Re: Wobblin' back again

Billie, i hope that your next treatment is over well in advance of Christmas
so you can enjoy that time!

it's excellent that you are regaining some muscle strength ! ! ! that's
awesome!

i hear you on losing the computer..... mine went south at Easter, and i
recovered by a Ghost backup
then another problem arose, and i again had a Ghost back up to fall back on
the third time, i lost the ghost back up as well :-(
and lost all those e-mail addy's and information that i wanted to keep

i DID keep 'My Documents' so, it wasn't critically bad!

kate

"Billie" <someone@xxxxxxxxxx> wrote in message
news:0qtWi.3433$%Y6.1336@xxxxxxxxxxxxxxxxxxxxxxx
Yes, Kate, the last time was quite a short interval because of the lengthy
stay before it. Because of that, and what we felt was a blast to my body
too soon, that is the main reason for adding a few weeks to the schedule.
So, on to six weeks now, and not too far down the road, IF things continue
to improve, the beginning of the reduction of the prednisone. My doctors
feel they are seeing some muscle strenthing. Endo yesterday said he say
stronger eye muscles, and neck muscles. I still have to be careful
eating. If I remember my eating rules *s* I can do pretty well. I now
have to take the gastroperesis into account. Oh, well, big deal. It is
causing me to have some high number, and where he lowered my basal in the
hospital to prevent the hypos I was having, I need to raise it back up
now.

Thanks for* everything* Kate - lost everything that was on the other one
;-| ...... been meaning and *trying* to write for a while, but no energy,
plus lost everything in the liquid-spilled-computer. That was a mixed
blessing...... lol Been talkig about getting a smaller one I can more
easily handle, but woul rather it have been at our choosing. Jim was SO
very sweet about it. He keeps reading here, but I cannot get him to post.
He might, especially on an OT thread. Being my chef, he fits in nicely
here.

Billie

"Tiger Lily" <me@xxxxxxxxxxx> wrote in message
news:5ojsmbFn28pbU1@xxxxxxxxxxxxxxxxxxxxx
wow! what an update Billie

all the best goest your way.......... congratulations (?) on the new
computer :-)
and thank fully you get a break before the next treatment!

take care

kate

"Billie" <someone@xxxxxxxxxx> wrote in message
news:RrWUi.1311$%Y6.483@xxxxxxxxxxxxxxxxxxxxxxx
No need asking; I am sure you've all been good. Bet I could just about
give you the answers to some of you on the matter.... LOL Here I am,
wobblin' back again, this time dragging a new computer along. Ya gotta
know when is the best time to pour liquid all over your computer, and
send a sad text to your husband. (: He has shown soooo much improvement
in his computer knowledge that I told him I trusted him to pick me out
one himself (some people will say anything for a new computer ;). I had
already been talking about going down in size of computer because my
arms could not pick up nor hold the one I had very well, and I was
having to put it up on bedside table all the time, out of my lap.
Several weeks ago I'd bought a little Acer for Ashley and felt I could
handle it for email and such, which is all I've been doing lately
anyway. Well, you know husbands, he came to the hospital room with a
little bit better of one; still light-weight, but a bit better than the
one I'd bought for her. I like the Vista OS, but it *is* a bit
different to set up and operate; just gotta get used to it, which is why
I'm so long getting back on here.

The computer was the only really good thing about the week in the
hospital. It started off with me having to spend two nights in the ER
waiting area, but they *did* get one bag completed, and one bag going in
when I went to my room. My chronology may be off a bit now, but the
morning they were going to send me home, I woke with what looked like
phlebitis on my right leg, and they started an IV antibiotic
immediately, then orals after that. After being scared to death about
hospital born infections by you all here, I was afraid to leave the
premises until I knew what it was, and where it was headed, and was
scared to go off home alone. Where was I worse off..... Home Alone
XII -- movie sequel in the making *s*, or..... Hospital Bound -- movie
spectacular (couldn't think of good words ;) of newsgroup participant
while an inpatient for receiving simple procedure? Da da da. Da da dum.
Mystery. I'm sorry, but misery loves company, and at home there would
just be Jim and me, and at least in the hospital I would be surrounded
by many, and if it got worse (it was snaking up my leg.... <shudder>)
there would be plenty to talk to (I *do* love to have people to talk
to!) if I got sicker and was confined there for a while. Phooey, I
didn't know, so I just told them I was staying put until the leg was
well, or healing. *s* Took cell phone pics of it and sent them to Jim,
and he agreed I should stay. And, hey! I was missing out on Ashton
being home from the hospital, too, so a really, really big decision to
stay put or pop on out of there on to the road home.

