Got a question about disabilities? I have answers

by Lady Lee 99 Replies latest jw friends

  • wasblind

    "Did your disabilities come on all at once? Or was it one at a time?"

    I know this question is for stAnn, but i hope it's alright if i answer for me on this also

    I was in my prime in 1975, been goin' down hill ever scince. According to the WTS

    everyone is suppose to be doin' cartwheels and backflips for the last 35 years

    didn't mean to go off topic Lady Lee

  • Lady Lee
    Lady Lee

    I'll answer your questions even though they are personal but others can choose how much personal info they want to disclose.

    Did your disabilities come on all at once? Or was it one at a time?

    • one at a time

    Have they increased in severity? Is there a chance they will regress (is that the right word?) -- progress would be the better word

    • Vision - was diagnosed when I was 11 and have been wearing glasses ever since. if it had been diagnosed earlier it could have been fixed and since one eye has been doing all the work for 58 years the vision in that eye as well as the bad one are both getting worse.
    • Hearing - probably started about 5 years ago but definitely getting worse and now is inthe moderate hearing loss range. Mobility - been coming on for at least 25 years. It started mild and just gave up wearing heels. I would experience burning feet so would have to take my shoes and socks off and then they would get cold so have to put them back on. This would go on all day. Got to the point where I couldn't tolerate anything touching my feet sometimes so started sleeping with my feet hanging off the end of the bed and no covers over them. Then started limping a lot and thought it was just arthritis. About 8 years ago I had to start using a cane but that didn't last too long before I discovered I couldn't make my way around a grocery store so talked to my Dr. about a manual wheelchair.

    May I ask what caused your disabilities?

    • Vision -The term is amblyopia or lazy eye and is quite common.
    • Hearing - Since hearing problems do not run in the family and I haven't been exposed to any of the high risk factors it could be due to the beatings I got as a child - lots of hits on the head
    • Mobility - We have gone through many different possible diagnoses only to have them all ruled out - diabetes (peripheral neuropathy), Morton's neuroma, fibromyalgia, among the most popular causes. We have reduced it to two problems now the first causing the second.
      • The first is the structure of my foot. I have an extremely high arch - even the doctors are surprised at how high it is. And I have an extremely high instep (top of the arch). I also have Morton's Toe (second toe is longer than the big toe) Because of these 3 structural problems I have been walking on just 3 small points of my foot (actually feet because it is in both feet). The metatarsal pad (cushion that lies over the bones just behind the toes) has shifted forward so that it is not lying over the bones. I am walking on the bare bones. The name for this is Metatarsalgia. At least that is the name we are using because there doesn't seem to be a name for my problem. Metatarsalgia simply means pain in the metatarsal area of the foot - rather generic while my problem is very specific. All of this causes the pain when I walk. Surgery might move the metatarsal pad back over the bones - or not.
      • But the burning pain is caused by nerve pain. The damage to the nerves has been caused by years of walking on these bare bones. There is nothing they can do. It is called Erythromelalgia - means burning pain. Some people have it all over their bodies. Mine is limited to the front of the foot and toes for the most part although it sometimes extends just past the ankles so I don't know if it will get worse. Nobody knows very much about this disorder. Even if they fix the first problem it won't stop the nerves from burning. That one is here to stay.
  • wasblind
  • "Vision -The term is amblyopia or lazy eye and is quite common.
  • Hearing - Since hearing problems do not run in the family and I haven't been exposed to any of the high risk factors it could be due to the beatings I got as a child - lots of hits on the head"
  • Hearing loss could be due to beatings and amblyopia could have been cured with early detection.

    These things were beyond your control because you were only a child, i feel these were brought on

    by your circumstances that you endured as a child, and even though you have endured so much in

    your life ,you are a symbol of strenghth to so many.

  • cult classic
    cult classic

    Thanks Lady Lee. I guess most of us will end up with something. I always wonder which disability I would handle best. How do you handle the emotional aspect of having disabilities? It seems that the emotional component of an illness could be just as difficult to manage.

  • Darth plaugeis
    Darth plaugeis

    thank you LADY LEE

  • Lady Lee
    Lady Lee

    How do you handle the emotional aspect of having disabilities?

    It isn't easy. The hearing problem has a great solution so I am not too concerned about that and just see it asd no different than wearing glasses.

    Mobility is an issue only in regards to places I can't get into. I check accessibility before I go somewhere. The city buses here are almost all wheelchair accuessible. They have a ramp that folds out so I can drive up onto to the bus and a seat folds up so I have a parking spot. I go everywhere in the city. If I can't get there under my own power with the wheelchair I take the bus. I do my own shopping. I get to all my doctor appointemtns and anything else I need to do. I mention this because it addresses the issue of independance.

