Seizures - 4 Weeks Out

Seizure Update: I'm extremely happy to report that I haven't had a seizure since I left the hospital, and I don't really remember those ones. I am on two anti-seizure medicines and the ultimate goal is to be able to go to zero.

March 26 is Epilepsy Awareness Day - Wear purple and most importantly read what to do if someone is having a seizure:

 www.epilepsy.com and www.epilepsymichigan.org.

I think I have said this before, but seizures are the WORST part of my life. Worse than the tumor, surgeries, prior recovery, current recovery process, past and future chemo, radiation and anything I have to go through in my life.

I had a major seizure just before this past Thanksgiving. So, I was put on a second anti-seizure medication.  Between November and my recent surgeries, I was having about 3-4 Aura's a week, a type of seizure (also called simple partial seizures). Fortunately, I can sense one coming on and I take an Ativan (in my case, used as a rescue med), lie down on the ground and wait it out. Occasionally, my right arm will start moving uncontrollably, my head will pull to the right, and I cannot talk. During Aura's, I don't lose consciousness and they typically last only a minute or so. Because I can sense them, I have time to put on calming music and I feel like I can stop them, sometimes, by concentrating on the music and deep breathing. I'm very fortunate that I usually feel these seizures coming. Once I get through radiation, I hope to get down to one medication and then over time be taken off  both. This is a huge goal of mine since I don't like the way the medications make me feel.  Thinking and functioning is hard.

In 2012, I fractured the transverse process at C7 in my back when I fell during a seizure at work. I was alone in my office and  was unconscious for about an hour before coming to. My neck was extremely sore for a few weeks and the nerve running down my left arm was sore for nearly a year. Moving my arm at all during the first month sent a sharp nerve pain down my left arm and was unbelievably painful at my elbow. Also, my finger tips were numb. I finally regained the feeling of my pointer finger after about a year.

The fall also impacted my left shoulder. I had been going to physical therapy for about two months up until my recent surgeries. My shoulder was constantly hurting me and I was unable to move it in certain directions. I have about 80% of the movement now. The only benefit of my recent hospital stay was that my shoulder was not used and was rested. I remember being surprised that it wasn't aching like it usually does. It felt a lot better - either that or I had larger issues and was just unaware of the shoulder pain. Now that my right hand is only functioning at about 50%, I'm over using my left arm which has caused my shoulder pain again. I plan to mention this to my physical therapist - I'm clearly broken and what better time to work on my shoulder too.

I have no idea how others deal with the recovery process AND having to deal with seizures. I'm not sure that I could do it...

"Thoughts, feelings and most of the typing by Josh, organization and editing by Fay"