I loved Betty so very much.

 

She was a champion humanitarian and everything in this world I wish to be. I loved her so much, and I’m heartbroken beyond words that she is gone. My last tweet to her was two months ago, telling her I loved her and was thinking about her for no particular reason. I haven’t even been able to cry so far. I’m just numb.

I have a ticket to her 100th birthday celebration film, purchased over a week ago. Fathom Events stated they will continue with their plans, so I will be there.

My usual NYE blog is pushed to tomorrow.

My 4th Niece, Allie Mae :-)

 

Christmas Photo Dump

I'm trying, folks.

My jaw hit the floor when I saw this print. I had to have it. Please, with all that's going on these days with art theft and harmful NFTs, take the narrow road and support real art and real artists. Thanks.

I was gifted this coloring book. I'm learning how to draw Manga and thought it would help. If you haven't seen the Eva series, it will wreck your soul, but it's mind-blowing, especially if you have an appreciation for Psychology like I do. Fair warning, it is mature content. If you watch Neon Genesis and don't want to protect Shinji Ikari with your entire being, you are truly dead inside.

I decided to stick with desserts this year for Christmas. I gave them to neighbors.

My late uncle's holiday tree is being well taken care of.

I didn't do too bad of a job with the tree. The presents fit nicely. The only one I wrapped is a Nintendo Switch game called Shin Megami Tensei V. I've been watching voice actor Casey Mongillo play it on Twitch (they voice the protagonist, named Nahobino) and it is a gorgeous game. I had Amazon gift cards accumulated for donating blood, so I was able to redeem them to buy it.

Absolutely stunning print of N and Reshiram from Pokemon (same one I showed above)

Scorbunny <3

You know you're chronically ill when you buy electrolyte supplements for Christmas

Pound cake with cream cheese icing, for my bro and his family

I still have a lot to talk about regarding my health and personal life, but it will have to wait a few days. There's a lot going on.

 

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.

Heartland Tornado Relief

The photos, reports, text messages, tweets...they're all devastating. 

Let's do what we can to help.

Organizations local to Kentucky that are helping

https://www.wymt.com/2021/12/11/here-is-how-you-can-help-western-kentucky-tornado-victims/

World Central Kitchen is on the ground providing meals. They do great work worldwide. Remember to designate funds toward heartland tornado relief.

The State of Kentucky has their own fund set up, if you wanted to go that route for some reason. This is not an endorsement. https://secure.kentucky.gov/formservices/Finance/WKYRelief

PLEASE GIVE BLOOD IF YOU ARE ELIGIBLE!

As a regular blood donor I am aware of restrictions that prevent so many from donating blood. It is imperative that you consider it if you are able to give. Thanks!

More info:

https://google.com/amp/s/wfpl.org/heres-how-you-can-help-tornado-victims/amp/

Operation BBQ Relief is already there as well. Great organization, and I’ve known a few people who have personally volunteered with them in the past. They have a gofundme set up here.

The usual nationwide disaster non-profits are on board (Red Cross, Salvation Army, Direct Relief, etc.) but I don't have a lot of details to share. By all means, if that is your preference, find them online.

If anyone has additional info on how to help, feel free to send it my way.

Internal Medicine and Genetic Reports

These photos may upload badly, but let's see.

The genomics lab sent me reports on certain conditions in which I am considered high risk. I printed them out and gave them to Dr. B yesterday, along with my raw data for Periodic Paralysis (previous blog post). He accepted it all with interest, recognized the validity of the gene.iobio database, and promised to upload the reports to my chart. We also discussed a high impact variant I am showing in gene COL6A3, which is Collagen IV Alpha III Myopathy. He agreed to ask his staff to try to find a Rheumatologist who accepts Medicaid. I won't hold my breath, but I appreciate the effort. COL6A3 is a disorder where the collagen which surrounds muscle cells is broken. This would explain some of my symptoms if I can get a clinical consult to address it. Considering many people in my support groups have both Periodic Paralysis and a collagen disorder (in many cases, it is diagnosed as Ehlers-Danlos), my chances of having both are pretty high, in my opinion.

