Friday, April 20, 2018

A Better Person

I've been feeling like a thousand angry piranhas are chewing their way through my lower torso, but it was so beautiful outside, and I couldn't stand the thought of being confined to my apartment for another day, so I made the quick drive over to one of my favorite places: Bellingrath Gardens. I am lucky to live a mere 13 minutes away. I sat in the cafe and drank tea, watched the fountain, and pretended my insides weren't being stabbed by a dozen tiny samurais.

Photos don't even begin to do this place justice - especially my photos.


A fountain and a friend. :-)

The gift shop is nice. LOL

This is so cute.

In further rebellion, I went down the road to the park on Portersville Bay and sat for awhile.



This made me laugh. It said "Class of 2028" on the other side. Gotta love a kid's heart. I won't be birthing any myself, but I really love kids. They great.

While taking the pics, my muscles announced their impending meltdown, so I stopped immediately and made the 5 minute drive home, where effervescent potassium and my bed awaited.

Life has been turbulent for a long time, but it's not something I'll ever get used to. All I can do is propel myself through the day as I am able, or surrender as needed (because that's ok too, sometimes). After everything I've been through, learning to be kind to myself has proven to be a challenge, but I'm giving it my best effort. I can't help but wish I had understood 20 years ago what I do today; I would have avoided some trauma, without a doubt. I know I still have plenty to figure out about me, but who doesn't? After all, we are all a constant work in progress, right?

One of my 2018 goals is to tackle my stress and PTSD, not only for the sake of my mental and emotional health, but physical as well. HKPP and stress are sworn enemies, and I have to do whatever I can to kick my escape response to the curb. Not just for myself, but for those I allow into my strange, silly, broken, passionate, intense, unpredictable world. I think most people don't really know what to do with someone like me who has both fire and ice in their soul, but I will always appreciate those who try.

I'll keep trying, too. I'll never stop wanting to be a better person.

iPhone and Android visits are frequently not recognized by website counters. Here's why.



Well it cut me off at the end, ha. Hope this helps!

Background music (sorry it's so loud): OMAM Beneath The Skin
I can't get enough of that album. I listen to it pretty much every day.


Tuesday, April 17, 2018

Unloading the unruly thought muscle (a few pictures, too)

I just laughed out loud calling my brain a thought muscle. That's accurate, though, isn't it? Never mind. I'm a gooberhead.


My sister-in-law gave me Zollie's walking cane. Most days, I can get around my apartment without assistance, but I'm weaker than usual from low caloric intake. It has helped with my balance around the apartment. That sweet man is missed, but I honor his memory by doting heavily on his dog (who I regretfully can't find a picture of right now) every time I visit my brother and SIL's house.


In spite of my efforts at minimalism, I do still collect postcards and Pokemon cards. If you like trading or would just like to send me some (I would love you lots!), email me at ugottafriend4life@gmail.com for a P.O. Box #.


I sure miss my nieces. I was supposed to carpool to Louisiana to spend a couple of weeks with them around my birthday, but my decline with Gastroparesis landed me in the ER instead and life has been a bit of a downward spiral ever since. I hope to see some improvement so I can go soon.


I lost all of Deanna's text messages when I had to reset the phone recently. She was my only close friend in SoMo (South Mobile County), and I still feel a wide range of emotion when I drive through her part of town, because she's no longer here for no good reason. I'm sad for her kids, who were separated, most of all.



All I have to say about Penzey is right here.


I decided to reopen my Facebook to follows if you want to holler at me or lurk like an introvert (because that's OK too). Public posts involve health updates, so consider that your TMI warning.
And now...*DEEP BREATH*...I hope I don't regret this:
My NaNoWriMo
My Fitness Pal
My very quiet Tumblr
My Genealogy Blog (much more on the way soon)
Silly, sappy, angry, obnoxious, unfiltered me is here. Enter at your own risk, or something. Honestly, if you can handle me on Twitter, you can handle me anywhere, because it's only up from there. In all seriousness, I don't bite (unless you deserve it, LOL).
*RUNS AWAY BASHFULLY*



I am one of only 1000 people in the world who owns this silly calendar. John and Hank Green (aka Vlogbrothers, and yes THAT John Green) are two of my favorite guys. They are YouTubers, authors, and founders of a great non-profit organization that raises millions of dollars through their annual Project For Awesome. Nerdfighteria is a fun group of misfits, and it has been cool to see how this whole thing has grown (more like exploded) over the years. Glad to be a part in some small way.


