Thursday, January 28, 2016

January Medical Update

I saw my new eye doctor on the 26th. He was outstanding, and I intend to keep him forever. My eyes haven't worsened, thankfully. I'm still bat-blind without lenses of course, but I see pretty well with them (about 20/50). My eye muscles are weak, which could be contributing to not seeing 20/20, or I could have permanent damage from the scratched corneas I obtained about 14 years ago. There's really no way to know for sure, I guess. I have a script for Restasis for chronic dry eye, but I have to wait to find out if it's safe to use (steroids are a dangerous no-no with HKPP, but eye drops may not be an issue...we'll see). I picked out new purple glasses, and I will begin a contact lens trial after my current migraine resolves.

Next up is Internal Medicine clinic, which is in February. I'll have bloodwork to look at my BMP and kidney function again, but I don't anticipate any other drama (famous last words, knowing me). I pushed MDA and Renal clinics to May 3rd through 5th, but as it stands right now, I am neither physically nor financially able to go to Jackson. If this changes by May, I'll go. If not, I'll have to cancel until I see improvement in these areas. I don't have a choice.

Winter is very hard on me, and I look forward to warmer, less painful, more functional days. In spite of how difficult 2016 has been so far, I'm counting my blessings.

(cross posted on Fighting HKPP as usual)

Sunday, January 24, 2016

The rest of the month: a to-do list

LJ and G+ out (done)
Tumblr in (done)
Twitter lists renovated (done and private account deleted)
Stay off of Facebook till at least Monday (done)
Hide or delete some blogs (done)
Update others (done)
Move one to Tumblr (in progress - this will take several days)
Pin at least 10 photos a day on Pinterest (ongoing)
Decide what to do with My Fitness Pal (decided to stay)
Reopen Etsy shop (done)
Sort and scan important paperwork (moved to February because reasons)
Finish cleaning house for upcoming inspection (done)
Go to the doctor (done)

If I manage to accomplish all of that, I will reward myself with admission to the Chocolate Festival in February (a whopping 4 bucks).

Nothing to see here, just trying to hold myself accountable. I'm one of those crazy list people. In fact, lists are really the only reason I get anything accomplished.

Happy Sunday.


(List updated 1/31 6:28pm)

Friday, January 22, 2016

No Words

A Facebook friend unexpectedly passed away.

I've pretty much had all of 2016 I can take at the moment. I'm going to go to bed and pull the covers over my head.

Monday, January 18, 2016

Another great artist gone. Screw you, January.



A painful goodbye to one of the best singer/songwriters in American history.
RIP Glenn Frey. You were a favorite. Thank you for your incredible songs.

January Stream of Consciousness

It is supposedly 77 degrees in my apartment right now, and I'm still freezing thanks to Muscular Dystrophy.

I was supposed to update my HKPP blog weeks ago, but I still haven't because I don't want to relive that horrible episode I had in December.

I'm proud of myself for learning to cook in spite of my limitations, and I look forward to learning so much more.

I weighed myself yesterday, and I'm hoping to somehow lose 15 pounds by my birthday in late March. If not then, certainly by no later than my high school 20 year reunion.

It boggles my mind that I'm at that milestone, as I still remember when my mother was invited to HER high school 20 year reunion.

I've been under the weather all winter so far. Not a happy camper, but I'm trying not to completely lose my patience (TOO LATE! GRRRR, WINTER. RAWR).

I don't know how people with systemic disease who live north of here survive. I really don't.

I joined Trek Class (as in Star Trek) last year via Syracuse Mass Open Online, but I'm just now getting started on the course. I marathoned the original series until I absolutely couldn't stand another minute. It was awful. Thankfully, I've moved on to more recent serials. I grew up on The Next Generation, and beyond, and they are a breath of fresh air in comparison to the offensively sexist and misogynistic original. Many fantastic characters, and much nostalgia from my middle and high school years. Thank God for Patrick Stewart. I love that man.

(I admit I bought a Tribble, though, at Geekonomicon. It even squeaks. It's adorable.)