Seriously, I just felt it was the right decision to stay there until it
quit growing up and down, mainly up my leg, and getting redder. They
did bring in an infectious disease doctor, and cultured it, and a bunch
of stuff. I had thought I had a kidney (not bladder) infection, and a
culture proved correct, whereas a simple ua previously had not produced
anything. Will they ever learn to listen to us who have lived in these
bodies for so long? Another neuro doctor was brought in on consultation
about my myasthenia, and my trusty endo was out of town, but had his
partner come in each day checking on me. Heh heh He was impressed with
the good bg control I exhibited what with the prednisone, and multiple
diseases, plus the newest infection raging through my body. Kept all
readings below 120, and had many below 100s. Now, if I had that
continuous monitor, we'd know if I had any high spikes in there or not.

The head and neck aches returned with a vengeance, worse than before,
and they gave me pain med intravenously whenever I had the explosive
pain. I was instructed to return to the neuro if I was still having
them the Friday after my discharge, and it was necessary to do so, which
turned out to be a good thing because we got to have a long sit-down
with the neuron. It was decided on a different course for the pain med,
and also a change in the IVIG schedule. It seemed that we were just
blasting my body with *whatever* even though the treatments were showing
signs of helping in the one area (MG). If any of you are familiar with
meningitis, that is what it is similar to at the end of the treatment
when someone shoots off the cannon ball. Good ole me who is atypical of
most things, this is not typical of IVIG treatments - the headaches are
to a point, just not the placement in time, place, and duration. We
learned to *fix* them during the administration of the medication, but
once it is withdrawn, *that* is when it seems like my body *rebounds* or
some word or other.

So, our plan is to try to go further between treatments this next time,
scheduling the next one for December 15th. This last time, I had barely
had a chance for the side effects to subside, and for us to get a chance
to see how well it did until it was time to go back and start all over
again. I was beginning to feel like being beat up upon over and over.
If I should go into crisis all we have to do is go in for a treatment
sooner. It feels good to know I'm not packing up for a trip right away
again at least. I feel like maybe I can rest up a bit for a while, and
enjoy and benefits I may have gained.

My legs responded favorably this time. That was coming from almost no
use to non-quivery/shaky. I'm still not trusted to try to walk any
distance without assistance. I keep practicing the song, "Weebles
Wobble, but they Can't Fall Down," thinking that when I can sing it,
I'll be able to walk independently. *vbg* I'm trying to figure how
much it is a wobbly head (you know, dizziness etc) and how much is
wobbly legs. There is not much leg muscle; I just noticed recently how
little thigh muscle there is.

Well, here goes weebly, wobbly Billie, teeter toddlin' along, lovin' you
all!
Billie






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Relevant Pages

  • Re: Wobblin back again
    ... Yes, Kate, the last time was quite a short interval because of the lengthy stay before it. ... My chronology may be off a bit now, but the morning they were going to send me home, I woke with what looked like phlebitis on my right leg, and they started an IV antibiotic immediately, then orals after that. ... If any of you are familiar with meningitis, that is what it is similar to at the end of the treatment when someone shoots off the cannon ball. ... There is not much leg muscle; I just noticed recently how little thigh muscle there is. ...
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  • Re: Wobblin back again
    ... until the leg was well, ... plus the newest infection raging through my body. ... it is similar to at the end of the treatment when someone shoots off the ... Well, here goes weebly, wobbly Billie, teeter toddlin' along, lovin' you ...
    (alt.support.diabetes)