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Date Posted: 04:41:55 03/03/02 Sun
Author: Tall Texan's wife
Subject: Re: Glad you found us. Just how tall
In reply to: is that Texan? gb 's message, "Glad you found us. Just how tall" on 17:47:54 03/02/02 Sat

My Texan is 6'7" tall. Yes, thanks to the National Marfan's Foundation, we were able to dig up enough material for that Social Security law judge.

Until the mid-1980's, no one knew much about Marfan's, other than it caused a heart defect that could kill you, was genetic in origin, and if the heart defect didn't kill you, would eventually cripple you.

My hubby was diagnosed nearly 40 years ago, and they didn't even tell him that much; only warned him about activities he "shouldn't do". Back then, they didn't explain much. The philosphy was "why scare the patient when there wasn't a thing he could do about it?"

Fortunately, the heart defect remained subordinate for him, and he lived the same life as his other buddies in East Texas, Cowboying, Building, Beer Drinking, etc. He had a lot of "joint pain", but just figured it was from all the "hard living" he had done. In the early 90's, his back got so bad he got medical treatment, which included two herniated discs. He had surgery, and felt better for about six months. Then the REAL pain began. Doctors, not knowing about the Marfan's diagnosis (he didn't know to tell them) informed him that Osteoarthritis was tearing up his frame, and it was just a "matter of time" before he would no longer be able to work. He took his NSAID's, and just kept on trying, getting worse by the year.

When I got a computer, and we were talking about family health history, I stumbled on NMF. After we read all their info, we told the doctor, who instigated a whole battery of tests. THAT's when we knew what was wrong with him, and his whole life started to "make sense".

I'm glad I found you folks, because now he is fighting valiantly to stay independent. There are days he can barely get out of bed, regardless of medications. Getting the RIGHT medications is always a major battle; I'm sure many of you know how hard it is to get "proper pain management". Driving has become a problem; he must now have an automatic tranny and power steering, and even then, he can't sit longer than 45 minutes. Maintaining a "normal schedule" is also tough; it's hard to stay awake when you're supposed to if pain keeps you from sleeping when you're supposed to.

Getting medical care within his "driving radius" is also hard. Finding "comfortable" furniture is difficult. Managing to get up and make a meal and take meds is sometimes very difficult, and I am at work in the daytime.

I'm sure many of you are much worse off, but at least I have found a place where you understand the difficulties of staying independent when your body doesn't want you to. I'll be reading with interest some of the things you folks have discovered.

BTW, his ONE advantage is the "jury duty" thing. He has a "permanent exemption", as the doctors wrote him a letter stating he could not sit in one place longer than 30 minutes. We enclosed it with his last summons, and they gave him the exemption. Good luck to you folks, too.

>How are you and the tall Texan doing? It can be
>difficlt getting the Social Security going. It seems
>they turn everybody dowm. I'm glad he got it. It's his
>money because he paid for the insurance when he was
>working. I found a link to rel=nofollow target=_blank >href="http://www.marfan.org/"> National Marfan
>Foundation and wondered if you had any dealings
>with them? Come back soon and tell us more about
>Marfan's syndrom

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