I told you so!

It did not surprise many in my family when I was diagnosed with a rare disease.  Don't get me wrong; they were horrified at the diagnosis of Hashimoto's Encephalopathy or HE.  It is just that as a kid, I stayed sick.  It became a joke in the family about which illness I would have during the holidays.  There were many Thanksgivings spent on the couch.  One year I had scarlet fever and the year my sister got married, I had Mono, strep throat, an upper respiratory infection, and my liver enzymes were elevated.  They were concerned my spleen would rupture, so I was put on bed rest from Thanksgiving through New Years.  One thing we noticed though, was fatigue was a huge factor.  If I stayed up late, I would wake up with a sore throat the next morning.  To say the least, my teen years were a lot of fun!  lol  As I would walk out the door with my friends or a date, my mother would remind me, "You know what happens when you stay out too late!"  I would wake up the next morning and be handed my orange juice with a big healthy, "I told you so!"  haha

If you have read my last couple of blogs, you saw my frustration with the fact that the Cell-Cept (immuno suppressive drug) was no longer enough to control the symptoms.  Clonazapam was added to stop the convulsions, then Gabapentin added later when the other two were no longer enough.  My symptoms continued to progress, so we made the decision to remove the immuno suppressive drugs.  Our theory was that if it was no longer enough to control the symptoms, then why put myself at high risk for infection and the other side effects. 

I rapidly declined and began to bounce between episodes of convulsions and tremors, then experience episodes of stroke-like numbness.  The only answer was to increase my medication to a higher level and go to bed.  As a mother, that was not a good solution for me.  I wanted to be proactive and not just curl up in the fetal position. 

After a whole community of prayers, I received a call last Tuesday from my Immunologist who had consulted my other specialists and decided to re-start immuno suppressive therapy with a stronger medication.  Of course, I will have to wait until I clear out the sinus infection I came down with after New Years, but it is a start.  My blood count will need to be monitored closely with this medicine, but I feel better knowing that we are taking steps to treat and not just mask the symptoms.