I have rare disease, and I’m not sorry.

It’s rare disease day. I’ve talked about it for years, and while I believe I have taught some people a few things, I don’t see any evidence that it matters so I'd rather be shot than go though another rare disease day.

People lack self-awareness and empathy. All my life, they have acted like the struggle of chronic patients is a personal attack on them and their idealism. It’s prejudice, nothing more, nothing better. They’re just plain prejudiced against the sick and poor, and are ashamed they are forced to encounter someone they can’t fix or control. I don’t care how the hell they were raised or trained; it’s a moral failure that I will never accept or respect.

Pain outweighs everything else in my existence. When it finally ends and I am permanently at rest, I will be better off. I don’t care how stupid that sounds.

I don’t care. My new year resolution is to stop caring so much. If you are embarrassed that I learned how to publicly advocate for myself to stay alive, tough luck. If you think I’m “negative” for battling serious illnesses and talking about it, leave and never come back. If you’re a user or abuser who is part of the problem, die.

I have rare disease. My life is ruined by it. I’m angry about that and at all of the people who failed me. I have every right to be, and I’m not sorry.

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.

March is here already.

And I'm behind on my blogging. I didn't start the year out too well where that is concerned. There is so much to write about these days that I'm overwhelmed, and I end up not writing anything at all. Mostly, I want to improve upon my medical blog and genealogy blog, but I keep dragging my heels. I will eventually tackle the tasks.

I've been extremely tired and in a lot of pain, and pushing myself to the point of physically crashing. I'm struggling with achieving a reasonable balance in nearly every facet of my life, and while balance is something I will always strive for, what I only want to do at the moment is sleep.

I returned to counseling today, and it amounted to a rant session about my limitations and my inability to deal with peers who've crawled out of the woodwork to support the terrible current events that have taken place over the last two years. People I've grown up with, or are related to, or have been friends with for years are suddenly bigoted, and in some cases, cruel. That has been a difficult adjustment, and it has made me question how I ended up in their realm. Most of the answers are obvious: was born into the family, grew up in that town and went to such and such school, and share certain general interests. In other words, we were compatible by blood or proximity. In a few rare cases, people simply changed, or they always carried such views, but hid them until now because they feel more comfortable letting their ugly flag fly. As for what to do with them, there's no real answer. I've already cut my Facebook down by hundreds, and I've ditched the majority of the family. I've learned through studying minimalism that it's not just about stuff. It's about people too, and how they affect your quality of life. In math terms, you can ask yourself the question "Is this person adding, subtracting, multiplying, or dividing?" I've seen some people even make a written list. Remember the old slam books from junior high? They were terrible, but not completely unuseful. When struggling with someone's presence, weigh their pros and cons. It sounds like solid advice, but it's a whole lot easier said than done.

Back to my limitations, I've been doing what I always do, and that's push myself until my body crashes over and over again. I live in HUD housing, which has to be kept in acceptable condition, and there's nobody here to do that except me. Even if there was someone else living here, I wouldn't be sitting around expecting them to do everything. I have to be able to operate my body. I have standards for my living conditions in addition to that, and I try my best to achieve it for the sake of my own sanity. I've never been diagnosed with OCD, and I don't think I qualify, but if the diagnosis ever arose, I would do nothing more than shrug my shoulders and say "Fine with me. At least my body isn't gross and my apartment doesn't look like garbage." And that would most likely be the end of the conversation, because it's my body and my apartment, so thank you, that is all.

My counselor suggested I find a local service for people with disabilities that offers to help me with cleaning and shopping. Except there isn't one. I live rural. None of the grocery stores that I shop at deliver here. There's also no restaurant delivery (not even Pizza Hut for heaven's sake), and the only people who offer to clean are locals who are unlicensed and looking for extra money. I'm not desperate enough to let a stranger in here around my medications and inherited collectibles (the latter will eventually find new homes, but that's another story for another time). I can't afford maid service. Family is not an option.

So there's little 'ol frustrated me with the frustrated muscles. I'm doing what I can, and overdoing it often, and paying the price. There's nothing normal about living with systemic disease, and it could be a lot worse, but it's not something that I can bring myself to accept, and that's where my head comes into this. I know how to acknowledge that this is my life. I don't have a choice. But to accept it is a step that I can't seem to reach. I don't know if I ever will.

