Thursday, February 28, 2013

Rare Disease Day 2013

                                                Show awareness by spreading the word.
                                               Learn something new about a rare disease.
                                             Offer support to someone fighting their battle.

Monday, February 18, 2013

Local Clinic Follow-Up


I finally returned to the local clinic and saw Dr. B, who ordered the heart monitor for me last month. The results were exactly what I was expecting. Yes, I'm having some arrhythmia. No, there's nothing that can be done about it. So that's the end of that. Quick and painless, I suppose. I'm so glad to be off of the monitor because that thing was driving me absolutely batty.

We spent a good bit of time discussing other things. The aggressive treatment I'm on, the side effects, and the fact that I'm needing a local doc to take over my care...mainly script-writing. I'm now on Medicaid, and need a Medicaid-approved physician to issue all prescriptions. Otherwise, I'm seriously up a creek.

I have yet to successfully titrate the acetazolamide to the dose Dr. F wanted me on, but I'm still trying and I'm not going to give up. I am encouraged by the fact that I am no longer waking up in a state of paralysis. Yes, I still have paralytic attacks regularly...some of them serious...but I used to wake up paralyzed every single day. Since getting the acetazolamide in my system, that hasn't happened. That's a good thing, and in spite of the fact that it isn't improving my general weakness, and the side effects are very difficult if not unbearable at times, the conclusion is that I need to stay on this drug. I'm also still on everything else, and I'll update about meds and side effects later.

Dr. B is concerned about my kidneys, so he ordered a work-up and gave me a month of samples of Detrol to deal with some bladder spasms (sneezing has been a bad idea lately...if you get my drift). I've also been dragged against my will into an OBGYN appointment, which I probably won't talk about here because I don't really see the point. You're welcome.

The great news is that he had no problem agreeing to rewrite most of my scripts. They've been turned in, and I will find out tomorrow whether or not Medicaid is going to cover them all. We're talking about nearly $1000 in a month in medication. Pray hard, brothers and sisters.