Tuesday, June 1, 2010

Change is Hard

Change is hard. Especially when I don’t know what the change will be like. I’m due to go to Poland for CCSVI testing and possible treatment and I keep wondering if it will (a) improve my health, (b) make it worse, or (c) have absolutely no effect at all.

Prior to getting an appointment in Poland I tried to go local in order to help more folks with MS get treatment nearby. I set up an appointment with a doc about 180 miles away who agreed to give me a “second opinion” on my symptoms. That 180 mile journey was considered local only because practically no one else in the area is doing testing or procedures for CCSVI. I planned on asking him to see if my veins looked problematic.

When he cancelled on me I had to rethink my approach. I called Stanford University Hospital to get information on the clinical trial due to happen there. My name had been put on their long waiting list and I hadn’t heard from them for some time, so I requested a status update. Although the trial was due to start in the coming months, the doctor was not doing CCSVI treatments for anyone outside of the trial, and selected patients would be notified when they were chosen.

Okay, it was time to reassess my strategy of staying close to home. Was I really helping anyone by staying in ill health without trying my best to improve? “No,” was my answer to myself. It would be wiser to put my effort toward getting the best treatment that I could (and that I could get an appointment for), and afterwards help other people.

Now I’m planning for a trip to Poland to be tested and perhaps treated for vein blockages! Up to six months ago I had become resigned to living a life of gradual downhill progress until I heard about CCSVI. Nothing may change when I’m in Poland but at least I’ll have tried to improve my situation. As a friend said to me: It helps to take control over the treatment of illness if only to boost a sense of empowerment. It has taken me weeks to write a few paragraphs about what I’m going through, and now that I’ve published this to my blog it seems like my friend was right. Regardless of the outcome I’m not stuck in wondering “What if I had…”

1 comment:

  1. Thanks for sharing your experience so far.Good luck in Poland.