I guess if I'm going to be forced to live on liquids, I might as well bring out this piece of fine nostalgic geekery to help. :-)


I've lost 19 pounds in less than a month. Being overweight is irrelevant. Even my Lose It app is telling me to stop this crazy train. If only I could. Losing the ability to digest solid food has been a difficult turn of events in what is already a challenging existence. Most of the food that I recently vacuum-sealed and put in the freezer, I've given away.

I am staying hydrated as best as I can, and I'm still trying to take in liquid calories, but currently I am averaging less than 300 a day. Every time I drink anything other than water, I feel like I'm suffocating. I have to fuss/pray/fight to keep what I swallowed from coming back up, while my stomach reminds me that it does not approve of any of this by twisting into a hundred Celtic knots.

The recently-prescribed medication isn't working. I miss food, but I'm trying my best to take this all in stride. Some days (hours? minutes?) are better than others. At times, I am finding reasons to smile and searching for a silver lining (I'll be able to wear my favorite pair of jeans again soon). Other times, I am nearly in tears from the pain and I feel like I am dying a gradual, horrid death.

I don't know how, but I'm going to beat this. Just you wait and see.

Saturday, April 14, 2018

Let's talk about Internal Medicine...

Hoooo boy. OK. Let me start by saying I've taken in 135 calories over a period of 2.5 days. A few minutes ago, I ate two crackers and gagged the entire time trying to chew and swallow them. I've managed one yogurt smoothie, but not the protein drinks. So things are going pretty badly this week, to say the least.

Dr. Broughton is aware of everything that's gone down over the last year with my Gastroparesis, including the fact that my former Gastroenterologist got annoyed over my high risk situation and gave me the boot (something I haven't even bothered to talk about here, and probably won't mention it again). He wasn't particularly nice, and I didn't let the door hit me on the way out. So that's that. I have no Gastro doc. Thankfully, Dr. B knows enough to deal with this himself, and he is trying his absolute best to help me. He is so great. He always tells me it's good to see me even if I'm cranky. He says I'm his best patient, and I laugh because we all know that's not true (I've been downright difficult at times). I can talk to him about anything, and I do, and he sympathizes. If he doesn't know the answer to something, he goes into the next room and looks it up while I wait. If I need a new drug regimen, he pulls up the info, prints it out, and we both read it to determine if it is ideal and safe for me to take. He trusts my word and my judgment completely, and we figure things out together. We're a team. This is how doctoring is done.

He runs a low-income/charity clinic, this being one of the most impoverished towns on the entire Gulf Coast, and he's one of my favorite humans. He has been a good friend to me, like a dad, for several years now, only he's impossible to access without an appointment due to patient volume. That's the unnerving part, but I understand.

We've tripled my chloride channel activator. If that doesn't work, I'll be upgraded to a guanylate cyclase-C agonist. I'll start with the smallest dose, and if that doesn't work, I'll try the next dose up, and so forth. He gave me four prescriptions in which to do this, and told me to let him know which one I end up going with so he can prescribe it long-term. It is assumed that since I don't have diabetes, my digestive paralysis is the result of muscular dystrophy. So, if one of these things works, it'll probably have to become part of my lifelong regimen.

I am so tired of pills, but so be it. I just hope something works. If this situation doesn't resolve, or at least improve considerably, he wants me to consider a gastric pacemaker. Unfortunately, surgery is extremely risky. People have died under anesthesia with primary periodic paralysis, and I never fail to have complications from anesthesia every time I have a procedure. These complications include not waking up for an extended period of time even when shaken, pinched, yelled at, etc., severe vomiting and dehydration, paralysis for days with residual weakness for weeks or months, and waking up too soon on the table screaming. Needless to say, I would prefer not to relive any of this. The highest risk, of course, is death by pulmonary failure or malignant hyperthermia. Let's avoid that too, shall we?

