Why? Why would I do that, when all I would have to do for work is "run out to my mailbox". I have heard that one too. "Yep, that is her job, she just has to open her mailbox and laugh all the way to the bank." I know there is a perception that many people who are on public assistance want to be there. I don't believe this. I think if anyone was given a way to go back to work, or earn money in a way that was acceptable, they would. It is easy to look at someone on public assistance and think that they are the problem. I don't think "they" are. I think as long as we can look at "them", and think it is "their" problem, well then it can't be ours. It is an us and them thing. We are not in their shoes, that is because we want to work. "Look at whoosywhatsit over there, was on public assistance and pulled herself right up and out of there and is now working. If she can do it, so can wheresywhosit." And that is where the conversation ends. It is their fault. Or maybe it is the system's fault, it got people all used to depending on it, so it could be the system's fault. " Well, it is either the person's or the system's, but it sure isn't mine. I have a job, I like to work. I may not even like to work, but I do because I do not want to be a drain on society. I do not want to be one of THEM. And, what would we be if we did not have THEM?" I think maybe the answer to that question is easy to answer. We are them, and they is us. We say they think they are entitled to all this and that, and that is the problem. We feel entitled to judge them because they receive all that they feel so entitled to. So, we are all entitled. The meek shall inherit the earth. I think maybe, just maybe the "meek" are those of us who are living on public assistance!

It is so ironic to watch our culture. We don't like people who feel entitled, yet we put up on reality (ha ha) TV people who have lots of money and little sense. They become our heros. We think that it would be great to be just like them. We all want to have 200 + cars and motorcycles in our garage (Jay Leno). We worship those that can throw parties for 300 people each night in their mansions (Dennis Rodman and other sports heros). We are told if we work hard, if we follow our dreams, we can get there too. Every night there is another example of this put before our very eyes. Rappers/musicians who make it out of poverty and are dripping in bling and extravagance. They did it. Those that can throw away money are our heros. Politicians who help keep the very rich, the very rich....they are heros to some people. They promise that if you just act/think like them, you will be rich too.

I was thinking the other day about how companies used to take care of "us". You put in years of dedicated service, and the company would take care of you. The church would take care of you. Your neighbors or extended family would take care of you, if you could not work. Now, no one is taking care of anyone. No one wants to be a "them". So, in order not to be a "them" we have to keep all that we get. We have to buy things like Iphones that show that we are not a "them". And when one of "them" gets out of line and tries to look like one of "us", my God, get out the regulations that tells us how to keep them down. Humility is a good weapon, use that one.

So, this doctor, the one who is upset because he is treating a young woman who is poor, living on disability and has the nerve not to eat well, or at least quit smoking....well, she is the problem. Not him, he has to work with THEM. Good him.

Last night, I used up about 3 hours of my life trying to figure out how $80 in food stamps per month is going to allow me to maintain a healthy diet. Don't get me wrong, I am so grateful for those $80. I certainly can eat lots of beans and rice. And I will. But, I would like to have some variation in my diet. I searched the internet for hints on how to eat organic, local, healthy and the diet I am recommended to follow to reduce inflammation to slow the progression of Dercum's Disease. It is not going to be easy. Almost makes me want to throw in the towel and go buy some hamburger, and the cheapest most fatty at that. I can afford that, and probably get about 10 meals out of a pound. But, that isn't good for me. So, I have to work just a little harder to maintain a healthy diet. So, I am kind of getting paid for doing a job, I am getting paid to figure out how to stay healthy and not use up any more of this money they are "giving" me, so I won't be a "drain on society".

I know I get fuel assistance this year. But, what does that mean? How much will I have to come up with myself. I won't know until November. The thing is, I don't have any extra money to pay for fuel. So, how low will I have to keep my thermostat this winter, to make that heating oil stretch. Last year it was 55 during the day, and 50 at night. This is not good for my health. Being in the cold makes my muscles tense up, then it makes my pain flair. This causes more trips to the doctor, looking for those drugs that prove to everyone that I am just an addict. Yeah, I asked for this. And, I am entitled to this by God. Maybe the thinking is: if we make her keep her house so cold she can't stand it, she will by God get up and get to work, then she can stay warm!!

No, what I really want is a job. I want to feel good, to go out and feel useful. I want to help others, I want to do good things. But, apparently while swimming through the gene pool, I didn't pick up much that was very helpful toward accomplishing those dreams.....I am entitled, to all the judgement that keeps Them from becoming Us. or visa versa, it really doesn't matter any more....and I still don't have an Iphone.

My Big Grey Cat With Green Eyes, I love you.

2010-09-10T00:57:00.000-07:00

Today I took my beautiful cat, Indigo to the vet to have him put down. So, tonight, although I am more tired than I should be to try and write this, I want to pay this cat, a little tribute.

I was living in North Georgia, when I came across a flyer advertising kittens. I wasn't really thinking about getting a kitten, but the flyer was so catching. I called the number and went to the house. OMG. They had something like 8 female cats, all deliver about 10 kittens each at relatively the same time!! I had never seen so many kittens in one place, all just running around. It doesn't make for easy choosing, but I ended up with 2, Indigo and his sister a little calico I named Kahlo. (named after women artists, the Indigo Girls, and Frieda Kahlo).

I brought them home to my little cabin out in the woods, and realized that Indigo was not the sharpest cat I have ever had. He used to climb the walls of the log cabin, get up under the ceiling and then could not get down. I had to get the ladder out, and rescue him. This happened at least 3 or 4 times a day! Once they were able to go outside (all shots and fixed), they discovered that they could climb a tree off my deck that led to the roof.....where I would have to go get them at least...you got it....3 or 4 times a day. Oh would I get mad. Inside was one thing, but this tree/tin roof thing..well...that was a little different. Yes, it was like a cat on a hot tin roof, and it wasn't like a cat on a hot tin roof...it WAS a cat on a hot tin roof. I would have to go get him, because his little paw pads would get burned up there.

One day, it was cool and overcast. I decided to see if he could come down on his own. I left him up there for 2 days. I put some water up there for him, but I figured he would come down when he got hungry...nope not him. He would stick his tiny little head over the end of the roof and meow at me with lots of angst. So, I crawled up there and rescued him once again.....this went on for months.

The other fun little game we played, was how many times a day we can step on the kitten. This poor little guy, at the time had grey eyes, grey fur, on a grey carpet in a cabin with poor lighting....luckily he never got hurt, but I would get major scratches on my legs.

What saved this little dear one, was his purr and his love. This little kitten was pure needy love. He would come over to me, to anyone...and want to show his love. He would purr and rub his head all over me. He would then settle in for a nap in my lap. I would sit for hours, reading with my little "man" (the only one in the house). He was a lover boy.

The next adventure that we had together was my move back to Vermont. I had a pick-up with a cap, and he and his sister made that their home for about 2 weeks. The place where I was staying had dogs and other cats, and they were afraid for my cat's safety. After two weeks, I had to get them out of that pick-up. I was driving up the road one day (way back in the boonies) and found an abandoned shack. My friends knew who owned it, so we got permission to keep the cats there. I would go up every day, bring the dogs (my dogs) and visit them, feed them and such. Everyday, Indigo would meet me sitting on the door step like he was waiting. (which I am sure he was). One day, his sister didn't show up. I found out that she had decided to adopt another family, as she was not a camping kind of cat....or a much smarter kind of cat. However, Indigo stayed in the shack, (which was kind of amazing, as there was no way I could block it off to predators, I just prayed a lot!!!) I don't remember how long my poor cat stayed in the boonie Hilton, but too long for sure.

I finally found a place for all of us to land, and there we stayed for 2 years. This however, was inside and with another person who loved cats....had 4 of her own. Indigo could go no further than 2 adjoining rooms in the house. However, I believe after the camping experience, this didn't bother him too much. He was becoming quite the meatloaf cat, as he couldn't really exercise much. I think at his most, he weighed around 22 pounds.

Next we moved here, to the house I bought. It was perfect for him. He (and my dogs) could let themselves in and out on their own. Indigo, I think because he was raised around dogs, was much more "dog-like" than feline. When I came home from work at night, he would run to meet me just like the dogs. He was never picky in what he ate, if it was in his bowl, he would eat it. Sometimes when the dogs would bark at things, he would look at me with a funny look on his face, and meow at the top of his little kitty cat lungs....I think the funny look was he never quite figured out why he was doing this.

Once, and I mean once....he caught a mouse. Now, this is an old farmhouse....so, this is not for lack of having all the hunting material he could possibly ever want.....he just didn't want. I used to joke that the mouse was a kamikazi...and jumped right into his mouth. That was a big day around the sub-dude ranch.....so named for him. (not a typo, it is a play on words that I used to use as my answering machine message). He was one big, subdued hombre.

So, we lived quite happily for the next 11 years or so. I noticed that his eye was runny, but he seemed fine in all other aspects of cat health. Then he started sneezing and coughing. But the scary thing, was his, in- the- middle- of- sleep- yowls. I thought he was dreaming. But, now his nose was running. Again, he did not seem sick, but about 2 weeks ago I took him to the vet. She found a lump on his gum, but thought maybe it was an abscess, and gave him an injection of anti-biotics. She told me if that didn't work, and if the lump did not shrink or the other symptoms clear, then it was most likely cancer, and warned that there was not anything that could be done for that.

The day after I brought him home, he became obsessed with being on me. As I stated, he was a very loving cat, and always wanted to sit in laps getting petted, but this was different. If I went to the bathroom, he was jumping up on my lap. When I was in the kitchen, he would reach up and put his paws...ummmm claws....into my leg and try to just hang there. I spent the entire day giving into his needs. We slept on the couch together all day long...and night. He would look deeply into my eyes, and I could feel that he was giving me a message. The next morning when I went to feed everyone, he was no where to be found. This was extremely odd. I looked everywhere, and called out for him...but he was not there. A day and a half later, he showed up at dinner time. I put some food into his dish, which he normally gobbled down like the dogs, but he just kind of licked it. He used to always come to me when I called him, and where ever I would pat my hand, he would lay down in that spot; but now, he would just lay on the back of the couch, close to my head, and sleep. I would invite him onto my lap, but he would just look at me in the eyes for a few seconds, then turn his head away. (He was my heating pad for my sore thighs and knees, he always would lay there if I would pat those areas, and purr and keep them warm for me).

A week went by (I think). He would eat a little, but would still not engage with me. Then yesterday, suddenly he started wheezing. Not only that, but it sounded very "wet". Also, his whole face looked misshapen. His nose was kind of pushed over to the side. I decided this was it. I called the vets office and made an appointment. I called a friend and asked him if he could come dig a grave for him in my yard. And at around 3pm on 9/9/10 my beautiful grey cat with big green eyes crossed over the rainbow bridge.

The vet's office was very good about how they set up the room, and about giving me time to be with him. We positioned him in his favorite sleeping pose, all curled up with his paw over his eyes, and wrapped him in muslin. I then put him in a pretty purple cotton pillow case, and brought him home and buried him.

But, the story doesn't end there, because if you know me, you know there is a coincidence...a spiritual show if you will.

Last night, a friend who came over to say good bye to him, questioned me about doing this as she thought it wasn't time. Of course, that put all sorts of doubt into me. The vet tech who gave him the injections looked him over after the first injection that calmed him, and said she was sure it was time. I won't bore you with all the reasons why, but it did make sense to me....but there is always that doubt. As he was laying on the table (which they had draped with fleece so it wasn't a cold sterile exam table (nice touch I thought), they left me alone with him for around 5 minutes before they came in with the final injection. Of course, I used that time to shed many tears, pet him, and hold him, and tell him how much I loved him. (which I had been doing for the past week too). I also called in my spirit guides and helpers to assist him with his transition. I told him who I thought would be coming for him, and to look for them.

On my way home, I decided to take the back road, as it is beautiful and less traffic. I was still crying. On the radio was jazz ballads which were very soothing. I asked the guides to give me a little sign if he was with them. I was listening to a song that sounded familiar, and though to myself "Isn't there a song that has the word Indigo in it?" I thought about putting in a CD of the Indigo Girls (his name sake) but that just didn't feel right. The announcer came back on air and said that the song he had been playing was "Misty", he then said "and now I have a beautiful rendition for you of a song played by Thelonius Monk, it is "Mood Indigo".

I knew, they were with my cat. He was safe and being greeted on the Rainbow Bridge.... they told me so. Until then, I had been crying. When I heard that, I kind of gasped, almost ran off the road...but then smiled. He was ok.

Some people say after they put down a pet, they see them. That hasn't happened to me with Indigo. But, all day today, I have heard him. I hear him purring, which he continued to do up until the very last seconds of his life on this Earth, in that beautiful, soft and silky kitty cat body.

So, rest in peace Indigo, our fourteen years together were good. I and your dog buddies will miss you, and we loved you very very much, but I am very happy for you......Happy First Day in Heaven Mr!

With thanks and gratitude to Amy at ORAH, and those that helped him transition.....you all know who you are.

slip and fall

2010-09-05T23:02:00.000-07:00

It's been awhile. I want to write, but every time I try, nothing comes out. I think between the pain that I have been experiencing, and the recent death of one of my very favorite uncles, I just haven't had the energy to come up with anything to write about. Fall is almost upon us, I suppose that could render some kind of reflection, or thoughts about what is to come. I used to love fall. I loved getting new clothes, or at least getting the old clothes out of storage (and that $20 bill that seemed to have been forgotten in my coat pocket), and dressing in a way so I could be warm in the morning, but cool in the afternoon. I did like the way the air felt lighter, crisper, and the big sky in Montana was always so blue. Yes, I loved fall back then. But now....

I should love it, I am in Vermont, home of the king of falls, the showboat of all of the falls in all of the states, the stereotypical image of fall. It is beautiful. The first time I saw a mountain side ablaze with the near neon blast of color, I actually welled up. I had never seen anything like it. I haven't grown complacent about those colors; Mother Nature still amazes me, awes me, and makes me realize that I am one lucky woman to be able to bear witness to all that she provides. But....she also provides that thing...that stuff....that horribleness that one can only enjoy while young, agile and healthy. That stuff that is cold, and when you are not watching will bury your car....the terrible "S" word....snow.

I used to love snow. I was even called "the Snow Queen" amongst friends. Snow was fun in every way. Fun to walk in, especially when it is really really cold and the way it squeaks when you walk on it. It is fun to play in and with, snow forts, snow balls, snow sculptures. Not to mention skiing, sledding, ice skating...all the things that would make me plead, beg, pray for snow. But the best, that first real snow storm. How it makes everything quiet, and white and clean. How beautiful and sparkly it is in the sun, and the most beautiful shade of periwinkle blue that shows itself right before sunset. Yes, this is all beautiful, and marvelous, and wonderful, and blah blah blah.......

Now, because I am an old person (only in body mind you) that has been forced to walk like some web footed fowl with arms out to my side, rocking from one foot to the other in very slow small steps, I hate snow. I don't like that it is slippery. I don't like that is cold and wet. I don't like that if I fall, I may very likely break my ass, or leg, or arm, or hip. It is too much fear. I don't like fear. Even the cold that once felt refreshing and invigorating, now seems to have found the entrance to every joint I have on this body, and it makes them stiff and they creak and grown. No, I don't much like this cold and snow business.

Not to mention the hassles this stuff brings to me. I have to shovel, not only the side walks, but my roof! I can no longer do this, so I have to become some beggar woman asking neighbors to please help me. Then, and this is the worst.....there is the heat bill to pay. I start stressing about this in the spring. Living on a small fixed income is not conducive to a stress free fall/winter. It isn't like I can just put on more layers and huddle around a little electric heater...oh no...I have all manner of pipes that can freeze and burst....I know, it has happened...a lot! So, not only do I not have the money to pay for the heat, now add the heat guy, and the plumber. (oh and if I am really nice, and feel like I can expend it...a few dollars for those helping with the shoveling). So, whatever money I may have for things like food, clothing, entertainment (yeah right) now goes to winter maintenance......and I would like to add, this means sitting in a cold and drafty house with the thermostat turned all the way up to a balmy 50 degrees. Ah yes, ain't this the life?

So dear readers, at this point I am almost sure I can hear you all, in unison saying..."Get the hell out of Vermont". Makes sense doesn't it? But wait, then I would miss stuff...like that first snow flake landing on my tongue. That first big snow where all you can do is cuddle up inside and sit and watch the absolute beauty of the show Mother Nature is providing. There is also a community that comes with the white stuff. People helping others with shoveling, or just mentioning the fact that we weathered another great storm. There are more community dinners and potlucks, filled with delicious things like hot soups and stews. So winter is not a dark, lonely time of the year, if you don't want it to be.

But, I still do kind of dread it, and welcome it all at the same time. Maybe it is the survivor in me...ahem, the stubborn survivor in me...."I'll tough it out, I can get through anything!" Maybe it is just that I am a Northern woman, and that is where my blood just wants to be. Maybe it is that I can't fathom having to pack up and move.....maybe there is some kind of magnetic force right under Vermont that grabs us, and won't let us go.

Running with that theory...I may be onto something. I have noticed that there are a very high number of like thinking people in this State. Mostly it is people thinking good thoughts, caring thoughts, you know...love your neighbor kinds of thoughts. Maybe that white stuff and the dropping thermometor keeps those out that can not feel that same magnetic pull. There is a joke about that, the weather keeps away the undesirables. Maybe?

So, for at least one more year, I will bitch, moan and complain about the weather. I will absolutely freak out because I won't know how I will afford fuel oil. I may slip and fall on the ice and snow, or hurt my back shoveling. I may not see very many people, or go out to do as many things. But, I will still be here. I will every once in awhile marvel at the beauty. I will snuggle down into my comforter and blankets, gather my animals around me and smile as I drift off to sleep. (Think about it, when you freeze to death, you basically just go to sleep.....I had heat stroke once...it wasn't pretty!!!)......but no, I just mean go to sleep all toasty warm in my bed.

So, let the fall begin. The seasons change and so do I, and just like the winter with it's harshness and beauty, I find myself sorting through the winter in my soul, with it's harshness and beauty...there is something to be said for hibernation.

Happy Fall Everyone......

Creativity is the Word..

