update and Merry Christmas

Signature

Cyberhugs,
DianeW

It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry

Well several people have asked for an update and I have been trying to wait
until I was feeling positive. So Pat (my husband) just served me a hot rum
and after downing it I am ready to be positive! A merry christmas and Happy
Hanakah to those who don't want to read further.

I am definitely moving better. I am out of the wheelchair, using the walker
outside and the cane inside and sometimes walking without either inside
although I know I shouldn't (don't walk well and am a little unsteady). My
foot still doesn't hit the floor and neither do my toes due to the spasms
but first steps first. The spasms unfortunately cause wild pain 24/7 but we
are upping my baclofen to 10 mg 3 x a day in the hopes of helping there. I
am also taking lyrica which is marvellous although not really helping
enough. It is a start though. The catheter is out but the bladder is
overactive and I think I have a 3rd uti in a month and a half. That
apparently is common. The bowel has improved a little. The numbness,
swelling (edema because it takes muscles to help the lymph nodes
apparently), and the tingling pins and needle pain are still there although
down about 2 inches from where it originially was.

It will take at least another 2 - 3 months before I can drive. I have an
appointment with an opthamologist requested because my eyesight is getting
blurry in the last month. They aren't sure if it is the lyrica (1% side
effect but who is counting), the solumedrol drip I had - apparently 1g for 3
days will do it, or the ms or ms like junk.

I am going into work (I work very part time) 2 hours a week so I can keep my
job but might reconsider in the New Year. Haven't decided if it is worth
the hassle and pain. It does get me out of the house though. Other than
that I get out for doctor's appointments, pt appointments, massage
appointments and the odd time when someone takes pity on me. Can you say
cabin fever???

So things are improved and as soon as I finished crying from the pain that
has been unrelenting since 5:00 this morning I will feel grateful for that.
This makes my RA (which of course is flaring since all I can take for the
next year is the 10 mg of prednisone that I am on) seem like a scratch on
the skin. Actually I think the solution is probably a hot rum diet for the
rest of the term. If only I could tolerate liquor very well. Unfortunately
I can't - can you say ulcer!

I have finished the Christmas preparations though - pat is cooking,
cleaning, shopping and everything else. Don't know what I would do without
him. Also went to Vancouver last week to my moms and had a wonderful 3 days
with my 3 1/2 year old nephew (decided to risk a chance of germs for short
visits each day.) He cheered me up considerably and was really gentle with
my leg. His words were "You are well enough for me to see you Aunty Kelly -
I missed you sooooo much." We sat and made Christmas cards with craft
goodies I brought with me. He is so funny this Christmas - I love that age.
Santa is so real, he has bought presents for poor kids, carrots for
reindeer, everything is a secret (including what he wants from us and
Santa - he won't even tell his parents - only Santa.) He and I sang
Christmas Carols all afternoon on Thursday - Jo you would be glad you didn't
hear that tune believe me. Wouldn't have recognized it at all.

Anyhow it will be a very good very relaxing Christmas - thank you for all
your support this year. May your Christmas and New Year bring you and yours
happiness and little stress. Diane W - I will be thinking of you.

pat is calling me for dinner - ham and salad! Take care everyone,
Kelly

Reply to this Message

Kelly - With all on your plate and you still have time to think of me! I
feel badly that I've been amiss in keeping up with the posts and must have
missed the one that finally told the diagnosis you had been looking for. I
vaguely remember a post talking about solumedrol but then I'm not really
sure. What's was the final outcome?

I'm glad you are doing better -- your post reminds me of how I felt after my
first MS attack and 5 days of solumedrol. Email if you want --- I'm back
home finally and hopefully for the duration of the holiday.

Have a Blessed and Happy Christmas. You are in my thoughts and prayers.