I told him about my doctor in Jackson, and he was really happy to hear that Periodic Paralysis is getting more attention. Dr. B doesn't treat Periodic Paralysis himself, but he does know what it is and he provides all of the scripts I'm on through his medication program. This quite literally saves my life. I don't know what in the world I would do without him, and I frequently worry about what will happen to me when he retires.

I'll follow-up in June unless something happens to bring me in sooner. Until then, all I can do is take on this new treatment plan, stay hydrated, and eat if at all possible. Wish me luck.


Friday, April 13, 2018

Anam Cara



I am happy to support a wonderful blog, Brain Pickings, where I first discovered the concept of the "anam cara". This book by John O'Donahue is unique and beautiful, and I'm glad to finally own it.

People talk about "soul mates", but I think everyone should have someone to connect with on a platonic, yet deep and affectionate level - a soul friend.

Maybe give it a try.

XO

Wednesday, April 11, 2018

More Books!

It took me a little longer than I planned to share the books I've read over the last few months, so I ended up adding to it several times. I feel like I'm finally at a stopping point while participating in Camp NaNoWriMo, so I thought it was a good time to post the new list. I've divided this into three categories: completed, completed series, and abandoned. Most are hyperlinked to Goodreads. Feel free to add me to your Goodreads if you want to be friends there.

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Completed:


The Poetry Hour, Volume 1
I've been trying to get back into poetry. This helped a little.

The Autobiography of Benjamin Franklin

Eat Good and Cheap by Leanne Brown

The Girl on the Train by Paula Hawkins

The Color Purple by Alice Walker
No movie on this planet makes me weep like The Color Purple. I know this is an extremely unpopular thing to say, but the movie was far, far better than this book.

The Golden Compass by Philip Pullman
I greatly disliked this story. The only point of it was to attack religion. Heaven knows I have my own issues with the church right now, but I'm not anti-religion. This definitely is, to the extreme. As I frequently say, it is entirely possible to be an atheist without being an ass about it, but some people clearly didn't get the memo.

The Black Penguin by Andrew Evans
Andrew is my favorite world traveler. I've been following him for years, so I knew when he released a memoir, I'd want to own it. He talked about growing up in a strict (in my opinion, abusive) religious atmosphere. He was eventually excommunicated from his church and family for homosexuality. Hired by National Geographic to travel from Washington, D.C. to Antarctica, he gives us his account of the adventure. He's a good writer, and I'm glad he told his story.

Lethal Licorice: An Amish Candy Shop Mystery by Amanda Flower
If you like clean mysteries for general audiences, this series is a decent choice.

Sense and Sensibility by Jane Austen
Definitely a chick read, and I admit I like the movie a lot more. This may or may not have something to do with my beloved Alan Rickman. You knew I was gonna go there, didn't you? He's my Colonel Brandon and I'll love him for the rest of my life. Just putting that out there, universe.

The Time Machine by H.G. Wells

Alice's Adventures In Wonderland by Lewis Carroll


Completed Series:


Percy Jackson and the Olympians (5 books)

I don't know if I've ever enjoyed reading a series of novels so much. I really loved them. I will say that the editing is horrible to the point that it's practically non-existent. However, the plots were strong and never failed to entertain me. I laughed and cried. Having some knowledge of Greek Mythology is helpful, but I think these books would be a fun read regardless. I will probably read them again!

The Chronicles of Narnia (7 books)

Where do I begin? I've always liked The Lion, Witch, and Wardrobe. It's a solid story. I read the book and saw the movie, and thought both were great. The prequel, The Magician's Nephew, was also pretty good (I think a movie is in production now). Prince Caspian and Dawn Treader weren't bad. But the rest...were bad. They were so bad, in fact, that when I reached the end, I cried I was so upset. Some of Lewis's decisions were offensively sexist and unnecessary. The Last Battle was a lazy, terrible ending to what could have been a strong series. I am so disappointed.

