Wednesday, September 29, 2010

Update Three Months After

Yesterday I took the last pill that I brought back from Poland so it feels like a good time to post an update. I continue to ebb and flow, and thankfully there aren’t any major changes in my health. My day-to-day activities still include gentle yoga, swimming, staying current on CCSVI info and a small assortment of other things.

However, my energy occasionally lets me do two hefty activities in one day. Recently I spoke to a group of yoga teachers about MS and how to instruct students with the disease---the first time I presented to a group of certified teachers! The event went well and I learned from the experience (and so did the others). Fortunately or unfortunately, that same day a workshop was being offered by a different studio on how to teach yoga to students with disabilities---and the presenter had asked me to attend so enrollees could practice on me.

If this combination of events had occurred prior to my procedure in Poland I would have had to choose between the two but now, with the help of a long nap after event #1, I was able to attend event #2. Mind you, I didn’t do much at event #2 except show up---but having enough energy for even that was an improvement over what I could do pre-Poland. The next day I had to nap more to recharge batteries (I didn’t bounce back quickly), but I really hope this energy lasts because it’s nice to participate in life more.

My heat insensitivity remains the same---we’re experiencing a heat wave in California right now and I’m limited to where I can go. If the temperature is over 75degrees I need a fan to keep me cool, and that’s just a temporary solution. Air conditioning keeps my body temperature low enough so I’ve been staying at home most afternoons with the AC on. My misguided (and wacked-out) thermo-regulation seems to be tougher to fix than other symptoms!

Recently I asked for a second opinion on the venography images from the procedure in Poland. This feels like a big step for me. I asked an IR doctor who replied that he could see a persistent problem in the left Internal Jugular even after balloon angioplasty. Yeow.

Next he said that the Azygous looked “suspicious,” in contrast to the doc in Poland who said the Azygous looked fine. I somehow know that I was undertreated (don’t ask me to explain how I know that) but I’m moving cautiously right now in considering more treatment.

I’m not sure that I know enough about the risks and benefits of a second procedure to make an informed decision yet. Plus, I’m not eager to be a guinea-pig again so soon. So I’m going to spend a bit of time reading what I can find on line about second procedures, asking friends about it, and generally mulling it over.

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