Saturday, April 25, 2015

My Body is Falling Apart

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I've been having this odd recurring dream lately. In this dream, I am going to swim in a pool and the water is warm and luxurious and I am far thinner and fit. It is almost like a dream of another life. It is one I wish I had. People take health for granted. One time I asked God for another go-around. Christians do not believe in reincarnation but I would like to see what life would have been like in a normal body.

Sometimes lately I ask myself, why did I have to be the one in five million with a body that is so scary?  I am having some big time health struggles lately. I am not in acute medical danger right now or I would already be at the ER but I am exhausted. I have not been right since that long time illness last winter. I have bad visions of my narc family cheering upon my demise.

 Insulin doesn't seem to even be working on me since I started on some and my sugars are in the 240s. One good friend assured me, that insulin when you first start works gradually and they have to adjust the dose, and I am under the care of a visit at home diabetes nurse right now but it seems strange. I thought it would work better then this. Its good she told me this though. Of course worry-wart me is wondering if I am some rare person insulin doesn't work on then I will be screwed.

On May 5th I find out if that kidney lesion was cancer or not, and yes I am scared.

I read they plan to do a head transplant on someone. If they figure this one out and it works, I'll line right up even though the whole concept seems Frankenstein like.  Put me on a skinny body that has a high metabolism.

I was supposed to go on an antibiotic last week but they called in one, I am allergic to.  I wish I had thought of it when the doctor was here but was paying more attention to my diabetes problems and insulin. I get brain fogs all the time and am paying for that one big time. Everything seems too complicated. Does anyone else feel like that or am I going senile from being sick and growing old? I can't keep track of things as well as I used to. I had to make 4 phone calls and still nothing has been called in. I am not sure why my doctor did not call one in.

I don't feel sick as far as an infection goes but they did a test for a UTI which was positive. I don't have symptoms but they are worried because of the high blood sugars. The nurse told me she thinks I should be on an antibiotic since my sugars are so high and there were no changes in the diet and elsewhere. When the nurse is here, I'm going to have her try and get my doctor on the phone. If I get acutely sick or get a leg infection, I have a refill on another antibiotic but the pharmacist told me that one didn't work on UTIs. I have a sinus infection in the works too.

 Some of this medical stuff wears me out. It gets tiring. I didn't remember the name of a drug and got screwed for four days trying to call people. This includes having the pharmacy sending a fax, a call to my doctor, and calling the nurse. Overall I made 7 phone calls before I gave up for the weekend. Maybe I should have just took the antibiotic related to penicillin. [I'm allergic to penicillin]

Sometimes I worry if I got really sick, I would not be able to get anything done as I would collapse in bed and nothing would get done. The Victorians became invalids and I'm there. My husband needs to learn how to cook as I cannot live on hot dogs but I wonder if he is noticing how much I am trashing the kitchen even to make vegetable soup or a chicken salad wrap?

I was ready to have an Aspie meltdown and while I made all phone calls, simply did not want to make anymore.  I hate the whole "drug" system and believe there should be full legalization of everything where I can go buy whatever I want off the shelf. without being on my hands and knees for it. I am for complete and utter drug legalization across the board for all drugs.  Does this shock a few people but the phone marathons have worn me out. The nurse is going to be in shock when she finds out I didn't get any on Monday. 

As an Aspie making constant phone calls stresses me out and creates severe anxiety, especially when you are required to bug people over and over,  having to cloak some semblance of politeness and rationality and then your Aspie/ACON over sensitive brain thinks they are going to hate you for calling them a million zillion times. Then you give up because you can't take it anymore and you already called the pharmacy 10 times to see if anything was called in and it's melt down time. What is with the medical world? Why do they put things like this off. Am I one in a thousand being overlooked? The neurotypicals seem to complicate things that should be so simple.

I've never had diabetes do this to me too either. My body is falling apart. I joined this board for very fat people and noticed these other 400 and 500lb people had money, jobs and lives. While they had some health and mobility problems no one was sick like me. It kind of shocked me. I almost wanted to ask what their secret was. Midlife crisis or end of life crisis times 10. What the hell happened to me? Sometimes I dream of being anyone else but me. It's not self hatred just a desire for escape from all the suffering and economic woes. I want to be "somebody". I want to "belong somewhere". Aren't those natural human desires?

Some people tell me I would be more healthy if I was less of worry-wart. I sometimes wonder if I should just become irresponsible and focus on having fun, blood sugars be damned, since my body is falling apart anyway. I hear about diabetics all the time who say "screw diabetes" and wonder if this is what motivated their  stance. My doctors don't realize that fear of blindness kept me the most compliant diabetic on earth.  Ever since I saw Mary Ingalls lose her sight on "Little House on the Prairie", this is one medical outcome I never wanted to face. I'm already deaf. Interestingly enough the diabetes nursing center told me being a diabetic like me for as long as 15 years without needing insulin is almost unheard of.

 I keep talking to my husband about "running away". Run away to Finland or New Mexico or run away from this body? Sometimes it horrifies me what has happened to me. Absolutely horrifies me. Even Job had more normal body then me.