    After all the abuse in my life my independance is crucial for me. I can't tolerate feeling trapped.It is how I felt as a kid and how I felt married to my JW husband. And I was beginning to feel that way with my secind husband because he insisted on treating me as if there was something wrong with my head instead of my feet. I couldn't take it and packed up my things and moved to another city and lived in a shelter for 9 months until I found a place that was wheelchair accessible and subsidized.

    I have had moments of depression, especially when we think we have a diagnosis and then find out it is wrong - that was a big one.

    Pain is an issue almost all the time. I have to pace myself and make sure I don't overdo. Theyn I am in pain and angry at myself for overdoing it. My pain medication does not entirely do away with the pain. If it is too hot my feet burn. The other day I was thinking of how to describle this - a sunburn with blisters sounds about right. If it is too cold my feet also burn but a cold burn - have no other way to describe that one. If I am lucky they go numb (which usually means that they have burned for so long they are overloaded and the nerves just go numb. It isn't like pins and needles feeling though - just heavy and thick - I know sounds weird but I don't mind it because the pain is gone for a bit.

    Pain can drive me crazy. One night it was so bad that I just picked up all the blankets and threw them across the room. I was surprised to see they landed outside the door. So after my hissy fit I went to get them and remade the bed. My Dr prescribed hydromorphome which I take only when I think the pain is becoming intractable (without stopping). The stuff is addictive so I am very cautious with it.

    I am on a medication called Gabapentin which is an anti-seizure medication. One theory about why this works is that instead of having a seizure in my head I am having it in my feet. And it can go on for hours and is always worse at night.

    One thing I learned as a kid was resilience and the ability to overcome anything. I have. Things you would never ever want your child to go through. I realized early on that becoming angry and hateful would only make me miserable. Depression gets you nowhere.

    I learned the skills I needed to survive. I guess I am now applying those skills to the disability. I have the skills to overcome. I know I am strong. I know I had the skills to help others so now I can use them to help me.

    all that and a sense of humor about the insanity oif it all.

  • Lady Lee
    Lady Lee

    I always wonder which disability I would handle best.

    I used to debate this often with some of my friends.

    As a sign language interpreter I thought I would handle that the best. I already had the skills and would adjust to the deaf community easily.

    I lived with a blind man for 3 years and thought that would be much harder to deal with but he showed me it wasn't impossible - just different. He was an amazing man who also fiercely protected his independance. I learned a great deal from him. He was the one to help me get away from the JWs.

    I also dated 2 men with mobility issues (MD and MS) and didn't see those as insurmountable so I guess I still see blindness as the most difficult.

  • MsDucky

    My husband is a high level amputee. He can't wear a prosthesis because half of his pelvis is gone. He has no stump. I don't know why people think that he can't hear, see or talk? They'll ask me a question about him. I'll just say, "Ask him"!

    He's 6'1" when he stands. It kills me when people look at us crazy when he parks in a handicapped spot. You can't see that he is an amputee in the car *people*.

    Did my husband's illness come all at once? Yes. He had cancer in the nerve of his leg. It was amputated. Is he getting worse? Yes. He use to use crutches but got bursitis in his shoulders and neuropathy in both hands . .. from using the crutches. ..his remaining knee and foot is getting worse...his spine is twisting because he doesn't have a normal anatomy anymore.....and that ain't all...

    He can hop for short distances; but I rather he use his wheelchair.

    No, he wasn't handicapped when we got married/or first met.

  • cult classic
    cult classic

    According to the WTS

    everyone is suppose to be doin' cartwheels and backflips for the last 35 years

    LOL wasblind... I remember those pipe dreams

  • Lady Lee
    Lady Lee

    MsDucky I totally understand the "people think he can't talk" thing. That drove me crazy when I started using a wheelchair. And the worst offender? my husband (non-JW) He would insist in speaking for me as if I could speak for myself.

    And then when we went out he was Mr Wonderful so everyone would think he was such a great guy taking care of his poor dosabled wife - yea the one who wasn't afraid of getting up on a ladder to change a light bulb or hang a ceiling fan when he was too scared to do it. Then at home he griped and complained about how he had to do all the work and why wasn't I out at Walmart getting a job as the greeter who stapled people's bag's closed.

    I am sorry to hear is getting worse. Too often one problem winds up causing so many other problems

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