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

Thursday, March 17, 2016

St. Pat's Day


I'm not feeling very human lately, but I am grateful to be functional for a few hours a day. I'm not participating in any St. Patrick's festivities, but I managed to dress like I was celebrating. I have a beautiful block of Kerrygold Extra Sharp Irish Cheddar in the fridge, and it will become cheese soup eventually. Not able to do it today, but I'll live. I did have more than my share of potatoes for breakfast and lunch, so I guess that counts for something.

My stepdad is taking me to dinner for my birthday, and I hope and pray I'll be better company by then. Irish blessings to all who accept such things.

Love,
Kelli (who is 15% Irish, thank you very much)

Wednesday, March 16, 2016

Triage, Tests, Muscular Dystrophy, CKD, Lent, Blah Blah Etc.

On March 9th, I choked pretty badly on some soup. It was excruciating, and I almost had to go to the emergency room. Although painful, I was able to breathe and swallow, so I decided to wait about 13 hours and go to my local triage instead, which is thankfully run by my own physician.

My lungs looked okay, but Dr. B was concerned about my esophagus. I was in terrible pain, nearly in tears, in my back and chest. Toradol, Phenergan, and Lidocaine didn't touch it. I was given a GI cocktail that didn't make me choke, scream, or get sick, so he decided that I didn't need hospitalization. He sent me home with a script for pain meds (it has been years since I've had a pain script and I don't usually get them filled, but I did it this time), and I was ordered to report back immediately if the pain gets worse or if I start coughing up blood. So far, I haven't had any additional trouble, but I'm still hurting a lot. The pain medication hasn't done much for me other than aggravate my muscular dystrophy, so I've already discontinued it. I can't win.

I received copies of my recent blood work. Magnesium is okay. Creatinine is still high, and it seems to be staying there. Not outrageous by any means, but not normal. I'm having panels done every three months to monitor things. That's really all we can do. Sodium is unusually borderline high, and I am pretty sure I'll have to back off of the Asian food. My sodium likes to sit pretty low due to all of the diuretics I'm on, but my sudden love of Madam Woo's chicken dumplings could be contributing to the change. This may explain why I am chronically weaker than usual, but it may not. Whatever the case, the decline is something I must figure out and get a handle on quickly.

I gave up soda for lent (yes, I do call it soda. I may be from Mississippi but I refuse to call everything Coke. It's irrational. Have a nice day. Oops, by the way, I really am talking about Coca-Cola...LOL). Lent is something I've never participated in before. So far so good, but I've been cranky ever since and my migraines are back with gusto. Not good news. I know I've done the right thing, as there is absolutely no reason why I should be drinking carbonated sodas, and in spite of the terrible headaches and the terrible mood, I plan to stay off of them altogether. 

Tea is a different story. It's entirely possible that a glass of tea will be pried out of my cold, dead hands someday. I'm not proud, but I'm also not sorry. :P

Next appointment involves womanly stuff - something I'm pretty terrible at. I'll try to do the world a favor and not blog about it.

Saturday, March 12, 2016

Just Tired.


Me.

Every day.

It's almost Spring, and my strength should improve at least a little.

Bring it on.

Tuesday, March 8, 2016

Miss Cranky Pants went to another convention

This past weekend, I received a pass to the 39th annual CoastCon in Biloxi, Mississippi. It's nearly identical to Biloxi's Geekonomicon, but has apparently been around decades longer. If CoastCon were one of a litter of kittens, it would be the runt. No offense. Runts are cute aren't they? Tiny con is tiny.

Anyway.

I was dealing with tremendous pain, sleep deprivation, and muscle weakness. My norm, yes, but worse than usual. I struggled greatly to get through this experience. I couldn't wear jeans or a standard bra due to my pain level (the heart monitor electrodes burned my skin in a couple of places), so I was basically in my pajamas. Not a big deal at an event like this, although I did try not to look like I just crawled out of bed. I'm not sure the effort was successful. I was hell on wheels.

