I am all out of titles !

[Raglet]

today have been really weird. I have been trying to figure out what is wrong with my left leg, coz I sort of have to drag it around and my ankle just won't cut it. I have just been thinking oh well, more peripheral nerve damage, whats new. But then I realised that my balance loss have done a big leap - I have lots of little losses, but this is a pretty huge one. I am now so bent that I can't use my leg properly. I emailed my rheumie this moring and asked to be referred out to orthotics so I can get some new stuff to help me walk. Just want to see if I can somehow brace my ankle to it can cope with the angle that i have it at.

I got my daughter to help me measure my self, then worked out the difference between my height when I stand now (very bent), and my real height. I am very tall, 6ft 1 inch. Well, I had my daughter measure me as I stand now, and I have 'lost' 9 inches. I have to stand very bent forwards at the hips coz otherwise I fall over backwards as lupus has done a number on my cerebellum. My friend is coming back from Canada on Tuesday, I am taking the day off to pick her up from the airport - I haven't seen her in 18 months and I think she will see a big change in me posture wise.

It's crazy, when I write it like that i find it had to believe myself, even though I do know it is very extreme. The sad thing is that rituxan has helped slow it down, and I think the reason I have experienced this big loss is that my b cells are coming back, but they won't give me anymore rituxan until I am really really sick again. So I am going to pick up a whole lot more permanent damage before I fit the funding criteria, which sucks big time.

oh well. I have been on a fabulous two day training course for work, and loved every minute of it, so life is good, if a little lopsided.

lots of love to you all

raglet

[mom of 2]

oh my god, have they given u a mri or cat scan. it blows my mind how it seams that they dont take us sereously when we notice changes,they get threatned telling us that we are not self diagnose(forgive my spelling)losing 9in is drastick(a lot) heck at 5ft i would disapear:lol: lately i find my self doing things backwards i have to consintrate harder. sorry i know this is scary for you . i realy wish they would come up with ligget answers for these questions. it seams their fav answer is well its the lupus. i think they should be honest and say i dont,but lets work together to find out. i wish i could help more. i'm glad your daughter is there for you. your in my prayers
susan

[Clare.T]

And I am running out of things to say ! New things anyway so I hope the old ones are still good.
First I am so glad that you manage to find enjoyment in life, second I am so sorry that this DD remorslessly progresses, then I am so mad about the Rituxan funding.

Lots of love and hugs to you Oh Indomitable Andromedean

:hugbetter: :wand2: :luck:

Clare

[sam101360]

I second everything that Clare said. I am sorry but lately I dont have an original thought in my brain!

I love you and you are always in my prayers!

Stephanie

[Raglet]

actually, i forsee a new role in my life - that of offering 'horsie rides' to the local children in the park. I am certainly the right shape for it - perhaps I could make a bob or two on the side ?

r.

[confused1]

(((((( Raglet )))))))))

You are my inspiration. No matter what shape your body is, just know that you absolutely indominatable spirit has been and remains my inspiration. When I start to moan and whine to myself about my "sorry lot", I think of you and remember that we CAN be strong and fine and love life no matter what. Dear girl, you may have lost height, but you've gained stature. In my eyes, you're 8 feet tall and slam dunk the ball every time you get it.

That said, my horror at the sorry state of the medical business in every nation on earth remains sharp and grows sharper every day.

Love and prayers,
Sunny

[Douglas]

Raglet, you might find another way of earning pin money besides being a horsie for children. You could rent yourself out as a hockey stick for very large players; leanover further and be a wheel or tire (tyre) for a tractor; or star in a new "B" motion picture of "The Incredible Shrinking Woman".
I have shrunk about two and a half inches. Glad to know I am not alone. At least I think I am.
I one can't stand up, cheer up.
Peace,
Douglas+

[Raglet]

Douglas, I think you have got something there! I used to play hockey, and i loved it. Don't know that i was much good at it, but it was lots of fun. It was the gallop around in a muddy paddock sort of hockey that they play down under, though these days they play on astroturf and it looks a lot faster

cheers

raglet