Re: Diane's news
- From: "ladylove77" <ladylove77@xxxxxxxxxxx>
- Date: Sat, 27 May 2006 12:51:20 -0500
Kelly, no wonder you get discourged! All I know to do is to pray for you.
Gwen
"Kelly" <kelly.e1@xxxxxxx> wrote in message
news:BEQdg.194560$7a.102890@xxxxxxxxxxx
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
"melodymom" <melodymom51@xxxxxxxxxxxxxxx> wrote in message
news:b2732ae59e830001db58c72c17f48890@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks, Kelly. You have more than enough going on in your own life, so
it's great that you can stretch yourself for Diane, too.
You are both in my thoughts. Best of everything at Virginia Mason.
luv&stuff,
Denise
.
- References:
- Diane's news
- From: Kelly
- Re: Diane's news
- From: melodymom
- Re: Diane's news
- From: Kelly
- Diane's news
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