I want to make clear the reports below are not a diagnosis. They show mutations in my DNA that support a higher than average probability of having or developing the condition.

Next year, I will likely have another Echocardiogram and my first Mammogram, if insurance OKs it.

I also expressed to Dr. B how much pain I'm in all the time. He prescribed a pain medication for temporary use, and Medicaid denied it. It's unfair that someone as ill as I am, with no history of addiction, is being refused a temporary script for pain. Insurance companies insist on demonizing opioids, and I understand to some extent why they are cautious, but patients with serious and painful chronic conditions are being discriminated against to the point that they are dying by suicide. I don't plan to be one of them, but I'm also not making any promises. I shouldn't be debilitated, sometimes vomiting from the pain, and refused treatment because some rando who doesn't know me is paranoid that I'll become a law-breaking addict. It's outrageous. This country is unbelievably cruel.

That is all I have to say for now. I will return soon.

Woes and Plans

While I have the laptop on me, I'm going to ramble about what's coming up this week.

I see Internal Medicine on Wednesday. I have quite a bit of data printed out from my genome testing to take to him. We'll see what he says about it. Mostly, I need refills of my HKPP meds, and some kind of relief for the muscle pain that's trying to take me out. I want to invite someone to shoot me. It's not tolerable.

My teeth have been a problem this year in addition to my muscles and kidneys. I went to the health department dentist (because I'm extremely poor and also yes the health department has a dentist) where I went through a couple of months of antibiotics and ibuprofen, and eventually the pulling of a tooth which was not the tooth originally planned. Instead of my back right molar, he pulled one closer to the front, in smile range. This has been very difficult to accept, but I'm trying. The pulling took an hour and a half, and I nearly passed out twice. It was traumatic. I didn't ever want to go through it again.

But now, here I am with a fever and my entire right jaw killing me. Just shoot me already. I will never understand why my life is one damn crisis after another, but I'm really fed up. It's World Mental Health Day, and I don't feel like talking about it. My awareness, if I even bother, will have to come later.

Tomorrow, I'll call the dentist for an appointment. Where the money is going to come from, who knows. But I'm going to call and make a stupid appointment, and I'm going to go to Internal Medicine a couple of days after that, and it will either all go well or all go to hell. God only knows.

I'm tired of this.

So the great social media outage happened the other day. I didn't care as much as others did about it, and I decided to shut down a few pages. Someone keeps trying to hack my Instagram, so it's going bye-bye. I have no use for it, and the only reason I stayed as long as I did was to follow certain people. I've decided I'll live without them, and maybe we can reconnect at a later date.

I deactivated my private FB account, probably for good. Most of the people there care very little for me, some to the point of devaluation and disrespect. It's way past time to leave them with their toxicity and stop caring. A few people from that account will be followed elsewhere, quietly.

I am slowly deleting photo albums from my main Facebook account. I read news articles about the possibility of our data and content (billions of us) being sold on the dark web. I won't bother sharing any of that here, but you can see it on my FB or Google it yourself. At any rate, I know I'm not important in the least, but I made sure to secure my PayPal and remove it from Facebook, and now I'm removing selfies and groups. I am still talking to friends on my timeline through statuses, but that's probably the extent of my Facebooking from here on out. My genome testing stuff will not be uploaded to Facebook as planned. I will find another place (probably here) for all of that.

I will set up a tiny, legal shop soon for my art. I'm highly restricted by the amount I am allowed to sell, but I am being cautious and making sure I don't break any rules. I get that I'm owned by the gubment (misspelling intended) and I am a lawful hussy, to the point of vigilance. More info soon.

I wish COVID would GTFOOH (abbreviated for your comfort...if you know, you know). It is exhausting. People are still dying. I want this to end. My antibodies are still going strong, as per my blood bank who tests it when I donate, but I will seek a third vax at the end of the year. I'm still wearing a mask also, and not hanging out with people. As if I would in my condition.

