Mayo-Day Two 2008

Mayo-Day 2
Posted Apr 7, 2009 8:59pm

Well, this will be quick tonight, as I am extremely exhausted. I had a follow up this morning with my "quarterback", Dr. Petersen. We talked about lab results, nothing major there...we pretty much expected what we heard, although we have not heard back from the Antiphospholipid Antibody Syndrome (APLAS) test, the rheumatologist expects it to be positive. That doesn't mean much either because it has to be positive a certain number of times in a certain number of months. The docs up here are still scrounging around in the hospital records and notes as well as waiting for more blood work and test results to come in. I have a Bone Density Screening and MRI and another two doctors appointments the next two days.

There were two somewhat alarming things that I learned today from Dr. Y.

#1 After he examined me and felt my joints and muscles around them he has decided there is a distinct possibility that I have Fibromyalgia. He said when people have prolonged hospitalizations and especially those who have spent time in ICU, (of course both apply to me)at some point something happens in the way certain things are firing in brain, and cause pain. This could explain all of the pain I have been having that does not seem to be related to other problems. I am constantly achy and my joints hurt. So that COULD be an answer to that. NOT like I need another diagnosis, but if it is, it is.

#2 Dr. Y. is not all that sure that chemo was the answer as a treatment to whatever I have. But, having said that he is not sure what he would have done either. (I think this is because they are still gathering info.) It scares me and somewhat upsets me to think I am going through chemo for no reason, but if it has helped in any way to heal my brain lesions then it was a good choice.

On a lighter note, Mom and I got to explore Mayo some more. It is really neat, we went to more shops and a museum. There is art all over the place here. When we left we walked back to the hotel outside. I was SO tired, but I needed some fresh air. We went to a jewelery store and got a Pandora charm to commemorate our trip to the Clinic. We also went into the coolest store. It is called Tangerine, and I plan on going again tomorrow. We are also going to an underground antique mall tomorrow that is right across the street from us. I also plan to take some pictures the next three days. I have a lot of really neat ideas and things to take pictures of.

I hope everyone is doing well. We are okay, have good mother/daughter time and learning some things about me. If anyone has questions feel free to ask. Please keep Pop in our prayers, he is not doing so well. He misses his other half, and is getting forgetful.

Love you all,
Kinsley