2010-08-24T07:54:00.000-07:00

Good Morning to everyone. I haven't written for awhile, partly because I have not been feeling good, but also because I have been trying to work around that not feeling well. So, I don't really know what is going to come out today, I decided to just do a little stream of consciousness writing....it may be interesting???

So, one of the topics I have been wanting to write about it creativity. I am so thankful and grateful that I got this gift times ten. I believe creativity is what has pulled me though this illness. I seem to be creative in almost everything I do. The other day, I was feeling pretty good, and on the days I am feeling good, I like to use one of my creative talents, cooking. So, the pictures above are a plate of my fried green tomatoes, with prawn and raw cow milk dill cheese. I love to have fried green tomatoes in the summer. My version is a little more healthy than the traditional, and they are if I don't say so myself, to die for! I don't deep fat fry these, I saute them in olive oil. I used cracker crumbs, made from rosemary crackers. They were delicious. I am trying to eat a diet that concentrates on reducing inflammation. It is basically the Mediterranean diet. So, part of my creativity is used in cooking meals that are good, nutritious, and will hopefully help the pain decrease. One of my new favorite things to do, is to think of a dish such as bagel and lox, and figure out how to use the basic ingredients to come up with something completely different. For this, I used brown rice and quinoa as the "bagel", and into this I mixed smoked salmon, dill, red onion, capers, and a few sun gold cherry tomatoes cut in half. Then I make a sauce (cream cheese), with olive oil, lime zest, lime juice, and a little creme fraiche. I also add just a tiny bit of agave nectar. Good for me, and good to eat too!!!

So, cooking is how I use my creativity, especially on the days I feel pretty good. I also included a photo of the Plainfield Co-op where I do my shopping. I feel very lucky, as this photo is taken from my front door. The Co-op is the blue building. My other goal I may have mentioned in other blogs, is to do a little exercise every day. I used to have a goal of hiking the Appalachian Trail, then I down graded that to the Long Trail, then I thought well maybe Spruce Mountain (a local mountain peek, and nice hike), and now, I try and I am not always successful to walk to the co-op everyday. While this is sad for me, to watch this progression of the illness, I am very grateful that I am still walking to the co-op, but even more wonderful, is that I have this beautiful place, filled with healthy, organic, local food right across the street from me. And what is even better than that, are the workers who I get to see every time I go there. And, the community members that shop there are also pretty great. It is my touch with human contact each day, and I think that is important. So, I feel very lucky to have this little business across the street. I also feel extremely lucky that I can still walk over there, without a walker!!!

The reason I haven't been writing is a good one. I have been finding creativity and partaking of it's healing potions. I have also been creating art, and I even got out the mandolin and played with that a little again. I have a goal, and that is even if this illness is trying to take me down, cause me pain in every little place in my body...well, I am going to fight back with creativity. It is my weapon of choice. I gladly take up a little creativity and mix it with a little creative energy and come out with the wonderful elixer of pain distraction. It doesn't always work, another reason I have not written is I have been laid low with pain. But, I don't want to talk about that. I am tired of that subject, and tired of that feeling.

I have also been visiting my lovely owlbox. Unfortunately 2 of the owlets have died. I wanted to do a tribute to them in this blog, but I couldn't get the picture I wanted to use to load. I did include it on my FB page. But, another pain distraction I have been using is taking screen shots of the owlets. This is so much fun, as they are like little prehistoric looking, feather covered softballs with tiny little wings....and such humor. I get hours of pleasure doing this! I hope to share some of these here with you, and especially on FB.

So, there you have it, again...not a great piece of writing (I will once again just to write), but if you are someone who is in pain, who feels like life is over because everything you dreamed of doing is no longer within reach, well, I am hoping you too can use some creativity to make this illness and/or chronic pain a little more bearable. I hope you too can cook up something that helps you feel better (yes bad pun), and that you can find something to do that makes you feel like you are still learning, and giving back to this universe we live in! Namaste

disability awareness

2010-08-19T16:58:00.000-07:00

I just had a most unpleasant experience, although it didn't directly involve me. As most of you know, I am a faithful follower of a family of barn owls in San Marcos, CA. This is a web cam, and on the side of the cam window is a chat. I love this place, as I watch the owls which are at times very amusing, always entertaining, and educational. I have met some wonderful people in the chat, some I know will be lifelong friends. These people come from all over the world, there are millions watching, and quite a few that chat. Usually, the chat is fun, funny, informational, and for me very supportive. There are a few rules we are asked to follow in chat, one being no caps, as that is considered yelling.

Well, here in lies the rub. I know, from being on other sites where people with disabilities frequent, that using caps is acceptable for the visually impaired. Tonight, a person (we don't know if people are male or female if their screen names do not imply, so I am just going to say she) came on, saying she was new, was visually impaired and wanted to know if she could use caps. Let me also explain here....there are people we call mods who are the people who make sure that people are following the rules. They regulate and sometimes "police" the chat room to make sure that it remains "g" rated, and friendly etc. Then there are the MODS, who are the chatters, named MOD for Molly Obsessive Disorder. Ok.....

So this person asks if using caps are ok, and a few of the MODS or chatters answered with: This person is lying, and is an attention seeking troll, as if they could not see, why would they be in a chat room. or if you can't see, why do you need to cap only yours, that does not make sense, you should know what you are typing. or and this one really got to me....."we are not a regular chat, we are family, and if is a choice to be here" OMG!!!!!

First, just basically....these MODS who responded in that way have no say over the rules in the chat room anyway....it is between the mods and the person who posted the simple question.....that being said:

I am sooooooo upset. This is just another example of how people with disabilites are treated every day. I am upset with myself too, as I just basically said that those comments made me sad, and upset, and should not have been made.....but then I left. I just felt like if i stayed in there, I would end up getting kicked out. I know I would have started a chat war, and I don't want to do that. I did go to Molly's site on FB and write about it there. And I am writing here. Why are people so insensitive? Why can they not see that what they are basically saying is: we don't accept you, because you are different. Where is the love people? where is the love?

I know, I am more sensitive to this because of what I face everyday. I actually had someone tell me that I didn't look like I needed my disabled parking plaquard. I got out of my car, the person looked at the plaquard and then me, and said..."Are you using someone elses car? I answered no. Then he said..."well, then you must know someone with a disability". Yes, I tried to explain it to him, but he just shook his head and walked away. I already wrote about the pharmacist.

I go onto the owl web site, because it is a great distraction from my pain. I love watching the owls and chatting to people all over the world. It takes my mind off of my life, my pain, and helps me laugh and feel good. Should not people who have visual problems be afforded the same benefits? Just because someone, somewhere, decided that all caps in a chat room means yelling.

Once again, I am not writing something that is a wonderful piece of literature, it is just a rant. But, I hope that you read this, then go out and take this rant into the world. Do something that helps people become aware of the world from someone with a disabilites view. The world is hard enough to get through. Compassion. We need so much more of this. Is it possible to teach it?

I wonder if those chatters realized what they were saying, or if they are sitting there smuggly thinking that they smashed another troll. HOw can anyone be so judgemental? My heart is hurting....are there any pain killers for that?

Never Heard Of That?

2010-08-15T06:15:00.000-07:00

Ok, another blog that is basically a rant, as I have to write about this or I will just wallow in it, so may as well get it out.....I can't sleep. I have had sleep problems for many years, but this is a little bit different. Yes, no sleep can make for some interesting thoughts and behaviors. Sometimes it is even funny....like when you fall asleep while writing to someone in chat.....but it isn't all funny.

I have these lipomas all over my body. The ones that hurt the worst are on my upper thighs/hip region, my rib cage, and my abdomen. These things cause excrutiating pain. They burn, sting, feel like a deep bruise, and basically don't let up. They are worse when they are first forming. Then, they seem to come and go, or more realistically, they swell and hurt and then go down and don't hurt as badly. But, they are a literal pain!

The worst, and what is causing me to come here and cry, is trying to sleep. I can not find a comfortable position to save my life! I have always been a side sleeper, almost all my life....I can no longer do this. When I am so totally exhausted that I do fall asleep, I tend to roll onto my side and then YOWZA....I am wide awake because it feels like I have been stabbed. The lipomas in my upper/outter thighs (hip area), are very painful to the touch.

I also have these little pockets of fat filled pain on and around my lower spine. (where arthritis is also present). So, laying on my back is also one exercise in futility. I can sometimes find a partial sitting up position to be somewhat comfortable. This is the way I can usually fall asleep, and why I tend to fall asleep while I am on the computer, or watching TV. But, and maybe I should say butt.....there is also tailbone pain. When this strikes, it absolutely takes my breath away. It feels like vice grips are squeezing my tail bone. I don't know if this is caused by lipomas or if it is something else, but this pain would have me running to the ER if it lasts much more than an hour....luckily, it hasn't, or has responded to pain killers.

Ok, so I can't sleep on my side, or back...well......the lipomas around my rib cage, and lower (mostly) and upper abdomen area are also screaming their little fatty tumor heads off. The other day I was visiting yet another specialist, this one the gastroenterologist....and he was doing his exam and said "Oh, it feels like you have a hernia, has any one told you that?" I told him I thought it was a lipoma, as they are everywhere if he continues to feel around....he did, while I bit my tongue and winced. He just looked as me with a strange kind of puzzled look on his face. I told him what I think these are, and he said "Never heard of that". Well, whatever, but these are what keeps me from sleeping on my stomach.

The other day, I went to a PT. I thought maybe a combination of pool therapy, and a walker may get me able to walk more, get a little more exercise. So, in order to do that, I was subjected to more poking and prodding. He feels all these lumps, and says "Hmmm, what are these?" I tell him and he says...."Never heard of that". I tell him that I know that strengthening muscles are usually the answer to help with pain, and that may be the case here....but what really hurts are the lipomas in my thigh area that seem to be pulled downward by gravity when I am upright and walking. He agreed that the pool is the best place, and wants me to hold off on the walker. I am ok with holding off on the walker, and I LOVE pool therapy.....but, will it make the pain of the lipomas go away? Not sure, and of course, since he had "never heard of that"...how can he answer that.

To make a long story short, since I have been in the hospital, I now have 3 rare illnesses. One may have cleared up following knee surgery a few years ago.....that would be great, as apparently PVNS is difficult to get rid of. My diagnosis after being in the hospital are some kind of myositis, and rhabdomyolysis. I don't know that much about the latter, but the former is....you guessed it...rare! But, most of these specialists have heard about this diagnosis.....

Ok, now here comes the diagnosis that no one knows about...Dercum's Disease. It is the fatty tumors, the lipomas, and possibly inflammation in the fat cells. I wish it would be easy to lose weight and make it go away, but it doesn't work that way.....so, since no one really knows what it is, no one knows how to treat it.....no one is coming up with any way to help me with it....

There is one doctor in the US who researches and understands this disease. She is in San Diego. I am trying to figure out how to get to San Diego to see her. It isn't easy with no money. But, where there is a will, there is a way.

But until then, I guess I will continue to toss and turn trying to find a comfortable way to exist in this world....yes, I didn't say sleep, as it is not just trying to sleep, it is trying to live.....I toss and turn even when standing up! I will continue to have to toss away and turn down invitations to parties, get togethers, movies, etc.......I will continue to have a social life that is mostly on the computer and phone. (thank God for those friends who have stuck by me, and who call and keep in touch with me. I am an extrovert, I like to be around most people, this forced isolation makes it difficult to remain positive and content in my world. The adventure of never knowing how I am going to feel each day, makes planning anything in advance almost impossible).

Until then I will continue to try to forget about those comments, those experiences like the one at the pharmacy...because the only thing I have found that makes my life a little more tolerable is narcotic pain meds. There are two kind of responses when people find out I am on narcotics....either they hold out their hand, or they become judgmental. That makes me want to cry. (Again, I thank God for those friends who understand, and do not challenge me, or suggest a better way to deal with pain, as in the many years I have been dealing with this, there really isn't much I have not already tried. The odd thing about this illness I have, different approaches work, for awhile, then seem to quit. I have tried naturopathic, chiropractic, homeopathic, energy healing, many many different kinds of medications, meditation, physical therapy, prayer, art therapy, talk therapy including CBT, EMDR, narrative, and other approaches, and massage.....whew....and I am not sure that exhausted that list).

So, I will continue to try to educate, to explain, to ignore, those who can't possibly understand what it is I am going through, because they have "never heard of that".

another art piece/blog completed...even while sleeping...

2010-08-13T11:53:00.001-07:00

I finally finished another art piece. This one took me forever to do, and I am sorry, but trying to get a good photograph of this one, with my little digital camera, well......

This is another yarn painting, except for the most part it is done with 2 strand embroidery floss!!! So, it took me quite a while to finish. It is about 6" X 2 ". I coated some mat board with bee's wax, and pressed the floss into the wax. The bottom portion where the tree routes are growing are small delicata beads.

Now, I am hoping I will find the time, energy, and renewed enthusiasm to explore the oil paints.

I probably should write something pithy or interesting, or at least a little entertaining here today, but I am just too tired. I have been pretty active, at least for me in these past couple of days, so today, I am just allowing myself to do whatever it is I feel like doing.

I just made a very good grain salad. This has taken me 3 days to make, not that it is that difficult but mostly because I am a space cadet. (Ok, I can call it fibro fog, but let's just go with space cadete). First, I was going to make brown rice and quinoa for the grains, but I ended up throwing steel cut oats in the rice maker, rather than the quinoa. So, I got creative and decided to make a breakfast cold grain salad. So, I went over to my lovely coop, and bought some local blueberries, and mixed the grains, with the blueberries, and a little agave syrup. Yummo!!! So, that mistake has provided many breakfasts to come....

Yesterday, I made the rice and quinoa, but i just didn't have the energy to complete the rest of the salad. What I had the energy to do, was go to the physical therapist appointment (no walker for me, we are going to try the pool first, which actually I am very happy about)....He said he understands my reasoning that with a walker I would be able to get out more, and then have more exercise, but as I told him, I much more enjoyed his reasoning that maybe the pool would strengthen me more so I can walk further with less pain. I am down with that!!! Then I had to go pick up my "camp site" from the previous night of meteor watching in a friend's backyard. (It was so dewy out, that everything got really damp. So, I snuggled down into the sleeping bag to stay dry and warm, basically slept most of the good watching time!!!), But, between the PT appointment, and the picking up of the "camp"....I was exhausted, so the salad had to wait....

Then today, I woke up feeling pretty good (well, when I say woke up, ummmm, I fell asleep for about 2 hours, after talking on the phone for about 2 hours in the middle of the night, and then hanging out with my little owl friends for another couple of hours.....but, I finally decided to finish my yarn painting, and my "deconstructed bagle and lox salad" Because I am trying to follow a diet that is good for reducing inflammation (and hopefully pain), I have had some fun being creative in the kitchen. (I always have been a good cook, but now I am cooking with a purpose)....so for those of you with DD...I think the following dish is close to the diet prescribed by Dr Herbst.

I mix brown rice and quinoa, add tomatoes (just a few grape tomatoes because of the night shade thing), red onion, dill, capers, and flaked smoked salmon. I add a sauce of lime zest, olive oil, agave syrup, and lime juice. I also put a little bit of creme freshe in there. Again yumo!!!

So, today I have just about used up all my spoons (energy) with these activites....so I am about to return to take a nap.

In fact, while attempting to proof this, I have fallen asleep and woke up 3 times, with the laptop open and waiting for me to wake up and hit send.....sorry, I know this is poor writing, and possibly disjointed....i shouldn't have, but I did just erase the gibberish that I apparently typed while sleeping.....sppppoooooooooooooookkkkkkkkkyyyyyyyyy. I was going to write a whole blog about creativity, how it happens in all areas of my life, even cooking....but I will save that for a day when I am awake and have fully functioning brain cells (well, fully functioning in a way that will make me sound like I know what I am writing about)...LOL. So, back to dream world with me. Enjoy if you will, the art and the salad.....more later!

madder than a wet crip!

2010-08-07T10:07:00.000-07:00

Excuse me dear readers but here is where I am going to merely vent and rant and rage against judgmental people!!!!

As many of you know, I have been having problems with lots of pain, and it has been increasing lately. The last prescription my doc wrote, he wrote for less than I had been taking of the pain meds. So, I called and they said to take what I had been taking. So I did. Of course that meant that I ran out earlier, but my doc just wrote me another script to cover that.

This has happened before, and I have taken this script to the pharmacy I have been using for 10 years, and the kind pharmacist who owns the business always fills them. However, he has his fill-in pharmacist who is clearly prejudiced against those of us on narcotics. I have had trouble with him before, but today took the cake. I will also say, because I worked in a place where people with pain came, I have heard similar stories about this pharmacist....

So, today, my legs are hurting so badly, that I am using the dreaded cane, and even that is not helping much. So, when I went to pick up the prescription from my doc's office today, I asked for them to write an order for a walker, so when I go for my P.T. eval soon, they could fit me for a walker. This is way beyond my capacity for thinking that I am ok, or what may be called denial. I hate to think that this has progressed to the point that I need that much assistance walking, but it has. It sucks, and I don't like it at all. So, I was leaving my doc's office, with script in hand, already feeling yucky because I finally admitted to myself it has come to this point......but, relieved that I was going to get the meds that will help the pain some...and....

This pharmacist comes out from behind the counter, sits down next to me and says "when did your doctor say you could have more, because he wrote this for 3 a day", to which I said "what do you mean?" He just kept looking at me, with no further explanation. I said, "yesterday I guess." Since that is when the script was written. He said, "I can't fill this, you should have plenty left if you just were told yesterday that you could take 3 a day". I said, "no, he told me I could take them weeks ago, but he wrote the script yesterday as that is when I was going to run out." The meanie pharmacist then says..."oh sure, now you are changing your story, there is no way I am going to fill this." I got kind of upset and said that the regular pharmacist fills them with no problem, and he says "I doubt that". I said "call him". He once again said that he was not going to fill this, and it wasn't his problem. I got mad, but I thought was fairly well controlled, and said, "You know, I hate to say it, but you have a reputation for doing this, and when people are in chronic pain, it is hard to hear this and have to argue with you". He got mad and started telling me that he didn't have to listen to my opinions about anything and that I was out of line. It just got worse from there. I didn't know what to do, I asked him to call the doctor's office, but of course he would not do that. He said to go across the street to the other pharmacy. All I could think about at that point, is how much it was going to hurt to have to get back in my car, and walk to the very back of another pharmacy. I left, but realized that there was maybe a way he could see that I was telling the truth.

