Friday, July 16, 2010

I have had a denial from disability. I am disabled but not enough they say. Trying to decide if I appeal or go to work again some how. I am unsure how I would manage working and everything else. I am unsure what I will do. I managed a computer on payments that are lower than I have ever seen. Its a decent one and will work. I am going to talk to attorney about disability, and some other options. I will keep at my schooling and small business. I have many opportunities with that, I just need my health to co operate to do it. The med I am on now for Narcolepsy helps my fibro pain a lot also. It has been a huge help. I feel my brain working better again, my memory improving, some other issues I have been having improving slowly. Its a struggle to take this medicine. It does have draw backs I do not like. I struggled with the decision to try the med to start with, I struggle daily with it. I prefer to go natural, I hate the drugs. This one is yucky but it has helped so many things. I have been able to pin point when my Narcolepsy started, I was 12 years old. My mom has been able to also. It has progressed over the years. It effects many things, There is more to narcolepsy with cataplexy than people know. The sleeping is a small part. There are severe memory issues that are crippling, thought processing issues, the way things are thought out, understood or misunderstood, retained, finding words when talking to people. Like in a simple conversation I will not be able to remember simple words to talk, I have had conversations that went like this " I saw the um um uhh umm that thing in the sky with colors, can remember what it is" and in fact it was a sunset I saw, but remembering that was not happening. It seems simple like no big deal but it makes you feel like an idiot. I get things jumbled and dont retain them like I should. Studying for school has been a challenge, I read and re read, re read, and struggle through it, and sometimes I will read and retain it all, then later cant. So I have to rely on my books to verify everything for me. Its frustrating. There are many things. The kids can ask to do something, I will later not remember my answer, or that they asked. We have had lots of issues from this. I keep notes on everything, it all gets written. Even then if I forget to take notes, forget where my "Brain" is(notebook, forget to check it, well then I am lost.
Going places had gotten harder before new med, I was getting lost in areas I know well. Scary stuff. Forgetting where I am going or why.
Then there is the Cataplexy. Cataplext comes with Narcolepsy, its a weakening of muscles. Sometimes big very obvious- leg gives out, fall down, arm not working, head flop over, so many things, or so small like 1/2 lip not smiling when other 1/2 does. This is triggered by lots of things, emotions being biggest trigger. I have always been a clutz, tripping, dropping, fall upstairs and down, spend time on crutches, get off them and end up on them again due to tripping on nothing. The last few years I started falling, be walking and suddenly my right leg would not hold me up, down I would go, then the left leg started again, then my legs would just not respond and do what I wanted. It spread, it became more often. Right before my dx I was arguing with A and walked across the room, very upset. Next thing I knew everyone was around me, my head throbbing, laying on the ground, cataplexy full blown took me out! So now when I am upset, stressed, frustrated, angry, sad, or even real happy, I try to stay sitting, regroup and not fall. There are days I am afraid to go anywhere, If I have a C attack and am in public people want to call 911, its not needed. C only lasts a few seconds to 30 min. Usually never totally unconscious.
Then there is Sleep paralysis, nothing like waking up unable to move any part of your body, not feeling like your breathing, knowing you must be, your not dead, but no voice, no moving, feels like your pinned. Scary it is. And the hypnogogic hallucinations, when dream land meets sleep land, your part way asleep and awake, start to dream and they become real in the small part of your brain thats awake, never a good dream when that happens. I went through years of reliving past issues that could have been lessened had my N been dx sooner.
So all of this with the new med is lessened, improving much! I was with out new med for a few days, fumbling all over, clutz, dropping things, stumbling when it dawned on me and my mom at same time, it was C and I regrouped, calmed down and was ok. Thats when I realized how much narcolepsy with cataplexy has controlled and effected my life all these years. It was quit the realization, I didnt know if I wanted to scream in happiness, anger, frustration or sadness.
I saw my doc for it, he asked me how many other meds I tried before this, what all had I tried. we talk, I realize that my younger dumb years so much of what I did was self medicating. I guess its common.
So I go on using a medication with some icky possible side effects, worrying about it. But I have a brain again, slowly awakening from a long narco induced slumber, becoming aware of myself, my arms and legs that are not so clumzy, fingers that can hold small things with out dropping them, feet that can walk and not trip over air. I take it day by day and hope the possible bad effects dont get worse than they have. I worry about the possibility of not having finances for the med- $1921.00 a month for the dose I am on now. I worry about not being able to swing that.
But I am not falling as much, not falling asleep all the time, not waking up unable to move, or dream land meeting sleep land.
I now go to bed or try earlier, I take my med at night I dont take calls after I take it, I cant drive after taking it, I must have someone able to handle anything that comes up if I cant. When I cant sleep after taking it I have to be very careful of what I do or say, it may not come out right. I had someone tell me she would never take a medicine like this. I hope she never has to or is faced with N and the possibility. Its not perfect but I may get a life back thats been taken by narcolepsy with cataplexy, fibromyalgia, sciatica and myofacial pain syndrome. Still trying to get control of some things. I use natural methods when I can, preferring that, and when I have to using allopathic medicine. I have an awesome team of docs, and trying to find a balance of everything. Applying Natural medicine, allopathic medicine, nutritional healing all to try to get back some of my life that I so often feel robbed of by medical issues.
Trying to get things done I am unable to do now. Trying to accept my limitations without feeling like I am giving in or giving up. Not easy to do, I am so used to being independent, or trying to be. trying to do more myself, being energetic, and able. This has been hard.
Its been a few since I started this. Life is busy.
I am on a new med for a month now. With it I am improving some. I had a bad reaction to it and had to back down in dose. Its still helping some though.
Narcolepsy with C makes you feel like your lifes been stolen. The key is finding a way to take it back. Even if it means all your dreams change into new dreams, new plans. Modified plans whatever. I think this is where faith comes in. I have always believed in Enduring WELL to the end, not just enduring. There is a difference in enduring and enduring well. Its not always easy. Sometimes I feel I am hanging on by a thread, some days I feel like the thread snapped. Somedays I feel like giving up but not keep going.
With my denial comes deciding to appeal again or try to return to work. I am not up to working enough to support us yet. So I will appeal probably. Applying for Disability was hard and it messed with my head in many ways. To me I was giving up, giving in the disease. I struggle with it daily. Its caused depression. Trying to accept being chronically ill without feeling like I gave up is hard. Hopefully someday I can come to terms with it. Ideally I would like to feel well enough to work to care for my family. But until then hopefully I can find a way to pay bills, make ends meet, accept what is with out feeling to down.
I have had opportunities for business stuff. Unfortunately I have not been up to accepting some. I am trying to follow through on a few.