Terminal Illnesses and Cripples

[oceanmist]

Not too sure of what I should have the title be. :tard:

So anyway, do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition?
How does it affect you? Positively and negatively.
If you could, would you go back and change it?

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Do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition?
Yes, my mother has been paralyzed from the neck down since I was five and a half. She will never be able to walk again and stays home all the time and never likes to leave the house because people stare. They stare rudely at her.

How does it affect you? Positively and negatively.
Positively: I've met a lot of good friends because of her accident. We have workers who I've made friends with and if she wasn't injured I would have never gone to the schools and I did and would have never met my best friends.

I also get an experience that many people will never ever face. And that does have it's privileges according to my dad. He says that since I don't have much of an opportunity to do community service and the majority of our money goes to my mom's medical equipment, then we may be able to get scholarships meant for people in these situations.

And I've gotten used to being alone and not having parents who are really paying attention to me. So even in the middle of summer when most kids are missing their friends, I'm perfectly fine being all by myself.

Negatively: My aunts always say that there wasn't anything that my mom was bad at. She was once ranked in the top ten in the world for cycling or skiing. And she even would have been able to be in the Olympics for cycling if they had it for women then. Hearing all those things and knowing all the skills she could have taught me makes me sad. Especially knowing how much of a blow it must be to her.

There are some nights where I cry myself to sleep. I've missed out on so many opportunities and sometimes feel like I'm missing out on having a mom. And some days I just wish I could walk downstairs and not see wheelchairs everywhere and medical equipment or our workers. And I feel like the majority of my childhood has been taken away from me. I've never been out of New England or gone to Disney and other common places kids have already gone and I've never seen movies many kids have seen(like the Wizard of Oz and other movies), which I'm not sure really have to do with the accident.

Sometimes there is a lot of change in my life and I don't like it. A lot of the times we have new workers and sometimes they put my clothes in the wrong spots or the dishes in the wrong spots or do things on different days than I'm used to. A lot of the work they do I could do myself and I would if they didn't already do it for me while I'm at school. And sometimes trusting them is hard. One of our workers stole money, jewelry and guns from us and was mean to me and my brother. But she was still trusted. We take good care of our workers(my dad helps them out financially and recently bought a house for one of our workers and they are treated like family) and she stole from us. She stole my mom's wedding rings even.

And sometimes the stress of having to help out is too much for me. I do tons of work for myself and pets and I also have to do a lot for my mom too. And since she can't be left alone a lot of the times we can't go places because my dad doesn't have coverage and we can't go.

If you could, would you go back and change it?
I'm not really sure if I would. A lot of bad could come from trying to change that, but also a lot of good could come from it too. But I think I would try to change it, but honestly I have very mixed feelings about it because it is such a big impact on my life.

[Que]

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.

[Brynmala]

My dad was bedridden for the last 5 years or so of his life. He had Multiple System Atrophy (MSA) which is one of the Parkinsons spectrum of illnesses, but looks from teh outside very much like motor neurone disease (think Stephen Hawking).

My dad was more or less unable to move, couldn't speak, could barely swallow, but his mind was all there. His eyesight was also very poor since the hosptial botched a cateract operation. I was living about 500 miles away, and there was no other family close. After my mum died (cancer) he was left alone in the house (his choice not to go into a home) with carers coming in 5 times a day. I was doing the round trip every other weekend to do shopping etc, and deal with bills and other household stuff. He died a year, almost to the day, after my mum did.

Frankly I can think of nothing positive about the experience at all, for him or for me. I spent most of that last year wishing he would die, because it was awful to see him in such a state - if he'd been an animal he'd have been put to sleep, but because he was human he had to suffer. The stress of the situation was horrendous - not just dad himself, but we also had a carer steal from us, and the ensuing court case seemed to go on forever. The bank spend months refusing to acknowledge my power of attorney, or even speak to me. My cat died. I very nearly lost my job and I came so close to having a nervous breakdown it wasn't true. Then when it was all over I had to clear 30 years worth of junk out of my childhood home and sell it...