As I walked back in the store, he came walking out and met me with his arms crossed against his chest, and with a very stern look on his face. I said "if you look back in your records you will see that the prescription before this said take 3/day." he disagreed and said, "no, it says take 2/day"...I said go back one more, and you will see it says 3/day.

He told me that I had now changed my story yet again, and that now I was raising my voice. I told him that I would be calling the owner of the business and reporting him and letting him know that he had unfortunately lost a good customer because of this guy's attitude. He came back at me with he had already reported me as a drug seeker, and it was clear to him that was what I was, as if I was truly in pain, I would not be so upset. He kind of guided me toward the door!

I went across the street to the other pharmacy, where I did have to walk to the very back of the store, which by then I was almost in tears from the pain. The pharmacist asked me if he had checked the insurance and if that was who turned me down. I said I didn't think he had, as he really didn't have time to check. I also told her, I had issues like this with him before, and had come to this pharm and they filled them with no problem. As I expected, they filled it with no problem.

Ok, long story.....but, I just want to point out here...and I know that many of you who read this blog have pain issues, so it is like preaching to the choir, but it is bad enough to have to endure this kind of pain everyday. I don't think we should have to also put up with professional's attitudes and personal prejudice. Because of his attitude, I am in more pain than I was, so now the pain killers that I got will not work as well. Not to mention that emotionally, I am very upset, so that does not help my condition at all. why oh why do we have to be treated this way? (I think that is a lyric).

I am writing a letter to the business owner, and CCing it to my doctor. I will explain why he has lost my business, and that I think anyone who has chronic pain should not go to this pharmacy. It is sad, because the man who owns this business is sweet and kind and the techs that work there are also very kind. It is just this one judgmental man, who claims if he would fill that script they would take his license away. I told him that didn't make sense, as my doctor wrote it....to which he says....oh doctors write all sorts of things they shouldn't. (yes, I will put that in my letter). Huh? they have license too! And, I know for a fact, that if it was written in a way that was not allowable, my insurance company would have refused it. And way beyond any of that, and what is what this all comes down to....is my integrity! I know I have not abused this med. I know that it was taken as prescribed...or at least as my doc knew I was taking it.

One thing about me that I know, is I hate to be falsely accused of anything. It makes my blood boil when that happens. I am sure my voice did raise a little, but it was not because i was a drug seeking addict who was lying and changing my stories to try to get drugs I was not supposed to have......it was because I am a person in non-relenting, retractable pain, who could see that I was going to have to take even more painful steps to get a medicine that I need, and was rightfully prescribed. In one fell swoop, this jerk (sorry I was going to try to be above board in the blogging of this event) not only called me a liar, but also my doctor. I bet, this guy has a God complex. Well, in my world God is loving and kind. This guy is a prejudicial, biggoted, judgmental jerk! So there!

the bed intruder

2010-08-06T08:12:00.000-07:00

If you haven't seen it already, go to youtube and watch the video of a young man who's sister was almost raped, until he came into the bedroom and chased the intruder out. This video has gone viral, and not only that, people have used it to do songs and comedy routines. The man in this video is from what looks to be a housing development in Hunstville, AL. He is black, and is not shall we say, well spoken. What he is, in my mind is someone who is emotionally charged after doing a good deed, some may call a hero. But what I think gets lost in all this, is the reason he was on the news in the first place, a woman was almost raped. That is not funny.

I find it even more interesting that the number of opportunities I have had to watch this video on FB comes from men's pages. On each one, I have taken the opportunity to write my take on this video. One of the men who posted it, put at the top of his, "you have to see this, it is funny". I watched (just the news bite, not the resulting songs etc) and became ENRAGED. Why would anyone think that rape was funny? Most of the responses on these postings agree, and come from all women. One woman said she thought that it was just about creativity and there is too much seriousness in this world, and we need to lighted up, and realize it was just humor. I still fail to find the humor in this situation.

Another person who posted the video, also posted the response from NPR which reports that this young man who was in the video has turned this into a power moment for himself. The authors of this article agree, that if you took this same situation, put it on SNL and used actors, would it be funny? They think not, they think there would be public outcry to as they put it "excoriate" it from tv land. I agree. They also interviewed some people who pointed out that while this young man was maybe not the best public speaker, and some feel was exploited by the news station, his impassioned statement was done without swear words, and other stereotypical "urban" discourse. The comments posted to this article were great. Most agreed that maybe the news station deciding to broadcast this, or the resulting viral web videos, and parodies, brought out something unintended, it allowed this young man, and his sister to give voice to a social condition, that many of us turn our head to. No matter what position you take on this, whether it be from a social/racial/economical viewpoint, it brought it into the light of day.

My response on both of the FB pages, who were posted by men, was to thank them. Yes, I thought the video was horrible in that it was supposed to be funny, but at least it gave us an opportunity to do some old fashion consciousness raising. Back when I was the director of a rape crisis center, we always said that men where the only ones who could truly help to stop rape. We invited them to start their own programs to help men help other men in an attempt to stop this horrible power abusive act. In the video, the young man says and I am paraphrasing "snatch up your sisters, daughters, wives, mother, and husbands, cuz everyone is getting raped out in here"....it is true, it affects everyone. Not only can men be raped, but if they ever love a woman who was raped, they are affected.

I still can not see how the offshoots of this video can be seen as creative. I will admit, I haven't watched them. I read that there is one that is done well, and with taste and shows the heartfelt plea of the young man, to find the "bed intruder", but to think any of it can be funny, still breaks my heart. I have said here many times, I love to laugh. I find humor in almost anything...but not this. Human suffering can be looked at through a humor lens, comedians do it all the time. Sometimes, not in very good taste, sometimes in a thought provoking way...but this....no, just not funny. I think, or at least I hope, the majority agrees with me on this one.

A Year Older, and Wider...no that isn't a typo LOL

2010-08-02T03:59:00.000-07:00

So, it is over. My birthday. Another one under my belt. It turned out to be quite nice. A friend called and we went to a local restaurant for brunch, and then walked over to the farmer's market. I spent much of the rest of the day on the phone with friends and family, and reading all the wonderful birthday wishes on FB, and a couple other sites I participate in on the world wide web! And finally, a big surprise....I was chillin' on the couch about to fall asleep, when someone knocked on the door. It was a couple of my neighbors, one who made home made chicken veggie soup, and the other who made cupcakes for me!!! What a nice surprise that was!!! So, a day that I thought was going to be spent alone, turned out to be filled with love, well wishes, and nourishment of body and soul. I feel lucky!

So, I am another year older, and as they say....wiser. (One can only hope)! But, like I wrote in the title, wider. Partly I am talking about the cupcakes, and the brunch and my own little treat to myself yesterday, a pint of Ben & Jerry's......yes, that will certainly make me "wider", but I also mean it in another way.

I am hoping that as I get older, I continue to grow. I hope that I can widen my views on what is happening around me. I hope that the way I treat people grows each and every day to push out anything but loving kindness. I hope to broaden my awareness of our cultural differences, political views, spiritual paths, and know and honor that there is a grain of truth in each of our perspectives, and it is that "melting pot" that makes us such an interesting landscape. And what I want to widen to as large as it could possible grow is my love and compassion for all sentient beings.

What i know is going to continue to get wider, and what I wish I could widen my acceptance of, is my hips...LOL. You see, I am sure some of you reading this will say, that is easy, watch what goes in, and expend more energy than that......well, yes.....but, for those of us who have fat disorders, we know, it is not that easy.....so, I hope to widen the research and acceptance of those of us who are struggling with these illnesses, and the stigmas that go along with it.

Ok, and finally....what I have been trying to widen, is my view of who I am. I am not who I dreamed of being, I am not who I planned on being, and I am not who I want to be. So, who am I? I am someone who has had to figure out how to be fluid and flexible with an illness that is taking away all my preconceived versions and visions of me! So, in my post birthday packing for the next trip around the sun....I have packed only one major goal.

I want to have an art show by this time next year! There are many lessons that could come from this goal, so I think it is a good one. Like for instance...will I allow myself to buy some of the materials I need? Or will I do what I usually do, and decide that the money should go to other aspects of my life. No, this year, I feed my creativity. I hope that my creativity widens to take over my life. Many have said to me that my healing will come from my art. It is time!

So, here is to a year of widening an aspect of me that I have kept rather thin for awhile, my creativity. And hopefully, for my next year's birthday, that of the double 5, you will be attending an art show. Hmmm, I wonder if I should book it now?

54 years ago...

2010-07-31T21:17:00.000-07:00

Ok, it is here, the dreaded birthday. It isn't that I mind getting older, that has never been an issue for me. I think it is that I feel like I am supposed to be surrounded by friends and family, or do something special, and that just isn't going to happen. In and of itself, that doesn't bother me at all, but it is just the IDEA that is supposed to happen is what bothers me.

So, I think I want to spend a little time remembering when those kind of birthdays did happen. I used to always have fun and do special things on my birthday. Some were good, some were not. My 50th birthday was probably the worst one I have ever had. I won't go into the details, as too many people were involved in that, but it is one that will always be in my mind.

For many years, I thought it was important to do something adventurous on my birthday, so I have fire walked, rafted down class 5 rapids, and got a tattoo....just to name a few.

One birthday, I did something that probably few people have ever done. I was born at 1:17am. At the time I was working in a psych unit of the hospital where I was born. The thing that makes this kind of interesting, is....the day room of the psych unit used to be the delivery room. So, at that time, I went down there, unlocked the door and went in there and sat quietly. I can't say that I got any strange feelings, or memories....but I thought it was kind of cool. Just the experience of it.

Many of my birthdays included partying into a stupor, so while I would love to, I can't even tell you what I did. The first one I remember is my 16th birthday. I used to have a Rambler station wagon, where the seats folded down to one long "bed". I think there were about 10 of us that piled into it and went to the drive in theater. "Clockwork Orange" was playing. That was the night I watched a friend of mine, who was brilliant, change. After that night, he started talking like the characters in that movie. It was scary. I also don't think I will go into the details, but I think I witnessed a mind, interrupted that night. The "establishment" (or anyone over 30) tried to say it was drugs.....I think we all knew it was something much more serious than that, but that was the easy thing to blame. It was sad.

The drinking age was 18 at the time, and on my 18th birthday I happened to be in Germany with a concert band tour. It was run kind of like the Army, with no one allowed to drink or smoke. Luckily, the people who were on this trip who were there to "watch over us" were my friends (there were many who were younger on this trip), so the chaperones and myself all snuck out to a bar and I had a few "lemon wodkas" and a whole lot of cigarettes, and lived to tell about it. The threat to us was if they caught us, they would leave us in that country and we had to find our own way back. It was fun, a little dangerous, so I guess that fits into an adventure! Just a little aside...Lorrena McKennit (sp?) was a member of this group. She was in the tour choir. (She is famous now, we all knew she would be).

My 21 birthday, I kind of remember. It didn't mean as much as it does now. I was living in Dallas, TX and was being terribly abused by this guy I was living with. I decided to "escape" and return to Montana for the summer. I went back to the bar I used to work in, in Bozeman, MT, and spent it with my friends from there (mostly bikers). In those days, we used to say we would die for each other, and that we would never loose touch......I have no idea where any of them are, of if they are still alive (we lived a rather risky life in those days).

Over the years I have spent my birthday with different people in different ways. When I was living in Georgia, I met a woman briefly one day in a coffee shop. I noticed her earrings and mentioned that I liked them. From there we connected a few times on the computer (the internet was just getting started back then). I barely knew her, but we went to Lillith Fair on my birthday together. It was fun. I kept wondering how I was spending a day that was supposed to be with good friends, or family with someone I barely knew....but, I was never one to stand on ceremony.

In recent years, my birthday has usually been gathering a few friends to go out for a meal together. Last year, although it wasn't on my actual birthday, a friend treated me to a concert, and this year, as I think I have already written, a friend paid for an art course for me. These were both very generous and wonderful gifts.

But, this birthday is different. I haven't had the energy to arrange anything. I tried calling a few people to see if they wanted to go out to eat tomorrow (well now it is today), but I didn't tell them it was my birthday, I just didn't want them to feel obligated.....so, I guess I am spending my birthday alone. Is this a sign of getting older that I really don't care?

I gave up years ago of caring if I got presents or cards. I am not that materialistic. But I always enjoyed company. Now, even that seem unnecessary. I guess it may also be one of the "side effects" of this illness. Having fun is something that makes me pay in pain and fatique for days afterward. Maybe it has reached the point that I would rather spend even my birthday doing nothing but resting, as the consequences are so painful.

I guess on some levels this makes me sad. Did I ever think that I would become a person who was ok with spending a birthday doing nothing? Me? The party girl, adventure seeker, wild one.....I guess it took a major illness to tame me, but here I am tamed. In about 30 minutes, 54 years ago I entered this world....I bet there were hopes and dreams for me. I bet none of them came true. I have heard this statement twice today (in different ways), but basically:

If you choose a path, and don't realize that it may not be the one you are on, you may miss that which you are offered that just may be where you are supposed to be....

I wonder, is that what has happened? I certainly can not look back and say I am sad, or regret any of the amazing years/experiences I have had in my life. I can only look back and wonder how I got where I am now? It isn't the path I would have thought I would be on, nor one that I hoped I would be on......but, here I am, and I think I am pretty good at keeping my eyes open for whatever this may be leading me toward?

So, I am hoping this next trip around the sun reveals to me the reason I have had to leave what I thought would be my path, behind. I hope I am set on the path that leads me to the purpose I know I am here to do. I am also hoping that maybe there will be some new characters that come along to guide me, play with me, help me along this new path. There already is, and I am very excited about that!!! (you know who you are...he he)....So, Happy Birthday to me, and I wish that this be a year of healing, not only for me, but those who join me on this path of the 54th year of life! namaste

Is it an accident that God and dog are reversed?

2010-07-27T19:52:00.000-07:00

Here they are! My furry little friends. The cute little wolf hybrid puppy is a neighbor, but all the rest are my little lovelies! So let me introduce you.

Keefa: she is on the upper left. This is the dog that I call my soul mate, not only call her that, she is that. She is a 14 year old Carolina Dog, aka American Dingo. If you would like to read about her breed, Google "Carolina Dog" and look for the article from the "Smithsonian". I am writing a book about how we met, and how we have tamed each other. Keefa was a wild dog, mistaken for an abandoned puppy, and we have been on a spiritual path together. She has helped me realize how important it is to be kind and gentle, to not push too hard, and to figure out how to help her live in a world she doesn't always understand. (hmm, and isn't that what I did when I was a psychotherapist?) I am almost certain that she was abused by a neighbor of mine. I will not go into this, as it was pretty horrible, but helping her get through that experience and trust even me again, was heartbreaking. Anyway, someday, maybe you will get to read the whole experience, as it is special.

Sasha: Sasha is the wolf hybrid puppy. She and her human were walking by the house when I was taking pics of mine, and because she is so cute, I decided I would run out and take a picture of her amazing blue eyes. She was my next door neighbors dog's puppy, one out of 6. So I have seen her since she was weeks old. A couple of the other puppies live close to here too. I think they are so beautiful, and the mom and these pups are the sweetest dogs.

So, they are there side by side, because both are wild dogs, who have come into our lives to teach us. At least I believe the wild ones come to us for a reason. Mine was truly wild, but supposedly all the dogs in the world, come from both these dogs. They are the original canines. And we, the humans saw the potential of making them "ours". Or, maybe they the wild ones, saw the potential to make us their project! What are these beautiful creations that have been put on this Earth? If nothing else, I think the lesson they teach us is loyalty. We, yep us fellow humans, have asked these guys to change their ways, and to come to us, and live in our world. Wow, what a gift this is! And, I believe it is now our duty to care for these beauties. That may be to simply treat them kindly, feed them, and love them. But, the other way, is to respect them and their story and what they come to tell us. Then and finally, the other way is to care for those that are still in the wild. Living the life that they came to life. I don't know what is going on with the Dingo's in Australia, but I do know some about the controversy over the wolves in Yellowstone Park. I do kind of understand the sheep ranchers concerns who were losing their lambs to the wolves, but I think I am voting for the wolves in this case. They are letting us share their land. They were here running free and doing their thing before we came to encroach upon their territory. So, I put these two wild dogs, side by side, to remind us....our wild sides are good. We need to listen to them and to know that we too can run free......but then there is the other side to that, what we have done to these wild ones......and that leads me to the next pics....

Mika: OMG, isn't she cute! This is my baby who is an almost 14 year old Shih Tzu.....about as far from a wild dog as you can get. Can you believe that this little tiny dog, came from the wolf, the wild dog? I once sat in front of a display at the Smithsonian Museum, that mapped the transition from wild and free, to tiny little lap dog....but who also had a place in assisting humans to make it in this world. I call her, my little ambassador of love. While Keefa, had to overcome many obstacles to live in the human world, this little one was loved and cared for since day one. She too came to me in a way that showed me it was "supposed to happen", but the lessons I have learned from her have been very different. Even though she was a little one, she seemed to have no fear, while her larger housemate was filled with fear.

I put the picture of the other domesticated animal, the cat (Indigo) basically just to show how little Mika is. Of course, Indigo is a big boy. When the EMT's were called to my house a couple of months ago, Indigo made himself at home on top of one of their pieces of equipment. The EMT who was attending to me, lifted up the bag where Indigo was sitting, and said "I appreciate cats of substance" I thought that was funny. I took Mika to get professionally groomed for the first time ever today. I usually do it, but realized that I could not physically handle this any more. So, that is why she has a bow around her neck. I am not the kind of human that dresses up their animals!

Ok,my friends. This is a blog that really has not a lot of meaning. Unless you want it to. I titled it in a manor that could stimulate some thought. I sometimes see God in my dog's eyes, actions, and behaviors. Jesus teaches us to love one another, to hold no judgement towards one another. Well, I think that dogs can teach us that easily.

