Question

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Ok guys here's a doozie --

II'm 28, and have SED - and I am knockneed too. The thing is - I bent over

so much at one point I was almost 90 degrees, because I think my hips were

that bad that after so many years they just locked in to place. (no more

cartilage, bone on bone, the ball was no longer a ball shape but flat on one

side, and I had spurs). Yeah - painful! So I went ahead and did the hip

replacements...

So in March and April 09 I had my hips replaced (left then right). I am

still recovering....I can't bend forward or go up any stairs now, but that

agonizing pain has finally since stopped that was keeping me from sleep.

After my surgery, I think some of the other issues with my body have come

out - so now it feels like one leg is longer than the other because the

pelvis is off, so being knockneed only puts a ton of pressure on my one knee

and makes it bend further the wrong direction. Definitely not helping to

make it better! Only now, I have all these new added headaches so it takes

me like 3x longer to do things and move around. My knees are causing me

problems now which I expected....but it seems no matter what I do, I can't

seem to get myself feeling better. I'm still taking pain meds - basically

because Aleve or tylenol or something does nothing to help my pain (case in

point last night I took aleve on my way home from work, and nothing

happened!). I used to live in Ohio so I went to Cleveland Clinic and saw Dr.

Matejezyk for my surgeries. I lived in Dayton but I still say that the 3.5

hr trip one way however many times we went was so totally worth it. (Sad to

say I found out yesterday that her assistant, Janet, is no longer there

*sniff*!!!).

I've just moved to Illinois (DeKalb area), and think I found a dr. I can go

to so I may look into knee surgery/replacements now...but I was doing a lot

of thinking these past few days....which brings me to the point of this

whole email. I believe, as SED, at a regional when I was 13 one of the docs

said that it's just inevitable that the joints will just continue to get

worse and worse. So that has me very worried now - is there anything I can

do, to help? I'm in so much pain, my movement is totally limited, and I want

to have kids but am very worried that I may not be able to keep up with

them? Are there any sites specifically that you know of now that may be able

to help me learn more -- or are there any docs that know SED dwarfism, or

any of you out there - that might be able to give me advice/pointers to help

ease my mind? I'm just concerned about what my next steps will be because

I'm just not doing well at all movement wise and it's just getting extremely

frustrating.

Thank you all for your input and advice!!

--

I'm not short. I'm built low to the ground for speed and accuracy!

" Life is 10 percent what you make it and 90 percent how you take it. "

" Life's like a movie, write your own ending. Keep believing, keep

pretending. "

*– Jim Henson*