I'm not looking for sympathy - its over and done with now, as he died 5 years ago. Other people have to deal with much worse for far longer, but sometimes it really does help to be able to have a bit of a whinge about it

[AHHRealTempest]

Oh wow, I did tear up reading your stories, makes me feel like I should shut up about what I have to deal with.

To start off, my fathers parents live right next door to me, so I grew up between their house and my own, needless to say I am very close to them. My paternal grandmother died having Alzheimer's (she also have a rare form of skin cancer on her foot which she had to have three toes removed), my father has Parkinson's disease, and my uncle (my dads brother) has ALS (more commonly known as Lou Gehrig's disease). Yep, but I'm not done, My maternal grandmother died of cervical cancer and her husband, my maternal grandfather died with Parkinson's and then my paternal grandfather has had colon and prostate cancer, and a quadruple bypass, but he's 91 and healthier than me. In fact he's the primary care taker for my father.

What's positive about this? Nothing really...other then I will be sure to go to the doctors often.
And I won't ever take my health for granted.

The negative, that's...everything. I'm so scared that I'll end up with cancer or something because of how awful my family history is. My dad is 64 and he looks older than his father. I have to go to therapy for this, I cry a lot thinking about my future, like I don't want to have children until my dad passes, he wouldn't even remember anyway. And my dad, we have the same birthday and to think that sometime in the near future I could be starting to spend my birthdays in the cemetery, isn't a pleasant thought. I have very few patience for my dad, which upsets me a lot knowing how amazing and smart he use to be. He can barely pick up his feet or move his one arm, his legs are swollen with fluid and burst every so often. It's sad to say but the first date I had with my boyfriend was his prom night and I was so embarrassed that my dad was there when he picked me up. That was a week before my dad got his legs checked up, so they were oozing and disgusting...and there was no way to get him to go back into the house without looking like a total bitch, so...later on I just dealt with the questions.
I'm still a tad embarrassed, I'm not afraid to admit it, but it upsets me a lot. And it doesn't help that the year my dad was diagnosed, was the year we started working on our house. The house still isn't finished, it's freezing cold and I have a hole in my ceiling along with exposed insulation and a methane pipe exposed to the inside of the house among other things. Well, while working on it, someone stole the last of the money my dad had saved. He was forced into retirement and could never afford to finish the house. No person should live here.

If I could would I go back in change it? That's a lot to change, I'm sure I wouldn't even be here if it were changed. But, I would at least change my fathers state of health, let the Parkinson's take over slowly. He's gone so far down just within the past year, I would've like a few more years with my dad, and not the elderly hallucinating sick man in my fathers body.

[LunatheDragoness]

Im sort of crippled. I have bad legs. I have knock knee which is VERY FREAKING PAINFUL!
http://www.zimmer.com/web/images/patien ... ritis2.jpg <Look at very last picture.

Ive had surgery on both my knees they had to break my bones and put metal and screws in. They took them out when I had to have my ankles broken and turn in wards 30 degrees. That too has metal and lots of screw. My scar on the side of my ankles looks like a butterfly lol. And Im still not 100% better and can walk like a normal person does. My left knee and ankle is now getting really bad. I might have to get another surgery on my left knee and have more of my bones cut and moved about..It is not fun at all being like this. Everything from my knees down hurts and I limp all the time. I cant stand for more than 30 seconds before I start to hurt and want to sit down. I feel bad for the people that are paralyzed. They cant walk..Im lucky I can walk despite all of my pain and surgeries..I do stare at them yes but not because I think they are weird or anything bad but because I feel bad for them.

[KaidaShade]

My aunt has Multiple Sclerosis (MS). I think it's a fairly well-known condition, but it might just be because I've grown up with a family member who has it. Essentially, it occurs when something goes wrong with the body's immune system and triggers it to start attacking the insulating sheath around nerve cells. This causes loss of sensation in some parts of the body, as well as difficulty with fine motor skills. My aunt had to have her legs amputated due to the condition and as such is a wheelchair user.

Obviously, it does affect her negatively as she can't really go anywhere by herself and has to have help getting in and out of bed, cooking and cleaning and whatnot. However, she's quite a stubborn lady and refuses to let anyone belittle her or treat her differently because of her condition, which I think is quite good. On the positive side, her home care helpers have become good, long-term friends.

