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?