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

Monday, March 26, 2018

Health Update 3/26/18

Zofran is my BFF right now. This has been a rough week, but it feels like my digestive system is trying to wake up. I hope I'm right, but I'm remaining cautious. I eventually want to incorporate baked or braised seafood and chicken in very small amounts, especially in soups, but I don't plan to start that today. I do have a future meal plan lined up for when I am ready to transition.

It does appear that I will have to give up beef, pork, and cheese indefinitely. I've done enough research to know that all of the above are difficult to digest, and cause a lot of problems for Gastroparesis patients. I'm also going to have to break up with my boyfriend, Coca-Cola, once and for all. I'm already aware that I shouldn't be drinking it anyway, so save your sermons. I do plan to try a few soft, fat free cheeses to see if I can tolerate them, but it'll have to wait for now.

I ordered two cases of EAS Myoplex Carb Control from Walmart.com. They're Fed-Exing it to me, so I should have it all by Wednesday. Those shakes are pretty expensive, but my current liquid/soft diet has turned out to be too high in carbs (I've been monitoring this on My Fitness Pal over the last several days). EAS's Carb Control line is perfect for me, and they taste ok. If I find that I improve over the next couple of weeks on my lower carb liquid/soft diet, I'll do my best to budget in the shakes so that I never run out of them. I can't imagine them not making a difference.

In related news, my Lose It app informed me this morning that I was awarded the "Lost 10 pounds" badge. Needless to say, I don't recommend illness as a weight loss method.

In Muscular Dystrophy news, I'm still having random spasms, but nothing like the myotonic episode of doom from a few weeks ago. I do remain weak and haven't fully recovered from that, with my head, neck, and shoulders feeling heavier than they used to (and they were heavy before, thanks). I hope that with time, the heaviness will improve. I continue to push myself in ways that single people must: cleaning, grocery shopping, etc. and it is a struggle every time, but I survive and crash into my bed until I can get up again. That's all I can do.

I don't know if I'm going to make it to Jackson in a couple of weeks. Driving isn't really the issue, it's simply being able to sit up that long. Currently, I'm in bed most of the day, and I have to stay near a bathroom. But if I'm feeling better by then, I'll go.

That's all for now, I suppose. Fingers crossed that my digestive system kicks in again. And as always, I appreciate the prayers and well wishes.

Friday, March 23, 2018

The Big 4-0!

Well, it wasn't easy, but I made it! As I write this very sentence, the clock struck 9:29 A.M., and I have been an official member of society for forty years.

Mind you, I'm writing this in between Zofran-induced naps. I've been really sick this week, and this year, for that matter. If I want to be super honest, as ridiculous as it may sound, the last 30 years have been downright difficult. But I'm here, and that's a testament to my determination. I am usually hard on myself, but today, I acknowledge that I am a fiery, tenacious beast. Hear me roar, albeit, softly.

I've been thinking for awhile what I would write about today. I don't particularly feel like sitting here blogging in my current condition, but ninjas gonna ninj, so here I am.

When I was a kid, I remember a relative having a complete meltdown over turning the big 4-0, citing that she didn't want to "start looking old". My response to my mother later was that I hope I don't feel that way when I turn 40; I want to be grateful I made it that far. She agreed, and to her credit, was genuinely upbeat when her own 40th birthday arrived.

The truth is, I don't really like being a part of this chaotic world, but I AM glad I made it this far and I want to keep living as long as possible. The fact that I drove my miserable barfing backside to the unhappiest place on Earth - the emergency room - this week is proof enough that I'm not looking to croak anytime soon. I'm very matter-of-fact about my existence, and pretty much everything else. I don't have a problem saying that I'm in a lot of pain and that things suck more often than not, but that I'm thankful for whatever good I encounter in life and I'm doing the best I can to be a part of that good in return. I don't know how anyone can ask anymore of me than that.

I figured there is no sense in reflecting on four decades of illnesses, failures, or limitations. There are plenty, but they're going on the back burner in favor of the following gratitude:
  • I kept my promise to my childhood self. I made it to 40, I don't care if I look old, and I'm not having a meltdown.
  • I live in a country that is deeply flawed, but it allows me to make most of my own life choices.
  • I am responsible for myself, and no one else. I wish I could be a real help to hurting kids, but I am so so so relieved that I didn't have children. These horrible genes die with me, baby.
  • In spite of my anxious introversion, I have friends and family who care about me.
  • With bravery and familial support, I made one of my dreams happen when I ran off to Florida and became a Certified Bob Ross Instructor. It's the craziest and coolest thing I've ever done, and it is the only moment in my life that I would rewind and live again if I could.
  • Laughing till I hurt over stupid things on social media.
  • Not counting neighbors who share a building with me, I finally reside alone. I love being alone more than I can express, and I could not be more thankful for any independence I have in my condition.
  • On days I'm able to drive, I have a vehicle that gets me where I need to go.
  • I'm not starving and I have a roof over my head.
  • Thank you to the people who took my condition seriously and kept trying to figure it out until I had an answer and treatment options. We won't talk about the many who didn't.
  • I may be the weird Aunt, but at least I'm an Aunt, lol. Those babies own my heart.
  • I appreciate every person who opened their home to me over 25 years when times were hard or for any other reason.
  • My students were the best. I'll never forget everything they did for me.
  • After years of wishing and what-ifing, I went to college and studied art for a year. It was so hard, it nearly killed me. And even though I am not an artist today, it was still worth it.
  • I don't envy a single person I know. If you're happy, that's fantastic. Congrats! But I don't want your possessions, your relationships, or any other facet of your life. I have zero interest. It's all yours!
  • Empathy is both a blessing and a curse, but today, I'm glad it's a prominent part of my soul and I'm glad others have shown it to me as well.
  • Happy Birthdays from all over the world every year.
  • Being more educated than my degree (or lack thereof) implies. I have OCD and the World Wide Web to thank for that. No one can take what I've learned away from me.
  • Celibacy is fabulous, and I couldn't care less who doesn't agree. The end!

OK, one more thing: you all put up with me. I mean it...God bless ya.

Your Favorite Zofran Zombie Ninja Blogger

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.