I helped with the Whovian table as usual. They're great, and I always appreciate that they put up with me. Metro and the Krewe were also there, and I made sure to say hi. We were in a separate, smaller area from them for whatever reason. The folks on either side of the Who table were lovely, but I hated hated hated the location. Hated it. Occasional visitors aside, being surrounded by blank walls and poor lighting was depressing in already difficult circumstances.

Staff didn't quite have their act together. Volunteers are awesome people, but it's helpful when delegates have a system that's utilized and works consistently.

Some exhibitors' passes were $0.00, while others were charged $25.00. Neither price, for the record, is the amount we were told to expect. While it's nice that some didn't have to pay, it was pretty aggravating that other exhibit volunteers were charged, especially a higher price than we were told.

"Parking is free when you're in the right place at the right time otherwise you'll be forced to pay $5.00 a day may the odds be ever in your favor but this is not our fault so we'll continue to advertise that parking is free" is not an acceptable way to conduct business. Either it's free or it's not. Collaborate, decide, and make it happen consistently for every attendee. This makes me crazy. Crazy, I tell you.

Four decades, folks. I already know I'm not the first person to bring these issues up over the years, yet nothing has changed.

They could stand to pay attention to other cons in the region, some of which run quite smoothly. Time Fest in NOLA is a fine-oiled machine. If there are problems, I know nothing of them. And that's how it should be. The folks behind it know how to delegate and communicate with their volunteers. Everybody knows their place and does their job properly, at least as far as I'm aware. And it's less than five years old.

That's all I have to say about that.

In spite of what looks like a scathing review above, I didn't feel or act angry, only mildly frustrated under the surface. I wasn't the only one. I encountered a lot of people who were tired and had a case of the blahs in general. I made a joke at one point about the possibility of carbon monoxide poisoning. Do we need oxygen? Are the lights frying our brains? What in the world is wrong with us? We had some laughs, and I'm always grateful to see friends, so I'll try to forget the weird moments and think about the good.

A few pictures, then. :-)

This young lady's TARDIS costume was exquisite.
I had to ask her for a photo.




My adorable peeps.

RAWR!

Much love for @toadsagecosplay.
One of the best cosplayers on the coast.



Sweet K-9. His handler is pretty sweet too.

My usual TARDIS selfie. Sorry, it must be done.

I'm in no way willing to come to terms with this, but I'm getting to the point where I'm too sick and weak to handle these events, or the public or even daily life in general. I always get so mad when people are rude enough to suggest that I should give up or that I should stay home because I'm disabled, but in this moment I feel like I'm being forced to tell myself to do just that. It's disheartening.

Sleep deprivation, CKD, and HKPP are a disastrous combination. The fact that I'm mobile at all is a miracle. I don't take it for granted. But I'm going to have to seek further help. I'll discuss sleep and cognition with my docs, and I'm planning to get estimates for a power chair setup. I don't know how I will obtain one, but I know I need one and I have for a long time. I've talked to MDA about it in the past. Their resources are limited and their chairs are reserved mostly for ALS patients, understandably. Anyway, we'll talk again in May.

I've rambled on enough. Time for bed. My birthday is in two weeks. Hard to believe I've made it this far.

Tuesday, March 1, 2016

Super Tuesday

This morning.

This evening.

If you are on my Facebook or Twitter, you already know how I feel about the Super Tuesday results. I didn't hold back.

But in spite of the fact that I didn't get what I wanted, I am glad I voted. Last time I voted, my regret was so deep that I swore I would never vote again. I hated myself. This campaign has been ugly and ridiculous...what a circus...but it's something Americans must take seriously. I'm non-partisan, but I still found it important and necessary to vote for the candidate that I share the most views with in spite of the fact that I don't agree with every single idea (within reason). As usual, voters were forced to choose between a Republican and Democrat ballot today, and I know I made the right decision this time. I felt instant redemption and relief.

I just wish the results had gone in my favor, obviously.