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Good News, Bad News....and No News

Posted Apr 21 2010 5:58pm
I would love for life to be easy. Or, since I have this disease that it be smooth or stable but it's a shape shifter or Trickster. Every time I think I understand it or have a grip on it, it changes.

The good news-I had my HIDA Scan last Thursday. My sister drove me and was able to be in the room with me. It was so nice to catch up with her. She is extremely busy so I'm grateful for any time I get to spend with either one of my sisters'. When the doctor injected the CCK I had some pretty intense nausea. My sister said my face turned white. Luckily it only lasted a couple minutes but I had to refrain from telling the doctor to stop it. I got the results today and it's normal with an ejection fraction of 49%. So that's good because it means no impending surgery. I just have to figure out what the problem is.

The bad news-I called the ALJ's office (SSDI court) to find out how long before I would find out what the judge's decision was and the woman who answered the phone told me 4-6 months. I thought for sure she misunderstood me or that I'd misunderstood her so I repeated the question. She replied as if to punish me for even asking again "4-6 months is an estimate, it could be even longer!" It's bad enough that I've already waited two friggin years now I have to wait 4-6 months just for a decision?!!!!!

Friday we'll drive in to San Francisco so I can get the brain spect scan to see what's happening up there. It will be another 2 hour test. Then the following Friday I have a jawbone scan to see if I have a hidden infection in my jawbone-another 2-3 hour test.

I'm a bit bummed out that all my energy is going towards medical tests. It's necessary but then I spend the in-between time in bed.

Needless to say this delays stem cell treatment which angers me but I'm trying to tell myself it will give me more time to do some research. I am trying to decide between two stem cell treatments. One is either Panama/Costa Rica with a 50% chance at having significant improvement. The other is elsewhere at half the cost but a big unknown in terms of success. I'll be speaking with people at both companies because I want to know what the chances are of developing cancer which runs prominently in my immediate family or the risk of brain tumors. On the other hand just having the disease increases my risk of cancer so its all a crapshoot but I want to do the stem cells before I get any worse and no longer have a choice.
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