Tuesday, March 20, 2018

Not how I planned to spend my birthday week.

I spent the night under observation after a horrendous day with Gastroparesis. I had a contrast CT, blood work, and referrals back to Primary and Gastro physicians.

I'm home and pretty much camped out in the bathroom until this purging episode decides to resolve. They gave me some fluids to combat dehydration, and a shot of Bentyl to try to calm my stomach muscles, but this remains an ongoing situation for now. I'll get a three-day script for Zofran filled sometime today, which will hopefully make a difference.

Thinking forward, it looks like I was on the right track with a liquid/soft diet, but I made the mistake of trying solid food again, which caused a lot of problems. I may have to permanently halt the Muscular Dystrophy diet and switch solely to a Gastro diet to try to manage this, and just hope my HKPP doesn't get worse as a result. As I mentioned a few years ago, the usual prescribed medication, Reglan, is a major no-go due to triggering serious periodic paralysis complete with respiratory distress. So I'm sort of up a creek without a paddle, as I am with a lot of conditions that I live with.

My late MawMaw used to have a fun cup holder that said "THIS IS NOT THE LIFE I ORDERED".

I could not possibly concur more.

Saturday, March 17, 2018

Saturday, March 10, 2018

40th Birthday Cancer Fundraiser


For my upcoming 40th birthday, I would like to raise $200 for the Leukemia and Lymphoma Society. The money goes directly from you to them. I am using the Facebook platform because that is where most of my friends and readers are.

Thanks so much for your consideration.

Friday, March 9, 2018

Reading, Writing, and Art (March 2018 Update)

I've read or listened to 50 books since November, not including books that I started and abandoned (more on the blog soon). I'm currently listening to #51, The Time Machine by H.G. Wells.

Now in queue:

A Clockwork Orange by Anthony Burgess
Sense and Sensibility by Jane Austen
Pride and Prejudice by Jane Austen
The Complete Works of Emily Dickinson
The Hobbit by J.R.R. Tolkien
Journey to the Center of the Earth by Jules Verne
A Wrinkle In Time by Madeline L'Engle (I'm giving it another chance; only made it through a few chapters the first time)
The Black Penguin by Andrew Evans
Lethal Licorice: An Amish Candy Shop Mystery #2 by Amanda Flower

That will bring my total to 60 books. My goal for the year (Nov 1 '17 to Oct 31 '18) was 52, so I guess I will either take a long break or increase my goal.

No art happening. I can't get through the anxiety. I'm considering ditching my entire art supply closet and not thinking about it anymore. I would try to complete works in progress first, if I decided to go through with that. I lie in bed and think about all of the art I want to create, but when faced with the task, the room is suddenly on fire and I want to jump off of my non-existent balcony. I'm in no way joking about that. I realize my pain level, limited muscle strength, and poor motor skills are a factor also, I dare say, far more than my brain. I'm pretty torn about what to do.

Camp NaNoWriMo begins April 1, and if I can get my head together, I'll switch to writing mode. I need to add content to The Children of Mossy Hollow, but I'm saving that for official NaNo in November, so I am planning some short stories and poetry for camp (which I believe will go swimmingly; at least I'm optimistic about something).

I changed my bio on the sidebar. It's much shorter and to the point now, kind of like my temper these days. LOL

I shouldn't laugh about that, but sometimes, it's all I can do.

Wednesday, February 28, 2018

Rare Disease Day '18

I have systemic disease: conditions that affect multiple systems of the body.
I'm going to make this easy on myself and share links from Wikipedia.
The references are valid, so don't worry too much about misinformation.

I may have forgotten some things, but I tried to share as much as I could.
I'll reboot the medical blog soon. I get tired of talking about it sometimes.

At any rate, if you have questions or concerns, you may email me.
I won't promise a quick reply, but I'll eventually read and address it.

I've learned you never know what someone is really going through.
We only see the surface most of the time, so it's best not to be judgmental.
Thanks to those who bring awareness, and to those who stand by us through it all.

Tuesday, February 27, 2018

Hats Backwards, Trainers!

It's International Pokemon Day!

Tuesday, February 20, 2018

You're not the only one who noticed.

I have also noticed that I blog more often, not less often, when I'm sicker. Laptop computer for the win? It's the fact that I can't get up and out and do other things, I suppose, so I sit here and type.

