Terminal Illnesses and Cripples

[MissMurderPaws]

I don't know if a rare kidney disease that is highly unknown as to how you get it or how to treat it counts, but here I go:

1. Me, I have a very rare kidney disease that is highly unknown about as to anything of it. The medication that I take is based off of the trial and error of what they've found. But there isn't a specific cure or treatment for it.

2. It's been positive. It's taught me to be more aware of what I eat. I have to cut down on salt, and stay away from high cholesterol foods. I've also become a little less weird to the kids at school because they feel sorry for making fun of me.

It's been a little negative. They're no real research on it, so I don't know what could happen in the future.

3. If I knew what caused it, I'd fix it. But, they don't even know what it does, since it's only a recent finding. so it depends.

i have a friend that has something like that, but she's not very positive

[TxCat]

Been meaning to pop in on this thread and comment but...well...er... *points at topic* Yeah.

Do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition?

That would be me. I was born with a rare genetic condition called Ehlers-Danlos and I have the type ii/iii variant. This means that I don't have as many layers of skin as everyone else (normal humans have seven, I have only three) and that what skin I do have is soft, almost like velvet or silk, and stretchy. It tears quite easily and things you could put a band-aid or an ice pack on and forget about usually end with me in the ER being stitched up or having a bone reset or put back into its socket. The type designation has to do with the severity and the type of collagen tissue the disease impacts. In addition to the traditional and telltale skin, I also have hypermobility of the joints. The tendons and connective tissues just aren't strong enough to hold the skeleton together so that simple things like moving about can cause severe dislocations. I count myself lucky that I don't have one of the worse types. Although, because several of the body's vital organs either have or use collagens, mine will wear out more quickly than others', I won't have to worry about suddenly bleeding to death. The type which affects only the circulatory system is generally fatal and I've only met one person who survived past age thirty who had the condition.

Additionally, when I contracted spinal meningitis at age eight, the disease destroyed a large portion of my hypthalamus. That part of the brain controls the pituitary which controls the thyroid and all the other endocrine glands. What metabolism I DO have is built artificially with supplements and hormones. I ended up as large as I am because my body doesn't know what to do with ANY food, even the healthy stuff. It all gets stored and just...stays around. Or else it passes unused out of the system, which makes the body think it's starving with the same result.

My brain is damaged, literally. The meningitis also left me with moderate deafness and sight impairment. I'm legally blind without my glasses and I can't hear much of the mid-range frequencies at all. It also scarred the temporal lobe and gave me seizures. TLE is a little different from what you see on television, all automated movements which if you don't know the person can appear deliberate. I'm capable of speaking during a seizure but it's not rational conversation, merely bits of whatever I was thinking about or doing last combined with whatever memories the random electrical discharges happen to hit in their search for living brain tissue. A few years ago, I had an infection and was hospitalized. The nurses on duty weren't careful about the antibiotic drip and further damage resulted. I was initially left handed. Now, I might suddenly find myself eating and doing other things with the right hand that I didn't before. When that happens, the messages get confused and I'm likely to drop or spill what I'm doing while I sort myself out. It's likely I suffered a small stroke, a known problem with that particular antibiotic. At first, I had lost the ability to read a calendar and forms and numbers. With great difficulty, I have taught myself how to read numbers again and how to use the calendar, though I still can't use it properly. Forms leave me helpless; someone else has to fill them out because the lines dance around on the paper and refuse to hold still.

You may also add a wheelchair to this collective mess. Five years ago, I was chasing one of my pups out of a neighbor's yard. He vaulted a ditch and, without thinking, so did I. The crumbling soil gave way under my feet and I fell. I ignored the back pain until it got so bad I couldn't any more. When they did the MRI, they found four slipped discs (all inoperable because of the aforementioned collagen issue), some chipped vertebrae, and significant narrowing of the spinal canal (it's a condition called stenosis). I struggled for years to stay mobile, using first a cane and then crutches, but finally it became impossible for all but very short distances (I can still stand for about five minutes without falling and I can walk for maybe half an hour with the crutches if I'm prepared to deal with the dislocated shoulder joints later).

My mother is also in a wheelchair. She has similar conditions. Most of my health issues are hereditary. I'm grateful that, unlike her, I do not have to use oxygen. While I do suffer from apnea and I use a BiPAP at night to keep me breathing, I do not require assistance when awake.

Finally, there is Dee. Dee was perfectly healthy until he was shot in the line of duty. A rare complication allowed the lead filled bullet (it was a homemade job) to travel the circulatory system and cause all kinds of havoc. Dee's gastrointestinal tract is only minimally functional, as can sometimes happen with severe diabetics, and he's no longer able to take nutrients from the food he eats. He just has surgery so now we're all learning about the joys of maintaining a permanent feeding tube.

How does it affect you? Positively and negatively.

You go through stages of grief when you're diagnosed with a chronic or terminal condition, just as though someone had died. In a way, that's true; your entire life as you know it just died and sometimes you don't even have time to wonder why. Some folks never make it through the grief process. They become bitter or withdrawn and dependent. I decided early on that I would take no more help than I absolutely needed, one reason why I struggled so long against getting a wheelchair or a handicap permit for the truck. Even though I'm in a wheelchair now and the other conditions preclude a lot of exercise, I still keep active. I play with my pets, I do the housework, I even go outside and work in the garden. There's a trail not too far from here hard enough that I can wheel myself along it, assisted by the dog, with a companion walking along to make certain I don't overturn in the softer soil. I do upper body exercises to maintain my strength and muscle tone. I eat right. I take especial care with my appearance: always neat, always clean, always well dressed.

