Well that was awkward

The office called to reschedule the appointment for April 28th instead of the 29th, so I didn’t have to go to the doctor on my birthday after all!

Dr. Z was surprised to hear about the intensity to which some of my symptoms had effected. But, now that I’m pretty much back to my baseline cognitive state and energy level, we were able to reflect. We decided that I would call her the next time I have a seizure and that then I will very likely add another 100mg of Zonegran. I have the script ready to fill, it’s just a matter of if I want to and feel ready to do it. I’ll be busy volunteering at a children’s hospital this entire summer, and I don’t want to be all fogged up again. So, then we circle back to the ‘Are you putting your health or life first?’ debate, the ‘How is your quality of life, and how do you define quality of life?’ question. Those are conversations to have in person, not via a blog post.

I’ve actually had a seizure since I saw Dr. Z the week before last, but I know that it was directly caused by the lack of sleep and stress that came along with final exam week. Because the seizure was not triggered by an unknown cause, I didn’t call Dr. Z. I will call her and add more Zonegran when I feel like a seizure really goes out of control, or that they are truly unmanageable and increasing. The Klonopin wafers knock the seizures out within minutes, and it has been 3 weeks since my last seizure, and I’m feeling pretty content, which is nice. Part of being an empowered patient is taking responsibility for life circumstances and life events that are both within and out of my control. I could have chose to go to bed earlier when I was studying, I suppose that I could have petitioned to take my exam later in the day instead of in the early morning, etc.

I remain a huge fan of Dr. Z. She listens intently, and you can see the gears churning in her head as she cross-referencing her neurological knowledge with her personal, familial history of epilepsy prior to answering questions. I had a question that she wasn’t sure of the answer to, so she checked with a colleague and called me back with an answer within two hours of the appointment. There’s a second doctor, Dr. D, who has come in for a few minutes at the end of my two appointments with Dr. Z just to basically summarize and verify everything that I talked about with Dr. Z. Dr. D is so incredibly socially awkward. The interactions are almost painful to have. I’m not sure if he has some sort of social impairment, but his [perceived] level of uncomfortableness and social anxiety when speaking with patients is something that I truly believe is holding him back from connecting with and building relationships with his patients. I’m cringing now even just thinking back on the two interactions now. I might write another blog post about my thoughts on doctors and social skills/interactions more at length at a later point in time. Medical knowledge matters, but so do social skills and knowing how to navigate social spheres, even patient and waiting rooms.

Neuro Visit + Upcoming MRI

I saw my neurologist earlier this week. Even though the number of seizures decreased in September and October, I still had the same number of them in August as I did in November after a medication increase. Numbers: 4, 3, 2, 4. We discussed adding more Keppra or a third medication because of the numbers. I am not in favor of adding more meds because Keppra makes me extremely fatigued, and I also don’t want to add a third medication at the start of a new semester with unknown side effects. We decided to continue my current Vimpat + Keppra combination for now and see what December and January bring number wise and go from there.

She also told me about Todd’s Paralysis, which is what I experience for a day or two after my seizures. Sometimes it’s just nice to have a name for an actual condition to know that whatever is going on is a “real” thing.

I had a lot of trouble with car rides stirring up nausea after surgery, before I went to college. I wasn’t traveling in the car very much at all during the past semester, so I had forgotten about the problem. We visited family who live about 30 to 45 minutes away last night and the car ride was pretty bad. I felt sick for most of the night. Yuck. The experience stirred up memories about cab rides in San Francisco.

My next MRI is in one week on December 27th.  We’ll drop off hats and other resources for the center’s library as usual. This will be my one year and four month scan since surgery. It’s a few weeks early, but this way I can have it done when I’m at home rather than rushing around to get it done while I’m back at college. For the first time in over a year I actually don’t feel that nervous!