Harry Potter (7 books)

I finally finished the Harry Potter series! The audiobooks with Jim Dale were great. Very long, mind you, but well done. I also have the eBooks, so I frequently followed along. As I mentioned last year after watching the movies, I love Harry Potter far more than I expected to. The series exceeded my expectations, and deserves the hype it has received for 20 years. I joined Pottermore on my 40th birthday, and I'm an official Hufflepuff. :-)


Books I partially read and abandoned for reasons:


Shopgirl by Steve Martin: I hate to be so harsh, but this was trash. It's all about "big breasts", "wet panties", and "limp penises"...just...WTF. I wanted to bury myself under a mound of intelligent literature within 15 minutes. The book would be nothing if Martin wasn't a celebrity. It's garbage. 

Practical Demonkeeping by Christopher Moore: This is satire, but I found it utterly unfunny. An hour into the audiobook, I just wanted him to stop talking to me.


A Clockwork Orange by Anthony Burgess: I had no idea how dark and demented this would be. I ditched it when someone started getting raped, and the fact that Burgess stated that he felt excited while writing such scenes tells me all I need to know about him. No thanks.


Big Little Lies by Liane Moriarty: Sex, abuse, desperate housewives...meh. It didn't keep my attention. Halfway through, I decided I didn't care who died, how they died, or why they died.


I didn't hyperlink these, but they're easily Googleable (ha).

---------------------------------


No offense to those who suggested the books I didn't like. I always appreciate the input - I really do!


I've got plenty of other books in queue, including more non-fiction which is usually my preference. I'll share a new list in a couple of months!


2018 Twitter Art Exhibit is now live!


My postcard and hundreds of others are now available for sale
online through Pegasus Riding For The Disabled, ACT. 100% of the profits
support horse riding therapy for special needs children in Australia.

My card is here.
The entire catalog is here.
Go here to learn about Pegasus.

Thanks again to the awesome people at Twitter Art Exhibit for giving
artists all over the world an opportunity to do something worthwhile.

Tuesday, April 10, 2018

Renal/Endocrinology Clinic 4/9/2018

I'll try to keep this a lot shorter than what I wrote on Facebook.

But first, look at my absolutely adorable smiling Sylveon!

She guarded my car while I was at clinic. :-)

Whatever keeps the sanity intact, folks.

My labs look good. My kidney function is fantastic.

I'm having mild kidney stones again, so we briefly discussed that. I was informed by Dr. P that tomatoes contain a lot of oxalate, and that's bad news because I eat a ton of tomatoes. I honestly can't imagine giving up salsa, but I should consider limiting it. I also need to ditch tea once and for all if I expect to keep the stones at a minimum.

Both the phlebotomist and the nurse asked me to uncross my legs. Apparently, I am doing myself no favors regarding circulation and blood pressure by crossing my legs, and I do it constantly. I am going to have to somehow break the habit.

Dr. C was very, very kind. He thanked me for coming up there again to talk about my rare disease. He asked me several questions to determine if I was all right on a personal level, which I appreciated because I believe his concern was genuine.

He also asked a question I dread: Who brought you up here? Argh.

OK, I know it's risky, but I always try to drive myself. I cannot cope with burdening someone else with the task. It's a 7 hour round trip, sometimes 8, and that doesn't include the appointment, labs, lunch, or whatever. In other words, it's a long day. Since I ditched Airbnb, I'm no longer staying overnight in Jackson, so I drive straight there and straight home. It is hard. Not the driving itself, but simply sitting upright that long. It's painful, and always results in further muscle weakness that requires recovery time after returning home. I'm not putting anyone else on the roads in danger. I know my body. If I'm too weak (see: February), I reschedule. People may judge me for this decision, but I am hell-bent on being as independent as possible. I know it's just an innocent question, but answering it always unnerves me because I have more issues than Sports Illustrated.

Anyhoo...

He said he wants to bring awareness of Primary Periodic Paralysis (hooray!) and asked if I would come up there to be interviewed about HKPP in front of a team of doctors. I hesitated only because of my immense social anxiety, which I told him about, but I agreed that it was important. Sooooo he said he's going to call me soon to schedule this thing. I'm already scared, ha! But I know I need to help bring awareness of this horrendous systemic disease. I hope to God the nervous gibberish that will inevitably come out of my mouth does someone some good.