I used to do these things because I didn't want people seeing the stereotype of the Fat Person in the Wheelchair. Now I do them for me, because they're good for me and they make me feel good.

It took me a while to adjust. The wheelchair came on my birthday and, because it was expensive, it was the only gift I got. I cried... a lot. At one point, because the pain of my joints was so bad and my quality of living had sunk so far (unable to dress myself, unable to walk, unable to bathe without help) I just didn't think it was worth continuing. My husband woke up and heard me reaching for the gun.

I'm glad he did. The following day I got approved for two medications which reduced the pain to bearable levels and even unfused some of the joints which had locked up into an arthritis-like rigor.

I take things one day at a time now, enjoying them as they come. I know my time is limited. I know I'll die long before I ought to. I just don't worry about it.

I worry about my Ma. She lives in Denver in low income housing with my developmentally delayed little sister and her partner, Sue. None of them ever have enough to eat. She's lucky in that her medical situation is taken care of because she's a military widow and the facilities are right there, top rate. None of them except perhaps Sue are capable of holding a job, not with their collective disabilities. I send them what I can, including dehydrated food packs I made myself.

Two things seem to have done her a world of good, however: she got a camera and she got a motorized wheelchair. With those two things, she seems to have come out of her withdrawal from the world. She looks younger, more animated. She was glad to see me when we visited last, didn't talk in monotones. She phones more often.

I envy that. My chair is inadequate. It's falling apart. I'm fighting the insurance for one that will do what I need.

Dee...I'm waiting for the crash and I don't know how I'll handle it. He was an athletic, healthy man and used to doing things. He may well be that again, but there will be restrictions and I'm not sure he can cope. The man was an amateur gourmet cook and loved food. Now, he doesn't even get to taste his meals. They go in a tube directly to his intestines. Eating causes him pain, if it's not liquid. I try not to treat him as fragile --- I hate it when people do that to me --- but it's hard. He tires easily, he gets sick more often. I want to just pad him up in blankets and keep him safely away from the world.

Among the most positive of things, however, is that dealing with my own disabilities and those of others has taught me patience, perseverance, and gratitude. I'm immensely grateful for the small things in life and the small things people do for me which I used to take for granted. I'm more likely now to keep at something until I finish it because I know there may not Be a tomorrow for me. Of course, it strengthens the family bonds. We treasure each other because we all know, whether or not the sentiment is spoken, that we may not have each other for long.

It's bittersweet, but I don't think I'd trade it for anything.

If you could, would you go back and change it?

I'd change just one thing, the only thing which might have made a difference: I wouldn't have leaped that ditch. I knew it was the wrong thing to do even as I was doing it, knew I was going to get hurt. Barring that, I would have gone to the doctor sooner and would have insisted on the CT and MRI sooner. If I had, then I wouldn't have inoperable disc ruptures. The rest? Just a life lesson, however cruel, and it doesn't change how I feel about myself or the others. I know my own worth and I know theirs. Nothing else matters.

[MightyOak]

Do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition? I am. I was diagnosed with Fibromyalgia at the age of 14. It is a chronic pain syndrome and sleeping disorder. I do not get delta levels of sleep, which is the rejuvenating part of sleep. I have Tendenitis in both knees. I have PTSD (Post Traumatic Stress Disorder). By age 15 I could no longer attend school due to the Fibro. I was bed ridden for many years. The Fibro is genetic and to get a diagnosis so early in life (it's usually diagnose around the age of 50) means that I have copies of the genes from both parents.

My father has Alzheimer's. He still knows me...for now. He wonders if I met the woman who came by to see him the day before, because he doesn't know she was. When it was just me. It's the short term memory that goes. He can't drive any more. He often loses his words. His mother had it, as well. It is genetic and I would not be surprised if this was my fate. He also had (I think this is what it's called in english) Sarcoidosis. And intestinal problem where the intestinal tract folds a bit like an accordion so little things like seeds get stuck in the folds and don't pass and cause pain. He was an Alcoholic at one point.

I have two nefews who both have ADHD (Attention Deficit Hyperactivity Disorder). My brother and sister in law struggle, trying to do the best they can, but they don't have any family around to help them.

How does it affect you? Positively and negatively. I have had truly horrible experiences with doctors and it has caused me to be very wary of them as a whole. Putting too much trust is what they say just might be the death of you, if you are careful. We all deteriorate, we will all die, we will all suffer. "All life is suffering." Or so some say. In many ways, all the difficulty makes me aprectiate the rare moments of pure and simple joy. Is there anything as lovely as a summer rain? Or a bee that passes you right by to work busily on the flower in front of you, as if placing itself just so you can watch? Simple things, that is where joy of life resides.

If you could, would you go back and change it? No. It is my belief that these are lessons I needed to learn for my own growth. To take one thing away is to change the entire outcome. Would I be who I am today if things had not gone as they did? I do not know, but I am thinking maybe not. I might be a less cynical person, perhaps less bitter, or less angry. But I have also learned to move beyond those self destructive feelings...(most of the time)...and I cherish the strength in me that permits me to do so.