Thursday, February 25, 2016

Internal Medicine 2/23/16

Internal medicine was this past Tuesday. I had the usual blood work, including Vitamin D, Magnesium, and the basic metabolic panel. I'll go down there and look at results tomorrow. Dr. B doesn't deal with my kidneys and HKPP, but tries to manage anything else that comes along, including some of the symptoms associated with these conditions. This includes my ridiculous digestive system and my heart, which loves to race and palpitate over nothing. It gets especially fussy when I try to do anything productive, like laundry or dishes or walking to the mailbox. And if I'm startled in any way, forget it. I have to lie down.

Conclusion: My heart is a jerk. I'm back on a monitor for a little while, to take a look at things. Gone are the days of the Holter. This monitor hangs out on my torso and communicates wirelessly with an app on a cell device.

The electrodes are standard, and they still suck. My skin hates electrodes, so I'll be bringing out the Vaseline or Neosporin or whatever to deal with that. Not a real complaint. It could be worse.

We also discussed several of my medications. I'm no longer on esomeprazole (NEXIUM) due to its utter failure. Not only did it not work, it greatly aggravated my Gastroparesis and caused significant magnesium absorption issues (as PPIs are known to do), which brought my digestion to a halt as well as triggered new bouts of myotonia (think charlie horses that are prolonged and so severe that they require medical attention...yeah). So this just hasn't been going well.

Once I stopped the med, my acid reflux returned with a vengeance, worse than ever, and I began choking again. This has been in the news quite a bit lately, and to my dismay, I am one of the statistics of which they speak. So it's out, as are the two drugs I took prior to this one, omeprazole (PRILOSEC) and pantoprazole (PROTONIX). I'm now eating calcium carbonate tablets and propping up on four pillows until something else can be figured out.

In spite of stopping the PPI, my digestive system has still not recovered, although it is finally seeing a little bit of improvement now that I've increased my magnesium supplementation. I hope the increase will be temporary, since it's making my stomach and back ache like there's no tomorrow. It's always something.

As for other meds, I'm still fighting with my insurance about covering them. It amazes me how an insurance establishment thinks they have the right to say that I don't need a they would have a CLUE. Sometimes I want to say, "Ok, I'll stop taking these pills and go back to work, and YOU can have systemic disease. Deal?" Stop trying to kill me, you dummies.

That's the nice version of what I've really been saying. You're welcome.

I'm nowhere close to getting housing in Mississippi where my renal and muscular dystrophy physicians are, so I am really grateful to Dr. B here at my local clinic in Alabama for being so helpful. He has a medication assistance program that works with my insurance, and this has allowed me to obtain many of the medications that have saved and continue to sustain my life (as well as sort of wreck it, but that's the way the ball bounces when your body attacks itself). This is a no-win situation, and everybody involved knows that, but I'd say most of us are doing all we can do to keep me around. I don't take it for granted.

Next appointments: OBGYN in April, MDA and Renal Clinics in May.

Cross-posted to the HKPP blog as usual.

Monday, February 22, 2016

Systemic Disease, Social Media, and a Serenity Prayer

Sorry it's been a little while. I've been pretty distracted lately, in some ways good, other ways not so good. Winter is very hard on me where my condition is concerned, and already being weak from my bad episode in December hasn't helped matters. I'm in a great deal of pain, but I'm doing my best to carry on as usual. For me, that means dozing off and on in between general maintenance of myself and my home. Cooking, cleaning, the usual boringness, but it's more difficult than usual (and the usual is that it's difficult to begin muscle weakness is significant, if you're new here). I did have a few outings with friends and family this month, some of which you've already read about, but I'll share more soon.

I'm hurting, but I count my blessings, because I know how much worse off I could be. I've been there, and I don't ever want to be there again. I'm making it through life, in time. Some days, the dishes don't get washed and I have to try again tomorrow. Some days, I stay in my pajamas because I simply don't have the energy to shower and change clothes. Don't worry, if you've hung out with me, I assure you I've showered. You're welcome. I've gotten no writing or art done this month, but I've done some research and made lists of things to write and paint and finish and do when I'm able. Whenever that will be.

Most of my work has been on my social media life. I cut down some of my social networks, even deleting a couple of them. I blocked loads of people. Some, I'm sure were fake accounts. Others had been abandoned and there was no reason to let them linger. A few were blocked for reasons, none of which I will get into here. I'm glad I did it, and that's all you need to know.