I have to say it's touching that my doctor looks beyond my boring test results. I don't take it for granted, and I wish I could teleport all of my HKPP friends to Jackson to see him. I went up there kind of sad, but left in a much better state. Empathy can make all the difference in a patient's life. I wish every doctor in the world understood that.

I'm so thankful mine does.


Monday, April 9, 2018

Tuesday, April 3, 2018

I am way too old for this crap.

Remember my car that was towed from the grocery store in January?



The folks who took it off my hands never registered the vehicle, so it's still in my name. And now she's sending me messages in all caps acting highly impaired by...something...asking where the car, the title to the car, and the man she was with are. As if I could possibly know where that man is.

I scratched out her last message because it included her contact info, and I'm not putting that on the cray-cray internet no matter how annoyed I am.

I blocked her from writing anything further, and went to the police with the situation. I let them look at all of the messages, and they looked at my Facebook page also. They declared me legit, and them "crackheads". I gave the officer the VIN#, license plate number, and the woman's name and phone number (which both she and the man used the day of the transaction).

Then I went to the DMV, where, thanks be to God and the universe, there was nobody in line. I spoke with one of the assistants, who confirmed that the vehicle was still in my name, but noted that I relinquished it to a woman and man (who towed it away) on January 12th. She said she flagged the VIN and tag so that if an officer runs it, it will show that I got rid of it months ago. She said that's all that can be done.

So I guess I've done everything I can do to rid myself of the situation. The officer told me that he has seen this happen before. People find old free or cheap cars to commit crimes in, then dump the car in hopes of the wrong person getting nailed for it. He said it's out of my hands and that the car is no longer my problem, and advised me not to get involved in local buy-sell-trade-free pages anymore (this happened on Facebook Marketplace, for the record). He said I'm not cut out for dealing with the crazies around here. I laughed and agreed. Lesson learned.

Poor Midori. I loved that car, and I would have simply towed her straight to the junkyard myself if I had known this was going to happen. May she eventually rest in peace.

Monday, April 2, 2018

It's time for Camp NaNoWriMo (April 2018)

April is here already. My goodness.



It's just little 'ol me and two of my good friends in a (virtual) cabin this time, and I've gotten off to a very slow start. I have a lot of ideas for short stories and poems, so I am hoping I can sit down and zone in on one at a time. I set a goal of 20,000 words, and with a word count of 0 on my first day, that puts me about 666 words behind. If I write approximately 689 words a day at this point, I'll reach my goal. Camp is laid back, thankfully, and goals are strictly personal and can be altered at any time for any reason.



I've done things a little differently this time. I am often a "planner", but I decided to go into this with only ideas in my head. This is what the NaNoWriMo community refers to as a "pantser", meaning someone who flies by the seat of their pants (a figure of speech we've all heard). I decided to visit and/or join several sites for the sake of inspiration and motivation: AllPoetry, Archive Of Our Own, Pottermore (it turns out I'm a Hufflepuff!), Arc Stories, and I returned to Tumblr. I also made sure I was following a few key Twitter accounts and Reddit subs. I'm working around the apartment and looking at things from childhood and beyond, which has been interesting enough in itself. Maybe I'll share some of my findings soon. I gave my bedroom and tiny desk a decent cleaning, so I'm ready to sit down and do this.

If you're at camp and don't like your cabin, email me with your username to join mine: ugottafriend4life@gmail.com

Friday, March 30, 2018

The Past and Future of This Blog

Thanks to Blogger's Revert To Draft feature, I just unpublished 745 blog posts in less than 5 minutes.

I've been here ten years, and an awful lot has happened in my life. Many of my older posts no longer represent me, and it was bothering me to still have all of that out there. Instead of starting over with a new blog altogether, I decided to delete a few posts and unpublish the majority. I went ahead and reverted some relevant posts too, only because they are obsolete. One hundred+ still remain, and I will continue to blog here indefinitely.

I will give a health update soon. I'm still trying to manage my decline with Gastroparesis.

Happy Friday, and have a safe weekend.

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.

Sincerely,
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

https://www.facebook.com/donate/183663099077841/

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.

Sunday, February 11, 2018

Things are bad at the moment.

