I am back!

Back to the blog!  I noticed that the last entry was on August 12, 2011.  Hmmm, maybe there is something about August that makes me want to write.  My birthday?  It does make me a bit introspective.  One of the problems with my birthday, is it is one of those fixed points on my life's time line.  I can look back and remember where I was and what I was doing on that same date over the years.  I am feeling pretty darn good that I can still look back and remember what I was doing.  My memory seems to be growing much weaker than the one I was proud to have.  Maybe the bragging fairies are at work here?  Whatever, the long term memory is still intact.

I have had some really wonderful birthdays.  For a number of years, I would seek out adventures.  I road class 5 rapids on the Ocoee River in N GA.  One year I participated in a fire walk, and ended up with only a tiny blister on the bottom of my foot.  (others were not so lucky).  I have gone camping, mooned the moon, hiked, and drank myself sober on my birthday.  All good memories.  I have spent most birthdays with friends, very few alone....and for that I am grateful.  On my 30th birthday, I was in school getting my master's degree.  My class mates had the cafeteria make blueberry shortcake and bring it to our classroom.....that was special.

People say that getting older is hard to accept.  Thirtieth birthdays seem to be the one when most people experience some anxiety.  I did not.  Getting older has never been something that I cared much about.  I always wanted to get older.  I hung out with older kids, so I wanted to be their age.  I believe I spent most of my childhood and youth wanting to be older for various reasons.  That seemed to stop once I could get into the bars at age 18.  (legally....LOL).  I spent my early child hood wanting to get old enough to go to school.  Then I wanted to get old enough to...write cursive, walk to the store with friends, use a pen, have homework (that one changed fast), go to middle school, get my driver's permit, go to high school, get my driver's license, graduate, become legal....and drink.  (hey I am from Montana, where every other building is a bar, and drinking and driving was a sport).

The other milestones in life were not so much around age, as accomplishments.   Going to college, graduating from college, getting that first job in your chosen career, getting raises....etc.  Mostly when I look back over my life, what stands out most is friends.  Maybe because I am an only child, but friends were always the most important part of my life.  It makes me a bit sad to have lost touch with many friends.  But I suppose that is part of life.

Looking back over the years, I would say I had both a very hard life, and a really good life.  I once did a pastel drawing of my life.  It was abstract, and actually came out as 2 separate pieces.  My friend looked at them and said that no one's life was that diametrically opposed.  Mine was/is.  And for that reason, I am trying to find some balance.

That brings me to my current age.  Not that age has anything to do with this.  I recently wrote on my Face Book time-line, that I was having a hard time reading people's posts about all the good things going on in their lives.  I am having this reaction because Dercum's Disease is taking away the ability to do what I once was capable of doing.  Birthdays are hard.  I am now coming to terms with all this illness is taking away from me.  I look back and realize that I can no longer walk as far, or sit as long, or talk as long.....and I get scared... and sad.

One response left on my time-line is one that I want to respond to in another blog.  (I am not able to sit here long enough to write much more).  The response was basically about finding the positive in the negative.  The comment was about a friend of the writers who is bedridden, and her illness has brought her closer to her Lord, and how she is using that to reach out and inspire others.  She suggests I go to this woman's website.  In many ways I can relate to this.  However, I will not be using references to religion, I will be talking about spirituality.  Having an illness that decreases or stops the ability to move easily on this Earth, does give one the time for introspection.  As I said to someone recently, I am now much more a human being, than a human doing.

If I can commit to writing regularly in this blog, I hope to help readers sit for awhile in my P.J.s...yeah, that sounds bad.....but I was going to write...walk a mile in my shoes....but that doesn't work.  LOL    I am hoping to bring more awareness to Dercum's Disease, and what it is like to live with a rare illness in a rural setting.  But, I also hope to grow through this writing.  I am trying to figure out who I am.  I can tell you easily who I am not, or who I am no longer.....but who I am, well that is in the infancy stage.  And there you have it....back to birth.   I hope I can keep this interesting enough to not completely bore you.  But then again, if that is the case.....read it before bed!!!  LOL  Good night....

too stressed....

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

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...

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

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?

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...

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

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!

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!!

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...

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??

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?

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

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.