Diane is keeping me going too.  She has become a great friend and what a
wonderful thing that is.  Can you imagine - 2 people 2 continents apart
becoming close?  We may never meet but after years on this group we feel we
know each other well.

We were talking today about what it takes to make it through this disease
and Char's name came up.  We agreed that the prednisone is what gives us
quality of life and no lectures - even though we know what it is doing to
us.  Sometimes you do what you have to do.

The last 3 days have been really hard for some reason - I have cried copious
amounts of tears and hurt like no ones business.  Nothing works and I have
felt incredibly isolated.  After talking to Diane I was ready to go on with
life again.  Before then I just didn't know where to turn. We didn't talk
about anything in particular either.

I did go see my physio today who I haven't seen since December.  She said my
right leg has atrophied so badly it looks like it has been in a cast for a
year.  The muscles are a mess.  This is nothing that all the exercises I
have been doing could help as the spasticity is fighting them.  The RA I
knew was bad but she was horrified and amazed at how good my range of motion
was thanks to the constant exercise regime I have.  She told me though to
stop the isometrics - I am too imflamed.  She also wants to write a
prescription out for a scooter for rent for me as she said she doesn't want
me walking for long in my walker.  I am throwing my hip and both knees out
badly and with the spasticity I can't do anything about it. I had been
trying to increase my walking.  She wants it decreased and never ever
without the cane or walker even in the house. She says the knees and hips
are a mess today and would like to see the rd take xrays to use as a base.

Oh and the hands, shoulders, toes (a real mess) were pretty bad too.  no I
believe her words were a disaster.  She can't believe I am keeping so much
mobility and am managing my pain so well.  Great complement but you know
life goes on and that is what ice bags and timers were invented for - like I
am going to quit quilting (oh and the odd demerol.)

Anyhow the scooter prescriptions will be made next weeks appointment after
we hear from the neurologist and her opionion.  I just wish I could be on a
dmard to stop the flu like, fatique symptoms.  I am so low and only you guys
would understand that.  My husband is trying but I know he is feeling kind
of helpless.  Until all the symptoms disappear and we find a clinical trial
to take me (good luck) I am tough out of luck and prednisone is my friend.
Unfortunately my rd won't go beyond 10 mg of prednisone yet (or ever) and
there is not a dmard I haven't taken without severe side effects.  So life
goes on.  Naps, exercise, ice, heat and support from my friends.

Anyhow As you can tell this was a whine.  Time for meds and demerol and
epsom salts and juniper essence in the bathtub.  Pat is helping  me out of
the bath now - not sure how long I can hold off having a bath instead of a
shower but believe me the inflatable lifts will be the next move - I need
that warm bath to relax me and help me meditate before bed.

Anyhow enough whine and cheese!  No more tears after today - on with life
again.  I can do it - have done this many times before in the last 11 years
and all of you have been behind me.  Just get rid of the ms like symptoms
and everything will fall into place.  And the idea of the scooter is okay.
We decided today there might be a period of an hour a day I might be safe
driving too.  I don't know if I trust myself - although I am the one who
suggested it.  The problem is when I get tired (and I never know when it is)
I am like I am totally drunk - can't walk properly, see properly or react).
So obviously no driving for a bit.

So smiles for tomorrow - going to Seattle on monday and see my nephew
(almost 4) on Tuesday after my appointment - Nothing could be better.  He
drew me a special picture for my fridge and is giving it to me then.  He
thought he might sleep with Pat and I in our bedroom on Tuesday night so he
wouldn't miss a minute with us.  Life is sweet!

Thanks everyone - Diane and I will make it - we are on different but the
same journey.  We have the same sense of drive and the same sense of humour.
Yesterday when one of the doctors (mr doom) suggested a colostomy bag Diane
said no I don't think so.  Too hard to match shoes to them. He was a little
surprised with the comeback.
thanks for the encouragement Denise.  Hope you are having a great weekend.

Kelly

kelly, i am so glad you and Diane have each other. i can tell how much
strength you get from one another. i appreciate you keeping us informed
about her, and about you, too. i hope you can get a scooter soon. it's
an incredible sense of freedom. i HATE that you have this ms-like
thing. grrr.

diane