Saturday, March 8, 2008

A sunshine day all around

When I think of a *sunshine* day, the elusive orange comes to mind for the text color, but I just have to be this honorable and upfront with you. No way could I stand to look at this color for more than just this sliver.

I feel like multicolor because that represents how I feel today. Darling Daughter Debbie, the Original Baby, asked in a text if I had a good day today, and I was soooo happy to say that I had. She had, too. Therefore, this softer shade of blue seemed to fit the bill but it sure is not a reflection of a blue mood. Granddaughter Jennifer sent a text that she had sixteen (16) inches of the white beauty (at least while it is falling) in Dayton. Then I read on Yahoo about the record setting falls in Ohio. Oh, my goodness, doesn't that keep the memories alive today. Jim went out and took some more pictures today, the same views but in the daylight. They show the snow everywhere, but there was something about the nighttime pictures that I really liked. Serene? Calm? Peaceful?

One of the funniest memories was when we lived in Huber Heights, Dayton. We had just returned from Memphis. With three hungry mouths to feed in the morning, we needed some bread and milk in the house. I picture three little chirping baby birds with their beaks all turned upwards for the mama bird to feed them, but these baby birds would be getting something that had to do with bread and milk, and not worms! They were not old enough to go after their own worms, so they would have to take whatever mama bird put before them in the morning. Mama bird does not recall anything ever being turned down at breakfast.

To get bread and milk, there was a grocery store in a large shopping center, where everything else was closed, and the parking lot was empty except for a lone little Volkswagen bug which was most likely being driven by some teenagers. They were hitting the brake, making the car spin, and do other crazy things all around that empty parking lot, surely having a good time.

I cannot remember which trip home from Memphis to Dayton it was - we used to alternate Christmas in Dayton and Memphis - but we began our trip home from Memphis in shirt sleeves, and gradually had to add warmer clothing each mile of the way to Dayton as we went. It was a New Year's trip, and being 500 miles, we were finding it hard to find restaurants open along the way, and for some reason, there was a mewing sound like for food, something like little kittens coming from the back of the van. We finally did find an open place in Kentucky, and was it ever a welcomed sight for this family of five! Naturally, they had not had many customers, and they were happy to see us, and provided us with plenty of personal service.

As I have good, fun snow memories, I also have *good memories* of the past couple of days. In writing a couple of friends to bring them up to date on Jim and me, I told them to appreciate their good healthy days. We went to school together, and are the same age, so subject to the same aging process, and beginning health problems, of which they, too, have already been faced. It is just when these things stop you from normal, daily activities that you really appreciate them. It baffles me as to how long one can stand to be bedridden, wheel chair bound. Surely I am living one day at a time, but to think of never living outside of this bed, well . . . I guess that is why I am here, believing my doctor and I are going to find a way out of this situation sooner or later (adding Cellcept maybe?). The IVIGs are showing progress, but they just do not last long at all. Talk about an itch. I am itching to get up from here in the worst way imaginable. I looked up at Jim this morning and said I wanted up from this bed, and he said just get up and go running around.

I heard from one woman in the MGnet group who had been in such a situation as I am in now, and is in full remission. THAT is inconceivable to me at this moment, especially after the incident at the dentist office. However, I have stated earlier, in the blog, but would be hard to find, that I have much more than Myasthenia Gravis at stake to overcome before I am up from here, and living a so-called normal life. With diabetes, hard to control because of the prednisone, diabetic neuropathy, and multiple connective tissue diseases, there are just so many things for the doctors to get going just right. As Dr. Schnapp said, when the Mayo Clinic was being considered for me, I would be atypical, and a problem for them, as well. I put them on the back burner for now, but who knows. These baby steps sure do seem awfully small sometimes. Ironic today's family picture is Ashton who is not crawling yet, much less walking, but will be doing both soon. Maybe I need to learn from him, but he doesn't' know that walking is out there. Or does he? Hmmm, or is all he knows just what he can do today? Does he see everyone around him walking? But the babies do have a yearning to do more, or else they wouldn't make the astounding progress they do in that first year of life. *Something* propells them on. What is it? Does he see everyone around him walking? Those comments and questions are hodge podge as they've come to mind, and may make sense or not, but I think the concept is there for you to think about.

At the moment, without comparisons, I think what makes a day stand out is the strength and energy I have during a day. Being able to move my legs in the bed, while the majority of the time they just lay there immovable. They test them whenever I'm in the hospital to see how far I can lift them. Almost none at all, but maybe an inch toward the end of the treatment. I fear for muscle atrophy. What is it exactly, and can I do anything about it once I have it. Where does the diabetic neuropathy come in to play - looking back, maybe it started playing games with me quite a few (many?) years ago - and where does uncontrolled blood glucose levels do their damage on top of the MG, plus the rheumatoid arthritis. These are some of the things that Jim and I take into consideration whenever we thing of having the MG in remission. Look at what all is left to deal with. Oh, and Lupus, too.

So. To me, just having a day where I can do some correspondence, web searching, easy upper body movement, and facial looseness is a good day for me. A time of good interaction with Jim is a must. Today I have slept a lot purposely again because I want to build up a good base from which to live until the 19gh. Naw, it won't last until then, but maybe it will give me some packing time. Packing time will take more this time because I have to get ready to go to Debbie's house upon discharge Ooooo too many changes! Changes ----->Stress------>MG episode. What I need is a project to get/be involved with. I'll have to run around and see what all is going on in the blog world right now. With all the sleep I've had the last couple of days, I probably will do so tonight.

Third great-great grandchild
Ashton Sears Moore
"If I can help somebody as I pass along,
Then my living will not be in vain."

Striving for a world without Myasthenia Gravis

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