The other day I witnessed something that gave me pause (paws) to reflect about my own behaviour. I watched a couple walking down the street with a dog on a leash. This couple was pretty obviously low income, and possible had some challenges mentally. They were dressed rather oddly, and both were quite dirty. I was sitting in a car, waiting for my friend, so I just sat and watched this couple and their dog. I also watched the people around them. The people that walked by, were seemingly either dismissive of this couple, or appalled by them. The couple would look at people and would smile, but NO ONE returned that. Most would look the other way, and would make sure that there was quite a lot of space between them and the couple. At one point, they stopped walking and sat down on a stone wall. The dog stopped, and looked at them, wagged it's tail, moved very close to them, and licked them on the hand and face. Then, a dog that I could see no human companion anywhere, walked up to check out the couple and their dog. After the dogs did their thing, the new dog turned it's attention to the couple. It wagged it's tail, it let them pet it. It looked quite happy and content.

I was thinking while watching this scene, or listening in my mind rather, to the song by Joan Osborne...."what if God were one of us?" I don't know, but I do think that everything we could learn about loving one another, about loyalty, and non judgemental behaviour....well, could be learned from our Canine friends. I don't think there is a coincidence that God and dog are such similar words!

Hmm, just read back through this, and realized it is pretty much well, not writing I am happy about, but I don't really care......I am tired, so I should have waited, but basically, I just wanted you to see my happy little family. These little creatures are who I find so much comfort from. I so enjoy sharing my life with them, and I sure hope visa versa! I know we all think our animals are the cutest and most special.....I am odd, I don't. I think ALL animals are special. They all help us live a better life in this world, as long as they are treated well by us. So, quit reading this now, and if you are lucky enough to share your life with one of these kinds of God's creatures.....go thank it!

Have's vs the Have Nots, which is which and who is who?

2010-07-26T14:09:00.000-07:00

Well my friends, I hope this finds you happy, healthy and wise. Oh ok, at least one of them. I should probably put wealthy in there too! I am at least two of those, I will let you choose. LOL

Not much really happening that made me want to rush here and write about, so today, it may just be a rambling bunch of words, thoughts, and ideas. Which could either be interesting, or boring...lets hope for that first one.

Well, I made it though yet another dental crisis. My father had the same issues. His teeth were great, no problems, no cavities...then bam.....they started falling apart. So, I guess once again, whilst swimming through that gene pool, I scooped a heapin helpin of teeth set to fall apart after age 50. But my friends, here is the really cool things.....dentists just ain't what they used to be! I just had a tooth almost rebuilt from nothing, as half my real tooth fell out, the other half was an old filling. But, there she was (very nice new, very young dentist) creating a new tooth for me. I am sure in the "olden days", that would have been a pull or a crown. So, I am very thankful for all the new fangled dental mojo. Of course, she did say that it is possible this won't work, and I will end up needing a crown......well, yes, which means that it would be nice if I were a "have" in this world, but since I believe I am now an official "have not".....no crowns for me! So, lets hope the newly created tooth, does it's thang! I had to cancel my second cleaning of the year, as I just used up all my benefits for dental.

Speaking of the "haves" and "have nots", I am totally obsessed with Anais Mitchell's new CD "Hadestown". It is based on the myth of Orpheus, Eurydice, Persephone and the crew. It is about poverty, and selling one's soul to get what they have, and keep what they have got. The most powerful song (in my opinion, but it is my blog, so of course it is my opinion), is "Why We Build the Wall". If there is ever a song that has reached me on a primal level about poverty and the "haves and have nots" it is this song! It also speaks to us about what this new world we live in, full of fear has done to us! I would suggest you go to Youtube and try to find this song, just give it a listen, and see if you are as affected by it as I am. I saw Anais sing this live, at a benefit concert (she lives locally, but sings globally now, as Ani DiFranco discovered her), and I can't remember the last time a song effected me so greatly. All my little hairs were standing up to attention on my arms, and I actually started shivering, and had tears in my eyes! This CD has Greg Brown sing as Hades, and his voice is Tom Waits- like, so it is pretty powerful.

On another subject, I once again found myself in a discussion about Spirituality last night, in a chat type situation. I would not suggest trying to have a serious deep conversation by chat...LOL It is kind of hard. It made me realize that what I have been trying to say all along, is that I just don't make reference to Bible verses, but I believe I still say basically the same thing. It is, to me, like I didn't go to formal school and read all the reference books, I just observed what is around me. So, I think I will say that I come from the school of hard knocks, as far as my spirituality goes. Does that mean I am less "spiritual" than those who read the Bible and can quote passages? I don't think so. Part of what made me think this, is when I was in a discussion about the person who sent me the email, about the prayer that ended up heading another direction. The person I was "chatting" with, is a friend of the person who sent that email, and was instructing me (and the other's there) that her spirituality is "right on". To which I fully agree. But, because she can quote from the Bible, does that mean she is any closer to God than I am? (disclaimer here, the man I was talking with was not inferring that, it just got me thinking) I believe there are many out there who would agree. Well, I have known some people who are not therapists, but who are much better listeners than many therapists I know. They have this natural, innate ability to guide someone through their inner pain. Does that mean that they are "less than" those that have gone to school to learn the lingo? I don't think so. It does mean that person is not allowed to go out and call her/himself a psychotherapist (maybe a life coach). Well, I am not going out there and telling anyone that I am a Spiritual leader, I am not saying I am a minister.....but, I am saying that I think that somehow, I have learned from the world around me....that Spirit lives within me. Is that a better explanation? (I will admit here, I have part of my mind on what I am writing, and the other is listening to the "Hadestown" CD! LOL Right now Ani DiFranco is singing...such a voice she has!!!

And, just to make you dear reader feel like you are on some kind of thrill ride, here is a change of subject that is totally random (maybe, kind of like the house of mirrors, you just don't know now do you?)....tomorrow, my lil shih tzu gets professionally groomed for the first time in her almost 14 years of life!!! I am so excited for how cute, snuggly, soft and good smelling she will be. I just can no longer do it myself. Just another thing that has left my tool box of things I could do for myself. I can not afford this, but I know how miserable she seems to be. Her hair feels like mine after 2 weeks of not washing it (yes, I do know how this feels, unfortunatly just recently when I was so sick, I couldn't get the energy up to wash my hair). So, things to look forward to....

There we are. Things are scaled down in my life. I am feeling like this is one of the biggest splurges I could ever do. I am excited to do this for her, and me. How many people in this life take this kind of thing for granted. It is more a chore, a task to click off on their "to do list". It is a have/ have not kind of thing. So, while poverty sucks, don't get me wrong....I do think it has taught me to appreciate little things, like a clean, good smelling dog. I also know, that I take clean running water coming out of a tap for granted, and there are plenty out there who have to walk 3 hours one way, each day to get questionable drinking water. So, in that case, I am a Have.

I have gone from being a quite Having Have, and here I am now, being a kind of fringe Have Not. Being a Have was easier! But, did I take the time to truly appreciate every little thing? NO! There is something in this life to a kind of "struggle". I know back in the mid 80's I was working/directing a non-profit. Those of us who were working for a similar cause all came together and worked with one another to get the word out, and to beg for money (as that is basically what non-profit admin does). I moved away for awhile. I returned and found an interesting thing had happened in my abscence. All the work we had been doing paid off. Literally, as there was now a large pot of money to draw from for this cause. What I noticed however, was there was no longer a sense of working together, What I found more than ever, was everyone trying to get a bigger piece of the pie than the next one. WTF? Where was the working together? Where was the solidarity in the struggle? Hmm, it seems they sold their souls to ummmm Hades? They built a wall, all around themselves to protect what they had, and to keep out the have nots. It was such an illusion however. From outside that wall, it was pretty easy to see what was happening, but those inside the wall were lured to think that if they kept working hard to protect what they had, to keep out those who needed....well, I think they kind of lost all sight of what we were trying to do in the first place. Sad really.

Maybe I should from time to time, just check in to see what life is giving me. Am I using my gifts that have been provided to help others, and assist those who have less than me? Or, am I using everything I have to keep those out? To hold onto what I have, because it seems meager. I don't know, I would like to think that I fall into the category of those who continue to see and use my gifts, and not wall them away so other's can't get to them.....but, I know that when you are in that wall, it is hard to see outside. I think this may also be reflected in the spiritual wall that could be built by those who "have" and those perceived as "have nots".

But, today I have a new tooth, tomorrow I will have a cuddly dog....maybe life is good? So, out of the qualities I was hoping for you today, health, wealth, happiness and wisdom which do you have, and which is important to you? Which do I have? Choose carefully, and and watch out for Hades!

OMG literally!

2010-07-23T13:13:00.000-07:00

There is magic afoot! Something is currently going on with me, that is causing lots and lots of tears. I haven't cried this much in years, or maybe ever. The thing is, it is not all painful, sad tears, or even happy tears.....these are deeper, much deeper, like I am weeping out some universal spiritual substance.

I won't mention names, although if you are reading this, those of you who I am about to write about, you will know it is you.....but there has been some "miracles" going on in my life lately, and I think it is about time I write this down. I think with some of this mind, mood, body, spirit alteration comes pain. Maybe that is what some, most, all? my pain has been about lately. It is kind of back to the liver theory, of a couple of blogs prior to this. I know that I am deeply spiritually connected to this cosmos. I am not going to give any kind of label to what this believe system is, because to me it is not a belief. I think for it to be a belief, I would have had to be taught it. I think this just comes into me. For years, and years and years, I can't really even begin to tell you how long....childhood I know....I have said this prayer....."Please come through me, so others can know you as I do". Ok there it is, a simple, yet complex childhood prayer.

I want to start this by saying that, when i was little, somehow I figured out that hypocrisy was a component of the human condition that bothered me. I remember writing a little book and making drawings in it, called the "Religion of the Animals" (or some childhood version of that statement). Unfortunately, my parents were not ones to save any of my childhood art work. But, I remember clearly sitting in my closet (a place I sat a lot), and making this book. I knew that our dog at the time a big black lab called Congo, was closer to God, than any human being I knew. I also remember watching birds and bugs, and the wonderment of all that was outside, and seeing that they were not anything but "there". I felt a peace with these creatures, that humans just didn't do for me.

I also want to introduce you to someone that has been in my life since I can remember. She came to me at night, she mostly came to me in my closet....it was my Blue Angel. She was beautiful, and she would let me sit in her lap. I had a few other "imaginary friends" and I would talk about them...Tommy in particular, but the Blue Angel was all mine, I didn't share her with anyone. I now have a tattoo on my ankle of her, but the strange thing is, when I got that tattoo, i didn't really even remember her, well on that night, as friend and I decided to get tattoos.....but there she was, coming back to me, reminding me she had never left, and will never leave me again...literally!

Ok, what is bringing this on......well, over the past couple of months some interesting things have happened to me. Some of you will read this and decide that I am nuts....that is ok. Some may read this and think..oh oh, airy fairy new age, woo woo stuff.....ok, so be it. But, I really hope you will read this and think about the possibilities, that exist in all of us. I am not going to say this is one religion or one way of thinking, so instead of calling this anything that comes from any religion, I am just going to say Spirit...ok? You can put in what ever you would like, and I think it will still work....if you put Jesus or Christ, if you want to say God, or Buddha, or Ganish, Allah.....whatever, I think it will work...

For quite some time, I have known that I have been able to be intuitive, psychic, a trance channel, mystic....what ever you want to put in there too. I have been connected to Spirit. I think this is because I have not only learned to speak with Spirit in prayer, but to listen in meditation. And, along the way, I have recognized that Spirit speaks to me in any number of different ways. Feelings, visions, signs, little coincidences, and when I needed it, a swift kick or knock upside the head!

Just today, a most marvelous thing happened. I got an e-mail from someone who I have recently met on line (meaning of course, we have not met face to face). She sent something that she was hesitant to send because as she put it "I really do not know you well enough to know if any of this has any impact upon your life". What she sent me was something that came to her while she was praying for me about my pain. It was a whole other subject about my childhood. She included the prayer, which was basically a healing for me and my father. I read this with tears streaming down my face. It touched me on a level so deep, so unexpected from someone who doesn't even know me....to write something so true. (Ok, for those of you who are quite astute and faster thinking than my writing....yes, it was actually from someone who not only knows me, but to most people's way of thinking, created me!). Spirit chose to use her to speak to me. And this comes at a very interesting time. I have been having nightmares about my father. I won't go into them, but basically, my father who died in 2001 comes to me in my dreams, not to comfort me....and I know he is dead, and he knows he is dead, but still there he is....it is unnerving at best! But, there was this email, with a prayer to ease this recent and past experience. Coincidence?

Next.....I have had a friend in my life for a few years now. I knew I was going to meet him prior to my actual in physical plane meeting of him. I knew that we were working out some karmic stuff. Not only him, but with his whole family. I had never met his family, nor basically him for any length of time, and I was getting all these visions,messages, and actual action plans, for him AND his family....especially his daughter and youngest son. I can't go into detail about this, because it is personal.....but why I want to mention this is....I think this is why I became so sick. I was there to help him and his family members work through a situation that was about to occur. I think, for the most part I did.....but then it got too much for me. I asked him, as well as Spirit to break the karmic connection I had with him and his family. I think it worked, but interesting to me, was that both his daughter and I (her "guides are who first came to me about this/him before I met him), ended up in the hospital with pretty serious illnesses at the same time.....Coincidence? I recently wrote him a letter explaining this. Will he understand it? I don't know. I think on some level. If by chance he reads this blog I hope he understands that everything that was done, all the coincidences in our lives....everything was Spirit connected. I know, because of the premature break, that we will do some kind of dance again...that is fine. What is really interesting to me about this too....is I think right now, even though we are now going our separate ways....both of us are finding the same path of Spiritual meaning....all my recent events, and "signs" are kind of similar to what I know he is now experiencing.......Coincidence?

I could actually go on for hours, or pages as the case may be, about this kind of Spiritual hijinx that is happening to me. A friend called me the other day, who, if there is anyone who is connected to the "other side" it is her. Even she will say that she is "way out there", but she said that we are going through a time right now, which of course I can't remember what she called it, but it is similar to the spiritual harmonics, or convergence of years past. when she was telling me this, it was like YES!!! It seemed that all these events, signs, and yes even some swift kicks had been telling me that it was time....for what?

It is time to quit looking only inward. I think it is time to know that we have to work together to heal ourselves, our planet, and others. It seems to me that more people than ever have been reaching out to me in prayer. In years past, that may have frightened me a little. But, I have been relishing in these prayers lately. They feel good. It is really about love.

I know I have mentioned many times, I think...about a little barn own named Molly. A simple little act of nature, caught on "tape" as they say, for millions to watch. What was supposed to be just a web site for family and friends went viral. Millions from all over the world started watching and chatting as she first laid her eggs, then tended to them, then the owlets hatched, and then we watched with joy, amusement, fear, and even some sadness as these little ones grew up, and flew away. But what I found really odd, I mean it, odd and strange and weird and unusual......those of us who "bonded" ( those who are a participant of the owl box experience will get the kind of pun that word implies. Bonding with barn owls is like a "quickie" to be blunt. It is not actual copulation, but kind of like a mimic of it while the female owl is sitting on the eggs, it happens at least a couple of times a night....and if, like me, you have your ear buds in.....watch out, as it gets very LOUD), but anyway......what was just kind of freaking me out....how much we all told each other we loved one another. What? We barely know each other, and we love one another? How Odd.....especially coming from a family where that word was not used.

In recent years, I have learned how to be comfortable with that word. But, it was not easy. The word "love" for most of my life was like finger nails on a chalk board. I couldn't say it, or hear it....freaked me right the heck out. I also couldn't look anyone in the eyes, that was another instant make me want to throw up action.....but, you may think I have digressed a little here, I am just saying....how easy it is to actually truly love these people. Kindred owl watchers from around the world. Here is the other thing.....I am NOT an owl lover. In fact, owls used to kind of freak me out. My parents would always talk about how the owl in the window meant death, or something like that. So, how did I get to a place, that really I would never have sought out myself?.....coincidence?

The story I started with today, the woman who sent me the prayer, we met on the owl box web site. I have also met some other people there who are changing my life. I believe, somehow, these little owls have been the harbingers of my ability to love deeply. I think one of the people I have met on this site, to whom we have become quite close, can be able to strongly attest to this. I wrote her an e-mail, and I told her something I have never told another living human being. It was weird, it just happened. It has to do with love, and my childhood, and into my current state as a person who is often sick and in pain......but really, it all goes back to love......coincidence?

At the beginning of this rather longer than I expected blog, I mentioned my tears. I said that I have been crying out some universal spiritual substance....what do you think? Should we call it LOVE?

You decide......

Coyote Ugly, with a twist....

2010-07-22T12:54:00.000-07:00

What happened to yesterday? How is it possible to go from a pain free (almost) day, to one that I can't get anything to knock down the pain level. This seems unfair. But then, what does that mean? So, the following is a peak into, how to try to make intense unrelenting pain go away....or, I do try other things besides the pain killers.....

Earlier today, I wanted to come on here and get very deep and philosophical. I had some thoughts that I wanted to share, about spirituality, love etc. But now, the pain is all I can think about. I have tried everything I know how to try to get this to quit. I have spent about 3 hours total in a hot bath, which feels fairly good while I am in there, but the minute I get out....back to pain level 15 out of 10. So, I try distraction, which can work on some days....music, writing, reading, watching TV, but can't keep my mind on anything but the pain. Ok, time for meditation. First, I did the no thoughts, just get into that zone....nada, just kept bringing the thoughts back to the pain. So, then I tried the other way, get into the pain...what is it telling me? After about 30 minutes of this, I was ready to go do something crazy. I couldn't think of anything, but something like go put a a new computer on my credit card, or go drive to someplace far away, I have never been but have been wanting to see, or go to the local swimming hole and just pound the crap out of these arms and legs, I can't see how they could hurt any more......but, reality sank in...would that help? NO my rational being yelled back at me.

I thought maybe I could cook my way into feeling better. So I decided to make a nice healthy dish of quinoa and lots of veggies in a cold salad with a lime vinegrette. Again, I thought hey, I can't hurt worse, so I walked over to the coop, and back and stood to make the salad.... I became so nauseous from the pain, there was no way I could eat or enjoy the salad.

