Friday, December 28, 2007

Generally speaking . . . .

. . . . I was right ~ it is hard!

Yep. This is proving to be as hard to do as I anticipated. In additi on to finding it difficult to do a diary, log, whatever you want to call it, where I am talking about my day, how I feel, what all is happening, and how MG is affecting me, my body just does not cooperate with my mind, ideas, goals, etc. My mind is all organized with thoughts and plans...... excitement! I'll be sitting here just working away, and the next thing I know........ oh, golly gee! Look at that clock!! It has sprouted automation (wings ?), taken off, and whizzed on away by several hours. WHERE did that time go? I was not sleepy. That was not the problem. I'm still sitting up rimrod straight, mouse still in my hand, head drooping...... oooooh, even one of the babies (furry kind) have jumped up on my bed with me; that did not even wake me. This happens so frequently, and it seems so irrational because there *seems* to be no explanation for it. Another MG feature….. explanations not necessarily available. What was that I said the other day about time? Getting used to talking about myself is going to take some time getting used to doing, also, especially when I have to say I feel bad or hurt.

*This* is Myasthenia Gravis

First a very good site I found just a couple of days ago indirectly a result of my blog, and I want to share it with you because she does such an excellent job of explaining Myasthenia Gravis, better than I can do without out and out copying or plagiarizing! It is Connies Corner ~ Myasthenia Gravis So very unpredictable, in soooo many different ways. Fine one moment, MG symptoms the next, in varying degrees ranging as far apart as from the North to South poles, often with no seemingly rhyme or reason. Each of us is different. We’ve been likened to snowflakes. ;-) Just about as fragile as one, too. *s* (Could I but walk, I’d like to see me, delicately fragile, dancing through the air like a falling snowflake…… oh, how dainty this 65 year old woman ;-) LOL Stress, above all things, then infection can, and will bring on an episode that might last for days to months (especially did so for me last February following an upper respiratory infection). How would you like to live with someone who might have a myasthenia crisis, landing them in ICU, dependent on a machine to breathe for them in just a matter of few minutes? THAT is the pressure of an MG caretaker. Mine is my husband Jim. Twenty-four hours a day. I am totally dependent upon him; he is totally responsible for me. He is 68, I am 65. A subject for later. He is special. I am fortunate. We are one.

So, what about me?

I've really not given you too many specifics. *Not* because I haven't wanted to, but because I keep falling asleep, or I have been too exhausted..... not tired..... exhausted. I slept many hours in the hospital with my computer on my lap where I had fallen asleep while trying to be so diligent about this endeavor. As you see, I didn’t get very far. I honestly thought that once I started, that my enthusiasm would override whatever it is that sends me off to that land of a beautiful sleep that, once there, I do not want to leave it as I awaken. Didn’t happen. 

I have Generalized Myasthenia Gravis, meaning my voluntary muscles, those controlled by nerve impulses that arise in the brain are involved..... arms, legs, breathing. In addition to these muscles, there is also ocular involvement or Ptosis. My facial muscles are involved. I think they have been helped with this last IVIg treatment. Can we count this as one step accomplished on the Road to Remission? My eyes and mouth move much better than they have in several years. It's wonderful to smile, grin, laugh, and know it is not only within, but is showing outwardly. I'd been going for years not knowing that I looked like a flat faced grouch! Had a frozen face. I'm driving Jim crazy now acting silly rolling my eyes around, all kinds of ways, and rather quickly I might add. [ Clapping ], and cannot wait to show the doctors next time, as *that* is the one thing they check over and over LOL Doesn't sound like much to you, but until now, not only was the lid movement limited, but the eye movement as well was severely limited.

It is not all Myasthenia Gravis

Everything I am dealing with is not Myasthenia Gravis. I also have lupus, Multiple Connective Tissue Disease, rheumatoid arthritis, Cushing’s syndrome, Sjogren’s syndrome, hypothyroidism, mitral valve prolapse with tachycardia, diabetes (using insulin pump), severe diabetic polyneuropathy (combined with the MG is what keeps me from walking), osteoporosis, and glaucoma. I also have to take a large daily dose of Prednisone, and while it is one of the best drugs for MG, it *does* plays havoc with my body with all of its side effects, and I have been on it for some degree since the early 90s. I don’t know why, but I envision my body as bread dough in a mixing bowl, and the beater constantly kneading it (you know, that hook-like creature slowly turning the dough (I didn’t have a bread machine….. just used my hands and the floured counter-top to knead – that was about 25 to 30 years ago ;-)). Side effects from this drug and others give me almost as much to cope with as the disease itself, but it is necessary for me to have the drugs to live. Live. My Life. Exactly of what does my life consist? I *lounge* in a hospital bed in my living room. Blew my home decorating with my new custom made living room suit to bits! LOL!!

The *eyes* have it!

