Thursday, April 24, 2008

"Oh, there's no place like home . . .

. . . for the holidays." Okay, so it may not be a holiday, but there sure is no place like home after ten days away off in the hospital. Granted, the rocking 3rd floor, St. Francis Hospital-Bartlett, is just about second home to me, it really has been good to get back to my home, to my bed, if only just to spend the night, then turn around, make the trip back to Memphis the next morning to see the endocrinologist for a diabetes appointment.

All the traveling was okay, though, because we got some good information on beginning to get my diabetes back under control - hopefully. We'll start today with Cream of Wheat for breakfast. Backtracking, though, after that appointment, I was so totally exhausted (so I thought), that I wanted absolutely nothing to do but to go straight home. That is until we started to talking about what, where, when to eat supper. Hmmm, it was right at 5:00 p.m., 7:00 by the time we'd get home; I'd not had lunch proper, so Jim thought we ought to go on and eat there, and I cannot believe he had the audacity to suggest Abuelo's. Me? Eat at Abuelo's? As tired as I was? I just cannot believe he'd suggest such a thing!! How fast could we get there??? Ugh.... oooh, what food! Guacamole on lettuce. Vegetable fajitas. Only one tortilla. . . just came from the diabetes clinic remember. New regimen. Iced tea. NO dessert. A nice new waiter, Andrew (No picture).

We missed Brett because I got his name wrong when we went in. *I* asked for Keith, or Kevin. Where in the world did I come up with those names. Could it be that Kevin was one of the last ones who moved an IV site was named Kevin and it lasted two whole days! Phenomenal! Evidently part of me had not completely left the hospital yet.

I brought most of my entree home with me; I really was too tired too eat, and that is one of my MG rules for choking, do not eat when tired, so a to-go box was in order. Nothing, however, has been said about having Starbucks and my square wave bolus was good enough to fit it, so just wind along the mall parking lot, confuse Billie when Jim starts to circle the building to place the order (for me, he doesn't drink them ;), YummmY, a venti mocha latte! This writing has been sitting, waiting on me to finish, so I think at this point, I will go ahead and send it. Whatever is left, I'll fit it in with today.

With coming home Wednesday, then going back Thursday, I've been falling,
falling, falling, off to sleep, and not accomplishing anything at all. I *do* want to say that it appears that this treatment has yielded the best results of any so far MG-wise (think I have said that before, and if so, that is good), factoring in the headache side effects. They are just part and parcel of the deal that I might have to put up with either some or all the time. To feel this good, I'll gladly deal with the pain in the head!! My endocrinologist also gave me (that's Jim, also . . . let's don't leave him out; it sometimes takes both of us for one good memory!) good information yesterday about the portacath. I think I have so many doctors that maybe each one thought the other one was orchestrating the affair, when in reality no one was. I knew my good doctor, Dr. Latif, would bring it altogether for me.

We spent so much time with my PCP last month about the previous month's hospital fiasco, we did not go into detail about the portacath, just that he expressed the same opinion that it was time to go for it now. For me, that was all I needed from him, the hospital team would be handling the surgery (though I wasn't aware of it being a surgical procedure at the time (duh - but too much on my mind)).

Then, I'm not sure how it got ordered once in the hospital, what with my MG and admitting neurologist Dr. Saeed, his nurse practitioner Debbie, the internist Dr. Ali, his nurse practitioner Liesl - whew! I think that is all, except for the weekend covering doctors Dr. Asaaf, and Dr. Henry (a really special doctor - "Hello, Dr. Henry!" ;). Did that confuse you? Just think how *I* feel!!

I found out while having a long visit with one doctor, Dr. Ali, that he and Saeed had spent a long time discussing my case, and plans for the future treatment. Anyway, I think each one thought I knew more than I actually did, when in reality I knew virtually nothing. I had started studying up on it, got distracted, and never got back to it. Plus, I've heard it referred to so casually so much that,
well, I guess I just thought casually of it. It was not until it was all said and done that I realized the "depth" of things, literally, and figuratively. Dr. Ali explained much to us Monday night when he talked so long with us, but I still did not get a clear picture (the headache could have been preventing everything from sinking in).

We've got a clearer understanding of it now, along with an inch and a half incision on each shoulder because the left vein was inaccessible, and Dr. Hammond had to use the right one then. Guess you could say I got two incisions (photo) for the price of one, but only one port. Ha! Ha! Laugh, that was supposed to be funny, but I know it wasn't. Enough on that now. I'm driving all over the road, and if I'm not careful, they are going to take my license here away.

I've had another nice little nap. A nice little MG recuperative nap.

This was begun Thursday night, and finished Friday, so Friday is yet to come. Think I'll make it?


Striving for a world without Myasthenia Gravis


Cara said...

Welcome back


ragdoll said...

Thank you Cara. I'm glad my course of IVIG therapy went so well this time because I am packing up and going to stay with my daughter for a few weeks following Jim's surgery this coming Wednesday, the 30th.

Ragdoll Billie with a Zing