Let's just launch 2021 into the sun (this is long!)

Hi.

I know, I know. I keep saying I'm going to start blogging again, but then I get weary and push it further back on my list of things to do with my time. This has been a very hard year. Harder than I've let on, in some ways.

I reviewed my blog and noticed that I complained a great deal. It seems that's all I did. I wish that wasn't the case, but there's no turning back now. Due to not having wifi at home, and my phone signal being wonky half the time, I haven't turned on my laptop very often. I am currently at my bro's house babysitting his pup, and his wifi is downright beastly. So here I am! I think I'm going to just...unload a little. Ok?

I'm not sure where to begin. My brain has been so overwhelmed in 2021, I chose escapism in the form of all things Pokemon just to stay alive. I no longer play the card game (that thing I showed y'all a few years ago), but dove into the anime series again, as well as several video games. It has been a needed distraction from my constant pain. Not in any way a treatment, of course. I often sit and play my games while wishing for the pain to just end me already, but I recognize how important it is to keep my mind occupied and functioning in spite of it frequently convincing me that there's no point in being here hurting this much. Some people don't care for labels and diagnoses, but I am one of those people who needs these things in order to face them. Understanding that I have C-PTSD and Suicidal Ideation in addition to my physical ailments has increased my self-awareness and assisted me in management. I can't say I manage it all well, but I am still here, so that counts for something.

As for labels, you know at age 40, I discovered that my oddly specific form of sexuality had a name: Demisexual. I blogged about it three years ago, and over this time, I have become increasingly more aware of what being in a gray area means. I stated back then that the initials LGBT didn't apply to me, and that's true, but there seems to be a lot more initials attached to the community, so I do fall under the umbrella, most specifically the A-Spectrum. In that blog from 2018, I created a scale to show that I'm not Asexual, but I'm also not Sexual. I'm somewhere in between. I have learned so much from following Queer individuals and communities on social media, and I am grateful to them for educating me. I want people to understand that in the era I grew up in, the word Queer was highly derogatory, but that I have trained myself to accept the term to describe people who use the word as their identity. When we know better, we do better, as the saying goes. It's gravely important to evolve in this everchanging world, and I would never want to offend someone for being who they are. I have a sincere and sometimes heart-wrenching admiration for many people who fall into this category.

I'm still learning, and still processing my own life to understand myself. Now knowing that I'm Demi-Gray, and recalling (just this week, I realized this!) that I have a long history (since elementary school!) of having platonic crushes on gay men, the word Queer actually applies to me also. And here I was (for decades!) thinking I was an outsider simply doing my best to be an ally.

I really appreciated this article, which talks about the asexual spectrum and demisexuality. It's probably the best thing to ever come from Mashable.

Life is so strange. I used to absolutely hate the phrase "never say never" but the universe sure loves proving to me that I shouldn't say it. Ha! I won't say it has been a simple or happy thing; defying social constructs through no choice of your own is challenging at best, horrifying at average, and life-threatening at worst. I have experienced all of the above in the past, as well as the present. All I can say is that has been and will continue to be a work in progress.

That's what we all are anyway, right? A work in progress. At least, that's what we should be. I don't understand people who refuse education and reject changes for the betterment of humankind. Is it fear? Probably. But we can't force people to practice humility, accept education, or have courage. All of those things come from within. All we can do is be an example of what's possible.

That was a bit heavy, so thanks for reading.

My physical health remains a daily battle, and I have some scary times when I feel as though I am quite literally dying. If I ran off to the ER every time I felt this way, I'd have to set up camp in there. I ride out nearly all episodes at home, with the exception of dehydration or kidney stones. The migraines are out of control again, and I've had at least three stones this year (including the one trying to pass now). I feel like I'm going to drop dead when I do laundry, exert myself around the apartment, or run errands out in public. I've fallen or passed out a couple of times lately. My muscles are volatile. Sometimes they can't move (paralysis). Sometimes they move too much (myotonia). Most of the time, they move with intense effort and pain. Some ion channelopathies are a living nightmare, and lucky me [/s], I have more than one.

Should I finally reopen the medical blog, or just keep talking about it here? I'm still undecided. If I do go back to it, you'll find the link in my sidebar along with other links.

I have seemingly endless updates to make on my art blog as well. I stopped posting there a couple of years ago, and I have created a great deal since then. I may talk to someone about building a page for me and just start all over with a new art portfolio. Acrylic pouring has been fun, and I am starting to learn manga. My favorite will always be oils, I imagine. Despite the Bob Ross fiasco currently happening due to a documentary on Netflix (it's bad, y'all), I don't regret living in Florida for six weeks learning how to paint. And I would still return to Florida again if I could...although I would invest in other Arts next time around. There is an art center in New Smyrna Beach that I'd love to visit someday. Of course I'm too sick to go anywhere, so it's merely wishful thinking unless my health improves.