I thought maybe if I called a friend and tried to talk, that would help....I am so glad I got voice mail, as I heard my voice sound like I was about to burst out in tears at any second....don't think I would have been a very good conversationalist! So now what....

I have taken the most dose I am prescribed of the pain killers, and a little extra, and while it has maybe taken the pain down to a 12 out of 10, for some reason even these little wonders are not working today. Why? Why was yesterday so good, and now today......this. I wish I had the answer, because then maybe I could make it go away...weather? maybe??

well, my friends, basically I thought this would be another way of distracting, that maybe if I wrote about it, it would help, but what it is doing is making my arms and hands way more sore. Crap. I guess it is back into the tub go I......I also don't understand what is keeping me in my body today. Where is the disassociation I spoke of before, even that isn't happening, and that is usually kind of automatic. I don't know what to say except......

Mary is not having a good day! I think this could be like coyote ugly with a twist.....I need to chew my arms and legs off to get away from myself in pain (which I guess is like an unwanted bed partner?)

I think I am learning something...I am a human being!

2010-07-21T10:40:00.000-07:00

Today is a good day. I can't tell you why. Yesterday, not only was I confused and sad and angry and all sorts of ways....today, I just seem to be happy. Yay me! So, what has changed? Well, for one, the pain, fatigue and weakness appear to be taking a back seat to everything today. My mind is a little mushy, but for the most part, I am able to stay present, enjoy the little things I find....like the joy of touching the Touch Me Not, or Jewel Weed....I don't think I will ever tire of those little spring loaded pockets of weed seed throwing devices! I wonder, did the Creator create that to be so entertaining that we just couldn't help ourselves from doing that? Ok, I am sure the more scientific of you are saying something like "No, it is so sensitive so when something brushes against it, or a strong wind even, will propagate it's species", but I like to take it to the amazing and absurd!

Yesterday, I found myself quite taken aback by some of the comments (not made publicly) about my blog. I was so confused. I guess it sounded like i was saying that I believed or thought that maybe it was true that the drugs were causing me more pain......nope, nada, no way jose! What I was trying to say, was.....that if some doctors were saying that maybe it was true that the literature was saying that, then maybe I would have to start over again to prove that it wasn't so. That is why I wanted medical assistance, so they could actually see and document the fact that when I go off pain killers, I become what some may call a hot mess....or just a plain hot headed mess. I am not so nice, or kind, or wise, or witty. I know these things, I have lived through them. If you read any of the replies to my blog yesterday, an Angel, named Angel wrote a beautiful response. As Angel said I could have been writing her words, she very beautifully wrote mine. The pain was there before the drugs, the pain will be there after the drugs, the pain is there during the drugs.....I am just trying to live my best life. That is all I want. So, as things would go in my life.....I believe in signs, I think God sends them to me daily, and if I am awake, I catch them....sometimes they are called consequences, sometimes they are called a kick to the head, but anyway....today I was sent another message.

A friend, who I have recently met, suggested that I read a book he had read. He said it was about questioning religion, or something like that. It sounded maybe like something interesting, but also I was a little dubious. But, I got it.....and here is a quote: "...pain has a way of clipping our wings and being able to keep us from being able to fly. And if it's left unresolved for very long, you can almost forget you were ever created to fly in the first place" The Shack by Wm. Paul Young. YES!!!!!!!!!!!

Ok along with this quote, came a little gift late last night. I am still having problems with insomnia, so I tend to go to a chat room and video cam of a little barn owl named Molly. I will confess, if there is anything I am addicted to right now, it is this owl! But, in chat I met a person (I have no clue if it is male or female, but I am just going to say he, cuz it is one letter less to type *grins*) who is a medical professional. I won't go into the whole almost 2 hour chat, but basically he said I am on the right path. Pain needs to be looked at carefully but the effects from chronic pain, can be just as bad, if not worse than the side effects from the pain meds. He listened very carefully to my concerns, to my symptoms, and to my theory. His suggestion is that I am on a low dose of narcotics, especially for how long I have been on them, and that I have no need to prove anything to my doc (especially the one who prescribed them) as he already knows my level of pain, or he would not be prescribing them. Ok, validation.

So, now that I have these 3 "gifts", I see. I see that what I am doing is trying to remember that I am created to fly. If I keep myself from flying because of some opinions of others who do not live in my body, do not know my level of pain, and who can in no way understand what I need to function, well then I am grounded. And being grounded is sad. Sometimes I don't even think we know we are grounded, we just know we feel sad, or somehow cheated out of something we know, something deep deep inside.

I believe that because I know I was created to fly, I know that there is greatness, beauty and wonder in this world, and it is all there for my taking.....well then, why not do what ever it is that makes me stay in that place. After all....I can use that old saying...well, if God didn't want me to take them, then he wouldn't have invented them....LOL

So, today I am flying. Not just because of those 3 things. There is another really huge, really big lesson I apparently have learned, and I am giving myself a great big old atta girl for this one.....just because I am having a good day, does not mean I have to clean house, weed wack the yard, take a long walk (although I would absolutely love to do this), or anything that is going to jeopardize this good day. I still need to take it easy, to do things on a small but enjoyable level. This is not me. In the past, good days were for pushing myself to get things done, as you never know when another good day is coming. So today, I enjoy my good day. Maybe tomorrow I will also enjoy another good day, because today I learned to enjoy this day. Maybe I am on to something. It is ok to be a human being. That is what we are called. So today, I choose to be a human being, not a human doing, or a human thinking....I am a human being. I can touch Jewel Weed and be thrilled. I can feel the air on my face and enjoy the texture of it, the smell, and the sound. I can just be.

Can you?

now what?

2010-07-20T09:25:00.000-07:00

Hello again. Well, I guess it is back to the drawing board once again. I went to the rheumatologist (I can't ever spell that right), today, and she was really nice, but yet again, I am coming away sans diagnosis. Well, I have a little one, possible metabolic myositis, which is very rare. She thinks, and I hope, that this last episode that landed me in the hosptial twice, may have been some funky reaction to meds that I have been on for years, but just "turned against me". Basically, these are statins for high cholesterol levels. She is going to suggest to my doctor, (but said that if it were her, she may just wait to see if I have another episode), that there is an expert in this at Dartmouth that I could go see. I think I will wait. I really don't care anymore.

I continue to think that what I am having is a combination of ehlers daniels syndrom (EDS), fibromyalgia, and dercums, with a smattering of osteoarthritis thrown in for fun. At first she said that my knees showed no signs of arthritis, (from her physical exam), but then I told her my MRI and orthopedic surgeon say differently. She pulled up the MRI, and said...."well look at that, you do". However, because I am sooooo flexible, it just doesn't look like I have stiffness like you would find in typical arthritis knees. Yep, that would be the EDS, which she agreed. So, I am relieved and also kind of mad. It is that strange place of wanting it to be something that can be treated, so it will go away, and glad it is nothing that is serious and can be treated but means more meds, more tests, etc.

Because she was so nice, I decided to ask her some other questions, like....can this just be some strange genetic mutation that is just me? She shrugged. I am beginning to think this. This happens all the times, and I drive doctors crazy. I get these whacked out lab results, or test results, then months, weeks, days, hours later....they are back to normal. Amazing healing abilities? Maybe. Ok, here is where it is going to get either very informative, strange, or entertaining.....but, I think I am the liver of the world!

Really! Sometimes, I think that everything just passes through me, and I heal it...but in the meantime, I pick it up. Is that really any crazier than dercum's, or fibromyalgia, or the common cold? My whole life has been about suffering. I won't bore all of you with why I say that, I am sure some of you who have known me would agree, and others are scratching your heads and wondering WTH is she talking about. The fact, that I think my whole life has been about suffering, yet here I am, fairly intact. Fairly able to laugh with the best of them, and avoid crying with most of them....well, I think that says something. Does it say I am strong? maybe Does it say I am just nuts? maybe Does it say that I am just focusing on the bad, and maybe everyone has this, I just pay more attention to it....(believe me, I have heard this).....well, that I don't think so.

So, now we go back to the narcotic pain killers. Do I need them? Well, I think so, but then again, how would I know, as apparently they trick you into thinking you need them. That is the "current thinking", so says many of the docs. Well, I am about at the point of saying, "OK, lets give that a try". God bless me for even thinking this! I know what my life is like without these evil little pills. It SUCKS. But, ok, maybe THEY have a point, and I do not know what I am doing. If I can pull up any amount of bravery, the next time I see my PCP.....I just may explore this, and do an experiment. If he will agree to detox me in the most unpainful way possible (I have been on these things for years, I don't think detox will be pretty) even if that means some rehab (and hopefully one that can work with chronic pain, not just chronic abusers of meds), then I might, just might agree to do a little experiment. If I do this, I don't think you can expect me to be very "around", but who knows....maybe it will be the answer. I don't know. I am just as confused as everyone else.

In my heart of hearts, I don't think that what I have is your common garden variety fibromyalgia. I just don't. I do think it explains some of my symptoms. I think that Dercum's explains many of my symptoms too. But, I just want my life back. Ok, so if it is the narcotics that are robbing me from my life....then lets get rid of them (she, the nice new doc suggested this may be the case, but did say that with, well, that is what is in the literature currently) hmmmm, I wonder, how much influence does the DEA have with that literature? But, who am i to question those who "know"?

I certainly have well meaning friends and family who think I should get off those "horrible" things. I don't know, who are they listening to? They are what makes me functional. But, right now I am barely functional with them, so why not go whole hog non-functional and see what happens? Well, fear for one answer. Pain is not easy to live with my friends (as many of you know), I fear that I will just "go away". I can leave my body pretty fast, and my fear is that I may choose to leave it, and just not return. No, I am not talking suicide or anything like that, I am just talking the ability to disassociate. I learned that as a child. Nice tool to have if you don't mind sitting and staring into space with a blank look on your face.

This is such an ever lasting, on going, time consuming battle in my head. And people think we like to take these meds! I don't know. This is yet again, one of those posts that I should probably chalk up to, getting my ya ya's out, and not for public consumption....but then again, I know not just me struggles with these issues. I bet, there are many of us out there who would just like to have a life that is filled with love, laughter, joy, happiness, contentment.....isn't that what everyone wants. Ok, now I am crying.....for I just don't see that in my future. Not to the degree that I want it. I see me coping with this pain, I see me having moments of joy and happiness, and of course laughter (cuz I love me some laughter), but I don't see it as sustainable. That is what scares me. NO, THIS IS NOT DEPRESSION SPEAKING....I think it is reality speaking. I so want to work again, to be out amongst the public, as most of you know, I am pretty darned extroverted (except when the pain and fatigue make me very darned introverted, but that is more like a forced state of being). But, I don't see that happening. I used to. I used to think that there was something i could do......but, that hope has slipped away. Well wait, not that it has totally slipped, I mean, I don't ever seeing me doing the kinds of jobs that I want to do. There is probably something I can do, if it is very flexible and accomodating????

Ok, I can't take up anymore of your, or my time with this......one of these days, there will be someone who will come up with an answer. Patience, is something that I have. In fact maybe to a fault....but right now, there are Monks in Tibet praying for me, who don't even know me, there are people who are working to figure out what is going on with our bodies/psyches/souls and how they all connect.....I think they will figure it out one day. Until then, I will continue to pray, to be a "liver" if that is my job, and to hopefully keep laughing.....cuz that really is the only medicine I like to take!

What's pain gotta do with it?

2010-07-18T10:01:00.000-07:00

Hello everyone. Well, another day another adventure in bodyland. I have said before, and I am saying it again....all these illnesses that have invaded my body, make me an adventurous soul. Everyday, I wake up, I have something new to face. Will it be a good day, where I can get some things done? Will it be an ok day, where I can do some of the things I can enjoy, maybe talk to some friends on the phone, or computer? Or, will it be one of THOSE days, where i can barely hold on.

It is good when it is one of the first two, but of course that last one, which many of us know all too well, makes me want to shiver and hide. The reason why, I am very close to those days. I woke up today in pain that was taking my breath away. I was feeling very nauseous, and to think about moving was causing me to cry. Yeah, fun huh? So, I reach for the pain killers, and I pray...I pray they will work, as i am not wanting a day of barely holding on. These days not only hurt like hell, but for some reason they last forever. You know those really fun days that when you blink and they are gone, you wonder where the time goes? I think I have figured it out, it goes to these kind of days. The ones you want to have over in the blink of an eye, but that seem to last for decades.

But, as luck will have it, the pain killers kicked in. Some. I am sitting here writing to you, because, that is about all I can do. The thought of moving around still gives me the shivers. I know some people will say, "that is what you have to do, that is the only way to help the pain"...I agree...but not this time. I have pain now, that does not help to move around, because this is not the stiff and sore joint pain. This is the Dercum's Disease pain. Moving around is not the answer to these puppies.....they just hurt more. I have these lumps (for those of you who do not know, dercum's disease comes with painful lipomas (fatty tumors). The ones that are hurting so badly on me right now, are around my hip area. Every step I take brings on excruciating pain, as I think what happens are the lipomas get affected by gravity, and when they are moving toward the floor, they pull on the nerves.....just my opinion, I have no idea why they hurt like they do. But believe me, it is the kind that makes you want to not only bite the bullet, but put in right into the middle of your forehead!

The other day, I was in both physical and emotional pain. Today, it is mostly just the physical. However, I would like to be outside doing something fun, with a group of people. I would like to camp, or even to walk down to the end of the block and check out the farmer's market that happens here in my little town each Sunday. But, today is a day for sitting very still, and allowing the pain killers to work.

These are the kind of days, that I would like to have someone drop by, or call on the phone, but then, I am in such pain that I tend to not be very present. It actually makes talking to someone more difficult....I am sure you who have this problem can relate to that, those who may be reading this who do not may be wondering what makes it so hard to talk? I am not really certain I can answer that, except with the easy answer of the pain is so for front in my thinking, taking over all my concentration, that trying to listen to someone else is like trying to hear a conversation you are not only interested in, but if you do not hear what the person has to say, something bad could happen to you. At the same time the Beatles reunited (yes that would be a miracle), to sing just one song. What do you focus on, a miracle that you would just die to experience, or a converstation that could change your life......hmmmm? Well, that was kind of a strange example, but if the conversation is the pain....that which you would like to get away from, but can't, and the Beatles reuninon song another person's conversation, that which you so want to hear and be interested in....well.........you know what is going to probably win in the end. Even if the win is that you didn't get to fully pay attention to the song.

Wow, I am not sure I just did any justice trying to explain that. But, that is how my mind is working today. It kind of isn't. That is what pain does. I hestitated about writing this. I thought I should wait until the pain cleared some, the fog cleared some......and I could actually write something with some insight, or some humor, or something.....but here it is......this is what pain has to do with it. I think, it makes me, Mary into something that I never was, but I am afraid will forever be. I used to have a very sharp mind, and quick whit, an energy drive that could match anyone. And now, I have this constant companion called pain. It is like hanging out with the person who took everything you owned, and still allowing them to be by your side.

These pills, they dull the pain. They make me think for a few minutes that maybe the pain has left my side....but they are just masks. Don't get me wrong, if I did not have these masks, I fear what my life would really be like. I don't think I would have a life. Or, at least nothing anyone could call a life worth living.

So, I take the pills, I wait.....as I know each day is an adventure. Every day I wake up, I get to uncover if I get to have a life that is somewhat normal. A life that is somewhat filled with happiness, or is it going to be one of those hang on days......yes, these illnesses are not for whimps.....they are for those who love adventure!

New Day, New Emotions...or I love my friends!!!

2010-07-17T06:55:00.000-07:00

Well, I got through yesterday. It wasn't easy. However, with some loving responses and phone calls from from my new kindred, and my cousin.....life got better. Well, I can't lie, the visit to the doctor to get additional pain killers to help with the pain was also a big factor. At least today I can walk without cringing and crying.

So my dear readers, what is on my mind today? Today is filled with possibilities! Quite different from yesterday, huh? Yes, my life has had to take a very different turn. Those possibilities, at least for now, are not what they used to be. There is no way I am driving very far, or taking a walk on my favorite trail, or doing anything that requires much physical exertion. I am afraid those days are over. I am not sure that my doctors would say the same thing, but I know. I can feel how far my body has declined in the past months. I know it is not purely deconditioning, as I try to do things (as you have read), even simple enjoyable things.....and I can no longer participate in them. So, it isn't for lack of trying. And, as I have now realized, that trying can put me down now for days......so, I have to realize, at least for now, and maybe forever.....what I used to think of as fun and socialization....may be over.

So, today.....today is a new day, with a new attitude. And, I was just sitting here wondering what I was going to do today. Planning my day, as it were. The thing that surprised me, is I don't think the day is long enough to get in all the things I want to do....and I mean things that I CAN do. This is exciting and wonderous to me, especially after the crash of yesterday.

So, what is it I can do? Well, I am in the middle of a book that I have been reading, and that is nice as for a few months there, I could not even read. So, that feels like something I would like to do. Of course there is my art work. I am working on a new yarn painting that I am very much enjoying. And, for those of you who have read the first chapter, and have encouraged me to continue....I have a book to write. I also have a number of movies that I have recorded onto my DVR that I need to watch soon, or they will POOF! LOL....

I am also hoping to start a new painting. Well actually, two. One of an image a friend took while visiting the US from Australia. It is an amazing photo she took at the San Diego Zoo of a wolf that she got to howl. She used photoshop to place the wolf into a very cool setting. She sent it to me to see her photoshop work, and gave me permission to paint it. I am very excited about this!!! The other, is a line from a poem another friend wrote. The line blew me away with it's imagery, so again, I asked permission to attempt to put it into a visual image, and she gave me her blessing.

AND THEN...he he...see!!!!! Of course, after taking that encaustics class (that I still can not believe what a generous and beautiful gift that was) I want to set up a studio to continue to do this work. I really should not spend the money (although, I am half way there because of my batik background), but one of these days, when I believe I can drive that far....I will go into Montpelier and get the needed supplies. I am VERY excited about that! Hmmm, maybe that is something I can get my social worker to do with me...hmmm??? LOL.

I do know though, that after taking that class, and the crash and pain that followed....I will have to work very slowly. But, that is the beauty of that medium...it allows for that.