This meme is a pretty solid reflection of me these days. I'm very tired in general, mind you, but especially tired of BS. There are things I am forced to live with that I cannot change. Dealing with those things is hard enough, so the last thing I need is fabricated drama. I'm not supposed to be under any stress. I've had to choose to make my health and well-being priority #1, and my lifestyle - both the decisions I've made and elements that are beyond my control - are a reflection of that. I'm reminded of the "Serenity Prayer". I don't have a clue where it originated, but I've seen it all my life: 

I guess you can say I'm learning what I can change, and finding the courage to make those changes. It will be a work in progress till the day I die, I imagine. I've yet to accept the things I cannot change, and I am not confident that I ever will, but I do wish for the strength to handle those things appropriately, at the very least.

Speaking of God and prayer, I've been in quite a valley over the last few years. I haven't been able to find the right words to say, and I'm not sure I have the right words now, but my next blog will be about my spiritual journey - where it has been and where it's headed. I've changed a great deal since I started this blog, and that is something I would like to finally address. Talk to you then.

Saturday, February 13, 2016

Ocean Springs and Family Matters

My biological father has been gone for 11 years now. He died on February 11th, unexpectedly, and his death at such a young age (54) changed the family forever. My young half-siblings were still kids when he died, and each one of their lives took completely different directions as a result. They are all doing quite well now, thankfully, and I know he would be very proud. I can only imagine what he would say about Jo, Zoey, and Sadie, and speaking of them, I have news! Now that my youngest brother has made the announcement online, I can share that he is going to become a father in July. This took the family by surprise, but we love babies and I look forward to meeting my new niece or nephew later this year!

Freddy, my stepfather, accidentally called me Lynn today during lunch. He talked about how much he misses her. We discussed his upcoming retirement and his final wishes (which I hope won't be utilized for years to come), and talked about the house. My older brother has Dad's house. I told him I think I should have control over what happens to Mom's. It was hers before they met and it was Grandmother's before that. I lived there nearly 16 years. So if he doesn't sell the house himself, hopefully he will agree to list me as the executor when that horrible day comes (it better not be for a long, long time...please).

Anyway, we spent the morning in Ocean Springs, Mississippi at the farmer's market. It was a beautiful day, and the crowd was larger than expected, but it was nice. I'm not kidding when I say I wanted to buy everything there. Excellent faire, probably the best selection I've ever seen at a tiny local outdoor market like that, and no retail pyramid crap. I hate when people are trying to sell Pampered Chef and Rainbow and such at a farmer's market. Go have your parties and stop taking up limited space where farmers and laborers are fighting to make a living. Gosh I'm getting cranky in my old age, aren't I? Sorry if I offended someone. You'll live. ;)

The loot:

Huge garlic flatbread from Serious Bread Bakery, Gautier Gold Honey (in a bear!), Grumpy Man pepper jelly and salsa, and Sugar Fix pralines! Oh, and I forgot the pic, but I bought a parsley plant. Wish me luck in keeping it alive.

Freddy and I went to Mosaic Tapas Bar for lunch. Funny enough, what we ordered was nothing close to tapas. He had a half-pound burger that looked like what every perfect photo of a burger should look like. I ordered a Cuban sandwich, which ended up being twice the size I imagined. We were stuffed, took home a ton of leftovers, and I thanked them by dumping my sweet tea across the entire table, ha! OK, it was an accident. I do that more often than I'd like to admit.

I'm home and ready to crash into bed from exhaustion, but I'm very thankful that I had a good day. I'm glad Freddy did too. Things have been really tough for him, and he deserves to live the rest of his life in absolutely serenity after all he's been through over the years. We may not be blood-related, but he raised me from age 11 and calls me his daughter. I consider myself very lucky that he's my dad.

Side Note: I'm not compensated for a dang thing I mention on this blog. Freddy and I bought it all fair and square, and you should too. Support your local biz! :-)

Friday, February 12, 2016

Video blog

I was going to blog, but I have a migraine, so I am going to have to put it off for a little while. In the meantime, if you follow my health updates (and all the TMI), feel free to stroll over to Fighting HKPP for a vlog.

Talk to you soon, friends.