Epilepsy: Why Your Health Matters More than Ever- Part 2: Recovery (and...

Epilepsy: Why Your Health Matters More than Ever- Part 2: Recovery (and Waiting)

Coming home from the hospital on November 8th was exciting and a little surreal. I have a video my mom took a couple of days after that time and it is clear that I am in recovery. My movements are very slow, almost as if I have to think about how to use my body before using it. But coming home was the only exciting part. The rest I would describe as work.

Questions and Testing

For the next month or two, “why” became the most important question I asked. It felt like the only question that mattered. I was tested repeatedly and I saw additional doctors (a stroke specialist, physical therapist and a rheumatologist). I wore a heart monitor for a month to see if I had a hole in my heart. I was tested for CNS lupus (a form of lupus which affects the central nervous system), I had more blood drawn that I have in my entire life, and had over a dozen doctor and therapy appointments. Then, there was the waiting and homework.

Work

While waiting for answers from these tests, I went to weekly physical therapy, and worked at home on some things that the stroke had affected. I did my best to write every day. I kept a journal in the hospital and can now see and remember the progress, from hardly being able to draw a circle to being able to write down my exhaustion levels for my various doctor visits.

Physical therapy was one of the best parts of recovery. It was essentially strength training. My stay at the hospital and my lifestyle the last few years had taken a toll on my body, and my physical therapist was able to prescribe specific exercises to strengthen areas that needed it most. The regularity of appointments and daily exercises got me through the nerve-wrecking waiting period for the results of tests for painful health problems like CNS lupus.

Results

The end result of all of those months of testing and work was fairly simple. I found out that I had a stroke. I probably had it in the hospital. My stroke specialist listed a couple of possible reasons for it, which I still could not relay back to anyone without reading them out of the journal I kept at the time. Even with that information however, I do not understand them.

As for CNS lupus, the hole in my heart, and all the rest, nothing came of it. For that, I am so grateful. Nothing scared me more at the time than adding more things to take care of when I was trying to recover from a traumatic event. I’m guessing similar thoughts were going through the minds of my family. To this day, that thought still irks me.

While I cannot understand the exact reasons for the event itself, I can piece together some of the ways in which I could have prevented what was essentially a breakdown in the functioning of my body’s systems.