 Austerity has given me nothing but a headache. I laugh at all the people who say EAT HEALTHY AND DIET and it will solve all problems. My diet has been tightened down with screws and I may as well be eating 5 pies a day by how my body is responding. Sure whatever you say "Fat Logic" Reddit board, I just don't believe in that magic trick anymore.

This body is one of madness. Sometimes I look at other people and the way their bodies work and are all put together, and I think how did it work out so well for them? I am tired of having everything be so complicated. One does think about life quality and what does it mean if your life is nothing but pills, laying in bed, and exhaustion or trying to find happiness while hiding pain?  What if you feel like you are losing the battle? There's no books out there to tell one how to deal with almost 20 years of serious illness or going mad from one in 5 million rare health problems?

14 comments:

  1. Oh, my, I feel so badly. I wish there was something I could do. I know we are not supposed to question God, but I do it too. Of course we want better. I want a stable mind, but my mind is still an automatic race to fear and humiliation.

    But I just wanted to say, what a therapist said to me once. As far as making phone calls. It is hard for me too. But the therapist told me that I am to think of getting my needs met regardless. I'm hoping that kind of helps you. Kind of just trail the brain in that path.

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    1. Yeah I have been struggling with questioning God lately too. It seems to be a new development. One question is, "Why did you give me this body to begin with?". There are times my faith is dependent upon reading the book of Job. I want a stable mind too and hope I do not crack up LOL.

      I failed on this go around to get the needs met but hope to Sunday. I don't feel like I have an acute infection but there were times like this before where I burned down the phone lines. Having a blood sugar of 240 this morning even on insulin, I will have to go back to battle Monday and hope nurse will help. Thanks Joan.

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  2. Years ago they performed a head transplant on a dog and it lived for quite a long time. They were not sophisticated enough to join the spinal cord back together so the dog was paralyzed from the graft point down.
    http://en.wikipedia.org/wiki/Head_transplant

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    1. Interesting....

      I did have thought later, where will they get the bodies from it is kind of gruesome, they can't transplant heads onto bodies that died in accidents or had an organ fail.

      Some of our science is getting a bit "mad science"

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  3. I hate being dependent on other people. I trust the people around me to not let me suffer but each task I loose the ability to perform throws me a little further into depression.

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    1. I am glad you have people around you who will help. I believe I would have not made it without my husband. Without him, I am definite nursing home material or group home material unless there are social workers that come to my aid and provide complete housekeeping and food shopping services. Even then, the type of Aspie I am, I don't think I should ever live alone even on the emotional front. A lot of things are overwhelming to me that normal people can brush off. I know as I slow down lately and the last two years seemed to have taken a toll, I am feeling the grief and depression too. I understand Q, praying.

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  4. I'm sorry your body is falling apart, Peep, and wish you could find out why it happened. I agree that making a lot of calls is frustrating and a lot of work. Sometime people just hang up or have an attitude that they want to say "next." Since I am hard-of-hearing, I asked somebody to call for me and get appointments or things I need.

    Your nurse gave you clues that somebody is hiding health information from you. You might have diabetes and some rare illness beside lipedema. I know it is hard not to find your diagnoses and get a treatment for it. I remember watching a movie called "Lorenzo's Oil" about a father who spent years trying to figure out his son's mysterious illness. He did a research on his own and read medical book himself. Not sure if you could get access to a medical book online or from your library. I will pray for you.

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  5. Thanks anon. I am tired of the calls. I am going to see if things improve and if they do not, I am going to pack a bag on the 10th and just have myself put in the hospital and say I am sick and can't take it anymore. I am wondering why the insulin is failing and it worries me and now I think maybe I made a bad decision to go on insulin and maybe should have done Byetta or the other. I didn't want drugs that affect kidneys, or cause yeast infections--one of the new ones does and I already have candida in spades. I wonder if I have some rare health condition affecting the insulin or something else going on. I do believe I have gone into Dercum's territory. I will have to do medical research. I did get a library book to make decision about what next diabetes drugs, I'm allergic to all the Sulfas, I can't take the new stuff that affects kidneys or take the yeast risk. Actos and congestive heart failure do not go along well. I wonder if I have something rare too. They did tell me I was extremely insulin resistant years ago and don't know if that is playing a part.

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  6. http://diabetesupdate.blogspot.com/2008/10/making-insulin-work.html

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  7. Just keeping hanging in there, Peep. You are actually doing well considering all you have and are going thru. *hug*

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  8. Have you ever heard of Dr Roy Taylor at Newcastle University? If not, perhaps consider googling him. His program might not be for you, but then, because it's a short term (8 weeks) acute intervention for T2 diabetes, it might be.

    Obviously you'd need your medical team to be on board with any program. Best of luck to you.

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    1. Thanks, I will google him, though he is in England. What worries me is I was tweaking the diet even around 6 months ago and it seems to have worsened the diabetes so trust me I am confused. I will see what the diabetes nurse says tomorrow.

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  9. I am so sorry this is happening to you, Peep. I will definitely keep you in my thoughts and prayers.

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