Sunday, December 7, 2008

Are the IVIG side effects worth the treatments?

A resounding YES!

The fact that I am doing this is evidence within itself.

The fact that I have the energy to become involved with outside interests such as Coleman Larson and Childhood Cancer is another.

The fact that I have the energy to email some again is reason enough.

There again, fact that I have the energy to join up with Twitter and Facebook is reason enough, though it does tire me to *talk* to people in their respective groups. :::sigh::: The fact that I am doing this increasingly is another BIG reason!

See what I mean? None of these are all of the time, and actually doing them weakens me.

Yes, there have been ups and down within the past year, with mostly many ups these past six months since we have been pushing the IVIG infusion rate to eight hours, and now to six hours last month. I'd really like for them to analyze that as to why I started to do MUCH better whenever I started taking it at a faster rate. The headaches were worse, duration was shorter but more severe. Let's see, the last one started three weeks ago Monday, and the side effects are definitely waning, and I can see the improvement in the way I am feeling.

IF I could walk, I *think* I could live somewhat normally, AND they are feeling that my impaired walking is possibly due to the ruptured disk, and NOT the myasthenia. None of this is going to get definite answers until after the back surgery, and I am very hopeful for some improvement following that, as I think Dr. Cauli is, too. As Dr. Campbell said, they normally would not recommend surgery on someone my age, with my multiple physical problems, and with the danger of the MG added to the pot unless they felt it would make a significant difference.

So exactly what are they looking at improving? Bladder and bowel functions, neck and spinal pain, arm pain and weakness, and to me, the best of all..... leg pain and weakness with the hope of at least walking somewhat better once again. Wow! If I were able to be up and about within the house, it would be a dream come true.

It would mean reaching down that road to remission!! Remission meaning to me reaching toward a life of normalcy, normalcy being able to function in the world as most people do..... walking and doing most things for themselves. Ha! Getting up and getting a drink for themselves rather than needing to have someone else to do it for them. Maybe even preparing a simple meal for themselves. Oh, wowie! Would that not be grand. I might could even clean my house!! Listen to me! I go bananas thinking of the possibilities. At one time I thought I never wanted to have a surgery of any kind ever again, but now I am thinking of it differently. At one time - yesterday - I even thought I'd never walk again. What? Maybe. The possibility is in the air now. Am I prepared to be disappoined since the surgery is not a 100% guaranteed. Well, Jim's cancer surgery was not guaranteed either. No surgery is guaranteed. And surely Brenda's two surgeries were not guaranteed, and now her CTs say she is Cancer Free! Both of them. Everything points to HOPE.

My best Christmas present probably after Christmas, I guess, would be the successful back surgery. I'd like to have it just after my IVIG coming up this month. That's just me without considering others. Ummm maybe I should put a poll up here. I'll think about it. Just to see what others think.

I've got to run along now and get Coleman's update posted. Make-A-Wish came to visit him last week! Wait until you see!!!

Coleman in front

Michelle & Lori of Make-A-Wish Foundation
(I don't know which is which ;-)

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