I'm in too much pain to do anything anymore.

KCNJ12 (Screenshot of a gene mutation in my DNA)

 

One of many variants in my DNA

No one had uploaded research on ClinVar, but I had no problem finding it elsewhere. I've been talking genetics with the Periodic Paralysis support group off and on for many years, so it is a victory to finally see supporting evidence on screen. It's also not the only variant I have in an ion channel. I'll share more later.

In discussing this with the group, it looks like mine may be a rarer form. Mine is definitely familial, as my mom had the symptoms as well (she was fiercely anti-medical, refused care even when crippled, and died in 2014), and there were stories about her father (died in '81) and grandmother (long gone) having some unexplained episodes as well. I do not have the facial and distal extremity abnormalities (low ears, webbed toes) that are associated with Andersen Type 1, but I share a trait with my mom and someone in the support group who pointed out that we (confirmed by Dentists) have abnormally small mouths and troublesome jaws. There may or may not be any significance there.

(Side note: I experienced a dental nightmare this year that traumatized me and I haven't been able to blog about it. Maybe later.)

There are other types of Periodic Paralysis, including an Andersen type, that people in the group have who also do not present the visible abnormalities, so perhaps I'm one of them.

It's Familial Periodic Paralysis, whatever the case. I was diagnosed in 1998 and again in 2011. God knows I prove it daily; my life has been very difficult. And I've been researching and blogging about it (both publicly and privately) since 2001 (MY GOD, I just realized that's 20 years)! I also have other conditions, clinically confirmed, that are now supported by genetic results.

In a public post, I've invited my physicians, present and past, to friend-request me on Facebook to be added to the album where I am uploading more data, as well as dozens of reports generated by the lab. It will require a private message to get my attention, as my timeline settings are very tight, but feel free if this is an interest.

There are many variants in my DNA, and I am sure I've only scratched the surface, but I am pacing myself. Importantly, I am well aware that mutations don't automatically mean a diagnosis (I have a mutation for Epilepsy, for example, but thankfully no manifestation), so I would appreciate it if people would stop trying to mansplain explain this to me. Just leave me to it, thanks.

I meet with Internal Medicine in 2.5 weeks.

A long overdue update 9/2021

After a long and challenging treatment, my bro has recovered from nearly losing his foot. I'm happy and relieved that this didn't end badly. It was a busy, stressful time.

I have been feeling more unwell than usual for several reasons, but I'm thankful COVID hasn't been one of them. Things have gotten out of hand here, with full hospitals and people dying in the waiting rooms. My brother and I know people who've died, in fact, two of his friends died in the same week. We've both lost a lot of loved ones this year.

Our aunt died a couple of months ago. I don't know if I mentioned it. So we lost an aunt and an uncle this year.

I'm not ready to talk about the Bob Ross documentary yet. It's painful. I'll eventually speak on the matter.

Thanks to my amazing friends, I pursued whole genome testing, and I have confirmation of Periodic Paralysis with Long QT, Familial Episodic Pain Syndrome, and a very long list of other conditions. I will eventually share all of that here. It is going to take a long time to comb through that amount of data. I'm already posting info on Facebook, if you happen to be on there and interested. I wish I could tell my former doctors in Jackson about this, but they've moved on, and I must do the same. I will see my primary physician next month. He has no idea the amount of info he'll be bombarded with, poor man.

I've started painting vases and candle holders during times that I am feeling strong enough. The results have exceeded my expectations, and I look forward to selling and gifting a few of them during the holidays. I'll share photos here soon, but the pics are already on most of my social media accounts.

I am having bad episodes. I'm trying to figure out what to do about it, including alter my diet again while somehow maintain my other conditions. This is so hard. I'm tired.

A while back, a car hit mine (the one I drive, I don't own it) and kept right on going. No way to get their info in a sea of other vehicles on a busy boulevard, so their hit and run was a success. I'm fine, and so is the car. It will receive some TLC next month, when I have some money.