I'm not going to go into major medical detail right now, but I have had a pretty bad episode, and I have been bedridden for several days. The pain was a 10 on the pain scale for a little while, as heard by my screaming and probably scaring the neighbors (hopefully they didn't hear me, but that's unlikely). I had my thumb on the button to call for an ambulance for a few hours, but I didn't go through with it.

I am, however, having to sedate myself to escape the extreme muscle pain I'm in. Most of my episodes are paralytic in nature, but sometimes my body surprises me with an episode of myotonia. This is what happened, which nearly resulted in passing out because of the location of the muscle; a vertical muscle running down the back of my head, neck, and shoulder blade. I haven't been able to turn my head since late night Friday. As of this morning, I can turn it about an inch. I have been successful in shuffling across the hall to the bathroom, and to pour water to take pills. Swallowing pills has been a battle...I'm amazed how challenging that is when you can't move your head at all. At any rate, I eventually get them down. Otherwise, I'm in a crumpled pile of agony on my bed, alternating between lying on an ice pack and a heating pad.

This episode is in addition to the bout of gastroparesis that was already making me sick. Gastroparesis is digestive paralysis, caused by a number of conditions. In my case, I assume, it's a result of muscular dystrophy (primary periodic paralysis, if you're new here). I ate a few pretzel chips yesterday. I'm drinking protein drinks today. That's all I've been able to do. My digestive system is a huge issue, and sometimes I think it's going to kill me way before MD does.

The medications I am currently on to deal with all of the above are making my body weaker (as I have complained about in previous posts...most medications aren't very safe for MD patients), but it's either take the meds right now and hope for the best, or find someone to put a bullet in my head. That's where I'm at. I'm being as cautious as I can, and it is a well-proven fact that I am safer at home than in a hospital subjected to protocols that don't acknowledge the risks of my rare disease.

In summary, some parts of my body are contracting too much, and some aren't contracting enough. If you know anything about that, you know that means absolute disaster. Thanks for thoughts or prayers or whatever it is that you do. I don't know when I'll be back, but I'll be back.


Thursday, February 8, 2018

My subconscious self is far more creative than my conscious self.

I had a dream recently. If you are on my Facebook friends list, you already read this. I just wanted to post it here for future reference.

A little girl of about 3 or 4 years old would evaporate into stardust and travel in a stream of green light to other worlds, where she would observe and intervene in their perils. I don't know if she could speak, but she had supernatural abilities in these worlds. She visited what appeared to be the Aztecs in another dimension, whose civilization was saved by her, and she was rewarded by the King with royal/god status and chocolate. I remember seeing things from her height/perspective, most specifically, adults in robes and headdress, and a large, beautiful pyramid that was green with mossy life. The girl returned to her own world, where she lived as a little girl again until she was called by the stars. The last thing I remember, she was in her mother's arms and began evaporating into stardust again, her mother crying "Return! Return!" in hopes of stopping it, but she became a stream of green light and passed through a series of glass...things...I don't know what they were...and she was gone.

That's what I posted on Facebook as soon as I woke up. I decided to do some research, and my best guess on the glass things is that they were lenses.


The lenses were rectangular, however, and there was no refraction or convergence. The stream of light simply passed straight through multiple semi-transparent objects and disappeared into the sky.

Shutterstock
This is what she looked like when she evaporated and began traveling through the lenses.

RAUL
This is almost exactly what the pyramid looked like, except it was covered in green, healthy moss. I don't remember seeing stairs, but they could have been on a different side from the one the girl was looking at (again, I was viewing from her perspective).

That was one vivid, unexpected dream, and a welcomed break from the usual anxiety dreams and recurring nightmares. I'll take more of that, please.



© 2018 All Rights Reserved

Friday, February 2, 2018

Why I Invested In A FoodSaver


I received an Amazon gift card for Christmas, and used it to partially pay for a mini Instant Pot. The Pot broke upon second use, and I sent it back to Amazon for a refund. Instead of getting a replacement, I decided to buy a FoodSaver instead (the small $59.00 model).

Reasons:

I've been tired of throwing out freezer-burned food, especially leftovers and frozen vegetables. It pains me to waste food, and I want to reduce the occurrence. Freezer bags, plastic wrap, and storage bowls, even giving my best effort to remove the air, isn't working.