So my friends.....if you see me heading down that path of feeling like because my life has changed so much, I am a different person, with nothing I can do any more.....remind me. Remind me that life is good, and needs to be documented...hence this blog! I know that many of you out there reading this have similar issues. I know your body has changed, has become something that seems so out of control, so foreign that you don't know what to do with yourself, well.....just sit, allow....know that the answer will come. The hopes and dreams that you had may not be within reach any longer, but there will be new ones that come into our lives. Be patient, they will come. (yah, I know, that is kind of odd for me to say, since yesterday, I thought my life would never have joy in it again, but see, see how fast it can turn around) he he he he!!!

Of course there are going to be bad days. That, I think, is unfortunate and inevitable. There will be days when the pain, the fatigue, the weakness will take over (as one friend who has Dercum's Disease calls it "the monster"), but it is temporary. Remember to hang on, to reach out (especially to those who love to laugh....muchas gracias to my late night friend and cousin calls last night)....and to remember, that even when you don't think anyone does or can.....you are loved. If you can't think of anyone....please remember this, and think of me!!! OK? Is that a deal?

Now, off to make my day one of creative fun, creative expression, along with the required rest!!! which even that at times can be a little more creative than I want (dreams).....LOL

I love you all, nameste!!!

Down dooby do Down Down!!!

2010-07-16T10:59:00.000-07:00

well, I guess I have to admit it. Life just isn't that much fun sometimes. Even when I would like to come here and say that although I am sick, i can make light of it. Or, I can find things that make me realize that I am still lucky to be alive. well, my friends, today is not one of those days.

After my last blog, I am happy (I think) to say that I slept for almost 23 hours straight. My animals woke me up to remind me that they like to eat, but other than that....I slept. Yes, if you have been following this, or my face book entries, you know that I probably needed this kind of sleep. But, I woke up, and I was not feeling good. In fact, all I could really think about was how come I have to endure this kind of pain, and this life filled with chronic 24/7 pain, fatigue that actually hurts, and weakness that is now causing more issues for me to deal with. (mainly, I can no longer get in and out of my bath tub). I am having a full on pity party today. I wrote on FB status....."I am having a bad day, and it is only 6:25am"...or something like that. It is now 2:30 in the afternoon, and things are just marginally better.

I really don't know if anyone is reading this, no one has left any comments for awhile, but still....I will write. I usually want to write something positive, but today, I just can't. well, I could, but I would be lying. I am sick to death of having to live a life of coping. Of trying to keep my chin up and pretend I am happy, because that is what society wants me to be. Well, I guess that is what I want to be too, but it just isn't a happening thing. I go on face book, or read e-mail or run into people I know, who all have stories. They all are going somewhere exciting for vacation, they are getting married, having babies, getting engaged, finding a new relationship, buying a new house....etc. Yippee. I want to be happy for them, usually I am happy for them....today, i am sad for myself.

I think what makes it worse, is I just had a couple of good days. Then the crash. You think by now I would be used to this. It happens. It will always happen. I think this is a little different than your typical good day bad day scenario if you don't have some kind of chronic illness. I think when you have a chronic illness, there is this false hope that when the good days are there, the illness is easing up. Maybe even leaving your body. But then, it comes crashing down around you again, just to remind you.....you are sick.

Today I went to my doctor's office. I love them. There, I find the most compassionate people in my universe. They listen, they give me the meds I need to get me through this rough spot, and then they say...."don't worry, you will feel better". Will I? Really, will I? I don't think so. Not anymore. I used to. I used to have this hope that things would eventually get better, but now I think I have to face the reality....it just isn't going to happen. Yes, I am going to have good days. But, when I think of what good days mean to me now....it just makes me feel sad. I now get excited when I have a day where I can stand at the sink long enough to do a whole sink of dishes, and cook a good meal. I think a good day is when I can rest long enough to go out and do some social type event...but knowing I will pay for it for the next couple of days. Those are my good days now. Think of it, if you are reading this and do not have a chronic illness...think of what makes you think you had a good day. I bet washing dishes isn't high on that list.

Yes, I am feeling sorry for myself. Luckily, I don't get into this place too often. I can usually look at my life and realize, even though it isn't great, it is much better than some. But today, it just feels like it doesn't matter any more. Why should I try any more? Yuck....I hate these kinds of days.

Ok, here is why I am writing this. I know, that many of you, if there is actually any of you reading this, have chronic illnesses.....I know that you get into days that feel this way too. I decided to write this because i think it is normal to feel this way. I told the P.A. I saw today, that I have a guide to if this is depression, or just situational. If in two weeks, I feel this way still...well then, maybe it is time to look at some happy pills. But, for now, I think it is just your basic pity party...that most people would keep to themselves. But, here I am, writing out mine for the world to see.

Unfortunately, a few people have been on the receiving end of this current melt down. Probably, they are not going to read this, but i feel like I need to aplogize for that. I really don't mean to have my emotions bleed out onto everyone and everything. But, sometimes, it just happens. I know too, that maybe it didn't seem like such a big deal to you, but to me, I feel ashamed. I don't want people to be affected by my crap. (namely, John, Lisa, and Sarah).

Ok, maybe, I will just go crawl under a rock for a few days, lick my wounds, and return to be happy and witty and full of insight and love for you all to read. Or maybe I will continue to bleed out my emotions all over this blog. After all, it may just be a cathartic exercise for myself anyway.

Life isn't so good right now. Maybe the meds will kick in, and then at least the pain level will decrease. But, I wish what would increase is the love i know that is out there, but just seems to be stopping at some barrier I have constructed. I mean just the other day, I was so impressed and so in awe of how nice some of my friends where to me. And what has changed? Nothing, but my own perceptions. Why? But right now, i feel so isolated, so unable to be loved. It is driving me crazy, because I know it isn't true.

Ah heck....I am tired of writing...it isn't helping.....I wish I could figure out what would. Have any ideas? I know I should not hit the publish post button, but what the heck.....here it goes....

Sleep, why hath thee forsaken me?

2010-07-15T04:09:00.000-07:00

I have started and deleted and re-started and deleted this blog about 5 times. I think this is the time to just simply say....no sleep makes me unable to write about no sleep!

I tried to be witty, that didn't work. I tried to be factual, that was boring. I tried to write something that would at least be helpful, or comforting, or supportive to you the possibly kindred insomniac....but that is not going to happen either....apparently.

Here is the thing, no sleep means few available brain cells. And I think I am wanting to use those for some other things right now. So, even while I wanted to share all my insight, I am thinking what I really want is a good breakfast, and a nap. i have been up all night, how about you?

But someday, what i do want to explore with you, is our feeling the need to get a certain amount of consecutive sleep hours. I know they say 8, but for us who can't figure out how to get even one on most nights....I will not put an amount on that consecutive.

So, here is what I am working on (now, this is easy for me, as I don't work). This maybe one reason why I can't work.....but, I am going to allow myself to be awake when I am, and sleep when i can. So far, this has meant a few minutes here, and hour there. Sometimes I get maybe 2 hours at a time. The bad thing is, I only sleep when I am so exhausted, that I almost HAVE to sleep. So, I will report back, but right now....I am way too tired!

The art of pride maintenance.

2010-07-14T14:25:00.000-07:00

I am sad today. Not really sure why....I am thinking it may be the end of "The Hills"...just kidding. I spent most of the morning crying, which I hardly ever do. But, I think ever once in awhile, that isn't such a bad thing, I think it gets rid of some toxins....tear toxins or something. Maybe because tears are so close to the brain crying removes some brain toxic build up.....and Lord knows, I could use a little of that!

So, cut to this afternoon. I just had 3 Americorps angels come to help me clean out part of my house. They spent 2 hours, did an amazing job....and I am more than grateful to them.....but I could use them for another 20 hours. How did my life get this way? I think that is why I was crying.

I have never been an obsessive cleaner, but I have always been fairly neat and clean. I did my housework, and cleaned up after myself. I even enjoyed some parts of cleaning. I actually loved it when something got really dirty, and then I would clean and you could smell how wonderful it smelled, and how nice it looked.......then i got sick. I knew in order to keep working that something in my life had to go. I don't know if it was a total conscious decision, but it seems like house work was what went. I would do what I could, so it wasns't horribly bad, but it was certainly a couple of notches below my normal.

Then when I went on disability, and I wasn't working (it took me a couple of months to get to this after I left the job, which was in 2005) I could use my energy on cleaning a little. I would do a little of something each day. Again, it wasn't up to the par that it was prior to getting sick, but at least if someone came to the door, I would not be embarrased to let them in.

Ok, now we get to August of 2008. I started working again. It was supposed to be only about 17 hours a week, but that quickly went up to thirty. I loved this job, it was fun, it wasn't stressful.....so I was happy to do it. But, for me, the trade off was....I would work, and I would rest. That was about all I could do. I could not do any housework, as I just didn't have the energy. I would clean the toilet, the sinks, do a load of laundry, and wash some dishes.....and that was it.

Ok, now here we are close to a year after getting laid off from that job in October of 2009. I am lucky if I can get myself to the bathroom when I have to go....sorry if that is too graphic for you, but I am not kidding. I don't know what to do. I "look" fine. I "sound" fine. I am NOT fine. I need help. I hate asking for help, but I need more help than I look like, sound like, or will admit than I need. This is scaring me. I don't admit this to too many people, so if you are reading this, consider yourself in some kind of inner circle. Although it isn't like it comes with any perks.

It is so humiliating to be in this place. Basically alone, and sick, and very sad. But, I don't look or act like this is where I am at. First, I have to say.....I do have many friends, and wonderful friends....so when I say alone.....I guess I mean more like the concept that I have no one in my life who has agreed to be there for me in sickness or health. Someone who is here on an everyday basis that sees what needs to get done and helps me do them. (I think I have to add here that I know that everyone who has a partner in life does not mean that they have automatic help. I read posts on some of the support groups I belong to, that talk about their S.O's not paying any attention to them, and in some ways, I think that would be worse than being alone!)

Ah heck, I don't know what I am tying to say. I am tired and in lots of pain, as of course...I had to try to help these marvelous women who came over to help me. I did about 1/10 of what they did, and it has almost killed me. My legs are so swollen, my back in very sore, and I feel like I have just been kicked for a couple of hours by a professional football team (and no, I am not exagerating).

Here is the really hard thing to accept, as I watch my body seemingly decline more and more every day: for the past two times of getting into my tub....I fell in, as I can no longer make my body (knees, and arms I guess) support me while lowering myself in. Then getting out is no picnic either.

so, I just want to cry....I know I did that this morning, and I don't usually do that....but maybe, that is what I am supposed to do....cuz really, writing about it here, has just depressed me even more.

But, I am soooooo grateful for those that have helped. Maybe it is because I am a Leo, and that is all about Pride.....my pride is wounded. Hmmm, what do you use to patch up some pride problems? Guess I should go meditate some on this.....

Save The Best For Last, or funny flower diptic.

2010-07-12T20:28:00.000-07:00

Ok,my dear readers, this is it...this is the end of the day of learning how to paint with wax. The instructor suggested that I leave them like this, and not do any layers of the clear wax to make them a little more ethereal. I am not sure I like these, but like I mentioned before, if I go out and buy some materials, I can work some more on them.

So, here are the results from my class. It was fun, very much enjoyed watching the other attendees work on their wax works and I liked many of their finished products. For me, at least in this stage of my healing, I am happy that I stayed with it, even though I wanted to leave right after lunch. I had forgotten to take any pain meds in the morning, and did not bring any with me, so I was in some pretty intense pain. I mostly stood up during this process, and I now know I can't so that. I probably shouldn't have, as I am not sure i did my body any favors, but my soul is pretty happy!

I am hoping to obtain the materials I need to continue to work with encaustics. Because I have worked with batik, I already have a lot of what I need. This makes me very happy!

So, while I would not say I am totally happy with what I produced, I am excited to study this and discover what more I can do with the materials. I am very excited that I have the desire, and the energy to use my creativity.

Again, a huge thanks to my friend who told me tonight that she hoped that going to this workshop would help re-awaken that in me again. It did, but what it didn't do is make me awake now......I am tired, and the pain killers are taking an edge off, so I guess i will see if I can go to sleep and dream of art images to create!

I have a meeting fairy early tomorrow morning for our local community center (who knows, if I keep going with this visual arts energy, maybe I will arrange a showing of my work!). So, as always, thanks for reading and looking at the pictures. I hope that there will be many more to come!

Encausticat or Try Number 2

2010-07-12T20:15:00.001-07:00

This is my second attempt. I supposed I like it a little better. Again, I used a cut out, so it is kind of like a collage.

My friend who paid my way into this class loves cats. I decided it would be nice of me to make her a piece to show my gratitude.

This one was really quite straight forward looking, but there are a few techniques of adhearing one layer to the one under it that takes a little practice. You can maybe see this on the "bed of roses" this kitty is laying on. One really cool thing about this, is in three years, once I get really good at this, I can go back into this one and rework it. While this medium is not one for control freaks it is quite forgiving in that you can rework it, and cover or scrape off what you don't like.

Ok, now to the last 2 panels. As you will see, to me, it does not look like I made too much progress.....but what I did have was lots of fun!

First attempt at encaustics....Horse and Clouds

2010-07-12T19:53:00.000-07:00

I am sorry, but I think this is going to be a little difficult to see. If I can figure out this blog layout, I will show you the close up on this same page. This was my first attempt. My very favorite part is the upper left corner, where those white spots are. There are about 20 layers of wax on this subtrate. I was not happy at all, but then it kind of came together. It may be hard to tell, but there is a horse in the middle. I spent most of the workshop on this piece. Hopefully the close up will be below, if not, it will be in another blog post. Ok, well, it ended up being the first picture. I am so computer illiterate sometimes! Anyway, everything is layers of wax with the exception of the horse, which is a cut out, and there is a little jewel thingy that is up around where the "sun" would be.

When I started this, I had no idea what I wanted to do. I was pretty much just focused on trying the layers and colors and seeing how they reacted to one another. I also used a kind of scratch board technique to reveal some color below the top colors.

Ok next post, will be the next piece I tried, but don't expect anything much better! LOL

I believe I am in love....

2010-07-12T14:45:00.000-07:00

Oh sure, that got your attention. Well, for those of you who are romantics, sorry, it probably isn't what you are thinking. I am in love with the art medium of encaustics. I just finished the class, and it was so fun. Unfortunately I am paying for it now (partly because I forgot to take a pain killer this morning), and the last hour or so was pretty challenging because of the pain and fatigue.....but I loved it.

When I can move again, I will post the pics of what I made today. I ended up doing 4 pieces. They are obviously beginners works, but that is what I was!

I am literally sitting here falling asleep; so I will post more, with pics, later....but thank you my wonderful friend for giving me this gift. I hope I will be able to set up a studio and continue to do this, as I think I am drawn to hot wax or something. First batik, and now this (well, and the yarn painting too!). It would be nice if your gift could become a way for me to go into that creative zone and forget about my body, and it's aches and pains.

So, have to go sleep, I will be awake in a few hours probably, and I will post the pics then....but one more time, just in case someone didn't understand......thank you, thank you, thank you, for this lovely and generous gift.

Off the top of my not so chipper head...

2010-07-11T09:58:00.000-07:00

I just woke up. I wish I didn't. (I don't mean I wish I would have never woken up, I am not that bad off!!!) I finally got some very good consecutive hours of sleep, but now I can't move. I am so very tired of this. I am waiting for mommies little helpers to kick in. I am really hoping they do fast, as I would love to get up and do the normal morning things....like brush my teeth. Because you see, even that is not possible. Well, if someone was in my bedroom with a gun to my head saying "you better go brush your teeth". I supposed I could muster the fortitude to go do it then, but right now......nope, not a happening thing!

The pain is what stops me, and the stiffness. I actually woke up around 11:30am (ok save your judgement, I didn't get to sleep until almost 3am), and then it took me about 15 minutes of tiny little movement to try to get my back to not spasm. When I finally accomplished that, I had to work on massaging my upper left arm, which has suddenly become a place on my body that needs attention, cuz if I didn't, it would just feel like there were rocks in there, and I can't move it. Finally at about 12 o'clock, I was able to reach over and take the pain meds. (the arm that needed work is on the side of the bed that needed to reach to get the pain meds). Also, there was no way, that arm could have held onto and raised the bottle of water I have with me at all times, to even take the meds.....so after the massage, I can do these things........waiting for the meds to kick in.....

so, while waiting, I need to focus on my legs. They feel as if not only had they completed a marathon run, then some person came up and bashed them to bits with some heavy object. Not to mention that they are so swollen, that just moving them is like trying to make a water balloon fold and bend. So, I lay here and do similar motions that I did with my back....tiny little movements, ones that don't make me scream. Then they can get larger, until I am almost to the place where I think I could swing them over the bed and sit up. Of course , the back is still thinking this is a very bad idea, and tells me so.....but I don't listen!

I sit on the side of the bed and look down at my feet. (ok, I gave this some consideration, but i decided, I am including a picture of these things that are called feet. Then you can get some idea of what it is I am talking about, I guess as you will see, it is more my ankles that look very swollen, but don't let that fool you, the feet are in pretty bad shape too) They no longer look like the feet I used to look at and think, "my you are ugly feet" (face it, how many of us really have pretty feet?), but now they are feet that look like they belong to some other creature. They have lumps and bumps and swellings (but I still have those cute almost non existent toes they are so tiny, but now they seem to be wanting to lay on top of one another, weird). Anyway, I am sitting here looking at my feet because I have to give them a pep talk. They know what is coming, they know that when i step down on them they have to carry all this weight (they wish I would lose some of this weight...I agree with them, but you know, I blame part of that on them, they are the ones who walks with me to the refrigerator, so it is their fault too!!), but I digress yet again.....ok, I am just talking to those feet, begging them to allow me to stand up, and to do their thing. I actually have to tell me knees the same thing.....so here I go, I am going to try....

