HEATHER-

[Guest guest]

Hi

I too, use a wheelchair periodically. I just don't have the strength to walk far

or for so long.

My left hip, groin areaand left knne to my toes are in a lot of pain on and off.

If I go to the 

grocery store, I usually only go with Chuck, my husband, and then he pushes me

in a wheelchair

that they have at the store.

A friend of mine is bringing over a walker to me tomorrow (if I have the

strenght to lift it) because 

my hands are still very weak!

I can't lift my left leg more than 3'' if lying flat on the bed....the right

leg, a few days ago I couldn't 

lift either, but now I can lift it about about 6'' off the bed. SLOWLY, but

surely, I am getting there...only

to be knocked down again I am sure.

I used to be on Enbral but then I went into a BIG flare up andwas admitted to

the hospital

in the beginning of May. I was taken off the Enbral then and I am on

Medrol...which my Dr. is slowly

weaning me off of.  I am scared that once I get too low..BANG!! another flare

up.

Do not worry about the disability Dr.  I just did that last week. He asked me

for all my meds (I had to bring them)

and then they gave me an eye test. Then I went into the examining room and the

first

person, I don't think she was a Dr. ...maybe the Dr.'s assistant?  but she

asked me different questions

like how was I first diagnosed, when.and how many times was I hospitalized..how

far

can I walk...what meds am I on...any reactions to the meds? my hair loss is a

reaction so I told her

how I can get up and if I comb my hair it all goes in the sink and can fill the

sink in 2 minutes...

Just simple questions like that...

Then the Dr. came in and asked similar questions and then had me lay on the

table to lift my legs

which I couldn't do and squeeze his hands (strength test I guess)....he tried to

bend my legs but they

wouldn't go without pain so he stopped that...my feet are really badly swollen

(thus the reason my Rheumy is

lowering the Medrol) and they feel like they are going to burst or stinging

bad...They said my albumin is low and that

is why they swelled up (from my knees to my toes)...the disability Dr. kept

looking at them and

writing things down...he was real nice and at the end he said my Rheumy wrote a

real nice letter to

the ''disability council''    and he will write one too..he also said he hopes

I get what I need..and walked me out

and told me (at that time I didn't have a walker..will get one tomorrow from a

friend) to get a walker..now if he recommends a 

walker for me, surely he will say I am not ready to work yet?? BUT..it is not up

to him...the disability

council gets all these papers and they go over it...I think the disability Dr.

is there to make sure what our Rheumys

say is correct and not exaggerated.(or paid by the patient to lie!)..I knew a

girl who got hurt?? at work and 

''she said her orthopedic surgeon said her knee cap was dislocated''. she had

knee replacement surgery years ago....well, she had 

it xrayed at our hospital and all our radiologists said it was fine..no

dislocation....hmmmmm.

Just be sure to tell the dis. Dr. how slow you are and tired and how much pain

you are in and how you

feel when you have a flare up (got any pictures of hives on you?)..and how long

it takes for you to get back to normal?? or 

feeling halfway decent..tell him how many times (and dates) when you have been

hospitalized (he asked me that too). I

can't think of anything else..tell him about your memory loss too..he asked me

about my past job too..

Let me know how you make out...If I think of anything else I will email you...

Diane..42

p.s. take all the meds 'with' you not just a list of them...and try to take the

package your shots come in if you

can't take them with you due to refrigeration necessity..