My last post was some what melancholy, but we now know that I was in the middle of an "episode." I had begun to taper off my CellCept, but it had only been a week. There is not any reason to think that this episode was triggered by anything other than stress and fatigue. We began tapering off of the CellCept because we did not have any recent evidence that it was slowing the progression or that it was helping more than it was hurting. For those who are walking a similar journey, please know that I fully support the use of CellCept. Despite all of its downsides, it was my superhero that gave me my life back...spandex and all! It allowed me to come off steroids and stay off of them.
Normally, I am able to stop an episode by hydrating and going to bed. I just wake up with what feels like a hangover...or like my brain was put in a Magic Bullet! I woke up after this last episode with left side weakness...the typical stroke-like symptoms that are seen with people who first present with HE and are not being treated. I have been on thyroid replacement for years, my immune system was still fully suppressed, and I was taking Clonazepam to help with the convulsions, and Gabapentin to calm the nerves. So, we can say that this episode is just the natural progression.
Since then, I have recovered quite well. I am down to a 1/4 of the CellCept without any major complications. I have had a little more energy. I still fight headaches and now have mini episodes when I am tired. I just have twitching and small convulsions that do not last very long. I feel blessed. We have had a full summer of spending time with family, celebrating both of my children's birthdays, and time with friends (though not as much as I would like).
My daughter went to an amazing tennis camp and a mission trip. She has grown physically and mentally. My son enjoyed having his parents to himself while she was gone! I could not ask for more at this time in my life...well, maybe fewer medical bills...but then I am good! hahaha
