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am I crazy?

 
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swimmergirl247
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Posted:     Post subject: am I crazy?

Hi guys I know this question may sound a little extreme but please here me out

first a little back story. I have been legally blind since birth and I am now down to color and light perception only and will eventually go totally blind it could be 2 minutes from now or in 20 years I don't know. but I have never really considered myself "disabled" because my parents treated me like everybody else and so I expected and held myself up to normal standards. I do "see" but I don't see like most people (I am gifted in echo location and my brain is really good at plugging information into the picture without me even thinking about it, and I am very perceptive) anyway when i turned 16 after suffering a concussion a few years prior I ended up having emergency brain surgery to save my life. the day I woke up I was never the same.
ever since that day I have in constant pain, from migraines, scar tissue damage to my nerves and not enough fluid to cushion my brain. I have been on pain medicine constantly for 6 years now and barely have any control until recently(I'm having a set of TENS units implanted in my head and hopefully lower back as well) my brain suffered damage and I suffer from hormonal issues(basically all the "normal things your body does to maintain homeostasis is completely out of control I have to now either live it or take medications to treat them. I also suffer from seizures and tremors in my hands, urinary tract issues, and my right leg for leck of a better explanation fell asleep years ago and we don't really know what happened.

the best explanation I have is that I had a massive stroke at birth(whole other story) but I had no real problems stemming form it except when i would get tired my toes would drag more when I walked but that was it. then one day about 2 years after my surgery I woke up one morning and I couldn't feel my right leg. I lost everything. short answer is that my brain was under so much stress that I might have regressed and was never able to regain the uses of that leg. basically no matter what I did it stopped working I was in and out of physical therapy for nearly 3 years with some improvement in my thigh strength but no improvement from the knee down. it hasn't improve nor has it really gotten any worse in seven years.

So now I have basically accepted the fact that its not going to get any better. I have now considered a drastic solution. I have hip and thigh strength but I have no control from the knee down(this includes flexing the knee) due to my visoin issues using forearm crutches isn't exactly safe(but I do it anyway). nor is having a leg that you can't see or feel. during long distance travel I use a power chair with the joy stick in my left hand and a white cane in the right. It is doable but I have a lot of restrictions and have been put into some very unfortunate situations where I end up getting stuck somewhere because the bus won't pick me up (because the driver didn't "see" me dispute me being a regular etc), having to be barred from attending my first choice college because I was "too much of a risk to the school" and even guide dog schools where I had been on the the waiting list for years prior to having this issue come up with my leg simply drop me and leave me to my own devices (which I ended up self training a service dog and she works just fine beside my wheelchair it wasn't hard at all) I refused to continue to live like this I want further independence (something that I refused to give up)

So my solution to all of this isn't really a solution but rather a weird trade. I want to amputate my bad leg above the knee. this way I can get a prosthesis and will be able to learn and walk again on my own. I have carefully considered the trade off. and we are 99% sure at this point that the nerves in my lower leg are not going to wake up again. my leg has atrophy and my ankle is extremely unstable now. I am also highly susceptible to staph infections (I've already had it 8 times) it is only a matter of time before I cut my foot open and it gets infected. It would have to be an above the knee amputation so that I could fully control the stump. and I realize that a prosthesis isn't perfect, it can cuase sores and break down like anything else IDK I have had years to think on this. and besides the objections the doctors may have (which I realize I will have to fight hard for) is there anything else I haven't considered? I am shooting for a better quality of life. which right now I spent half my days planning the linguistics from getting form point A to B and making contingency plans C, D, E and F in case something happened. its exhausting and If I don't have to do it for life I would rather not. anyway am I crazy for thinking this? being blind really changes the game. and I do consider myself disabled now because before there was nothing I couldn't do and now there is very few things I can do. it sucks and I'm tired of feeling like a burden. anway what would you do in my shoes? would you keep your leg knowing that you've narly killed youself accidentally 3 or 4 times?

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peterporcupine




peterporcupine

Joined:
January 12, 2013
Posts: 7

PostPosted:     Post subject:
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`No, I don't think you're crazy. Only you can decide if this would be right for you, but it strikes me as a perfectly reasonable option to consider. I would think your doctor or hospital might be able to put you in touch directly with some people who have artificial limbs so you could talk to them and find out about the experience. Maybe there's a local veterans' hospital near you that would have some younger patients, close to your age, who have artificial limbs and could tell you what the experience was like. That might help you decide on the best course of action.

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