I have absolutely no money this month. I had to pay off a bill, so I'm sitting at home on the couch for the next 12 days. Thankfully, I do have groceries. Fuel, not so much.

I'm still involved in all things Pokemon, and don't plan to stop most of it. I won't play the card game in person ever again, I don't think, so I'll eventually find a new home for those cards. But otherwise, I'm still involved with several games and the anime. I'm surprised I haven't blogged about it this year, but Twitter is simply a faster outlet for such things. I reopened my Tumblr and Pinterest as well. All of the above are @ ugottafriend.

Someday, I'll reopen the medical blog. I just don't feel like dealing with it right now, but I know I need to continue bringing awareness, especially now that I have genetics to back me up.

My bro adopted a new Chihuahua, and she is the biggest diva. Ha! We call her the Queen, and refer to her as Your Majesty. Spoiled so rotten, it's not even funny. She's a really sweet dog, and absolutely deserves it. Her real name is Gypsy, given to her by the rescue org she came from. I'm allergic, but I try to be a good auntie. She adores me, and sometimes prefers me, so I do my best when I visit.

I still live in my apartment, alone. Other than the disruptions that occur sometimes, it's acceptable. My next door neighbor almost died from COVID. She was in the hospital over a month, and came home on oxygen and a walker. She's the one whose husband died less than a year ago, so she's really been through hell since she moved in here.

Hopefully, life will improve for us all again someday.

Be safe everyone.

Hurricane Ida Relief

Yes, yes, I know. I'm terrible.

Louisiana is going to need assistance for a long time. Here's how you can help:

Cajun Navy Relief - cajunnavy-forms.nogginoca.com/donate.html

All Hands and Hearts - allhandsandhearts.org 

Project HOPE - projecthope.org

World Central Kitchen - wck.org

Direct Relief - directrelief.org

I know how hard it is to move forward after your life and livelihood have been wrecked. My heart goes out to them. I'm too sick and poor to do anything but share info these days, but I do what I can when I can. We did have the storm here as well, but to a very small degree in comparison. My brother and I lost power for about 5 hours, but were otherwise fine.

Thanks for all you do to help those in need.

A statement prior to Bob Ross documentary viewing

 

I have been very busy with my brothers health and my own for the last month and I have not watched the documentary that released on Netflix. However as a certified Bob Ross instructor I felt the need to make a statement this morning after reading many heated statements overnight.

I will give a follow up statement after watching the documentary. In the meantime, please think of the safety of innocent parties who are now at risk because of this fallout. I assume, based on how angry people are, that the story is much worse than I was expecting.

See you soon.

2021 Haiti Earthquake

https://www.directrelief.org/2021/08/responding-to-devastation-in-haiti

Direct Relief is headed to ground zero in Haiti. Consider helping them financially, if you can.

I live in a heavy tropical storm zone and have been through many disasters, but I can’t really imagine dealing with the earthquakes. My heart goes out to the people of Haiti.

What’s next?

I keep thinking I need to return to blogging, but I have lost the ability to write anything other than the fact that I have lost six people in less than a year: an uncle, an aunt, and four friends.

And that I’m in constant pain and staying alive is hard, but I’m doing my best.

My brother is hospitalized with a dying foot. Thankfully it is responding to antibiotics, and he is not in the level of danger he was in a week ago, but it’s nowhere near over yet. Just send some well wishes his way. It has been a terrible year for him, too.

My postcard for Twitter Art Exhibit to benefit Cancer patients sold today. That’s something to be happy about.

I don’t really know what’s next, but I will share more on the blog again soon.

Half a year of loss

I haven’t known what to write lately. I’m overwhelmed and feeling somewhat numb at times in an attempt to cope with a lot of loss. In a matter of six months, five people I loved have died, and one more is suffering greatly.

The ones I have not mentioned here yet:

Kate McGinity, who died of cancer at age 40

Sabrina Garza, age 42, died after recovering from a stroke

I had known both for nearly two decades. Lorna and Tressie, I had known just as long. And of course I knew my uncle all my life.