Signature

Cyberhugs,
DianeW

It is only with the heart that one can see rightly; what is essential
is invisible to the eye. --Antoine de Saint Exupéry

Well several people have asked for an update and I have been trying to wait
until I was feeling positive. So Pat (my husband) just served me a hot rum
and after downing it I am ready to be positive! A merry christmas and Happy
Hanakah to those who don't want to read further.

I am definitely moving better. I am out of the wheelchair, using the walker
outside and the cane inside and sometimes walking without either inside
although I know I shouldn't (don't walk well and am a little unsteady). My
foot still doesn't hit the floor and neither do my toes due to the spasms
but first steps first. The spasms unfortunately cause wild pain 24/7 but we
are upping my baclofen to 10 mg 3 x a day in the hopes of helping there. I
am also taking lyrica which is marvellous although not really helping
enough. It is a start though. The catheter is out but the bladder is
overactive and I think I have a 3rd uti in a month and a half. That
apparently is common. The bowel has improved a little. The numbness,
swelling (edema because it takes muscles to help the lymph nodes
apparently), and the tingling pins and needle pain are still there although
down about 2 inches from where it originially was.

It will take at least another 2 - 3 months before I can drive. I have an
appointment with an opthamologist requested because my eyesight is getting
blurry in the last month. They aren't sure if it is the lyrica (1% side
effect but who is counting), the solumedrol drip I had - apparently 1g for 3
days will do it, or the ms or ms like junk.

I am going into work (I work very part time) 2 hours a week so I can keep my
job but might reconsider in the New Year. Haven't decided if it is worth
the hassle and pain. It does get me out of the house though. Other than
that I get out for doctor's appointments, pt appointments, massage
appointments and the odd time when someone takes pity on me. Can you say
cabin fever???

So things are improved and as soon as I finished crying from the pain that
has been unrelenting since 5:00 this morning I will feel grateful for that.
This makes my RA (which of course is flaring since all I can take for the
next year is the 10 mg of prednisone that I am on) seem like a scratch on
the skin. Actually I think the solution is probably a hot rum diet for the
rest of the term. If only I could tolerate liquor very well. Unfortunately
I can't - can you say ulcer!

I have finished the Christmas preparations though - pat is cooking,
cleaning, shopping and everything else. Don't know what I would do without
him. Also went to Vancouver last week to my moms and had a wonderful 3 days
with my 3 1/2 year old nephew (decided to risk a chance of germs for short
visits each day.) He cheered me up considerably and was really gentle with
my leg. His words were "You are well enough for me to see you Aunty Kelly -
I missed you sooooo much." We sat and made Christmas cards with craft
goodies I brought with me. He is so funny this Christmas - I love that age.
Santa is so real, he has bought presents for poor kids, carrots for
reindeer, everything is a secret (including what he wants from us and
Santa - he won't even tell his parents - only Santa.) He and I sang
Christmas Carols all afternoon on Thursday - Jo you would be glad you didn't
hear that tune believe me. Wouldn't have recognized it at all.

Anyhow it will be a very good very relaxing Christmas - thank you for all
your support this year. May your Christmas and New Year bring you and yours
happiness and little stress. Diane W - I will be thinking of you.

