Thursday, March 13, 2008

As Willie Nelson would say, "On the Road Again..."

Okay, let's get ready to roll! It is Friday. Time to get confirmation from St. Francis later tooday. Let's not borrow apprehension based on past experiences with admission through St. Francis - Bartlett. Everything may go very smoothly this time. After all, my motto, mantra, whatever you want to name it is HOPE, so I should let it apply to all aspects of my life shouldn't I, and smooth admissions is no exceptions (pssst, Missie down there... oh, you're asleep . . . I'll not bother you with your opinion, but I know how consistent you are with all areas of your life little girl (do we laugh now, or later?). Okay. Let's boil it all down to this. HOPE for this admission.
  • The hospital receives Sheila's fax, and returns whatever information that is needed for her to insure my admission for Monday morning, and it is all in accordance with Dr, Saeed's orders
  • Sheila calls Friday (for my peace, and lower stress load to keep MG symptoms down, in the morning (be sure and take the *gem* pills ;) )
  • When we approach the ER check-in window Monday morning, all cool, calm, and collected, they have Dr. Saeed's faxed copy there in the stack that they tell us each time that if the hospital has it, it will be in that stack right there, but never, to date, has been.
  • If Dr. Saeed's faxed records for me are, per chance, not in that idolized, cherished stack, the clerk will apologize (that would be for the extra time it is taking from the patient who is there because they are ill, and are not there to pick up a package from Sears & Roebuck! especially the Sears hehe), kindly acknowledging it is not there, and she must go to look for it somewhere else in the department (might she do anything to make the patient more comfortable in the meantime?). Everything needed for me is there in the idolized, cherished stack! At this point, I bite my tongue here, or is that break my finger, to prevent myself from making a most inappropriate remark, as I am not routinely, or anytime, in the habit of doing so in the first place. Oh, for the shame of it all to even think of being sarcastic! Please, children of mine, close your eyes, and do not read what your mother might have written, and if you read it, please, dear children, please forget it. Thank you. Now go your merry way, have a happy day.
  • Two things: First, they have a room available, and I am able to go directly to third floor. Ohhhh, my, it has been so long, I think I might pass out, and not from a 16 blood sugar if that were to happen. I wish someone, somewhere would give me the magic formula for getting a room like that. I actually do remember the last time (not the date right off the top of my head, for all those scalawags have burned the dates right out, along with most everything else !), and how exciting it was. Second, it is necessary for me to go to Admin/Holding, but there is not a long wait in the ER waiting room to go directly to that area, meaning I do not, first have to go through the main, acute ER care section. The two areas do not mix. You know, like officers and enlisted in the military. At least that is the way it was when we were a part of that whatever you want to call it - it's me again who cannot find the right word she wants/needs to use, and is leaving it up to you, enlightened reader that you are. That was waaaay back in the dark ages when Jim was in the Air Force, so many things have probably changed since then. Y Since I find myself in Admin/Holding, the best case scenario would be as few hours as can be, but in any event to keep the patient informed along the way, rather than poking their head from behind the curtain and saying, "It's your turn, you got a room, time to go upstairs." I can always feel my heart jump, and my body tense from that moment on. I have to bring enough *stuff* for a minimum of five (count that, 1, 2, 3, 4, 5 days, but with the time needed for getting my medications prepared, and the, what seems like a *come down* to me from the effects of the IVIG, it will be more llike six, 6, days. (When was the last time you packed for a five day trip; do you know how many Depends you need for five days? Someone never fails to make some comment on all I have with me. It generally takes two outfits per day for the fashion queen bee here because she either drools so profusely she soaks way down the front of her jammie tops (ugh, nasty -shudder & wrinkled nose-), or the bottoms get damp (that's putting it gently) once that IV begins its marathon, running all that fluid through. I'm not sure how many runners, nor the distance. When I get the details, I'll be sure and pass that information on to you.
  • Whooppie, third floor here I come! Once there, I hope they remember that I am a patient, too, and take care of checking me in as they would someone they didn't know a baseball from a basketball. I would never, ever complain because they are so, really very good to me (one of the CNAa said, that doesn't matter, I am a patient just like all the rest on the floor, and I shouldn't have to be put off (like some instances in the past)), plus it is not easy for me to ask people to do things for me, especially until I get things broken in and feel at ease, so to speak. Once I'm in my bed, in my comfort zone, I can do much better speaking up for myself, and even then, it takes a few hours or so. Any of you like that? From what I read around the blog community, it sounds like a lot of self-assured women out there, but actually, I have to wonder if that is reality, or their wish-ability here in the safety of blogworld. Does that speak for anyone? I believe it might fit the bill for me, but I am at least using my real name. Comments are very welcome. :) Y
Well, that brings me to a pretty good admission, don't you think? Is that asking too much? Let me know what you think.

Now, let's get "On the Road Again," along the Road to Remission. I've posed the question to one of my email groups about *remission* because it is not clear to me exactly what it means as far as Myasthenia Gravis is concerned. One thing I *have* learned, and that someone *can* be bedridden, wheel chair bound just as I am, and up and running races today. I'm waiting for more info from her, but I imagine she is younger, and probably has less *other stuff* she is dealing with. That's okay. With a rare disease, I'd say I am limited in the direction to set my goals, and there is no way of winning anything without a goal.

Matthew shopping at Wal-Mart 2006

Striving for a world without Myasthenia Gravis

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