It is hard to move forward when death surrounds you, and you yourself are so ill. How do I describe feeling like I could be next? I admit I think it should have been me because they had much to live for and I don’t. But I also don’t want to go, even when my mind and body tell me (over and over again) that my time is up.

It’s a harsh existence, yet I have to be OK with being here. Rest assured I’m always trying to be better. I’ll never not try, despite how weary I am every day.

My memorial tree, which I inherited from my uncle, will end up being a year-round tribute to loved ones, I think. I’ll share photos on a better day.

Goodnight 

June is here, and so am I

This year has been rough. I'm still here, so I guess that counts for something.

I nearly keeled over at the laundromat recently, so I will be looking for a laundry service in the next two weeks. I wear boring clothes and I wash my own undies, so there isn’t anything particularly cringy involved.

I took a mini vaca today to try to clear my head. I visited Margaritaville for the first time, and had Cousin Jimmy’s Cheeseburger In Paradise. I’ve been wanting to do that since they opened years ago. There’s no casino there, it’s just a giant family-friendly arcade, not unlike the one I used to run in my youth (mine was a lot smaller, of course). Unfortunately a strobe light activated on a game while I was looking in the general direction, and it effed me up, so I had to leave. I ended up buying an ice cream bar at the old Bob’s/Mary Ann’s near my hometown, which was some heavy childhood nostalgia.

The rest of the month, I’ll be in hermit mode. Inspections are back, so I am cleaning and prepping the apartment for that. I’ll be cooking regularly again, and complaining about the dishes (my most hated chore, ha). I can’t afford much fuel right now, so my outings will be limited.

The memorial tree will be redecorated for ‘Merica’s Flag Day, Independence Day, and whatever. Pics eventually.

That’s all for now. I might video blog soon. And I will have long-overdue health updates. Goodnight.

A stream of consciousness for Lorna

The world is darker, and a far less interesting place now that my friend Lorna has left it. She had quite a life, growing up with hippie parents in a nudist colony. A famous photographer took a photo of her in her youth that was displayed in museums and auctioned for six figures. Not many people can say something that extraordinary has happened to them. I will never share the photo, due to nudity (not to mention copyright), but she showed her small circle of writer friends years ago. Lorna grew up to marry and adopt a son. She was an editor and a writer, like me, when we first met. That should tell you how long our friendship was; nearly two decades. I’m grateful for her humanitarian views and her positivity; in a world full of toxic positivity, Lorna remained real in the midst of her optimism. She was an encouragement to me in many hard times I’ve been through. She made it through many hard times as well. Seventy years is a long time to be alive, but Lorna was the type who should have been allowed three or four more decades to tell her stories. I will miss her so very much.

Testing from my phone

Only a test.

I don’t use a laptop very often anymore, but blogging is a pain on a phone browser, so I’m trying an app.

It has terrible reviews, therefore I won’t get my hopes up on it working well.

Tonight, I just want to see if it works at all.

The ongoing Gaza catastrophe - how to help

https://www.ign.com/articles/how-to-help-palestine/

I have found very little information on how the world can assist in this terrible, seemingly endless war. This morning on Twitter, I came across an article, so I am sharing it here.

I recommend researching the history of Palestine so that you can fully understand the nightmare. I’m weary of people citing an ancient book to justify, and even cheer on, terrorism and crimes against humanity. It’s horrifically ignorant and offensive.

Condolences for the innocent lives affected.

I already miss you, my friend.

 

2nd Vax

Before

After

My body is a complete mess, but this time, it’s for the greater good. I’m going to get past this misery, and I’m thankful to now be immune to COVID-19. It has been a long 13 months.

Back to bed. See you soon.

A summary of the last month or so

I realize I’ve been absent here, again. I’ve got to say it’s been a pretty challenging year so far, not only with my health, but other things.