My brother and I have lost a lot of people this year. In addition to COVID and other deaths, he is going through a divorce, and almost lost his foot, and now he is having surgery in a few days. Christmas is canceled. Neither one of us have the health to think or care about it. I sent gifts to my nieces and nephews (because I'm still the cool Aunt, thanks) but otherwise, bro will be recovering from surgery and I will probably end up eating waffles. We'll see.

I did have a nice Thanksgiving. I was in a lot of pain, but visited family down the road at their beautiful bay home. I got to hug my precious cousin Tyler (he's my favorite) for the first time in years. We ate great food and I talked to family about my health. In a moment of bravery, I even mentioned the SI, but made it clear that I am managing. I don't know how they're feeling about our time together, but I'm glad I went. I shared pics on social media, if you're on there.

I have a new niece due in January. Her name will be Allie Mae. Even though I'm relieved I didn't bring a kid into this world (I've been abstinent for 18 years to make sure I didn't - you're welcome!) Aunt Kelli loves babies, and I can't wait to hold that little country bumpkin when she arrives.

Maybe I should stop here. This is a good place to close. I'll be back on NYE, if not sooner.

Much love to you all.

20 Challenges for 2020

In a recent self-analysis, I decided to make a list of things I can do to make my life better and/or more disciplined. I have a long way to go with most of them, but here's what I've done so far:

I read at least one article per day. These are often from Psychology Today, but I occasionally run across articles on other sites that are worth reading and sharing. I mostly post them on Twitter as retweets. The Psych nerd in me thrives on attempting to understand people's thoughts and actions, and of course it's most important to consider my own. I get very frustrated with stigma surrounding the human condition, and would like to see ableism and other misjudgments defeated in my lifetime. I won't hold my breath, but I will speak out or share a helpful post when I feel the need to. The goal is to educate, not attack, but Heaven knows I am a work in progress, and I need continued education too! Thanks for understanding, if you're willing to. Never stop learning, friends.

(I will always be devastated that I wasn't able to achieve my college and career goals as an Educational Psychologist. Just a side note.)

I am working on the blogs. Bear with me as changes are made. You may very well not notice a difference anyway.

I'm trying to accept that sleep is going to find me at unconventional times, due to the fact that I am always sick and my body does not operate by a schedule. I was diagnosed several years ago with chronic insomnia, central sleep apnea, and sleep deprivation. The CPAP did not work, so I'm existing the best I know how like this. It is HARD. True sleep deprivation is a nightmare, and it unfortunately not only affects my physical health, but it is detrimental to my mental health as well. It triggers anxiety and suicidal ideation, so needless to say, it can make life pretty difficult. I'm doing my best to make restful sleep my #1 priority, as I acknowledge that it is vital to my survival in multiple ways.

The back brace does help sometimes. I'm trying to remember to put it on more often.

I've learned approximately 25 words in Spanish, so I'm halfway to that goal.

I canceled my membership to the Circle I mentioned a while back. I was quickly overwhelmed with the content, ended up behind, and it grew so immensely that it became dramatic. People were complaining and challenging each other, attacking the Doc's posts, and I found myself getting defensive as well (but never rude). Eventually, she made a hyper-spiritual statement about grace that infuriated masses of members, and I immediately canceled. It truly was inappropriate...I wish she hadn't said it. She did end up deleting her statement, but the damage was done. I still follow the public posts, and I appreciate how much I learned in the eight months that I was involved. I was thanked for being a founding member, and encountered no opposition.

I look forward to returning to my local therapist whenever the pandemic ends (I never dumped her, just haven't gone because of COVID). I fully recognize the need to continue therapy, and I will elaborate on some of the things I've discovered and am dealing with in a future post.

I've got work to do to be the best version of myself, but I am determined.

These books are important.

This has been my life since childhood.

I was neglected, falsely accused, mocked, shunned, misdiagnosed, abused, and refused treatment because I was a woman who hadn't achieved my doctors' sexist ideals.

I suffered greatly. The damage was done and is now irreversible.

This is my story and countless others'.

https://www.nytimes.com/2018/03/13/books/review-doing-harm-maya-dusenbery-ask-me-about-my-uterus-abby-norman-invisible-michele-lent-hirsch.html

People love to victim-blame and make ableist statements in an attempt to discount someone's injustice, especially in regards to their health, safety, and quality of life. The fact of the matter is, this is my truth, and nothing you say will make it not true. My one life, the only one I will ever have, has been permanently impaired by a patriarchal society.