I am doing better, though. I am still having a great deal of head-to-toe weakness and muscle pain from the myotonic episode of doom, but I am functional enough to drive to the grocery store and buy a sandwich (which is what I did today), so that is certainly an improvement over a week ago. I will need to improve more to be able to sit up long enough to go to my doctor appointments in Jackson. Right now, the window of functional time is small. But at least it's something.

No changes, therefore no further comment, on the gastroparesis.

My medical blog has been on hiatus, but I do plan to catch up on it soon. Apologies to my readers over there who check it regularly. I do have some things to share, but you'll probably see a lot of repetition as I will talk about some of the stuff that you've already read on this blog. I originally wanted to keep the two blogs separate, but it just hasn't worked out that way because this is my "life" blog, and my life resolves around my battle with systemic disease. That's just the way it is.

One of my blog readers passed away over the weekend. We were online pals for a few years, but he said some things a while back that I considered way out of bounds, and I cut communication. He still read the blog, to my understanding. I am truly sorry for his children, and I offer sincerest condolences. He was far too young for this to have happened.

I'm tired of people dying in general. I think my brain is shutting down, in a sense, because tragedy is happening so often that desensitizing is the only way to cope. It always comes out one way or another, though. Either I weep over a TV commercial or I curse at the self-checkout or something. I'm a HSP - Highly Sensitive Person - so it will always come out even if it's a delayed or atypical reaction.

I don't feel like sitting up anymore, so I guess that's all for now.

Sunday, February 18, 2018

Improving (This post involves TMI)

I'm still in terrible pain, my head and shoulders remain heavy, and muscle spasms come and go. Otherwise, I'm doing a little better.

I drove across the street to the grocery store a couple of days ago to pick up bottled water and a few other things (I almost barfed from the pain), and I've done a little bit of walking around outside (the weather is a beautiful 70 degrees during the day right now, which helps immensely). I'm still living on ibuprofen and the occasional stronger pain med (a PRN prescription that I've had for years and almost never use). I'm eating pretty regularly, but my digestive system is still being a jerk and I'm having to medicate heavily in that department to force things to move in the correct direction. That's not doing my HKPP any favors, but HKPP is most likely the reason it's happening to begin with, and potassium isn't correcting it. I've upped my Magnesium Citrate dosage in hopes of finding some kind of balance. Believe me when I say nobody wants to be on Mag Citrate, but it's a daily supplement for me and has been for a long time. My acid reflux disease, which I've had more than 20 years, is also at its worst thanks to Gastroparesis. I awoke from a dream at 4 this morning where I was at the grocery store mulling over which antacid to buy, so even my subconscious is tired of this crap. LOL

I'm so cranky and exhausted from this misery, but trying to move forward and get better.

Thursday, February 15, 2018

An Update

I'm mostly upright, but weak and in a lot of pain.

I've taken a shower, washed dishes, put something in the crock pot, and even gone outside for a walk a few times. It was so miserable, I thought I might pass out from the pain. My upper body is twice as heavy as it used to be. I feel very "top heavy", as if I'm trying to balance a giant bowling ball on my neck and shoulders. Unfortunately, the giant bowling ball is just my big 'ol head. I'm still nauseated, but trying to eat regularly and take my medications.

I've got a long way to go before I can consider myself back to my (quite frankly pathetic) version of normal, but I look forward to getting there. Because there is better than here.

I rescheduled renal clinic from early March to early April. Hopefully, I'll be up to traveling by then.

I've been passing the time by watching Pokemon TV and the Olympics live feed online. I'm obsessed with both. I'll return to my reading marathons after the Olympics. I have a lot of books to talk about soon; I've torn through quite a few since the last book post I wrote.

Facebook still makes me want to scream. Twitter is a realm of insanity as always. I occasionally remember that I have an Instagram and post something. I forgot about Tumblr and Words With Friends (until now, actually). I joined Reddit; still on the fence about it.

This goes without saying, but I'm really freaking tired of mass shootings, and I'm really freaking tired of lawmakers offering thoughts and prayers, accepting big donations, defending weapons of war, and doing absolutely nothing tangible about the crises of our nation.

I am in far too much pain to sit here anymore. Talk to y'all soon.