This is something I’ve put off posting for 8 months, and is just a statemant to let you know what’s going, in my life. You’ll get why I react sometimes to things in ways you don’t expect, but I think I’ve done well in the catagory of not whining and bitching. We all get too much of that daily.
I’ve been seriously sick since 1999-2005 and am just starting to function again. I have 5 years of almost no memory, it starts back up in 2005. I lost most of my friends during that time to various cancers and other crap. I don’t react well when people die anymore, even if they’re only an acquaintance. The only people I know any more are acquaintances, since when your ill and the few friends you have die, you don’t make ant new friends. My bad luck comes in streaks and I hope this doesn’t zero in on my family. When it rains it floods for me. Augh!
I never found out what was wrong, but my immune system was attacking everything. I was a swollen blimp covered in rash most of the time. Before the extreme swelling started occurring, my whole body had been hurting like when a limb tingles from falling asleep. I also got what I have to describe as Charlie Horses in all parts of my body. The muscles on my feet would contract and I had to press them against the floor and put my weight on them .I couldn’t bend my sausage like fingers, my lips would tingle and in one minute they were swollen as big as the skin would stretch. I’ve had blisters form from the swelling causing the cells to break. It started in July 1999 when I couldn’t stand for more than 10 minutes and had to shuffle around. In the summer of 2005 I was improving enough to start thinking in sentences again, so long as I used simple words. I came back to the board in the fall of 2005 as a good place to restore my memory . Everything was scrambled at the time and I didn’t know if a memory was fact or fiction. In the last couple of months my vocabulary has expanded to something akin to what it used to be. I still type words wrongly for weeks until something clicks and I realize how badly it looks. I still find my fingers typing words that I don’t mean to, but not this severe anymore. “The hills are high.” becomes “The duck is quacking.” Wrap your mind around that one. This spring I was still slow on recalling facts, and a few funny ones came up. Nuclear war was discussed and I thought “Well at least our space colonists will survive to keep man alive.” Then I realize how wrong that thought had been. The medical shows would have someone about to die, and I would think “Put them in cryo-sleep while you wait for the cure.” Or “Put them in stasis before they die idiot.” I lost all ability to deal with time. The summer went by and it seemed a week had gone by. This spring I couldn’t separate last years Mother’s Day events from last years. They all seemed to have happened the same time. This is only the smallest part, and I need to stop now. I said I shouldn’t post when upset, but I really did hold back. Now you people know a small part of the last few years of my wreck of a life. I need to state this “I was turned down for disability, and given notice that I was 100% capable of working, and since I wasn’t 65 I could only redress the issue by resubmitting. Now that my brain is working again I realized that was a straight out lie and have given relatives the order to get a lawyer to resolve this immediately, if I can’t think again. I’ve also had to deal with severe Sydenhams Chorea since 1st grade, which was enough of a problem to deal with alone.
Don’t wait until you “can’t think again” to file an appeal, for pete’s sake. Do it now. Look for a lawyer who specializes in SSA disability, and not one who advertises on TV either.
Sorry about your health issues. Hope things get better soon.
I submitted and appealed the dicision for a year, and then my brain was to messed up to think. I needed somebody to help at that point, and I didn’t get anybody’s help. It’s past the normal appeal deadline. There are exceptions to the time limit, but no lawyer is going to try that on a contingency fee based on what you’re owed. You lose all claims you dispute, when you file a new claim. I’m sure I’ll have to file a new claim, since the normal apeal limit is two months. They of course manage to drag their two month limit to about four or five months each time. My memory has just started working good enough since April that I can complete a task. I have sorted through a 55 gallon garbage bag of non junk mail for months. It’s bills and medical results. I’ll be filing bankruptcy soon, and hope to go after S.S. after. It’s not like I’m cured. It’s been the ability to supress the swelling that restricts blood flow that has allowed me to get to this point. An little illness is a major problem for me. I still can’t be in a room below 80F without every joint hurting. In a few months I’ll be back to not being able to move to well. I found that I can drive for about 20 minutes now, before I have to stop and walk around to get the numb fingers usable again. I still shift between getting better and worse. Two people gave me a cold two weeks before Christmas. Sometime in February I was functional again. The first sign that I’m in trouble is I get very emotional and then I can’t remember. I start dropping everything and tripping. The reaction hits the thinking first, but you don’t notice it right away when it starts.