I have no solutions, but I will keep trying to make it day by day, and continue to do the best I can with what I've been given.

I want to talk about someone who died ten years ago.

http://blog.al.com/live/2008/12/dentists_no_need_to_fear.html

My stepfather's biological son, Ryan, age 29 and a single father, had a toothache that he was too scared to address. He had a fear of needles and refused to go to the dentist, even when his tooth was noticeably infected and his relatives begged him to deal with it. He came home from work one day with a swollen jaw, said he couldn't hear out of his ear, and went to the bathroom. He didn't come out. The infection had reached his brain, and he was diagnosed with a massive stroke. A week later, he was removed from life support, and his 5 year old son was orphaned.

I am telling you this to bring awareness that these things really happen, and they happen more often than you think. I don't like going to the dentist either, or any other physician for that matter, but listen: you have to take care of the damn holes in your head. They can kill you, and don't think for a second that it can't happen to you, because my 29 year old stepbrother certainly didn't think he would die a horrible death and leave his child parentless. Ryan's death was a front page headline, and dentists in the area made a plea to the public to let them help. There are ways to deal with this kind of situation, including sedation with prescription drugs, which could have allowed Ryan to get the care he needed. If he had been willing to talk to a dentist about his fear, he'd still be here. Bottom line.

It has been a little while since I've made this public service announcement, but I assure you I had not forgotten. Seeing him unresponsive, connected to tubes, with a hose coming out of his brain and a horrifying intracranial pressure of 84 is something I will never be able to erase from my memory.

If you have an infection, please take it seriously. I know the dentist is expensive, but many of them accept monthly payments, especially for potentially harmful scenarios like this. Beg, borrow, whatever you have to do to get the money. Cry on the dentist's doorstep. The worst they'll say is no, and there are others out there who will say yes. Communicate, or find someone who will speak on your behalf. Just go, please.

Thanks for reading.

Proud to be one of Annie's kids

I just received word that family friend and town legend Annie Rogers passed away at age 104. What a legacy. She was the most loving soul, and considered everyone "her kids". She's one of my first memories as a toddler going into her store, Grand Bay Drugs, with my brother and mother, sitting in the shopping cart holding onto my Anne Murray album cover for dear life because it was my security blanket. Mrs. Rogers absolutely adored Layton and me and always stopped what she was doing to give us a big hug and kiss. Here is a video of her from ten years ago. I stood at that register with her countless times talking and reminiscing. She will be greatly missed!




We know how much you loved all of us, Mrs. Annie, and we sure loved you.
Rest in peace, my lifelong friend.

Families Belong Together

https://simple.wikipedia.org/wiki/Fascism
http://www.dictionary.com/browse/fascism
(the references on the small signs, if interested)

On June 30, while on a road trip to visit family, I stopped in Covington, Louisiana to attend a Families Belong Together rally, an event that was held all over the U.S. I made a giant sign and sat on my walker seat at the St. Tammany Justice Center, where approximately 200 people gathered. Live protests are rarely something I've done for various reasons, but I'm glad I was able to exercise my constitutional right to do so on Saturday. It did my heart a lot of good, but I know this doesn't resolve the situation by any means.

Children should not be locked in cages, separated from their parents, and lost by our heartless and incompetent government for any reason whatsoever. It is sickening and unacceptable. It is what the Nazis did during WWII, and I will not sit silently while I watch my democracy die in darkness. Racism, cultural oppression, child neglect, and cruel opposition of basic human rights are not patriotism. This is fascism, and I refuse to call it anything less.

I'm spending the week with my little brother and his family. I will resume health and other updates soon. Thanks always for being here.

Family Loss

My sister-in-law's dad, the sweetest man you'd ever meet, told me on Thanksgiving that he had adopted me as one of his girls.

Last night, he collapsed and died.

Zollie will be missed terribly, and I was honored to be his "adopted" daughter.

2017 Goal: MawMaw's Gumbo

If you've been following long enough, you know one of my goals for the year was to nail my late MawMaw's seafood gumbo. I decided today would be the day. You should see my kitchen right now...total carnage...but the gumbo is darn close to MawMaw's, and may very well be spot on tomorrow after the flavors mesh a little more. I'm happy to finally cross this off of my bucket list.

I miss you MawMaw, and I hope my attempt made you smile.