You don't get to tell me how to feel about that, no matter who you are.

I hope women will continue to speak out. It may be too late for many of us, but, God willing, future generations of women will benefit from our horror stories as some doctors learn how to treat them with the respect and care they deserve.

My Big Fat 3 A.M Deliriously Sleep-Deprived Mental Health Video Blog

Health Assessment 10/7/18

I took a health assessment on one of those blood pressure, heart rate, body mass index machines in August of last year, and I remember being pretty upset over the results.

Today, I went to the same machine and did it again. The results are better now.

My weight and BMI were lower, my blood pressure was great, and my heart rate was a little better than usual. I still need improvement, obviously, but I'll never be "normal". Anyone who expects that of me is not living in reality. I frequently have to remind myself of that fact, and I will remind others if necessary. My doctors haven't really brought up my weight other than general documentation stating that I'm "slightly overweight". That's fine. The assessment's #1 tip on the right side of the screen is the same as it was last time - mental health should be addressed. Since I'm honest in answering their questions, that was no surprise. I have PTSD, anxiety, sleep disorders galore, and dealing with my failed physical health has been no easy task. Nor has being forced to exist for the rest of my life in gov't housing on SSI.

I found a low-income counseling center, and I plan to apply for financial aid next year. I don't have any money whatsoever to invest in it right now, and probably won't for a while. I know I need to take care of my mental health, and I will do what I can when I can.

As for my wrecked body, I'm at a loss at this point. I'm battling systemic disease every day, but I'm weak, exhausted, and in terrible pain. I feel like I'm losing the war, so I guess I'm going to fight until I drop dead. I don't know. What's the alternative?

"Keep Calm and Carry On" is a lot easier said than done, but I'm trying.

A quick Gastroparesis update

I've tried solid food (this is referred to as Stage 3) for the last several days with my increased medication, which was supposed to allow me to resume a reasonable diet. It somewhat worked for about a day and a half, then stopped working completely. I'm pretty much back to the drawing board as of this evening, in total misery trying to stay out of the ER.

I guess my goal at this point is to try to achieve a combination diet of Stage 1 and Stage 2. This involves liquids and very soft solids with no fiber whatsoever. All meat and vegetables are out until further notice, even low-fiber items like iceberg lettuce, which had me doubled over the other day.

I miss cooking (and eating, naturally), and after all of these years, I still miss Planet Fitness (I cried when I had to give up my membership in 2007 due to HKPP). I want to be able to eat healthy and exercise, but my body refuses to allow it and makes my life a living hell for trying. I'm disheartened and feeling defeated right now.

It's hard to feel hopeful, but I cannot and will not give up.

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.

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.

Health Assessment 8/24/17

I took a digital health assessment today, and almost burst into tears over the results. In my defense, it doesn't take much right now as I just said goodbye to one of my dearest friends. I miss her, and loss has a way of reminding us of our own fragile mortality, doesn't it?

Today is the first time I've documented my BMI in an unacceptable range, and I am currently at my highest weight. It says I am about 9 years older than I am, but it doesn't know how poor my health is so I imagine I'm physically quite a bit older.

Certain types of Muscular Dystrophy can cause significant weight gain (whereas other types result in being underweight), and the high protein/fat diet I'm on because of MD is not helpful in this regard. At any rate, something must change. I'm headed down a road that will destroy me if I don't turn around. I have to find a happy medium, or at least a medium, even if it's not the "happiest" one. Here's the plan so far:

• I put a battery back into my bathroom scale so I can use it again.
• I'll buy a food scale when I get paid so I can monitor portions.
• I will reassess my grocery list and menu asap.
• I've installed multiple apps to help me keep track of my numbers.
• I need to continue to look for distractions so I'm not cooking or eating out of boredom.
• I absolutely must get over my desire to try to cook everything and feed others (Let me love you! Eat this feast I have prepared! Literally me. I have to stop even though it pains me to do so.)
• Somehow, some way, by magic and determination, I really gotta give up caffeine.
• To be honest, I should go paleo, but I am currently kicking and screaming every step of the way.
• My body falls apart into HKPP mode every time I attempt to exercise. Even PT is a problem. This has always been the case, even in young adulthood. There is no solution for it, and I have no choice but to acknowledge that fact.

Life is sad and frustrating lately, but I know I can't let myself be consumed and I strive to "pull myself together", as I often put it, and carry on. It's hard, but I'm trying. Always.

I'll share a new assessment at the end of the year to see if things have changed.