Monday, August 18, 2008

Bumps in the road, the Road to Remission

I can tell already that coming down on the prednisone is going to be a bumpy road. I have been on it for at least ten years, with about 30 mg per day being my high dosage I would go to, and never lower than 15 mg, usually 20 mg being the lowest I could go when the symptoms would emerge again, but between 15 mg and 20 mg being the juggling arena, vying for the point at which I could tolerate it, at that particular dosing level before settling on the best, desired, most effective dose.

Early on, we did not know precisely what we were dealing with in treating me, only that it was another autoimmune problem to add to the others, therefore did not know I was needing the prednisone precisely for the Myasthenia Gravis, and we would stop it whenever the symptoms improved, trying to spare me the prednisone side effects, when in actuality, what I was needing was to remain on it. The prednisone side effects had already crept upon me, though; it was too late to forestall that. The diabetes with diabetic complications were already upon me in no less than the form of severe peripheral and autonomic neuropathy. This was in the late '90s and early 2000s, bursting between 2000 to 2002 when the diabetes showed up unexpectedly.

When my diagnosis by Dr. Connie Smith, ophthalmologist, was confirmed with the ptosis, Dr. Franklin already had me on the correct dosage for MG. With the addition of the Mestinon, I was able to see some improvements in some areas (with even the lowest dosage, I excitedly told my neurologist, Dr. Saeed that I could write for the first time in several years; Ashley had been writing checks and signing my name for me, though my eyesight was still impaired - I went into an appointment with him with my eyes taped open to show him how I had to do it to be able to see, especially to see to read), until February '07 when I had a viral infection and experienced an MG crisis. However, not being really knowledgeable of MG, my focus was more on the diabetes, and my continued diabetic lows, one life-threatening, rather than the total weakness brought on by the MG, with the severe swallowing and breathing problems where I was able to only get down sips at a time.

It was in May after this, that the IVIGs were started, and here we are, ever since then, some 16 months later. Next Sunday, the 24th, I will go back to Jonesboro to the infusion center for my second round of infusions there. I have ambivalent feelings still, about that. I guess I can relate it to the times we changed stations when Jim was in the Air Force. A part of me would be excited, ready to try out the new and different, but there was that part of me that wanted to stay where I was. It had that "comfortable as an old shoe" feeling. Wonder if I was beginning to look like one, too. That would have been a horrible thing, being the shoe freak that I am!

I've rambled on over these few stones in the road. Think it helps sometimes to look at where I have come from, and where I am - most days - now. Sometimes I wonder if I am as far along as I think I am for what I try to do. I have myself in a mess right now around my area because I started getting it a bit more liveable for me, a bit more doable, workable. . . should I say a bit more like normal? That is what I want. Just to move my legs around because they are the basis for so much movement, no matter how small. Just to move upwards in the bed is a major undertaking without the legs to power the rest of the body. Sometimes I have to ask Jim to help me move my booty, lift my booty upward in the bed. Well, phooey!! Not a time to lament! At least I am trying not to, anyway. It gets hard sometimes, and I hate these med-change-tears, so today I need to try hard to do what I can do about it. What I can't, well . . . well, let's just go for now, not even the whole day because with MG your day can change within the hour.

I'll see you tomorrow. I think I feel like taking the day off, so you go and take some play time for yourself, too. Ha! Well, you take it whether I do or not if that is what you are wanting to do. But, if you do not hear from me, do not worry for I'm trying to have some play, have fun time.

Baubles, bangles, and beads . . . a little eye shadow, and lipstick, too, it just makes it you, Kaitlyn Nicole! What a snazzy two year old! Wish I could play with you! Thank you, Jennifer, for sending a couple of great-grandparents this picture of the Princess!

Striving for a world without Myasthenia Gravis

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