Apartment inspection is coming up already (every two to three months), so I'm slowly trying to tidy up the place. It's never a complete wreck, but I would prefer it to be as presentable as possible. I made a huge dent in the laundry (not having a W/D in my place is such a pain) and cleaned the fridge yesterday. Today, I'll put away all of the linens and dishes and start sorting through paperwork that's currently scattered about. At some point during the week, I'll sweep and mop the floors. Having HKPP means having to carefully pace myself, lest I have another episode like the one I had in December (doing the same thing...overactivity around the apartment). My situation is highly frustrating and unpredictable, but all I can do is take precaution and hope for the best.

I have several clinics coming up that I am not ready for, as I am not in good enough shape to make the road trip. I guess I'll have to reschedule them to sometime in the Spring, as I anticipate being stronger when it's warmer. Sure hope so, anyway. Come to think of it, I don't even have the funds so I would have had to reschedule regardless. I've got to figure this out...

I'm making an effort to divide my time online a little more evenly, which means taking breaks from Facebook to focus more on other sites. I have almost 4000 followers on Pinterest and I'm rarely there anymore. I need to change that. I also want to make sure I stay up to date on my blogs, and catch up on Instagram, Twitter, My Fitness Pal, and other sites. I'm still on Ask, if anyone cares. I've given myself a deadline of the 25th to reopen my Etsy shop, so the pressure is on there. (P.S. I hate deadlines.)

I finally chose a pen name for writings that I wish to remain anonymous, and I created an email address as well as a Tumblr with that name. It is absolutely nothing like my real name, and came to me out of nowhere. I'm learning how to use Tumblr, and I will eventually share the link...but not yet. I need to keep things private for now.

This turned into more than a stream of consciousness, I think, but whatever.

It's 1:35 in the morning. Time for Zs.

Saturday, January 16, 2016

Heartbreaking Week




Man, 2016, what on Earth are you doing to us? David Bowie, Brian Bedford, and my (and so many others') beloved Alan Rickman gone in the same week. The world of entertainment is crushed and countless hearts are grieving, as hearts do and should. We're designed to process the loss of those who made an impact on the world. Even if we never met the person, that fact is irrelevant (I'm talking to you, cynics...get over yourselves), and it's more than ok to cry and feel sad that they're gone. It hurts when someone's talent touches your life and that someone is taken away. The pain is real.

I guess it helps a little to know we're not feeling this way alone. We can at least take solace in that.

Sunday, January 10, 2016

Sadie turns one!




Aunt Kelli's sweet pea turned a year old on the 6th!
I was too weak to drive, but I thankfully carpooled
to Louisiana to attend her birthday party on the 9th.
I don't have permission to blog others' pics (I haven't asked),
but I took these few myself, so thought I'd share.

She's such a sweet baby, and I'm so happy she's with us.

Friday, January 8, 2016

Diet Talk


Time to get back on track after holiday eating!

My diet is supposed to be high protein low carb moderate fat, most similar to the MIND (Mediterranean-DASH) diet. I'm forced to modify it to eliminate wine (alcohol = paralysis), and I can't eat grains (of any kind) three times a day without a problem. I try to limit grains to two servings or less a day. I also have to be cautious of fructose, but I can usually get away with blueberries or strawberries if no sugar is added. Most other fruits are off limits (that does not include tomatoes or avocados, which I rebelliously count as vegetables). I eat a lot of beans and peas, occasional greens (not daily, because kidney stones), and I have not been able to give up cheese. I don't know if I ever will, to be honest, but I have reduced it. I use olive oil or grapeseed oil when I cook. My goal is usually chicken 3 days a week, seafood one day a week, beef one day a week, and a meatless day, with the 7th day being a cheat day to eat whatever I want. I limit pork to a couple of times a month now. I haven't perfected this by any means, but I've been working on it for a while.

One of my goals for the new year is to not bring another ounce of pasta or another Coca-Cola into the house. I still need to work on my candy intake. I shouldn't be eating it at all, needless to say. I'm sitting here shaming myself about it as I type, because I have no excuse. I'm a work in progress.

This diet is appropriate for most people with neuromuscular disease (again, careful with alcohol and grains, and talk to your doctor), but it's not the best diet for chronic kidney disease. Unfortunately, I have to choose between saving one or the other. I choose the muscles for obvious reasons (I'd like to be able to move, please and thanks).