It seems like my Grandpa's prediction is coming true. Summer is starting to slip away from me, far too quickly. On July 1st, I sat for my state boards for my LPN license. I found the next morning that I passed! I am officially a licensed nurse. This journey has been full of bumps in the road...many, many, bumps. But I digress.
Dr. Green, unfortunately, has not called me since my last appointment. This is quite distressing to me. From what I understand, stimulants (such as Ritalin or Adderal) like he was considering may not be a good idea. In fact, they could predispose me to an autonomic crisis and seizures. Needless to say, I'm leery of being on either one. Also, he was considering weaning me off of the Topomax. Problem with that is going off of an anti-seizure medication and being on none at all would put me at a high risk for seizures. I can not have another seizure for many reasons. It would interfere with my job, it would make it so that I could not drive for at least three months, which would mess with school and work and everything else. Not to mention that a seizure usually interferes with my baseline. In fact, after a seizure, usually I can not fully regain my previous baseline. Interestingly, this also happens after I become ill with a virus or another acute illness. This is fairly common among Mito patients.
I did, however, have a lengthy conversation with my therapist (this is really just a politically correct name for my shrink, as having one life threatening disease and another chronic disease kind of blows at times and it helps to have someone to talk to and help "sort things out" so to speak) today and I feel that it was a productive conversation. I talked to her about how I feel that Palliative Care should be involved very soon. My reasoning for this is that I need someone to help me get my symptoms under some control so that I will have some semblance of a quality of life. She seemed to think that it was not a bad idea. From what I understand, she sent an e-mail to Dr. Green that kind of outlined this. Right now it's something I'm kind of throwing around. My main concern, however at this point is my comfort level and quality of life. It's obvious that no cure is around at this point and there probably won't be one any time soon. For the most part, I have accepted the fact that a cure will not come in my life time. As difficult as that reality can be to accept, I have to try to do this because living in reality is the best way. Obviously, I would be beyond thrilled if they could find a cure for this thing tomorrow. However, that probably will not happen.
The thing that I have been focusing on, is becoming part of the cure. The way I can do that, I figure, is by being involved in the Energy for Life Walkathon yearly, and by raising awareness for Mitochondrial disease to the best of my ability. I do my best to do this. Honestly, I think I've done pretty well so far. Now I need to make sure I am ready to do all of the fundraising needed for the walk and also everything that is involved with it.
As far as how things with me are, I am doing my best to hold my own. I am still struggling. A lot. I've been in a lot of pain and discomfort and have been using my Zofran daily for nausea with little relief.
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