Sunday, March 16, 2008

Drip, drip, drip, tethered to the pole for five days - IVIG

Jim getting gowns & jammies
ready for the red carpet bag

Jim getting gowns & jammies ready for packingHere I am, down to the wire - this really is a *we* situation, because it takes both of us to get it all wound up, and road-ready - with just about everything ready to go. I've crossed the midnight line, but it is still Sunday night. In my book, Monday has a bit of a wait before it is allowed to come. The rest that has to be done is up here on my bed, and goes either in the brown carpet bag, or . . . are you ready for this . . . my new RED purse! Yessiree! Remember when we took Ashley and Ashton home - oh, no, you don't do you, because I never got that second part of that weekend written. Well, anyway, on the way home we stopped at Turtlecreek Mall, and I found the perfect purse, and it is shiny red, just what I wanted. I do remember writing about this at some point, but maybe not in conjunction with that trip. But it was at Francesca's that I found it (that's one really neat store . . . it robs me of my money almost every time I go in there, for shame! ;). I also got a pearl bracelet with a breast cancer awareness ribbon on it.

Back to the task before me. What really is all that? It surely is more than throwing these things in the carpetbag and purse. It is also throwing my feelings up, and sifting them as they come falling back down. There is the admissions mess to face, wondering how it will go. Probably okay since Jim talked to the director of admissions, David Shaw,who asked to be called when I was ready to be admitted the next time. There is more detail about that in last Thursday's "As Willie Nelson would say..." It is with a heavy sigh that I think of having to go to holding first, and I go prepared to have to make as few changes or adjustments as possible, and again this month, I will wear jammies. Then there is the check-in with all the questions. Past illnesses and surgeries have not changed. With this day and age of computers and accelerated technology, why cannot this information be gotten from my previous admissions. It hasn't changed in the last four weeks! I'll try to print that out whenever I print out my medication list later.

The wait. I am on alert every moment I am in the ER Admin/Holding area, even though I do try to keep my mind occupied, or allow myself to sleep, but there is usually too much going on in there, and within me for me to go to sleep for very much. Z Then there is traipsing through there with all my paraphernalia for nearly a week's stay. How, just how please tell me, can you come prepared to stay for nearly a week without having a bunch of stuff with you, and I *do* try to keep it to a minimum. It is necessary to have two *outfits* per day. Invariably, though, someone makes a comment about my "moving in" or one nurse is explaining to another nurse why I have so much stuff. Sometimes I feel like carrying a placard stating my reason for being there, and why I have what I do on my person. Can you hear a bit of irritation? Just wondering; I am feeling it. Maybe I am getting at some of the *nervous tummies* I've been talking about each month. Not all, of course, but certainly enough to be an unnecessary stress load. This is not good first of all for the purpose of my hospitalization, the IVIG for the Myasthenia Gravis, for which stress is a detriment, and the hospital is one of the worst offenders (maybe second after Medicare in making me go there in the first place, grrrr). Anyway, these are just some of the cons that are dragging me down right now, making me want to postpone the inevitable. No, oops, almost forgot. The one nurse that thinks she knows better than my doctors. I have found out during this past period at home that she could not do what she did a couple of months ago when she denied me a shot that my doctor told her to give to me. That was not the only time, either. I will get this straightened out at the beginning this week, but this is not something a patient should have to do. If a doctor tells a nurse an order, that should be it. If she disagrees, then he should be the one she should be telling, not the patient. Getting this monkey off of my back!

On the other hand, there is a certain excitement about getting to the third floor. Now it does mean missing Jim, and I really do dread spending each day away from him. We have developed this crazy relationship between us that I am finding irrisistible and desirable. Y He has tried staying overnight down there, but it hurt his back so badly, that he just cannot sit down there for a long time at all. Then, it is best for him to get home at a decent hour to get himself rested and settled in from the day's trip, and emotional stress on him. But, I really am looking forward to getting away, and among *friends* even if it does mean they are going to be probing evasive veins, waking me when they want to, making me conform to their time schedule, etc. That's okay, though.

