Thursday, January 10, 2008

Doctors and Hospital Rule again

Here we go again........ the day before! I know. They think I am a rubber, bouncing ball! However, whatever, I am glad of the change made this time. Have you ever had rainy days that felt so good and cozy, while sitting inside reading, sewing, watching TV, just idling on the computer or reading and answering emails, things that are hard to accomplish if the day is too sunshine beautiful to sit, and waste time (so it seems)? That is what this day rose to be like..... no sun was shining, we had our morning coffee time together, then it was time to start drawing things to a close. Though unable to jump up and down and get all around as you might do, I still can pack bags from my bed. Amazing all the things you learn to do whenever you have no other choices. ;-) There wasn't much more to do, so I just kinda dwiddle dwaddled along throughout the morning; Jim was to call Dr. Saeed's nurse after noon to make sure she remembered to get him to sign my orders, and she then to fax them to the hospital.

This is a new nurse. Rose, the nurse we have had, who was so sweet, and thorough is no longer there because of having a baby, a little boy. The new nurse, I do not know her name yet, was soooo excited whenever she talked to Jim because she had remembered, and already had my orders signed!! She only had faxing them to the hospital left, and she would call us back once she had done that.

Ahhhhh...... all is going well. Does this sound far too familiar to those who have been here these past so many months? Let's see..... we began these treatments May 4th, and though we've been doing them every four weeks, I don't think it actually comes down to that many because of scheduling, but this is about my seventh or eight IVIg. If I get bored, I'll count them out, but whenever I'm feeling this good, I do not get bored! Too much to do. Too much fun to be had. Too much living to do.

Ooops.... I could have run off the main road here, and followed that tangent of all else that I've been doing that this MG has knocked me out of for the past few years, but now has been coming back. Woopie! Helps the ole self-esteem!! Lifts the spirits. Just you wait. Chuggalug, chuggalug, here we go, down the road, Road to Remission! Oh, the doubts. Oh, the dreams. Back and forth, back and forth. Good days, great days, wonderful...........ooooooh noooooo....bummer days all of a sudden, out of the blue, what to do? Reach for the Perspective. Try. Try. Subject for another time.

Back to the main Road where Sheila, Dr. Saeed's new nurse - I found out what her name is - is busy getting me set up with the hospital. It is not very long before she returns Jim's call. Hearing this one-sided conversation, his side sounds okay, just a little difference in there I cannot quite make out what it is (remember I'm hard of hearing, and only hear parts), and I hear a *totally unexpected* word - Monday. Monday? Monday. Aarrrrgh! Hurry, Jim, Hurry, Jim. Get off the phone. What is all of this about Monday? My senses are all perked up. I can get very impatient sometimes. hehehe Think it aggravates Jim. Poor Jim, my sweetie. Can't say as I blame him, though. I'm such a nosy thing, a *right now* person! I *think* I may have a son somewhat like this, but I wouldn't say so, and I don't think you should either. hehehe I mean, as fast as anyone decides to move his business from his house down to main street Senatobia, Mississippi, and then has the fete completed as quickly as he did, is certainly not static! But, it *is* okay to tell anyone that I'm proud of him *s*, and really do love him. *s* Gush.... Oh, now I'm blushing, and he's probably going to fuss because I mentioned him in public. I'll just tell him it was good pr for his business. He'll tell me I could have done it without the mushy, mama stuff.

Yep, I was hearing right, even with the little hearing I *do* have. "We're not going until Monday," Jim tells me, but the apparent good part for us is that we will be going straight through admissions this time, and not through the ER. I hope with all that is within me this will come to pass. Those working in Holdover in the ER are just as nice as they can be, but it is very stressful to have to go there, settle in, get my first bag of little globulins running through my veins - oops, catch that bunch over there, they're getting out of line, bet they didn't pay attention - then later, they pull the thin little curtain back - peek-a-boo - and tell me I'm traveling. Going to my floor. Third floor at St. Francis - Bartlett.

It doesn't seem like much, but with Myasthenia Gravis, even that much stress can have an effect on me physically; can bring on the MG symptoms. There is nothing I can do about it. I try with all my might; use all my techniques I've learned over the years. But waiting, being jerked around from place to place like that.... that naturally stirs up my system, my system that we are trying to flood my with all those little gamma globulins, and give it some protection from the antibodies so that it might work fairly normally for a little while - at least more than a couple of weeks - eh, docs???? Wikipedia has good explanations

So, there it is. Wheeee...... the weekend at home while feeling so good! That sounds like a good time to have some fun! What will it be? More time on the computer doing digital graphics? Jim's got another batch of old photos to be scanned. Now would be a good time. Plenty of digital photography to do. Digital art. Because of the blog, all the new babies, my mind keeps coming back to the photography work. I just love that, and really, I've been doing more of that for the last fifteen years, than anything else. I just cannot look at a picture, and not have my mind start seeing possibilities in it. Now that I am feeling better, and now can see better once again, maybe, just maybe, I can get back to getting pictures printed as well. Is this not proof the IVIg is working. Small steps like this? I think it is, but I'm so impatient. I want it all *right now*!!!

Maybe I should settle for a good night's sleep *right now* to help maintain the status quo. ;-) I tend to get stuck in GO, and have a hard time slowing down or stopping for those good rests that are the best medicines for Myasthenia Gravis. Oh, and it looks like a great time to clean off my computer, temp files, etc. Maybe a reboot. I have so many open windows, and programs. Tsk Tsk Maybe upload some pictures to Flickr. Maybe.... ahhhhh.....see what I mean. My mind never stops...... See you later


Striving for a world without Myasthenia Gravis

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