Sunday Stroke Survival: Waiting and Waiting and...

Pause! Still!

This week, I'm still feeling like the Energizer Bunny on pause. I finally heard from the nurses at my PCP's office...they lost the paperwork. Geez, thanks a lot! Let me just drive an hour round trip and let me fix your mistake. No, that's not going to happen. With the big hurricane hitting Texas, gas prices here have gone up 70 cent a gallon. I made that trip once to get it for the first time. Now, it's on them. Hanger Orthotics and my PCP's office are only a mile apart.

Now, I understand I'm not my PCP's only patient. It's a huge practice with eight doctors and support staff. I'm going to let my fingers do the walking yet again on Monday.

I'm still in a holding pattern with my neurologist also. I haven't heard BOO from them yet. Yes again, another huge practice with ten neurologists and five satellite offices, but still. I've been patient. More than patient and in pain. I'm taking the full dose of Dantrolene (100 mg a day). Side effects have been irritating including

headaches (not migraine strength, but dull and constant), diarrhea, and general fatigue, but no extreme sleepiness or abnormally low heart rates at night.  The last two are a plus over the Zanaflex and Valium. But, at least it keeps my pain levels just below uncontrollable tears or screaming. So I guess it's working. I'm also thinking of buying stock in Imodium. Supposedly, the diarrhea will stop as my body gets adjusted to the medicine. Here's hoping.

If I don't hear from them, I think I may drive to my closest satellite office for my neurologist on Friday to speak to a real person. It's only fifteen minutes away instead of an hour plus one way. Put that person on the spot for answers. That poor soul. I won't be my abby normal, pleasant self. I'm never at my best in pain, although I do try. I'm tired of listening to computerized voices and leaving messages.

Question...should I go ahead and get my Botox?

The Botox is expensive and does relieve most of the spasticity pain for two months out of three, and it does improve my mobility a little at the red line dose. I know in the past when consulting other doctors for treatment, they have asked that I be Botox free for at least six months prior to being seen. I'm at the five-month Botox free month now. This my major hold up. I'm hoping for an alternative that works better now instead of next year. Decisions, decisions, and building levels of frustration.

Nothing is impossible.