Unfortuately, she got the disease relatively young and it destroyed her dream of being a nurse, which she had spent years training for and only managed a few years of work as before she was unable to work.

It's never really affected me, since I'm used to her being like that and she's not my mother or anything. As a child she used to watch me during the school holidays because my mum worked, and it was quite useful as she helped me learn to cook as once I was old enough to do it without hurting myself I would often do dinner for her.

[anyanka]

So anyway, do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition?
My uncle has parkinson disease (IDK much about it, but you can read information about it here:
http://en.wikipedia.org/wiki/Parkinson%27s_disease)
The symptoms are diffuse in the beginning. They'll start in one half of the body, and spread to the other half eventually. At first he'll have tremors, then his body will get stiffer and stiffer and/or poor balance.
Hes movements will become slower, and it'll be harder to react or start a movement. His tremors will be more prominent while he rests, and be worse if he is mentally stressed. He'll loose some of his balance, and move his arms less when he walks. Hes voice will be weaker, hes speech more monotone and his face won't show any expression. He may start forgetting stuff, and suffer from depressions. Other symptoms are drooling, fat skin and problems with urinating.
(copied and translated from http://nhi.no/sykdommer/hjerne-nervesys ... -2451.html )

How does it affect you?
It doesn't affect me much now, as he's not that bad yet. But I don't know how it will affect us in the future.

If you could, would you go back and change it?
Yes. Yes I would, if it were possible to avoid it.

[Darkfur]

I wasn't going to post at first...but then I got to feeling bad for being a lurker. So I'll share mine since you all have.

Do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition? I have a skin condition called Hidradenitis Suppurativa. Little is known about what causes it, as both young and older people have it, and "aquired" it at different ages, some as young as 2.
There is no known cure for it at this time. It is known as an "orphan" disease because there is little known, even less data on how many people actually have it, and almost no research being done on it. The definition of Hidradenitis Suppurativa, better known to us sufferers as HS is as follows...

"Hidradenitis is a chronic disease of the apocrine glands (a form of sweat gland found on certain parts of the body). For unknown reasons, people with hidradenitis develop plugging or clogging of their apocrine glands. It causes chronic scarring and pus formation of the underarms (axilla) and groin/inner thigh areas. In women it can also occur under the breasts. It is similar to acne, which is also a disease of the sebaceous glands. Hidradenitis usually starts as one or more red, tender, swellings in the groin or armpits. Over a period of hours to days the lesions enlarge and often open to the skin surface draining clear to yellow fluid. The involved area then heals with scarring. The condition usually continues for years with periods of flare and remission.It is a physically, psychologically, and socially disabling disease and it is non-contagious and recurrent.Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage."

Here is a link to pics..WARNING THE PICS ARE GROSS..YOU HAVE BEEN WARNED...
http://www.riversideonline.com/source/i ... enitis.jpg

http://mail.mastcanada.com/doctorv.bak/ ... rativa.jpg

http://t0.gstatic.com/images?q=tbn:ANd9 ... Om1X6B&t=1

I have had it since I was 19 years old. There are three stages to this disease. I am in what is considered stage two. Not everyone who gets it progresses to stage 2 or 3 and some seem to skip stages and go into full blown stage 3.

Stages are as follows:
Stage I. Solitary or multiple isolated abscess formation without scarring or sinus tracts;

Stage II. Recurrent abscesses, single or multiple widely separated lesions, with beginning sinus tract formation ("tunneling") and cicatrisation (formation of scar tissue);

Stage III. Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts, significant cicatrisation and persistent abscesses.

How does it affect you? Positively and negatively.
I cannot say it has positively affected me. Other than the wonderful people I have met in my support group, I can't honestly think of one positive thing about this horrible disease.