What is their reaction going to be whenever they see my new hairdo? Surprise for sure, at first glance. I have to be sure and try to *fix* it so that it looks nice. It won't be like Gina did it, but it will be a whole lot better than it was! Then wouldn't it be cool if we saw some strength return to my arms so that I really could fool with it, and fix it. *Smile* Even a little improvement would help me be able to do that. Ha. Ha Just some more of those baby steps we - I, Jim, and my medical team are looking for. On our way. On our way gang, down the road towards remission. Let's not fool anyone, and allow them to think it is a stroll in the park, taken quickly, day by day, because it is not. Going *one step at a time* I have probably not gone more than one hour of the first day. This is a s-l-o-w journey! Presently, this is acceptable to me. Yes, I'd like it sooner. Like, well, how about yesterday! Changes for myasthenics have happened in many different time frames, and under many different circumstances. We are snowflakes. Each of us is totally different.

One day I will sit down here and explain all I am dealing with in addition to the Myasthenia Gravis. It is important for me to separate the MG from the other diseases so that I can distinguish that improvement while the others still exist, leaving me with some of the same symptoms I am plagued with today, mainly my arms and legs that are so severely affected by the polyneuropathy. Treatment for the MG will not help that. This is a really crazy mixed up world of mine isn't it? Gotta say, it sure makes life interesting . . . and a little troublesome now and then, too, but let's just keep on trying to keep the upperhand, and not let any of these things be in control. NOT an easy thing for sure, and it does take some persaverance from both of us. We have to work together. There it is again. That team. If he wouldn't want to kill me for waking him, I'd get Jim up, and give him a hug (big one), and kiss for all the love I have for this team we have grown. Yeah . . . giggle . . . it has been growing. Never could I have imagined us at near midnight folding my gowns and jammies, packing them in the carpetbag, getting the diabetic pump supplies, packing the Depend bag . . . all this and more, and laughing so much while doing it, especially when we discovered we had had a misunderstanding earlier, leading him to do his grocery buying differently than otherwise. We just burst out laughing whenever we saw we were each figuring out how to get the last word in after conceding the miscommunication did occur! Life is wonderful isn't it. At least it is if we will allow it to be.

Why do I talk so much about Jim and my relationship? Here we are, a couple of Senior Citizens, and proudly so. We have had our ups and downs throughout the years. It was not in my dreams when I wanted children that they could make such a change in what I considered a loving relationship. I could start typing right now, and go on for I don't know how long about our time in Montgomery before we left our South, and flew to Izmir, Turkey. Jim was twenty-four, I was twenty-one. Can we say "Exciting?" That was December 1963. More excitement as we learned to get around in this foreign country as we lived among the Turkish people for the next year. And then the big event occurred! Baby on the scene! Our lives were change forever. Only looking back now can we see so clearly how the little brook that trickled between us with that baby, grew throughout the years with each baby, and childcare responsibility into a torrential river.

What I am writing so profusely about these days here, and am so excited about is Jim and me finding the love that young couple had for those three years before the pressures of parenthood squashed much of their united fun, and expressed love. The team that made *one* that I am describing today. So, every time something happens that shows the restoration of that part of our relationship, well, I just get rather giddy. *happy grin* This is my blog. It is about me, or it is what I want to be told, and I want to tell that even among all this negative hoopalla with Prostate Cancer, Myasthenia Gravis, Diabetes, and a score of other diseases and illnesses pulling on our shirtsleeves, our love can still restore, and bloom with the sweetest fragrance. Since I have this focus on MG, I want to show that even though depression can be a real factor (often?), one can be as a ragdoll (as I demonstrated recently), and of not much use to anyone for periods of time, yet one's life can still be renewed, and more alive than ever before, and I do mean than ever before because I believe our love is greater than even in 1962. Maybe I shouldn't say "Thank you," to Myasthenia Gravis, but if I had not been brought down to this level, Jim and I might have missed this most beautiful opportunity that is now sending my heart fluttering into *some* kind of feeling that is so sweet. This afternoon, after he got off the telephone, I told him how *cute* he sounded. Now, I don't every remember telling him he sounded *cute* when listening to him talk on the telephone. See what I mean? I think it is partly that we just appreciate the little things about each other, whereas when young, we didn't know how important were the little things in life. Age. The beautiful thing about age. It points to the beauty of life.

Isn't it nice. My *pros* in contrast to my *cons* above are much stronger, and do not come near in importance. Ummm, I believe that is called perspective. This makes getting to the third floor all the more exciting because it means I will get the pooled blood of all those thousands of people who have donated blood . . . maybe it will help me get a step or two further down the Road to Remission.

Missie & Callie while I got ready.
They helped, Missie ready on the keyboard.
Striving for a world without Myasthenia Gravis

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