Good thing there is a wall very close that holds me up when the freaking feet and legs decided not to. Yep, I am there, holding onto the door nob that kept me from falling down. Apparently the feet and legs (oh maybe that is what is wrong, I just talked to the knees, I didn't say anything to the whole leg, especially my thighs, they are the ones who have been very naughty lately. They are the culprit for much of this pain...how could I forget......well, they didn't let me, as here I am now leaning on the wall, hanging onto the door nob, and wishing I could fly or at least just hover. Wouldn't that be nice....but, I really don't want to have to clean up after myself (if you get my drift), so I decided that I have to say "feet, don't fail me now"....and I include the rest of my body along with that. And I walk like a combination of Lurch, on the "Adam's Family", and a drunken person wobbling out of a bar after way too many, " just one more" cocktails. This would be kind of funny to watch, if it wasn't me, and it didn't hurt so damn much. I get to the place where I get to sit. (wink wink) Or in my house "the throne of undivided attention", as this is where all my animals come to get petted. Long standing habit, and quite funny, I think. It doesn't matter if I have just been sitting with one of them on my lap, I head there, and so do they, circling my feet (the small ones) and my beloved Keefa, my dingo.....she always just sits and smiles, or sometimes I even think it is more like laughing at me. (you know, you could do that same thing right outside, really, you don't have to sit on that cold hard thing, you could just go pop a squat right out there behind that door, silly human)... But, the throne of undivided attention has become a "thing" in my house.

Ok, now I have to either try to do things like brush teeth, comb hair, wash face.......but as I am standing up again, i see that is not a happening thing. So, I hang onto everything I can, and I lurch back to the home away from home within the home...the bed. Ok, here is where it may get sad....for those of you who are actually reading this (first I need to wonder why?, and second I say "oh wow, thanks for actually reading this"....but if you don't want to hear a sad little pitty party rant....skip over the next color...cuz here it comes....

I get back in bed....and I decide while I am waiting for that which makes me half human to course through my veins and allows me to do things like brush my teeth, and wash my face.etc........I would just get on the net, look to see what has happened during the night....what are my friends up to: I guess I shouldn't have done that. You see, I had the most excellent days for the last two days, and that is not to say today could not turn out to be good too.....but, I started looking at friend's who have posted pictures of all sorts of fun things. Out doing things with their families, photo's from vacations, pictures of our engagement, look at the beautiful wild life around my house,. Then I start reading.....hey going to bread and puppet, come on up and meet us up there, or there is a great party happening at this restaurant, would love to see you there, and we are heading out to the lake, if you are not doing anything, you should come on out. And, what do i do....I cry. I sit here and I sob. People, i would love to join you at any one of those places, I wish I was out taking pictures of wonderful things......but people, I am sitting here hoping that when enough of the stupid painkillers kick in, I will be able to go brush my teeth. It just hit me hard today. I am not even taking pain killers which have this huge stigma, and whole issue of people wondering why I take them, or if I need them......and here I am taking them, so I can walk to the bathroom to brush my teeth. I am not liking this picture. Not one little bit. I am so overly aware that there is a world of wonderful things to do and see, even right down the street from my house is our farmer's market....and here I am. Now, this does not come with just an oh poor me rant.....this also comes with a whole side order of fear.

I wrote the other day, about the most generous gift I have ever received, and that is the art class I will be taking tomorrow. I am going to go, even if this is the way I will be feeling......in fact the generous gift came with the admonishment....."you are not going to end up being a no show are you" so, I will go. But, if I am feeling like this, if the pain level is off the charts (which many days the pain meds just don't do a thing for)....then, yes I will be there, but no I won't be there. I will be disassociating to get through it. Yes, I am not liking my life right now, and I am thinking....it isn't fair. This girl just wants to have fun, This girl just wants to brush her freaking teeth! This girl just wants to have a family that goes on outings to fun places, and laughs and smiles. This girl just wants to accept invitation (which are getting few and far between, as I can rarely go to things anymore) to parties and dinners and lunches out, this girl wants to travel and take photos and send them back to show people where I have been and the fun and exotic things I have done. This girl just wants a body that is not the cause of daily anguish. This girl is mostly thankful for a very strong mind that gets her through this failing body. This girl is tired, but this girl will not give up! (this woman also knows that it is not ideal to call a woman a girl, but it is a play on the theme of Cindi Lauper's "Girls just wanna have fun")

Ok, rant over. Pain Killers are starting to make me think that teeth brushing may be coming right up on my day's activity planner. And I am excited to get back to the art work I am doing. Yesterday I went over to the coop and got some edible pea pods, and some Annie Goddess dressing, and I am going to have a yummy lunch of those, and some left over chili from my favorite unnamed little cuban food trailer that I call a roach coach (which basically that is what they are called in larger cities, but a friend of mine thought I was putting down his place of establishment, so a disclaimer.....I am in no way saying that his food or his trailer is bad, or dirty, in fact I think anyone who lived around this area should go check this guy's cuban food out, it is sooooo good), and I may even talk on the phone to a friend who has recently come into my life and makes me laugh...so all is not lost. But, I do yearn for a more active life. I used to have it, and I miss it. Don't ever take your ability to move easily around on this earth for granted. Be grateful for a body that isn't constantly shouting at you, or reminding you that your new life is one of watching, of waiting, of wishing, of hoping. Be grateful if you got up this morning and brushed your teeth, and didn't even give it a thought!

PS: It is now 2:30pm, and I am about to get out of bed, and finally go brush those teeth. It has taken the pain killers this long to finally kick in, and allow me to move with some ease. see, this is my life...again, please don't think I am telling you this because I want any sympathy (I know I say that a lot, and it isn't that I don' think a little sympathy is a good thing, but it isn't my goal in writing any of these pages, and if it ever is, I will tell you!), but it is for an understanding of what it is like to have a body that makes just the activities of daily living freaking hard. A group of us are on a committee that meets early in the morning. There have been times that I get up and get ready, and then no one shows up, as they have been canceled and someone forgot to call me. Now, I hope by reading this, I can help some of you understand why, for me and others like me, that the simple act (for you) of getting up and getting ready to leave your house.....is not so easy for us. And, because we did that....the rest of the day just may be shot. If you would like a better understanding of this, google the spoon theory. (or you can find it on www.butyoudontlooksick.com ) This gives a very good understanding of those of us who live with very little energy in our "bank" has to go through every day. so, again reader, if there are indeed any of you out there, thanks for taking the time to read this, and hopefully learn what it is like to live with chronic pain.....or, that you have a kindred who understands your daily struggles. Strength of mind and will be with us!!!! Peace and compassion with everyone, this world needs a whole lot more of that.

TRASH BAGS, HOT WAX, AND LOVE

2010-07-09T21:57:00.000-07:00

Today has been amazing. I should check my horoscope. Days like this, especially for me, do not happen very often. So, when they do, I really don't even know how to react, what to say, what to do....so, my new thing, BLOG.

Before I get into why I think this day has been so incredible, is that for many months, as some of you know, my life has been rather challenging. The obvious challenge is my health, but there have been others. I lost my job, I have had a few people who were close to me pass away, financial stress due to loss of said job has put me in a place I haven't been since I was for all purposes homeless in the early 90's. Added to this, a few friendships have come to an end (even if it was for a good thing, it still is a loss and still hurts), a few of my close friends have been very sick, or struggling with challenges that have affected me too, I can't go into details but a huge family stressor has been causing me emotional upheaval. All my animals need vet attention, but I can't afford it, and it hurts me to watch them hurt. And, others....I am not including this for in any way to have you feel sorry for me, or think I am trying to gain sympathy, actually quite the opposite.

So, to add to the challenge of recent days, by now if you are following this, you may know that I had a colonoscopy where the pain med/sedation didn't work for me. So, Thursday was a pretty intense day. Today, I thought....I am just going to sleep and eat (because I couldn't for days), and rest and treat myself well. And then.....

I think it was around 7:30am maybe, I got a phone call from a friend responding to a request i made to her on FB, to come and help me with trash/recycling. She said, are you ready for this in about an hour? OMG NO, I told her. I let her know that I intended to rest and treat myself well today. Trash just didn't seem to fit into that scenario. But, she said, all I had to do was sit and talk to her, I didn't need to help and she would do the rest. For those of you who don't know, since i have been sick, well let me back up, since i started working in August of 2008, I have had NO energy to do house work. So, a lot of recycling had piled up, and I mean a lot! I also had a fair amount of stuff that was laying around that I wanted to get rid of, but never made it to the dump....stuff like old small appliances that don't work, etc. By 10am, this was all gone. It was all picked up, taken away, and to add to that, it was fun. We laughed a lot, and talked about all sorts of things...I really can't believe how much got done. It was AMAZING, AND TOTALLY MADE MY DAY. So, just as she was leaving, the phone rang....

For some time now, I have been wanting to learn an art process called encaustic. It is basically painting with hot wax. I have been researching it on the internet, and looking at a local artist's work, and I think I would very much enjoy it. But, even if I wanted to try this, there is no way I could afford the materials. Then I also was concerned that if i did buy all the materials, what if I found out I didn't like it? So, I just continued to dream. A friend of mine who I have been discussing this with, called me the other day to tell me that SPA (Studio Place Arts in Barre) has a class on encaustics on July 12th. I looked it up on line and decided that because I have some money I got from an insurance policy I had that paid for each day I was hospitalized, that maybe I would splurge and do the morning portion of the class which was just an intro. The afternoon class was the hands on, with a materials fee. So I called them, and found out that they were probably full. I also asked if there was any kind of discount that I could maybe obtain, but she explained that was not possible. I was very sad, and called to tell my friend this news.

So, the phone call.....she called to tell me that she has paid for my attendance for both the morning and afternoon classes, as well as the material fees, and got me a year's membership to boot! I was speechless. I was well, I was all sorts of ways! She said "Happy Birthday". I told her this was too much, it isn't like she is made of money, and she said "Ok, Happy Birthday and Merry Christmas". I was still stammering for words....and she said, "Ok, you can either say thank you, or no thanks, it is up to you!"

So, wow. That is about all I know how to respond to all this....WOW. The world has seemed so kind of well, cruel lately. Yes, I have been trying to handle it all with a smile and with my chin up, but although I was certainly finding things that were good amongst all the crap.....today was just like over the top reminding me that good things do happen. So, my reader friends....that list of woes at the beginning, that was there to let you know that even when you think the world may be turning against you, that there is not ever going to be good things coming because as I had decided.....I must have been very bad in a past life, and I wanted to make up for it all in one fell swoop!

But no...there are angels amongst us. Don't get me wrong, I have had other good things happen to me, I have had some incredible generosity given to me when I have been in a bad space. In fact even in these past couple of months, I have had some very good, nice, amazing, wondrous things happen. I have met some very amazing new friends, and have even gained a little energy back...(sssssshhhhhhh, I don't want to say that too loud, cuz that I am enjoying and I don't want the bragging fairies to hear me).

But, I think these two very generous, out of the blue, expressions of kindness happening on one day, just hours of each other....well, it hit me.....there is love in this world. And, you don't even have to go out and look for it. Sometimes, it just comes to you unbidden. There is nothing like a fairly serious illness, that goes along with the long term chronic illness to make you start wondering about life, and in particular viewing life from an existential prospective. It is easy to forget about love. It is very easy to wonder how anyone can love you when you have nothing to offer (at least it feels that way at times). It is also too easy for me to accept that. It is what it is.

Until today, when love in it's pure no strings attached form, just the way it should be...came knocking on my door. I am so happy I answered! This learning to love yourself stuff has it's challenges, but also look at the rewards!

Have fun wherever you can! or a good case of potty humor!

2010-07-09T21:01:00.000-07:00

This is me. This is me about to go in for a colonoscopy. Why my reader friends, why would I take, much lest post a picture of me smiling, and about to go into a colonoscopy? Well, sit back, and I will tell you a story. I think it is funny. It has to do with the picture, and with a friend of mine who we will call John. (basically because that is name).

John is, amongst many other qualities, a very creative and funny guy. I won't go into the whole story, you can check it out for yourself, but John has a website, Phoons.com. He asks that people do the pose he has called a "phoons" which by the way is also his nick name, and post it on his website. (oh, I suppose I should also include that if you go to his website, you will see the real phoons pose. These days I am having problems standing on both feet, so the actual pose was a little complicated for me).

One of the ways that I kind of bonded with John, was his compassion toward me when I was in the hospital. So, while most people like to do the phooning pose all over the world for his website, I thought it would be funny to do a phoons, while preparing for the colonoscopy. But, here is where it gets funny. (at least I think so, but as you may know, or are figuring out, I can be a little wacky).

My friend who was responsible for giving me a ride home, was going to take this picture for me while we were waiting in the pre-op room. However, she was going to meet someone to go swimming while I was swimming in a different way, and because the doctors were running kind of late, she had to leave before we got into the pre-op room. I was kind of disappointed, but I told her I would live if it didn't happen, so she left. A little later as I was now fully gowned ("open in the back and please don't tie it"), and laying on my little gurney, I heard a nurse say, "I will let you go back there, but you can't take any pictures!". My friend appears escorted into my little pre op cubical with a nurse who looked very concerned. She says, "This woman says she is a friend of yours, and she is here to take pictures?" I assured her that indeed she was my friend, and all was right with the world (although I couldn't figure out why she was back so soon and not out swimming).....but not from that nurses perspective. At first she thought she wanted to come into the procedure to take pictures.....OMG NO!!!! I tried to explain that I simply wanted her to take a few pics of me right there before I went back into the "procedure room". Well, as they say down South, she didn't cotton to that idea at all!! So, I tried to further explain.

"Well, you see, I have this friend who has a website, and he puts posts of people in these poses on it. He has people from all over the world....." I was interrupted.
"Wait, you want to put a picture of you, like this, on the internet? I just don't think that is wise, and I don't think the hospital is going to let you. I am pretty sure this is against their policy." I once again try to explain, "I am not taking a picture of anything that would be liable. Here let me show you" I got off my little gurney thing, and showed her the pose, mind you with my gown not tied in the back. She looked a little horrified. "You want a picture like that on the internet?" I realized where she was looking....."oh of course not, I will tie the back up!"

I guess that gave her a smidgen of comfort, so she said she was not going to promise anything, but she would go find the head of some department that makes the decision on if patients can take pictures in their gowns in their little pre-op cubicals.

While she was gone, my friend and I wrestled with the idea that no one would even know if we quick like took this picture. But, then I remembered the flash. So then we wondered, what would they do, take away my camera, make me delete it? Kick my friend out? Tell me to leave (hey now wouldn't that be a bonus!!!). But she returned and long story shorter, she said go for it. And came in and helped my tie up my gown! (oh, BTW, for those astute readers who are really paying attention, and saying to your self "self, why did her friend come back so early, why wasn't she swimming? Well in the short time we had been inside the hospital, pop up thunderclouds were out there. So, they decided not to chance it, so basically I guess mother nature wanted this picture to happen).

It became very funny, and was a good thing we did wait for the ok-do-ky....as it took us forever to get the right pose. However, not only were we laughing hysterically trying to get this pic, so were the nurses, as well as a friend (who I ran into in the waiting room, who was also going to have a procedure, and he was in the cubical across from me. Vermont is such a small state! he he).

So, according to John, this will be on his website, but...I am just writing this because I want everyone to think about this.....no matter what, even if you are about to face one of the most ickiest procedures invented....HAVE FUN!!

Commentaires and Colonoscopies!

2010-07-09T01:03:00.000-07:00

I am having fun with the colors of the fonts. I am thinking this one may be kind of hard to read, but I am kind of a zork head right now, and to me it just looks pretty.

Ok, today, the day I have been looking forward to, I have been waiting for, I have been dreaming about....it is over.....the dreaded colonoscopy! I know, everyone who has had one says the prep is the worst, and since I have had about 5 or more of them over my life time, I agreed, (until today).
I won't (funny right this moment the guys from "two and a half men" are doing a commercial for a colonoscopy right now)....anyway, I won't go into details here, cuz that would just be wrong.....but the meds that I were so looking forward to, the ones that give you that blissful sleep.....apparently no longer work for me. I was awake (more or less), and feeling every painful inch of that hose! Even the doctor apologized when he came in to tell me he found nothing (yeah for that)...but now I am thinking.....why the heck did he go on with it, when I remember begging him to stop.

Years ago, i had one and was totally awake, just a little valium to calm me down, and it didn't hurt like this one. I wonder if now that they are used to having being be out, so they don't feel it, they get a little more rough. Anyway, it hurt like hell, it is over, and he said I don't need another one for 10 years!!!! For that I am very happy!!!

Ok, really didn't like that color, so here is the rest of the story...what ever that may be? Now, I only have one more visit to another doctor, and they will hopefully put this all together and find out what this is i am going through. I hate to say this, and I know it will sound negative, but: I am thinking they are going to find nothing diagnosable....again! This seems to happen every two years or so. I get really sick, my lab work gets all wacky and then suddenly gets better. Then we are left to the head scratchin' I am kind of surprised my doctor still has a whole head of hair! This last one was the most serious set of symptoms I have experienced to date, but I think it will be chalked up to another case of maryitis. Yes, I am just allergic to myself! what a thought huh?

Too bad there is not a sexy nature to this as there is to young college women, i could make money..."immune system gone wild"....it is like every two years, my immune system goes on this vacation, it eats everything in site, has a huge old party, and does not clean up after itself. Then whatever parts of my body that is left to clean up after them, just decides that is a good time to go on strike. So there, that is what is going on....have not idea what that would be in doctory terms, but I bet that is it. I can see it, all those little beer cans, drink umbrellas, drug paraphernalia, dirty wet beach clothes......the kidneys just say WHOA WTF? I am out of here, I am going on a mediation retreat, leave me alone, I just want to sit her and not have to process anything....I will just watch it all going by, like the clouds. Yep, that is what is going on in my body. And like I said, to bad some B rate film maker wouldn't think that would be fun and sexy for all of us to watch, and make a film, and then I could get rich.....I mean, besides a kick ass social worker...i can't think of what else I got out of this last experience!

