Saturday, January 5, 2008

Bumps in the road

Okay, over in the "About Me" I said to expect the rocky road sometimes. I'm not going to call this rocky right now, just bumpy. And, Yep. This is LIFE! I didn't keep getting that better day for today after all. Such is LIFE. Such is LIFE with MG. Such is LIFE with MG with STRESS.

I did keep getting weaker last night. Didn't feel bad at all. Just losing legs and vision (this one really makes me mad because it affects my web reading/work). The legs? Eh? Didn't think much of it until making the trek to the little girl's room at the other end of my room here. Ooops! Too close a call on a fall while holding on. I went on and sought sleep then last night, knowing what is best for me.

Woke about 2:00 with the need to make the trek again. Had wobbled a short distance, and this voice out of semidarkness says, "What you doing??" Yikes! It was Jim! He was lying on the couch. I've never seen that before. LOL That was enough to make me not even have to complete my trek to the girl's room. He said, big manly voice, "Wait right there." If I'd had a stronger voice, I'd have said, "Yes, sir," but I just stood there holding on till he got to me and we waltzed the rest of the way.together. Sweet, huh? Guess we could call it "The Two O'Clock Waltz." I had to sit and rest in my rocker on the way back. It is right beside my bed, and Callie, one of our babies was curled up in it asleep. I was only going to use the outer edge of it, but Callie didn't know, and she got down. Once I was back into my bed, though, it was not long until she had reclaimed her spot.
Miss Callie Elizabeth named after Ashley

The ptosis is back today with a vengeance. Drooped lids, blurred, and a touch of double vision

So. what is going on all of a sudden? I mentioned stress earlier, so that must be a clue, huh? Yeah, I think it just might be.

Things seemed so simple when I started this blog. I was continuing my life as it had been, only openly to be able to let people learn about Myasthenia Gravis, a rare, incurable, neuromuscular disease, as I undergo treatments that we "medical team, Jim, and me" hope will lead to remission. I've referred to it as my Road to Remission. Success has been slow, and they've talked of sending me to the Mayo Clinic, but I felt I noticed some improvement recently, and wanted to give it a little more time (think I stated this earlier in the blog). There are more autoimmune diseases, and diabetes as well, making me an atypical MG patient, not responding to treatments as others might do.

The last couple of weeks have brought some drastic changes in my family, and no matter how much you try, there is going to be some stress involved. The procedure Jim had done the day I was discharged from the last IVIg was a prostate biopsy - positive - cancer. He has an appointment this coming Wednesday to find out more about it, and the choice of treatment plans.

At the same time, another immediate family member has received a cancer diagnosis. A close friend is having to be retested for prostate cancer, which he had a few years ago.

For Jim and me, it has been our experience during traumatic times to have our little pity parties, then buck up, and head forward facing the situations. That is what we will do now, only I've got to get the stress under control before I begin my treatment next week. At least that is the way I see it. Wouldn't stress hamper the working of all those little gamma globulins coursing through my veins?

I have two doctors' appointments Monday, and you bet these will be topics of discussions. Interestingly, a couple of appointments ago, my PCP and I, Jim in there with me, talked about my fear of cancer, and now here are two in my family with it. He said with all I had wrong with me, been through, and all so hard to control, I should fear cancer the most which (not meant simply) could be cut out usually, and you go on you way? ( Do not anyone misunderstand him, please.) He was just surprised at my fear, and glad we had the talk. Boy, is he going to be surprised Monday. I've already told Jim I won't be surprised if I break down in tears as we talk. I will if I still feel then as I do right now. Haven't cried, but know I could without much trouble. That's okay.

One moment at a time. This moment is for refilling my insulin pump which I forgot all about. ;-)

Striving for a world without Myasthenia Gravis

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