I've been hoping to find a way to use fresh out-of-season produce year-round.

I've been wanting to get away from tomatoes in aluminum cans.

I've been wanting to save money by buying in bulk, but only cooking for one makes this problematic. Vacuum-sealing will allow me to portion properly, so I'm not overeating out of guilt.

Proper portioning will help me lose weight (something I still need to do).

Because I really dislike eating the same thing over and over, being able to portion and freeze meals will give me the variety that I prefer.

Throwing out leftovers from the fridge is unacceptable. Freezing it for reheating later is the solution.

The bags are BPA-free plastic and far less waste than throwing out plastic bowls. (Let's face it, nobody wants to hand-wash those slimy bowls. They never truly get clean enough, and they smell and stain. I always throw them out.)

I will no longer have to buy multiple bowls and bags in different sizes, and be stuck using products that are often way too big for what I'm trying to freeze. I will be cutting my own custom-sized bags.

I can finally store spices and fresh herbs in the freezer to prevent early expiration. I tried this last year, and even my herbs went bad from freezer burn. It was frustrating!

FoodSaver claims that food lasts 1 to 3 years in the freezer with their system. I will be testing that!

Vacuumed bags take up less space in the freezer, allowing for more efficient freezing.

I will have the option of sealing important belongings during a hurricane, if I choose.

Owning a vacuum-sealer should resolve all of the above. Ultimately, food saved is money saved, and it will eventually pay for itself. Hypothetically, if I previously threw out $8.00 worth of food per month, it is paid for in a year, including the cost of bags, with no food waste.

What I've done so far:

Yesterday, I vacuumed-sealed a quart of root vegetables, a pint of stir-fry peppers and onions, a tiny roast, and a large beef stew prep that will go straight into the crock pot when I'm ready.

Today, I'll experiment with cooked food. I'm slow-cooking chicken for future tamales. I also plan to prep sweet potatoes for Parmesan fries and will seal them in small batches for cooking later.

It may not sound like minimalism to have another appliance on the counter, but looking at the big picture, it absolutely is. Waste and plastics are reduced; space and money are gained.

I'll keep you posted on how this goes!

Friday, January 26, 2018

Say hello to my little friend!



My aunt and uncle found out that I lost my car, and are loaning me one of theirs. I cannot express my relief! Mega thanks to them always for caring about my perils.

Systemic disease is kicking my butt, but I look forward to feeling well enough to hit the road again. I have errands to run, doc appointments to keep, and nieces to visit. God willing.

XO

Thursday, January 18, 2018

Adventures in Minimalism 1/18/18

Winter cleaning and organizing is underway.
Here are a few things I've done over the last six weeks:



I tackled the kitchen junk drawer.
Photo 1: everything out and on the stove.
Photo 2: a drawer that's "Tuff & Tidy". :-)





I cleaned and organized my largest closet.

The hangers are turned backward to show myself what I'm wearing
throughout the year. What isn't touched in 11 months will be donated.
I own way too many dollar store shirts, but I do seem to wear them!
That's a huge pillow on the shelf. It says so right there on the package.
Except it's not. Wal-Mart is a capitalist realm of lies and deceit.
(See you soon, anyhow, Wally World. Whether I like it or not.)



Welcome to my basic white girl bathroom.
Someday, I'll have matching towels. But not today.
Today, I just need my entire world to be made out of that squishy bath mat.
(The bathroom closet is currently in progress. I'll post a pic of it someday.)



I made a pillow for my butt.

I have owned this Care Bears fabric for over a decade.
I finally put it to use and covered a stack of foam squares.
It's duct taped underneath because I'm a loser who can't sew.



I sorted papers, which seems to be a never-ending task.

I've got a problem with paper. I can't seem to get rid of it.
I don't think I've reached hoarder status, but it's a minor flaw.
(As opposed to my major flaws, of which there are many.)
I seem to constantly find random bags and baskets filled with
various papers and I wonder how it happened, as if I have pesky
gremlins stashing paper around my apartment after midnight.
Alas, the gremlin is a prematurely-aging crazy lady with paper issues.