Tuesday, March 11, 2008

Rolling along with the flow wherever it goes

What was it I said this morning?

"The sun shines brightly, a big welcome to us all! I wish a great, good day for you and for me!"

How about a changing day? Will that do? Just an hour or so after publishing that, Jim got a call from his doctor, the one who will be doing his surgery. I lay here and listened to his end of the conversation, and put a few of the pieces together/ At first, he just listened. Then he said that was what he'd been doing since December. Hmmmmm . . . the only thing I could think of that he had been doing since December, relative to Dr. David was wait. There were other small phrases, but one stuck with me when he said with laughter, "Don't y''all be too hard on him, now," which said to me, Dr. David Gubin must not be well, and not well in the way of kidney stones, for there was no other reason he would be laughiing. NOT that kidney stones are a laughing matter mind you.

Okay, after he got off the phone, he came back over here with the news, the order of which I have forgotten, but, yes, the good doc has been ill, very ill with kidney stones. He has had to cancel appointments, even one clinic. Now he is having to move his surgery appointments, and Jim's is for April 23rd! At least it will not be as early in the morning. Really, you gotta look for a siver lining somewhere in there don't you?

I must say, the possibility of him having kidney stones struck a funny chord with me, too. He got rid of four of them for me, one of them requiring multiple lithotripsy treatments. On that one, the fourth one, he said, "Since you seem to tolerate this so well, we'll try it one more time before we go after it surgically." Yeah. Since *I* tolerate it so well. Oh, ho, ho, ho!!! He had no idea. They were increasing the power to it each time on that final, stubborn stone (and big, too, I might add). All I have to say is, it is a good thing it worked that time because after all those times with the other stones, this one made me cry whenever they shot the juice to me. "Hold on. Just a little bit more," they said to me. Tears flowed, I gripped my hands into fists, they gave a bit more dilaudid . . . whew! All done! It showed they had busted it, now if they would pass. Pass it did!! So thankful was I. Dr David Gubin was always very nice, we have a good doctor-patient relationship, but I betcha anything the way he talks to his kidney stone patients from now on will be much, much different, especially those with multiple, hard to get rid of stones. Wonder how many zaps he had to have, and how powerful they were.

Well, that was the news this morning. We had done well getting ourselves all psyched up, and were beginning to actually getting started with the physical packing, especially with my gowns and jammies. I need a *sound dictionary because I need a word that makes the sound of all the air being let out of us, being near totally deflated. One of the hardest things has been waiting out the calendar, and here we were, done to the wire, and being put back on that watch again. Poor Jim. We spent all of our time talking about it during *our time* this morning. What else could we have talked about? He called Jimbo and Debbie immediately, then we got settled and did our talking. And lots of sighing. You repeat a lot of sounds and phrases at times like that, while your brain has to shift gears, and you begin to steer in another direction.

We still have to get me to my IVIG treatment next Monday. It is already overdue as we planned it to coincide with his surgery. Symptoms are beginning to appear, and I will have to pick and choose my activity carefully between now and Monday so that I will not go in with an episode on hand. We have things planned for Friday, and I will be careful between now and then. It might sound silly, frivolous, foolish, maybe even illogical to be making plans to get out to get my hair washed (YOU try going without washing your hair, and see what it is like!), and then driving over to Jonesboro to Turtlecreek Mall and a place to eat, the first of which is to mainly get out of the house! Our mode of living suits us. That means it does not bother us not being active, on the go, and all, but we do need to get out occasionally. It is also good for depression, and just a general lift-me-up-er. Jim found the value of this that Sunday night we went to Olmpia's when Ashley and Ashton were here. He felt so tired and sluggish, his depressive feelings dragging him down, making it hard for him to get up and get out (he had Ashton and me to get into the car), but after being out with everyone, haviing a simple good time around the table, he felt much better, with a return of some of his energy.

Women already knew this, though, didn't they. It is called Shopping! Just get me past Francesca's, and maybe I can make it. That is one neat store, and it is just past Barnes and Noble, the rest of the mall on beyond that. Note that those two places are not stores of necessary items, but things one might want, or just tlike to have, and oh, my, I can always find something I like in there. Now see. This is enough to look forward to to help the MG symptoms, and maybe an episode curbed. I believe there is a certain amount of psychological effect upon Myasthenia Gravis. I haven't found anything scientific, only anecdotal and personal is all. It is often hard for me to propel myself, but with the help of someone else helping me getting dressed, I can get out for a while in my wheel chair, acting, behaving like a half-way normal person.for a while. I may crash once back home, or maybe not, but it would have been a good experience for me regardless.

So, watch out Friday! Billie's going to be set loose on the streets, highways, and by-ways, destination Jonesboro, fifty miles to the West. Look out Turtlecreek Mall! I think it is time now to check out the checking account balance.

Striving for a world without Myasthenia Gravis

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