Is Medicare going to stop me from having any more IVIGs? Right now they are refusing to pay. I am being told Obama is saying "no" to us old people. Sixty-six is old to him? Guess I should not talk about something I do not know is fact, and the only thing I know to be fact is the sudden denial of my approval for the IVIG which was doing me sooo much good, and now my myasthenia gravis is worsening. I am in the nursing home for need of physical care, and not because of loss of mental stability. Maybe I'm not as sharp as I used to be, but I'm not a has-been either. There is a lot of life left to me, and I want to use it. But, what WILL become of me without the treatments? I haven't had a chance to talk to Dr. Cauli yet, though I believe he has this information and is reviewing my options of a change in my current medication dosage. I took the extended tabs before, and that might be a necessity once again, as it was too much along with the IVIG. Taking the IVIG out of the picture might mean putting the extend tabs back in with only the one 60 mg in the morning back in.
Imuran is in the makeup whereas it was not before. That has to be considered.
But...... I just like my IVIGs. They make such a difference in how I feel. If only......
I started writing this feeling like I wanted to vent, to rant, but once writing, it was more to lament. If my eyesight gets much worse, I will be lamenting more than the IVIGs. That is making it necessary for me to have things even closer to me than before, meaning..... my.bed.is.full!! This is a whole 'nother topic of discussion. Maybe today will take care of that, though. I think maybe it will.
What this all boils down to is our eyesight is such a valuable thing. There is 20/20 vision beneath the ptosis, but with the MG this bad, a lot of good it is doing me. If you cannot see, you just cannot see regardless of the reason. It's just all so frustrating. When asked if I could have just one thing, I said it was to walk. Now that my vision is so drstically compromised, it would be hard to say my eyesight or my legs. The thing is, my eyesight is helped by the treatments whereas nothing affects my legs. Makes me wonder, is it a toss up? No, I've already learned how to live without my legs, and I need my eyes to do those things, so.....it would have to be my eyesight. It is so precious.
The way I *see* it, I need the IVIG treatments.
Friday, May 29, 2009
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