pat is calling me for dinner - ham and salad! Take care everyone,
Kelly

Reply to this Message

Kelly - 24 Dec 2005 05:23 GMT

The diagnosis is kind of vague Diane. They still believe it is the rare
side effect of the enbrel although it is strange it happened now. I have
been on enbrel now for almost 2 years. It could have been because I went on
an extra odd dose to make up for the infections and surgery this year but
they don't really think so. Basically they don't know. The neurologist
said it could be the beginning of ms. Basically there was inflammation but
no demylination of the sheath. It is behaving like ms in that heat and cold
bother it, the spasms are exactly like ms, the bladder problems, the bowel
problems and the sexual organ crap sucks big time. The major problems
though are definitely the bladder and the spasms. The pain from the spasms
is incredible. I can't wear anything but sandals - even socks hurt. Pray
for no snow - believe me. The sandals can only be tolerated for a short
time. Do you get the edema too? I gain 8 pounds from morning til night and
even though I have lost 18 pounds the clothes I wore before the attack are
too small. Classic MS according to my physio. Other than that there seem
to be no rules. Exercise makes it worse, stretching sets off the worse
spasms and cramps, morning I have trouble straightening my ankle to walk.
Any help from you on any suggestions would be great! Of course i have the
RA pain because my gait is so bad. The knee, hip and ankle of my good side
are getting quickly wrecked from my lousy walking and the fact that the
right foot won't lie flat. Wearing only sandals doesn't help either. I
really need good support since I am off my dmard. Anyhow find it
frustrating to say the least. Don't know how you handle both!!!

I am going to ask my doctor in the new year to xray my hands so we have
benchmarks on what a year without dmards will do. Seems a minor thing but
to me kind of important. Also asking for a rehab doctor referral. Right
now I am the expert which isn't saying much.

Glad to hear you are home but sorry about the cruise. However maybe it is
telling you now is not a safe time - the cruise lines are having so many
troubles these days with norwalk etc that maybe your immune system needs to
be stronger. Maybe??? Was laughing about your son and his friends though.
My son gets home from university tomorrow and the first question will be
about his favorite cookies etc. Good thing he is happy with his favorite
store bought bagels, cream cheese, chocolate milk etc instead. The cookies
are definititely from the bakery this year (and personally I think they are
as good as mine - I bought the expensive different ones!)

Take care Diane - I have been worried about you.

Kelly

> Kelly - With all on your plate and you still have time to think of me! I
> feel badly that I've been amiss in keeping up with the posts and must have
[quoted text clipped - 89 lines]
> pat is calling me for dinner - ham and salad! Take care everyone,
> Kelly

Reply to this Message

DianeW - 24 Dec 2005 15:58 GMT

{{{{{KELLY}}}}} I can't tell you how sorry I am to hear what you are
going through. You sound like exactly what I've gone through! Just
last night I started thinking that perhaps I am going thru an
exaccerbation of MS -- so much of what you are saying right now is
exactly how I am feeling. The spasms are the worst they have ever
been. There is no position I am comfortable in. I would like to type
more and tell you everything but I'm afraid that sitting in front of
the computer is becoming more and more painful. But next week I'll be
home alone every day and a talk on the phone might be in order! Wht do
you think? Please email me and let me know what you think. Just take
out the obvious from my address and you'll get thru. I will tell you
what my neuro told me when I was first diagnosed -- Heat, Infections
and Tooth problems -- the three things that will send you into a flare.
Keep those under control and your MS will stay quiet. Boy, was he
right! That's been my problem with enbrel all along, the infections.
And of course now with the cellulitis, it would make sense for my MS to
flare up. Anyway, have a joyous Christmas and lets try to talk this
week.

Cyberhugs, Diane
PS - I'm going to try and email this to you but last one didn't go thru.

Reply to this Message

> Well several people have asked for an update and I have been trying to
> wait until I was feeling positive. So Pat (my husband) just served me a
> hot rum and after downing it I am ready to be positive! A merry christmas
> and Happy Hanakah to those who don't want to read further.

> He is so funny this Christmas - I love that age. Santa is so real, he
> has bought presents for poor kids, carrots for reindeer, everything is a
> secret (including what he wants from us and Santa - he won't even tell his
> parents - only Santa.) He and I sang Christmas Carols all afternoon on
> Thursday - Jo you would be glad you didn't hear that tune believe me.
> Wouldn't have recognized it at all.

While I think pain is a awful high price to pay, we do learn to take our
blessings where we find them don't we?

He sounds like a real love. I remember when my girls were that age, we
would sing in the car on the way to and from nursery school. Same with the
grandsons. It feels so good to sing out loud like that no matter how it
sounds.

Jo

Reply to this Message