I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Wednesday, March 7, 2012

LONG week. Happy birthday Baby Jo, and my hospital update...

My precious niece, Layton Josephine, celebrated her first birthday this past weekend! I can't believe she's already one!!! Jo is such a baby doll, already walking, and so smart...love her so much!

Hooray that I was able to make the trip to Louisiana to spend Jo's birthday with her! I knew I was going to be there or die trying. I so want to be in this child's life and watch her grow up. There will come a day when I can't travel at all anymore, so I am going to do what I can for as long as I can. The trip there and back wasn't without its drama, but I managed and I'm super grateful.

I made it home a little before midnight Monday (the 6 hour trip ended up taking 10 hours...ugh), took a short nap, then had to turn around leave for the hospital in Jackson. Thankfully, my aunt and uncle were with me and did all the driving. They have been life-savers, literally, and I will never be able to thank them enough for all they have done and continue to do to help me find quality of life. I would surely be dead if they hadn't intervened. I'm at a loss for words beyond that.

My appointment Tuesday with the MDA Muscular Dystrophy Clinic went well. The new doctor I saw was very nice, asked a lot of questions, and we discussed several issues. I had a new series of blood tests, including a vitamin and mineral panel. B-12, Vitamin E, Copper, Folate, and Zinc were special concerns. I was also given a new script for emergency potassium to supplement my maintenance meds, and I spoke with the MDA concerning future medical equipment.

We had an awesome dinner at Julep, and stayed overnight.

Wednesday morning, I met with a team of doctors at UMMC to discuss my breathing and sleeping issues. Both docs were outstanding...thorough, respectful, and blunt in the nicest possible way. They both believe that I have sleep apnea in addition to the breathing problems that result from Periodic Paralysis. No oxygen has been prescribed by day (yet), but they urged me to proceed with testing so I can at least obtain a CPAP machine to use at night. Unfortunately, the testing is $2300 paid in full up front, and the CPAP is an additional God-only-knows how much. There is no financial aid or indigent care for this treatment at UMMC (or any other hospital that I know of), so I am at a stand-still until I figure out a way to make this happen. Other than that, I was prescribed yet another med. It will deal with my acid production, and I start it tomorrow morning.

Lord, I am so tired of pills. That's fifteen now, if anyone's counting. And to think, just a few years ago, I was only on one pill a day. ONE. If that doesn't put my situation into perspective, nothing will.

I'll keep you posted, and I will soon launch a blog that deals strictly with my battle against this disease. I greatly appreciate everyone's thoughts and prayers on Twitter and Facebook. I promise I don't take you for granted. Thanks for caring.