Oh, yes, they do! A drooping of one or both eyelids, Ptosis, blurred or double vision Diplopia
due to weakness of the muscles that control eye movements. An avid reader, I had to put my reading on the back burner a couple of years ago. But I taped my eyelids open when I just couldn't stand it any longer and had to read a book. Funnieeeeeee!!!! Or….. I'd tape the right eye shut, and just hold the left eye open with my left hand. Read several books that way. I have monovision with the near vision in my left eye, so that worked pretty good, until my left arm became more affected by the MG, and would get tired of holding my eye open. !). hehehe One of my doctors I have during my IVIg treatments thought I was so funny, and mimicked me to his nurse practitioner. I went to my neurologist's appointment one time with my eyes taped open for him to see what I had to do to be able to see even half way good. After a while, the eye lids get a bit sore, though, if you're not careful and use the right kind of tape.

This was most likely from the over, and misuse of the arm (the left arm was also the last of the muscle groups to go, the right one having been affected several years before as I could hardly write more than a few letters, meaning I needed someone to sign checks and receipts for me, playing the piano was out because of my arms and my weak back muscles resulting in an “on a scale from 1 to 10” pain level being upper moderate, and then weakness of the arms for a couple of days. I had to get an electric toothbrush, no combing my hair beyond a few strokes, and I was prone to drop everything.

FOR TRADE: Two legs

The peripheral neuropathy most likely came before the MG, because I had abnormal Nerve conduction study and Electromyography (emg) tests years before knowingly being aware of any sign(s) of MG. I guess the first symptoms were an inability to stand for more than a few minutes, and a sudden change in my ability to climb stairs. I went from being able to take them two at a time, to having to crawl up them on my hands and knees in a short period of time. As time went by, the amount of time I was able to stand became less and less. For instance, getting something from the refrigerator became a very painful chore! Now, when getting your food becomes a chore, you have problems!!! LOL In that case, not only is it the standing, but it is also the use of the arms to reach inside the refrigerator to get the item which puts a strain on the back, whereas with a normally working person, all the nerves, receptors, etc., would work together, and you’d never know of any one of them working separately

I first started out with a cane for balance when I walked, and then a manual wheel chair. As my arms grew weaker and weaker, and I was unable to propel myself, requiring someone to be there to push me at all times, we applied for, and were approved for an automated chair. One word. Freedom! I’m sure it wasn’t, but it seemed like it was the best thing that ever happened to Jim and me. Finally, we could be apart. I didn’t have to have him right there every moment as I shopped, and he didn’t have to push the wheel chair every turn of the wheel. I had no idea I would come to need the chair as much as I do, for I can walk only a few steps now, and can stand no longer than a minute or two before my legs start yelling out, “Enough!” After a few of the IVIg treatments my leg strength has been stronger, but it is temporary.

I do not understand everything, but I do know some have found remission. They have, at one time been on the respirator, and are today, functioning normally, most still taking some form of medication, usually Mestinon, but *that* would be fine with me to just be taking Mestinon and being able to lead a near normal life. At least up, walking around, not needing the wheel chair! THAT is my Road to Remission. How far will I make it down that road? No way to know. I just have to take it one day at a time, one step at a time, and here I am doing just that, with an invitation to anyone who wants to join in the walk.

I get discouraged. Yesterday (the 26th) was a bad day. I was so depressed. This Christmas was so totally unlike any Christmas I have ever had in my 65 years. It was so lonely. Well, phooey, here come the tears again. Thought they were finished. Jim was so sweet yesterday. He was very in tune with my feelings over the past week or more. Even gave me my Christmas present early because he felt it would do me some good. It did. I’d cry a while, then we’d laugh a while. But I do think my anti-depressant needs some changes. What? I do not know, but I know something’s gotta give. I’m due to go back to the doctor on the 7th, and I’ll be sure that is one of the things we discuss. I’ve been telling them how depressed I feel, but they don’t think so.

I brought it up, but did not elaborate, about Jim giving me a Christmas present. He brought a WOW to my mouth, and a smile to my now loosened facial muscles to express how I felt inside. First a diamond necklace that looks like a treble cleft sign (I'm the pianist who can't play anymore). Beautiful. Then a necklace that had been my mother’s, but needed a chain. He got that all restored for me. Heartwarming. And then, a diamond ring, all of his being. Loving. You have to know Jim, and his gift buying, giving. *This* was a big deal for him! Not any monetary value, but his gesture, and ……… well, just everything. It didn’t have anything really to do with Christmas exactly, except the timing. He did it for me. He did it because of his love for me. He saw me hurting over the past few weeks, maybe months, and he did it to try to bring a bit of brightness, bit of sunshine in my life. It did! That is why he gave it to me a day early. And thanks to the IVIg, *s* I had facial muscles that responded to the love and joy and happiness I felt inside for him.

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