Re: Wobblin' back again

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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