Last week Sara, my Mom and I made another trip to Mayo Clinic to see if the Methylprednisolone steroid treatments have improved the frequency of seizures (which we know it really hadn't), and if the abnormal antibody in my blood had been corrected in any way... again it hadn't. Our doctors used some very harsh words, like "failure" when describing the treatments which left us devastated.
At the very end of our meetings we reiterated that my mood and personality had greatly improved and if this was the case then it wasn't a failure at all. I explained to Sara that if I had to live the rest of my life with a seizure disorder, but as me, without the demons floating around in my head... then there would be some quality of life.
After we mentioned the personality change back to normal, the doctor ordered another neuo-pyschological test to see if that is the case. We couldn't get an appointment for that until June 3rd, but they said they'd call if anything opened... it did... this Thursday at 12:45pm. Now Sara and I are scrambling to pack and get up there tomorrow, so we both have time to settle before the test. These tests are very intense so I need to be in a good place mentally before they can begin and I can prove to them that there have been very noticeable changes.
After the test I will start a 12 week Intravenous Immunoglobulin (IVIg) trial. It's basically a blood plasma treatment from donor blood. Because this is from donor blood, I'd like to encourage those reading this to give blood or plasma in my behalf. Someday, I'll be able to give back, but for now I'm looking to people like you to get healthy. Thank you.
Right now it's so hot in our apartment and my mind is racing so I'm awake at 4:00am. I'm at the table in our dark kitchen writing and thinking, nervous and trying to find that peaceful place we all wish to find in our lives.
Wednesday, May 15, 2013
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