How does it affect you negatively?
I do not wear tank tops or tops with spaghetti straps anymore.
I cannot use regular deodorants. I have to use a crystal salt stone.
I cannot shave ANYTHING since shaving can introduce germs into the skin, and being immuno-defective, as I like to call it, the less I introduce germs into my situation, the better.
I do not go out as often as I used to. I used to go out all the time. But now with the constant worry of having an abscess burst while out and about, I just don't go out as often. And no matter how much bandaging you have on one of those monsters, if it ruptures, it's gonna smell, even if your friends don't tell you.
IT HURTS! The worst part of it is, if you have one that will not rupture on it's own, you have to go have it lanced. The numbing part of the procedure is the worst. Just the injecting of the lidocain is enough to make grown men cry like babies. Anytime I have to go have one lanced I stuff a washcloth in my mouth. I used to get strange looks from the doctors when I would do that. But after one asked me why and I told him "So I don't scare the hell out of the rest of the ER patients." I was not asked again.
I had one the size of half a softball come up in between my left armpit and my left breast. I was diagnosed (incorrectly I might add) with cellulitis. I was given strong antibiotics and pain meds and told it would go down on it's own. I asked if it might burst on it's own and was told it would not, that cellulitis doesn't do that.
Upon returning home, I got in the shower, and lo and behold, it burst. The addition of the hot water softened the skin enough so it could rupture. I swear I never felt such sweet sweet relief before in my life, even during labor.
It is devastating to ones self esteem, your self confidence, causing depression or worsening of depression.
I am limited in my choice of clothing. I do not wear light colored clothing for fear of having a monster burst and stain my clothing. The mess does not wash out easily. And because of not being able to shave, I no longer wear shorts or short pants, or skirts/dresses that expose my legs.
I live in constant fear that my children will "inherit" this disease. It is not fully known yet if this is genetically related, but both my mother,sister and grandmother have it. I do not know if any of my 3 aunts or any of their children have it. But immuno-illnesses such as rheumatoid arthritis and Crohn's disease run in my family.
*If I can think of any other negative I will edit my post to reflect it. (having to run my kids to school now.)

If you could, would you go back and change it?
YES. If I could, I most definately would.

[BradTheMad]

So anyway, do you know someone or are someone who is crippled or has a terminal illness or some other life changing medical condition?
I know a person like that very well as it's myself. I suffer from Paget's since a young age which is pretty rare to begin with, both the disease and me having it from a young age, and also have other medical issues that all add up to a lot of trouble. Some of them are a direct cause of Paget's and others are stand-alone issues that, even after years of tests, still don't know what the heck it could be.

How does it affect you? Positively and negatively.
I think I am much more aware of how fragile life is and that you need to enjoy every moment. Obviously it isn't easy as not every moment is oh so great but it does make you that much more appreciative of the little things. I'm also much more aware of other people's needs and that if they aren't able to do something because of a handicap or illness I won't bother them about it.
The negative side is well...it's just not something that improves your life. I just had my first surgery for this year three weeks ago and more will undoubtedly follow. I'm under the knife about seven times a year.
I suffer from pain pretty much 24/7 making me very irritable and tired. My social life can be depressing as I don't always have the energy to be social and therefore haven't got as many friends as I'd like nor a job...which really annoys me as I feel like a failure. I've also battled depression for a very long time as I've got clinical depression which is a fun combo with the physical issues.
I just have to be very aware of the things I am still able to do and concentrate on that. Walking for instance, I used to walk with a cane but I've been without one for three years now after a knee and hip surgery so hooray for that. Plus the fact that doctors always told me I would never grow older than fifteen and I'm thrity-one snow so..hah.
It's hard at times but my faith, the friends I do have and my pets make it liveable. I'm still the King of Kvetch though; I can whine like no other

If you could, would you go back and change it?
Heck yes! I'd love to but maybe it all has a reason...I don't know. Who would I be without all my issues? I might have bene a real jerk.

[dizzydino]

my dad has club foot, and a back problem that leaves some of his spinal cord exsposed.he has had it all his life, so its the only way i know him. despite all that ( and bad eye sight) he has a well paying job as a computer engeneer, and we all love him to peices. . (i have inherated his bad eye sight.)

one of our famaly freinds is slowly going blind, well, she is compleatly blind in one eye and the other is going slowly. but i will say this, she has not lost any of her punky attatude since her condison started, and i hope she never dose.

what i am trying to say is that i know some 'handycapped' peaple, and there are even more at the school i go to. im cool with it.