Monday, July 7, 2008

One week after the IVIG

I notice that according to my recent keyword activity log that what has brought people to my site the most has been IVIG, IVIG side effects, and living with myasthenia gravis. Looking at "living with myasthenia gravis" this morning, it is nearing noon, and I have had breakfast, and Jim has given me my bath. Lying here reading blogs, and other internet activity has also been a part of my morning. I took 16 mg of mestinon early, then took the rest of my meds, including the marinol, later. Meds are not done for the day. Marinol will be due at lunch, and then there will be nighttime meds. I am having some choking today, so I will need to pay close attention to that, and taking the mestinon. Focusing on my eyesight is not the only thing to consider. I must keep the chewing, swallowing, etc., in check, too.

Exactly one week past the completion of the IVIG, I think I can say things are still moving along at a better than before pace with it. My legs are still a no-go, actually worse, and there is reason to believe they are affected, not only by the MG, but also by neuropathy, medication, or questionable mini strokes. It could be one or all of the above, but we cannot go to finding out until we get the MG under control. I have had to start using the bedside potty chair because I cannot make it to the bathroom about ten feet away.

Not only do I not walk at all now, but I also do not stand. I am in about a two-step area from my bed. Bed to bedside potty. Steps to my chair. Two steps to my rocking chair. Someone needs to right there, though, usually holding on, or me holding on to something at hand, but I have read this is not good. For two steps, and knowing what I am using to brace myself, I don't think it is a problem here. To put it in perspective, I tend to be a risk taker, and in the past would have had no trouble risking a few steps because I felt I knew "I can do it," and would not push myself too far. I knew the warning feelings. Well, that is where I am now. My legs scare me, and I will not take a chance with them, and if they scare me, then it is time for me to pay attention to them, listen to them. It is important to understand that I can get better, go into remission, and still not walk. Actually, that is when Dr. Saeed said we would begin to work on the legs.

When it was evident last week that my legs are kaput, future unknown, I cried. I cried hard. Several times. Getting into bed is the biggest challenge. We get excited whenever I get my booty to the middle of the bed, and Jim puts my legs up on the bed, giving them a bottle top twist, twisting them until my body lines up in the bed. Actually, my horizontal action is fairly okay. It depends a lot on my arms, and how much support they can give to allow the lower body to move. I've got to get to back to laughing about it more.

I just felt like shouting this week as it seemed we had a better hold on the IVIG side effects. We kept the drip going at 12.5 cc/hr for five days. Slow, yes. Less neck pain and headache, yes! There was still lower leg, ankle, and foot swelling which is still evident today, but much better. It should be back to normal soon. Ha! Just in time maybe for the next infusion at the infusion center.

This has been a good day for me. I hope it has been for you, too.

Baby Ashton's eyes

Striving for a world without Myasthenia Gravis

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