My maternal uncle died unexpectedly in early March. It was and still is a huge shock. My brother and I rushed to Florida to stay with his daughter until his daughter’s mother arrived from across the country. Since then, I’ve inherited a large holiday tree, a piece of fine art, and was offered a car (which I was forced to decline due to social security restrictions). I will post photos of the first two things eventually. This has been a heartbreaking and stressful time for all involved, but especially my brother, who has had to travel back to Florida several times to assist.

I’ve been a mess post-vaccine, dealing with side effects that most people don’t experience, but I do because of my muscle disease. I am glad I had the vax, though, and will get the booster on April 20th.

I finally saw my internal medicine specialist for the first time in over a year (due to Covid), and had a lot of labs. Everything looked quite good with the exception of my blood cells. I have a difficult time with iron-deficiency anemia now that I am donating blood to a baby every two months. I’m on over-the-counter iron pills now to try to correct that, but the iron is causing digestive problems as if I didn’t already have enough trouble with my digestive system. Can’t win. My white blood count was high. I assume it is due to the vaccine, which would be a good thing because that means it’s doing its job, but I will keep an eye on it and have WBC checked again in June.

My kidneys and urinary tract are still hurting from January’s traumatic experience. I did confirm that I do not have an infection, so at least that’s a plus. I am unsure if the kidney stone or stones have all passed or if some of them are dormant. I haven’t had any kind of scans since the ER visit. Anyway, I’m taking potassium citrate and other supplements to try to keep the stones under control as much as possible. I truly cannot keep going through that. It is the worst pain imaginable.

I sent a new postcard to Twitter Art Exhibit for charity, and I will share more info about that reception soon.

I’m still on Instagram and Facebook, sharing the usual stuff. As for Twitter, I have switched modes back to what I was originally talking about before the Trump regime: art, food, medical advocacy, and most of all Pokémon. I’m cursing a little bit less and smiling a little bit more. So be it.

I’m in severe pain. I’m going to cope however necessary.

This is 43

 

Rare Disease Day 2021

 

I started a thread on Facebook, which can be found here. I suspect I won't see a lot of interaction on it due to this being a Sunday, and a lot of my friends aren't on the book of face on weekends. That's fine. I am easily overwhelmed these days, and my head is constantly swimming in fog.

I'm disappointed that I haven't blogged much this month. I do still have a couple of things to catch up on, and I will. For now, I'm better off lying low. You know where to find me if you want to talk.

In conclusion, I'm still here. I'm glad you are, too.

2021 is 2020 2.0

Or 2020: Part Deux if you're a Leslie Nielsen fan.

If you've seen my posts on social media, then you know. I was taken by ambulance to the ER, where I was diverted to the regular waiting room, where I screamed, threw up, and peed myself for many hours. Kidney stones, kidney infection, and pain-induced Gastroparesis brought a trifecta of pure hell. I truly believed I was dying right there in front of everybody. I nearly lost consciousness from the pain. And this went on all evening long because there were no available beds.

If you've been irresponsible about COVID, just know how much you've contributed to my new emergency room trauma...as if I hadn't had enough of that already.

When I finally was seen, it was my favorite ER physician, Dr. Jah. He's the sweetest, and was sympathetic of my misery. It took a long time to get it all under control so I could stop wailing, but it finally happened. I was released as quickly as they could throw me out of there. My uncle is a saint, and got out of bed in the middle of the night to drive to the city to retrieve me. He drove us to the 24 hour pharmacy, bought the meds, and took me back to his home on the bayou. I spent a week with my aunt and uncle being observed. The stone(s) didn't seem to pass, but I was functional enough to go home so they could resume their family plans out of state. I am extremely thankful they were in town and willing to be there for me in this unbelievably challenging setback.

I'm still in severe pain. Some days are more manageable than others. I've ordered supplements galore to try to help dissolve the stones. My urinary tract is on fire...it still hurts so very much. I am going to have to call my doctor again on Monday to try to get some help if it doesn't resolve. I will for sure not go back to the ER unless I believe I'm dying again. I really did think I was, and it is going to take a while to heal from that level of horror.

