God, how depressing is this blog? Ha. I just reviewed the last entry and it made me laugh a little bit, honestly. I probably shouldn't post anything on the internet when I'm feeling so badly, but I've always been one to keep it real.
Hard to believe I've been blogging online for over 10 years now. It has been a lonely road with this disease, but I feel worlds better since finding others who know what I'm going through. Having a mother who has the condition but refuses to acknowledge it is not easy. Had she been willing to pursue diagnosis and treatment, perhaps we could have dealt with this together. She has made it clear, though, that she wants to be left alone. It's her choice, and there is nothing I can do to change her mind. I just hate to see her (and her husband) with reduced quality of life as a result.
I'm forever grateful to have my aunt and uncle. They stepped in when the rest of the world stepped out. I would have never made my way to the docs in Jackson had my aunt and uncle not decided to help. Thank you thank you thank you.
I'm grateful for the support groups on Facebook and the PPA/PPI Listserv. What I have learned there has saved my sanity, if not my life. In spite of the occasional drama that rears its inevitable head, it is imperative that these support systems remain. I hope the powers-that-be realize how much they are needed.
I also can't say enough about the doctors in Jackson. I become discouraged often between visits, but I am always encouraged again after I've talked to them. Having the MDA team and Dr. Fulop on my side is a blessing that I do not take for granted. Dr. F continues to deal with my ups and downs with the utmost kindness. I always arrive to the office feeling sad, and end up laughing about something by the time I leave. God knows I find humor wherever I can; sometimes I think it's the only thing that keeps me going. I wish I could clone my doctors and send them to every hospital in the world.
My heart breaks when I think about my friends with HKPP who still can't find someone who listens or takes the condition seriously. I lived that nightmare for 20 years, and I am a broken person for it...albeit, stubborn and perseverant. When things became much more serious in recent years, I launched into "sink or swim" mode and became what my friend Katherine now calls her "snarky, loving, tender, angry soul sister". That cracks me up and makes me a bit sad all at the same time. God knows I've never wanted to be the fighting type, but I've been forced to be and it's a big reason why I'm still here. I've had some terrifying times...moments when I didn't know if I would see tomorrow. I've learned that living this way can alter one's perspective about life. I am an old soul. I'm very tired, I get cranky, maybe even angry, yes; but I'm also quite passionate, empathetic, and grateful as a result. I pray with all my heart that the latter triumphs over the former. I want everyone with this condition to never give up on finding the medical attention you need. Get angry and fight if you have to, but whatever the case, hang on to hope and don't surrender. If I can do it, I know you can too.
My appointments in Jackson went well, with the exception of my legs paralyzing half way through the day. I was in a wheelchair by the end of lunchtime (lunch was at Babalu, by the way, which was amazing). I met the CNP at the MDA clinic, as Drs Veda and Witt were out of the office. Carolyn was great. We discussed my current condition and medications, and she ordered A1C and vitamin blood work. We agreed to put me back on Vitamin D 50,000 IU weekly, as I seem to be deficient otherwise. I'm still waiting on B12 results, but my A1C already came back and it was fantastic at 5.7. This was a bit of a surprise, as I have not only gained 15 lbs over the past 2 years, diabetes runs heavily on all sides of my family. Praise the Lord, I beat the odds again. I met with Dr. Fulop and one of his students in the late afternoon. I told them about the acetazolamide, and there was no hesitation that I should remain on whatever dose I can tolerate. I admit I have mixed feelings about staying on it because, God help me, I'm such a miserable person on this drug. Nevertheless, I agree wholeheartedly that I should continue with the regimen due to the slight reduction of paralytic attacks. We also discussed Inspra and agreed to double it. I'll let everyone know how that goes. I return to Jackson in July.
I think I forgot to tell Dr. F about Dr. B, who has rewritten some of the scripts (perhaps he realized this, when I didn't ask for refills) so Medicaid would cooperate. They have a problem with the fact that Dr. F is in Mississippi, even though the hospital itself accepts Alabama Medicaid. Frustrating situation. Hopefully it will all work itself out. My next appointment will be at Dr. B's office in a few weeks, where we'll discuss the latest news from Jackson and take a look at labs.
I was going to tell my doctors about Alexander's death, but I knew I couldn't get through it without sobbing, so I didn't. Maybe next time I'll be able to talk about him.
I still haven't caught up on the blog here, and I apologize. I am going to try to remedy this soon. Thanks for reading my ramblings, and don't hesitate to ask questions if you have them. I realize I have the vast majority of my readers on Facebook and elsewhere, but by all means comment here if you prefer.
Quite a few articles coming soon.