Tuesday, February 8, 2011


It seems that I've let quite a bit of time get away from me. However, I'm glad to say that a lot of progress has been made in this time. This month is my sixth month after surgery.

I had another week of severe bradycardia, but this time, there was a clear cause: we had just raised my dose of Lithium. So, it is now clear that Lithium has been causing my bradycardia all along, including in the time right after surgery. I quickly weaned off of Lithium after this discovery, because bradycardia is very dangerous and uncomfortable. (I should have gone to the E.R., but chose to avoid it; a risky choice.) My heart rate has been much more regular since then, and never ever lower than 70 bpm. This gives me much more "conscious" time.

Just this past week, I ran out of Topamax and wasn't able to get it refilled for 7 entire days. I had a migraine every one of those days. Sunday was the worst of it. I attended part of my brother's college graduation, but at high cost. For a few hours, I labeled my pain at a 15. I couldn't help but scream. On Monday, I was able to obtain two bottles of Topamax. But over the weekend, the answering service could do nothing for me. I just barely avoided the E.R., only because I hate it so much.

Onto the good news.......

I haven't used my wheelchair or my walker in 2011. I'm gradually driving more. I'm taking a Spanish class at community college, which I attend independently. I'm trying to fit in adequate exercise. Overall, my pain has decreased. I'm able to think clearly more of the time. I can sit up and walk around more of the time, with increased stamina.

I'm still fighting fatigue, but Provigil helps with this. I have good and bad POTS days, but there are more good ones, and the good ones are much better than they ever used to be. I usually have a bad POTS day when I've overdone it the day before. I never sleep through the night. Despite my one reliable nightly wakeup, I seem to require less sleep lately, often waking at 10 a.m. (about ten hours of sleep).

I am to the point that I believe I will look for part-time work in the fall. I still don't know how well I be six months from now or one year from now. But I fully expect to continue to improve. I am wondering what career path will be right for me. It's hard to make plans, when you don't know what to expect. But to even to be able to consider new plans is more than I ever expected. I am considering grad school. I'll be meeting with a career counselor at my alma mater in a couple weeks. It may be too soon, but I'm ready to get the ideas flowing!

Also, looking forward to my wedding in July. Plans are going well.

Thank you to everyone for your support!

Please keep my Chiari friends in your thoughts, as not everyone has reached a hopeful stage in their journey yet.