AuntiePam: Thanks for the advice and concern. I keep wiffling back and forth on doing the bankruptcy, I’m broke, but then I feel sicker and worry what happens after bankruptcy and I have thousands in treatments again. My meds were at least $2000 a month for about three years when I had insurance and non insured get charged way more. It’s impossible to move forward with all the debt. I can do stuff now, but it’s more of doing things I need done, and I have to stop as soon as I feel worse, so it’s a couple hours at a time at most with rest. I’m sure you can imagine that after years of this and feeling a bit better, I despertly need a vacation. I haven’t done something fun since the 4th of July 1999.
Wow! You have the heart of a lion, Harmonious Discord, and I wish you the best. I know it doesn’t help much to get an offer like this from San Diego, and from a pretty broke college student at that, but if there’s ever any way I can help, let me know; I keep a current email address in my profile at all times.
Thanks for the support, and this malody has really wore me down. I have almost nothing left to throw at it emotionaly. I felt completly burned out in 2003 2004, and would have been glad to die at that point, except I wanted revenge on the system that left me with out healthcare or support. Had my insurance not lapsed, I was to have been checked for a few more things and maybe I’d know why I’m sick. The last doctor was talking about a round of anti-rejection drugs, to break the cycle and reset the immune system. You can’t get that kind of stuff done without money. I have seen too many people die lingering miserable deaths, and know personaly how you emotionaly wear out until you can’t fight anymore. I will always understand why a critical ill person longs for the peace of death, and would never blame them for desiring it. I think it’s the cruelest thing on earth to deny that person anything known to midigate their pain, because it’s habit forming or banned and hard to quit. It doesn’t matter at that point stupid burecrates and nay sayers.
I have forced myself to push the envelope for my activities a little over a year now. I can walk much better since late spring last year, when somthing click and I went past a hurdle. I now have the coordination that sucks, but at least I’ve stopped taking dives to the ground. I don’t think I’ll ever be able to do activities again that require good coordination, or indurance, but I’ll see. Having the Sydenhams all my life has been really hard, but the remarks from people has given me a thick skin, and you either go introverted or extroverted from it. I went extroverted, but this latest illness has changed things a bit. Blah Blah Blah time to stop.
Harmonious Discord, you have my sympathy. I can’t imagine what it’s like to have lost 5 years of your life to an illness that hampers your thinking, wrecks your coordination, and cuts away swathes of your memory.
Do you get any help from your family at all, or do they all have compassion fatigue at this point? I’m also wondering if a social worker could help you at all.
FWIW, I’m sending good thoughts your way. I hope you recover quickly and thoroughly–or, at least, as quickly and thoroughly as possible.
I would have been dead a couple years ago if my mother hadn’t kept me housed, when all my resources ran out. This is something that is the reverse of what I figured on at this time in life. The family are burned out. There’s one person that’s more understanding because of a major disability caused by an accident, but I won’t post anymore about that.
The only help in my situation was about $200 one year for heat assistance, and food for two years. It’s hard to buy enough food for the month on it too. Some medicines were available at reduced price for a year, but most of what I needed wasn’t available on those programs. You have no problem getting a recalled drug, but anything expensive or in certain catagories your out of luck.
The social services in Wisconsin have no assistance beyond the food that aplied for me. The health insurance could only be purchased if there was a female with kids involved.
I also found that critical for care drugs for some illnesses would run out sometime in the year, and the only company that could make it, would tell these people, tough. We won’t be producing anymore for 6 months. The sites where they exchanged information on their disease would have the notice on it, and the people tried to see what they could do for each other. What do you do when the company won’t make the only medicine keeping your problems under control.
Are you sure you didn’t just get a divorce? I feel those years of my life are just gone and I have a hard time remebering events of that time.
You’ve stuck it through this far, you’ll get through the rest.
remember, you think Zebra is kindest, bravest, warmest, most wonderful human being I’ve ever known in my life.
Thank you all for this indugence. I’m feeling a bit ruin down agin, so I won’t be on thew board for a while. Maybe I’ll pop this back to the top when I get back, maybe not.