I'll go back to therapy when I can. COVID is still too present, but I'm hoping to have access to a vaccine soon.

I wish I had access to a Nephrologist, but all of mine are gone. Even if I did have the funds to go back to Jackson, they aren't there any longer. I regret the money I spent to travel there over the last several years, because nothing was accomplished from 2016 on. Nothing was done at Neurology clinic, either. It seems that when my original doctors left, I should have, too. I do appreciate Dr. C for wanting to help me. There was just no follow through on any ideas before the hospital's financial aid cut me off, and he moved on to another facility. It grieves me still, and probably always will.

So I don't know what to do anymore. My Internist, Dr. B, is overwhelmed. I love him, but his office never fails to be a frustrating disaster. Every time I have to ask for something to be fixed, I feel like I'm being labeled a problem patient. I need to be connected to a facility that can manage my conditions correctly and in a timely manner. I shouldn't have to melt down every 2-3 months to get my kidney and muscular dystrophy medications. It's inhumane to neglect me until I can barely function, then gaslight me as a troublemaker when I'm upset about it. I'm trying to f*&^%$#@ survive. Sue me.

I exist on the couch until further notice. Just like my mother did when she was dying a horrible death.

I Will Die On This Hill

I was at the grocery store earlier, waiting on my laundry to dry next door. A black man and I stood at the TV watching some of today’s outrageous events unfold in D.C. He turned to walked away and simply said, “Sad.”

Yes it is. Among other things, it is deeply sad that our country has been reduced to this, all for a deranged white nationalist sociopath who launched and continuously fueled a massive moral and intellectual regression. The blame for all of this chaos belongs entirely to the Trumps. It is who they are. Violation is their legacy.

He didn’t make America great. He made it a disgrace. And every person who resides in this country will be forced to live with the side effects of that fact, coming from both inside and outside of our borders, for a very long time.

I am a minority opposing the Trump administration in my state, and let me be very clear, I stand proudly and without hesitation in that decision. I don’t know what’s going to happen next, and I may not be worth much in the world’s shallow eyes, but my integrity is sound. I will die on this hill knowing that I was on the correct side of history.

An Unexpected Phone Call

I received a call on New Year's from the blood bank, asking me to donate to a pediatric patient who matched my rare blood group. I said yes, of course, but wanted details about my blood so I could document it. They pulled me up in their database, and wrote down what matched me with the patient. It turns out, in addition to being A negative, I am in an ultra rare Rh blood group that includes several missing antibodies. The lack of these antibodies makes my blood safe for newborns and infants. These antibodies are found in over 85% of adults. I’m in the vast minority who doesn’t have them. The staffer told me that, as well as my A negative type, put me in 6-11% of the population. Babies needing a transfusion can only be given blood that is the right type + lacking antibodies they don’t have, because giving them antibodies they don’t have can shut down their organs, which are still in development. If you’ve heard of the Rh shot given to some people during pregnancy to save their baby, this is the same. Incompatible Rh is potentially deadly, thus the critical nature of finding exactly the right blood. The percentage of donors who are eligible is so tiny, they have asked me if I would remain on-call to continue to donate to this patient for as long as it’s needed.

If you are eligible to donate blood, please know it is safe to do so. Everyone is masked, everyone’s temperature is taken, and sanitizing is strict. It doesn’t hurt anymore than a blood draw at the doc office, and it only takes an average of 15 minutes. There is a critical need for all types thanks especially to COVID. Your blood may be tested for COVID antibodies. Mine have been negative, but we will see what my results are in a few days.

I feel fine after donating this time, as I followed their instructions and ate a full meal before donating. They give you snacks and drinks if you want them, and I will also eat a nice balanced meal tonight.

You never know who you will save with your donation. I was not expecting to do this again, but that phone call has given me a sense of purpose; a specific thing that I can do to help a specific someone that I’ll never know. For a humanitarian, it doesn’t get much better. I’m grateful to help.