Hi Donna,
Was going to write yesterday but had a really full day full of great things.
Will take things one at a time here - the rental is great in the sense that
I don't do anything to the house except watch the ferries and the ocean
occasionally. The ferries are a pain afterawhile especially first thing in
the morning. The diesel smell and noise kind of get you after a bit. But it
is okay.
The holiday was very relaxing and yes I did buy way too much fabric but it
was so cheap. My big buy was batting for my quilts. It sells for over
$15.00 a yard here and I got a deal at $2.90 a yard. Bought 10 yards for me
and 10 for my girlfriend. Could hardly lift it (well couldn't by myself)
and it filled the backseat. Was a great deal. As for quilting well things
will even improve a little with our group. I will still come to Victoria
once every 2 weeks to be with them on Monday morning quilting but will also
schedule doctor's appointments to coincide with our guild meetings. The
retreats that we have 2 - 3 times a year will always be open to me
(especially since I plan at least one of them a year) so that is good. They
are a grand group of friends and we are also online as well so all is good.
One of the ladies that attends the retreat every year at the guild also
lives 5 minutes from where I am going to move so I suspect we will quilt
together occasionally. Duncan has an active guild I will join as well -
quilting is rather a social and creative outlet for me as you can see (an
obsession).
The spasms are more manageable now that I know what to do with them. Heat,
cold or infection can send them flying into a pain level that is incredible
if I don't watch. I try to keep showers etc at not too high a heat. I do
put up with the spasms to ice my ankle and feet a couple of times a day but
try not to do that before bed so they are gone before then. I can suspect a
bladder or uti infection if they get too bad for a bit. Making sure I keep
my
gabapentin and
keppra on a strict schedule is the big one. I can tell
when a dose is required. I now tend to keep my feet out from under the
sheets at night - that helps immensely. These temp seem to interfere with
the nervous system - this is something I have learnt from others over the
internet. I use diabetic socks that don't bind or impair my circulation or
similiar - not anything too tight. And when it gets bad - well I wine -
oops whine (just a little spelling mistake there - I would never imbibe
(yeah right!))
Donna - you deal with things well. I agree though the spasms can send you
right up the wall. Hard to tell anyone what that pain is like - not like
the RA stuff or the bladder or anything. I feel for Megan dealing with it
now with a child. Wish there was some way to help her as this is what the
rls would feel like too.
My reactions to the infusions seem to be over although I still have some
throat trouble - just irritation. More of a nuisance than anything. Of
course have felt no relief yet and have several more months to go before
that. Trying hard to be patient. I did up my
prednisone to go on holidays
and am reducing it now. That has given me a small break from the pain - I
really needed that to stay positive as I was feeling very down and drained
from the constant day to day crap. Not looking forward to finally being
down to 10 mg again as I know the condition is still there. I am glad they
are considering upping the steroid treatment for you - that might be the
answer especially with the breathing problems. We are now giving 45 mg of
medrol by mouth the night before so it gets into my system and then the 100
ml of iv solumedrol the day of the treatment. Apparently the solumedrol
doesn't always get into the system if done the same day. Works for me as I
am not going through the not breathing thing again - damn how do you do it.
Anyhow the other news - my husband bought me a new sewing machine and table.
He said when the house sold and I tried to convince him (but not very hard)
that it was not really necessary but..... It will sew without the foot so I
am not enduring the pain on my leg. It is a start stop button or you can
use the conventional foot pedal. It has thread cutters (saves hands) and a
big area so my hands are not squeezing the quilt into a small arm area to
quilt it. Will help my hands so much. The table is very ergonomically
correct with a large area to hold the quilt so again I am not constantly
fighting with my hands and arms. The table gets delivered next week but I
have been playing with my machine.
The economy in our area is pretty good but Pat has been waiting for this job
for a bit. It is a development up island that he will be getting permits,
arranging sewers, water, bylaws, sports facilities, education (private
schools) partnerships etc. Should be exciting. He is so close to
retirement (probably within 3 years) or more like semi retirements that
having a good job to end things on will be nice. The pay is also what he
should be making. He has been working on a lot of government consulting
jobs which pay the pits!
The book is a little thing. I sent Diane one at one point. My sister gave
me one and I always seek inspiration in the words and the pictures. At
first I took it as being rather gloomy but the more I read and looked the
more it gave me a kick in the pants and a lot of laughs. His pictures are
so incredible and the words are so inspiring now to me. I especially love
reading some of the people into the descriptions. Some people are gloomy
and you have to avoid them. There is love out there and you need to seek it
out. You need to dance (if only in your mind). I now have several of his
books.
Anyhow this is turning into a diary. Off to sew for a bit (I am making a
wonderful batik quilt right now that is cheering me. Can't imagine the
world being gloomy with this quilt in it.).
Take care and avoid the heat if you can. Get that tv on and enjoy (what
great friends!)
Kelly
>
> Kelly, I gotta tell you, you are a true inspiration to me. I don't
> know how in the world you deal with the constant barrage of muscle
> spasms and such. These spasms since my stroke bout want to kill me
> sometimes. They really really got bad while I was in the hospital in
> the bed all the time. Those things can curl your hair!!! I hate
> them and often think of you and all you must endure. Makes me so
> impressed with not only how well you deal with it all, but how well you
> deal with it and continue to remain so upbeat and encouraging!!! God
> bless you for all you have to endure!!!
>
> Hope the new place is making your life much easier.
>
> Congratulations to Pat on the new job. With the economy the way it is
> and the job market so bleak in so many areas, I am thrilled to hear Pat
> got the job he was hoping for. May those jobs continue to be available
> for him as he needs them to arise!!!
>
> Rest up my friend from your trip and stay cool!!!
>
> BTW, will watch for the package, but you shouldn't be sending me
> anything. You need to save every penny for your health stuff! I know
> how very draining that all can be!
>
> How are you feeling now after the infusions? Hoping that the side
> effects have eased by now and that you are just waiting for things to
> kick in at this point. I thought of you the other day as I filled out
> the paperwork again for my next round of infusions. This round, we
> will skip the IV benedryl since I reacted to it last time with the
> hives. RD thinks just using the tylenol and IV steroids will be fine.
> May up the steroid dose, but we'll see. RD is thinking on that.
>
> Anyways, welcome home and rest up!!!
> .
> .
> .
> .
> Hugs,
>
>
> Donna
> .
> .
> .
> .
> 1. ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
> 2. J.K.M.A.
> 
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