Another topic, another color: so, after the dreaded colonoscopy....what should I do, but have my friend drive me to the art store, and I got lots of materials (free mind you) to start doing more of the yarn paintings. Well, not all of it was free, but I have got a great discount on all aspects of getting the materials. I bought the "yarn" (which I put in quotes as it is not really yarn, but I will leave you in suspense until the first piece come out), and got a huge discount on it (just because the woman and counter decided at that moment to be nice, she took off $7.00 from the total price, so instead of 16.00 of materials, I only paid $7.00!!!! Then, I went to get the wax, because the wax I thought i could use, was not 100% beeswax (I did batik for years, so I have lots of that around here), so when I went to the counter, the guy said "Wow, we just put this on sale, it is 20% off! Then the biggest coo ( not sure if that is how that is spelled), I was standing there and they carried a whole huge big trash bag full of mat board parts by me, and headed toward the trash. WAIT!!! "is that going to the trash?" So, guess what came to me for no money? he he he he.......I believe that the muses are on my side! I am so excited to get back to doing art work. How could have I ignored this part of me for so long? Maybe why i am sick. maybe if i can go back to being creative in action, not just thought.....maybe those body parts will not think they have to go on a kick ass party ever so often just to get their ya ya's out. Maybe, just maybe, they will be so happy, they will all work together and the healing will be begin. Lets hope!

Pyrotechnics and Pain...

2010-07-06T09:34:00.000-07:00

I think I took about 100 pictures of the fireworks, but this is the only one that turned out well. Digital cameras and fireworks take some getting used to! Timing is everything apparently.

But, this is is the story of how i spent the day of honoring that on some date many many years ago, we gained our independence from England. At least I think that is what it is about. Bad little American!!! So, I gave it a little thought, but to be honest, not much. Don't start getting all mad at me yet, if you are of the ilk to care about these kind of things. But first, I was going to explain what at least about oh maybe 500? people did with me to celebrate this day. I went to Thunder Road. For those of you who are not from around these here parts, Thunder Road (other wise known as "the nation's site of excitement") is our local stock car race track. I appologize to anyone who knows the actual name of what this race track is, I am not sure if they are really stock cars....

Last year, one of my friends told me that she had always wanted to go there. However she did not think anyone would agree to go with her. You see, there is a little bit of a reputation amongst some, that this kind of entertainment is for a class of people that would be labeled redneck. In fact kind of hard core redneck, so her friend base being those who most would most likely be considered "old hippie" types, usually are not into heading off to see cars riding round and round a track. Well, I am pretty much always up for an adventure. Back in my younger days my motto was: "I will try anything, once!...except for heroin!". That sense of adventure continues to this day, although believe me, the things that I will agree to do these days has more to do with what I CAN DO, more that what I WANT TO DO! LOL So, I agreed to go with her. And, we discovered, it was fun!

I am not sure what is more fun for me, the people watching, the actual almost visceral excitment of the cars themselves as they race by, or Al's French Fries (again for those of you who are not from round these parts, Al's French Fries are Fabulous!!! There are theories about what makes them so good, but whatever it is, they are to die for), or for the actual entertainment of the announcers who are funny, and the special events that just make it fun. Whatever it is, we found ourselves going a number of times last summer.

This was met by some eyebrow raising and soapbox preaching by a number of my friends too. I got all the lectures about how in an era where we are all freaking out about being "green" this one event that actual uses the evil petroleum as a necessity. And then there is the smell of the oil, the roar of the engines...blah blah blah. Yep, there is all that stuff, but still, I think it is fun!

So, this is what we decided to do for the 4th. Unfortunatly the walk just to get inside the gates is quite a hike, not to mention there are some pretty steep little bumps in the sidewalk that lead to the grandstands (for those of you who do know about Thunder Road, yes, I sit in the stands. I no longer have the ability to enjoy the reason for sitting on the grassy knoll which is called Budwiser Hill, and is the only place you can drink adult beverages, or smoke cigarettes). So, the fun and excitement were just not there for me as i sat and watched the people, the cars, and ate the french fries. I was in too much pain.

But, being the trooper I am, I decided that i did want to watch the fire works, so we stayed until the end. I am not sure why, but the fireworks at Thunder Road are the best I have seen almost anywhere in any state or celebration I have attended!! Last year there was also a display (although it was not on the 4th of July), so I knew we were in for a treat if we waited. And we were, they were magnificent! But, like I said above, being in pain so bad that I wanted to throw up, was kind of taking the enjoyment right out of this. And, it just isn't fair. Ok, but here comes the thoughtful part of this blog...

I will even change colors....and for more astute of you, you will notice it is red, white and blue!!!

So what for the pain I was in!! What I had been thinking about most of that day, was the pain other families are feeling during this day. You see, I am from that generation where the Viet Nam war made us so anti war, anti anything to do with war, and for some anti American. I picked up a little of those feelings being of teen age impressionable age. And I wasn't an "old hippie" then. I was more like a baby hippie. And I was confused. Most of the boys my age were not going over to the war, but a few who did were just a few years older. I remember the way they were treated when they came back. Loved for the electronics and drug they got while there, but that was about the extent of how much we cared about and for them.

I am so glad, that while I still think war sucks, and i still wish that we would have no reason to have any of our citizens participating in this war, at least we now realize that what they are doing is to be respected. I may be wrong, (I have moments of that, *tee hee*), but to me the fourth was not about our soldiers, but just about winning our independence in a long ago, some don't even know the name of war......but now, we are celebrating the soldiers. As we were singing the "National Anthem" I remembered that in grade school, we put our hands over our hearts. I don't remember doing that anymore. I looked around, and i saw a few, but very few people with their hands over their hearts. Mostly what I saw was people laughing and talking, trying to keep their children from running off, or crying. I didn't really see too many who were actually paying attention to the words, to the feel of it all. I decided to put my hand on my heart, and low and behold.....I had an experience that surprised me, I started choking up. A tear ran down my cheek.

I don't know why. Is it that for that moment, I felt for all the families who are not celebrating with their loved ones because they are at war, or even worse, will never again celebrate with their families because they did not make it out of the war alive. I don't know, but for that minute or so, I felt something very deep. Then they said "start your engines"....and varooooommmm, the feeling was gone.

Not the pain, oh that was still there, and more intense than ever......but the pain that I live with, it is nothing. It is not like the pain of losing a loved one to a war. Although my pain hurts, and is intense and keeps me from enjoying life, my heart goes out to those with the other pain. I am so sorry that you have to experience that kind of pain. No one should have to experience that. So, on this 4th, I am thinking of you. I am thinking of your pain, not mine!

Wasted days...or how to live with an invisable disability

2010-07-02T10:24:00.000-07:00

I just woke up. It is 1:25 in the freaking afternoon! Of course, I think when I fell asleep it was around 9am, but still. I do not like wasting these days of summer. It isn't like I live in a place where we can take these days for granted!

It also isn't like I can say, oh well, I have the rest of the day to go do what I want to do.....it just isn't like that in my world. I just woke up, but it is going to take me at least, and I mean at least, an hour to move easily. My muscles/joints/fat...whatever....is all screaming at me. So, now, I wait for the pain killers to kick in. I should have taken one around 8am, but I missed that one....so now I am paying for it. Maybe you reader, maybe you are too going to pay for it, as I don't think this is going to be a cheery, kind of positive look at how to live with chronic illness/pain kind of post.

I don't think I have explained what it is that is making me feel this way. Partially, that is because no one really knows. I have a plethora of diagnosis, of ideas of well intended friends and family, and of internet based ah ha's. But, lets just go with the current "working" diagnosis (or whatever the plural of diagnose is)....

For many years, I have been going on the diagnosis of Chronic Fatigue, and Fibromyalgia. And before that, it was called fibocitis (but that was just one doctor many years ago who I thought was a quack, mainly because I didn't like that diagnoses, which turned out he was probably right). But, I have been getting worse. I have been telling my doctors that i believe I was getting worse, but...fibromalgia does not get worse, there is no progression to it.....so someone was not correct. (although I love my current doctor, there have been times..........) And of course that someone had to be me....as I don't know my own body, and apparently lab work doesn't lie.

But, I was getting worse. I could feel it. I was not wanting more pain killers so I could get high, that is ridiculous to me, as I don't even get high from the stupid things......but because there are apparently more people out there who do take them to get high,than who actually take them for medical reasons, I must be wrong. I must be wanting more, because those people out there who do get high ask for more, so they can get higher.......no, I JUST WANTED THIS FREAKING PAIN TO STOP. Now, if he were going to write his opinion of this, my doc may see things differently...but here is my take on it: he wanted to believe me, he did believe me.....but then, there are those other medical professionals who are saying look at those drug seekers, beware of those drug seekers.....and then there is the DEA saying....watch out, all those people are drug seekers, all they want is either to get high, or sell those drugs to people getting high......they are bad people all those people on pain killers....watch out.

" But but, this woman is nice, and she seems to be in sooo much pain, but wait, didn't I just give her a prescription the other day, and here she is asking for more...hmmmm, maybe those DEA/drug seeking believing docs are for real............" anyway, that is kind of what I imagine is going on in his head....but I know, the pain/fatigue/weakness was getting worse.

So, it did. It got so worse (I know that is not correct grammar), it landed me in the hospital two times within a 2 week time span.

The first time, they figured it was the narcotics. After all, it looked like an OD, or at the very least, it looked like my kidney's failed because I was so gorked out on the narcotics that I must have forgotten to drink fluids.....(my doctor was on vacation during this episode of my life), so get the kidney's functioning, take her off of her pain killers (well most of them, we don't want any nasty withdrawals going on), and send her home. (oh, how I got to the hospital in the first place, my friend came over the night before and I was not making much sense. So being worried about me, she came over the next day, and found me unresponsive, eyes rolled back in head, doing something that looked like seizing.....she called 911). I didn't believe them, I didn't think I had taken too many pain killers....but I had just been prescribed a more potent, and different kind, so maybe???, but it still just didn't seem right to me, but as we already have established....who am I in this story. anyway? I had read however, that kidney failure can make you delusional, so....I wondered???

Ok, round two: I am not going into the details....but two weeks later, I was feeling so sick, I didn't know if I was dying, or just wanted to....and I really didn't care. I was praying that God would just take me.....but, instead my prayers were answered by putting me in the hospital when my doc, the one who knows and seems to care about me....was on call. And low and behold, he did some sleuthing, and it was not anywhere close to me being on pain killers that was the culprit....but he also had no idea what was. What we do know: my immune system appears to be attacking my muscles, which then makes some kind of enzyme get into my blood stream and when it gets to the kidneys, they say "I can't handle that, I think I will just shut down". (ok, this is my version of the story.....again, I am sure my doc would have a few more words to use, those big doctory words that keep us from understanding what is really going on with our own bodies). But anyway, now I have a new diagnosis, but only a working one, as some of the tests suggest it is, and some say no way.....but for now, lets call it myositis. Oh, and by the way....yes, there is a reason for your pain! And, guess what, the pain killers had nothing to do with this problem, and well looky there.....you are taking them as prescribed. (that is not my doc's voice, again I think he is somewhere close to God at this point (although he doesn't think that, and that is why I like him). But, I have lots of other medical professionals in my head who deserve a good talkin' to! LOL....

Now, just for fun....lets throw in another diagnosis.....this is one I have come up with, and I think my doc believes, but I am not totally sure. I have had these wickedly painful lumps in my body for years. In fact, about 15 years ago, a rather large one formed and was so painful that at times I thought I would pass out. But, yet again, "this person has no idea how her body works, silly little thing, must just be wanting narcotics".......but OMG this thing hurt. They all told me, that it was nothing, it was just a lipoma, a fatty tumor (but of course I would have those, as I was [at the time] more than 100 lbs over weight) and, those don't hurt.....so, go way, and leave us to do some doctorin on those that really have problems. (please know, that my current doc was not in the picture at this time). But a few years later, he was, and by that time, I had named this thing "louis" Louis the Lump. The good doc would ask ever so often about louis, but, he could not figure out exactly what louis was, as lipomas don't hurt. well, yes they do....according to the internet and a diagnosis called "dercum's disease". It is listed as #3 on the NORD list. Which NORD stands for National Organization of Rare Diseases. (There are quite a few of us who have this, and we are banding together...so watch out you disbelievers!!!).

Ok, so there is my entirely too long explanation of why you will be reading (I hope) this blog of what do to when your body gives up on you (funny, that song to the show "COPS" was just being sung to what I just wrote: bad bod, bad bod, what ya going to do? what you going to do when it gives up on you, bad bod..." he he...

So, I am still going through tests, and being referred to other docs who have other opinions, but "at least it is something". Yep, at least it is something......and now that I have written this, maybe if someone is actually reading this, is maybe reading this and saying "wow, that sounds like me, maybe I should look into Dercum's..or Myositis".....then, maybe my day is also not so wasted!

Creativity by moon light...

2010-07-01T11:56:00.000-07:00

One of the issues about me you will learn, I don't sleep. Well, not in the --get 8 hours at some agreed upon time -- kind of sleep. I can't remember when sleep was ever something that came easily to me. Now, because of being in pain, sleep is even more of a strange bed fellow..pun intended!

I am not sure what it is about 4am, but that seems to be the universal time that pain and suffering descends upon myself, and I believe many others. I was recently in the hospital, and every one of the all together 8 nights I was there, 4am would be a time for hot packs, and pain killers. Why is that? Is there some kind of portal that opens, and allows all the suffering enter the Earth plane, so it can tiptoe unbidden to it's weary victims. It tiptoes in, then does the slam dance like a tweeking mosh pit groupie, into every freaking cell in my body.

So, last night, I am chatting with my owltlaw (not a typo) friends (beautiful people who have all found one another because of 2 owls and the camera/chat that followed their escapades), and suddenly, I felt sleeeepy, very sleeeepy. I actually turned off my computer, and turned off the TV, and turned off the light, and.....woke right up! CRAP. But, this time something was different. I reached for a new book I am reading, but that just didn't feel right either. I was confused. It was like a distant little voice deep inside was trying to get my attention.

At first, I felt kind of listless. I thought maybe I was hungry, but nothing sounded good. I had right next to me, my usual bottle of water mixed with vitamin water so I was not thirsty. But this was a need, a need that felt familiar, but also like something that was long lost; it was a primal need. Did I want to scream? I decided to sit with it and see if through meditation, I could allow whatever it was to come forward into my consciousness. And there it was.....

I wanted -- no needed, to use art materials. It had been awhile. I had picked them up from time to time thinking that I should experiment, or create something. This however was insisting. I was so wide awake, I was buzzing. I felt an aura around me, a creative energy buzz that was slightly uncomfortable, but oooooh so joy producing. And, it also came with a partial vision. Not so much of an image, but of a kinestetic memory, a final idea of what materials I was going to find, and use. Wow, some door just opened, and I walked through.

The image is a close up of the art work, that I produced. It is a technique called yarn painting. I have never tried it before, so what you see is an experiment of sorts. It really doesn't matter though, what it looks like. It was the process, more than the content that was so exciting for me. I did it! After literally, a couple of years of not doing anything more creative than throwing pickled ginger into the beans I was cooking, I used some art materials.

I am happy. Did it help with the pain? Not really, I wish I could say it did. But, does the fact that I did this mean that maybe I am feeling a little better? Well, that I am banking on!

This is a first! (one)

2010-06-30T21:11:00.000-07:00

I have finally decided to jump in and join the blogging generation. I do have lots to say, about many things; so here I am, finally. I hope to cover many topics: deep and introspective, silly and entertaining, informative and supportive, pithy, witty, wise, and wonderful. There may be a spiritual tint, a political hue, a sprinkling of humor.....but what i will always strive for, compassion.

Here is something that I think may be important to know about me right off the bat...there will be typos, misspelled words, and probably atrocious grammar. You see, I could go back and correct every mistake that I will make, but I don't want this to be tedious, I just want to have fun, or be able to spew forth the thoughts that bounce around my mind. So, put away that red pencil, and just relax and read for the heck of it all.

If what I have to say pisses you off, well, I am sorry, but these ideas are going to be the way I see things. I understand that in this big ol world, we all have different ways of seeing things, of thinking about things, but hopefully we can agree to disagree. I welcome opposing views, but please, let's be nice, let's be constructive, and let's leave this place nicer than when we found it.

One of the topics that you will most likely find here is what it is like to live with chronic pain. For those of you who know me, that does not mean I will be doing the poor me thing. (well maybe sometimes) Mostly what that means is how I am coping with an illness that can't be seen, that at the moment isn't even diagnosed, but has taken not only the life I had, but the life I dream of away from me. It sucks. But, I find humor in it, so be prepared, you may find a chuckle or two here.

Of course there are going to be days that I am not feeling too happy, or funny, or witty. There are going to be days that all I want to do is babble forth about how life is not fair, cuz it isn't. I will hopefully be writing these rants because i want others to learn from them.

So, I guess this is the time to actually introduce myself. You know, I don't even know how this works. Are there going to be people reading this who I don't know? Or will just a few who I know think they are bored and come here to see what is on my mind? Ok, I will assume, just for the fun of it all, that some of you don't know me. (what is even funnier I suppose, is that I assume anyone at all will want to read this!! Although, I have been encouraged by a few people from message boards I belong to, to write a blog, so this is for you)....

My intro:

This is me, I am: gosh, you know what? I really don't feel like saying all the normal blah blah blah stuff. So, for now, here is a starter.....I am a woman who is about to turn 54. I live with 3 of the most wonderful creatures I could have found to live with me, 2 dogs and a cat. (you will meet all of them in due time, maybe even with pictures), but the most important part of knowing them, they are all 14, or about to be. I have an american dingo, aka carolina dog, a shih tzu, and a meatloaf of a cat who probably has some russian blue in him.

I have lived in many places in the U.S.A. but my heart (and currently my body) lives in Vermont. I dream every winter of leaving, but then the 2 months of summeroid weather comes around, and I know why I live here. I love nature, and if there is ever anywhere that I have lived that provides natural beauty, it is Vermont. We are all permanent fixtures of a postcard! Until I got sick enough that I just can't do winter sports like stuff any longer, Vermont was perfect. Now that snow and cold is more of a hassle, I do think about leaving. That makes me sad.

I worked in the mental health field for about 30 years, but in 2005 I ended up having to go on disability. I miss my career. I loved it. I have worked with many types of people, and settings, but the last was being an adolescent and family councilor. I was hoping to return to this profession, but I have finally realized, it isn't going to happen. Probably, there will be some of this kind of pondering about my future included in this blog. It has been fairly difficult going from the dream of hiking the Appalachian Trail, to being happy if i can stand long enough to do a few dishes, but hey.....that is life....at least mine.....and why here we are, meandering through a mary mind!!!