We carry on.

 Not because we want to, but because we must.

Crush Misogyny

I’m typing on my phone right now, so this is going to be very short. I’m fed up with social media, society, and civilization as a whole in many ways for many reasons. I’m better off not participating most of the time. No matter where I go, I can’t get away from the misogynists. From next door to the next town over to the doctor’s office to the art gallery to the schools and absolutely everywhere on social media. Want the instant coffee version of misogyny? Just pop onto Reddit for two fucking minutes, or make one fucking comment in a Facebook group. They come out of the woodwork and land on you, like ROACHES.

The majority are men, but there are women too, especially in my family.

I was looking at my Facebook account tonight and realized I had not given myself a custom URL yet. Since my usual usernames are not available, I made a list of names that were available. CrushMisogyny. DestroyPatriarchy. MetaHatesWomen. WeakMenHateStrongWomen. MetaHatesWomenSoHereIAm.

You get the picture. It’s my current mood. Don’t expect it to change until *points all around* they do. And I’m not backing down, either. I suggest making a note of it.

Cross-post from FB, about cooking

I ”quiet quit” cooking a while back, which is why you haven’t been seeing scratch meals on my facebook like I used to post. I’m too exhausted, and I think it’s unfair to push myself to do things the traditional way when more convenient choices are available to me. Hand washing dishes is miserable, and always increases my pain level. It’s not worth it. Cooking for others is unnecessary. I don’t owe them, and they have other options. So, after I clear out my freezer and pantry, I’m going to retire from cooking.

I’ll still buy some groceries for quick meals, but I’ve reached the end of going above and beyond. I’m not doing it anymore.

I still plan to participate in Thanksgiving. I don’t know what Christmas is going to look like this year and prefer not to think about it. Most of my money is going to the dentist. Next year should be about $40 easier with SS increasing, but the rest of the increase will go to my simultaneously-increased rent, as usual.

I am very grateful to have my own place, where I live alone and I’m not often bothered anymore, and will happily pay whatever they ask until I move somewhere else.

At any rate, I plan to lock the food photo album after I finish cooking what’s in my freezer and pantry, but I’ll post a few things before that happens.

TL, DR: I feel better when the kitchen is closed. So I’m closing it.

My mean ass is ok

The title is literal, haha. My digestive tract is awful to me, but I know I’m not alone. Swelling and inflammation were found in my lower half, but nothing more alarming than that. I’m not bleeding anymore, and it was likely caused by blood vessels that had burst.

Colon prep was horrific and by far the worst part of this. I passed out in the bathroom, and woke up with periodic paralysis. My legs and feet were dead weight. I’m grateful I recovered enough to go through with the procedure.

They documented my Periodic Paralysis, and gave me the absolute minimum general anesthesia. I’m dealing with muscle weakness and major brain fog, but I am relieved it went so well.

Labs showed my mild allergy to shellfish, and no allergy to a list of other things. I don’t have Celiac disease. Really surprised by that one, based on genetic markers, but glad I don’t have to restrict gluten (other than the carb intake in general).

My meds and diet will be adjusted to hopefully improve the pain and other problems.

My throat is trash post-procedure, so whatever they did to it wrecked me. More than 24 hrs later, it still hurts like a mofo and I can’t stop coughing and gagging. I’ve been having esophageal spasms, which is frustrating. I can resume home medications at noon (that’s a few minutes from now) and I will be taking a Skelaxin immediately.

The nursing staff was very compassionate throughout, and that meant a lot. My cousin took great care of me and I appreciate him endlessly. Thanks to all for the prayers and best wishes, friends.

I’ll have fewer medically-intrusive updates in the future, hopefully!

Short health update—upcoming procedure

I’m starting a liquid diet and colon prep today for exploratory and biopsies on Tuesday. My cousin Ed has graciously volunteered to take off from work to be my caregiver for 24 hours.

It is very risky with HKPP to do this, but it is needed. I’m taking in as much potassium as I can safely get away with, hydrating well, and hoping for the best. 

See you on the other side of this crap. (That’s a pun. We like puns, right?)

❤️

Hurricane Ian

My state dodged a huge bullet thanks to a high pressure system that blew in the day Ian made landfall. This cold front pushed the storm into southern and central Florida. The aftermath on the coastline reminds me a great deal of the hurricanes I have survived. My heart goes out to everyone affected.

I am sick on the couch and don’t feel like typing out much. I am voice typing right now, as a matter of fact. But here are some screenshots of ways to help Florida.

Another medical emergency

 

TL,DR: My digestive tract is a miserable failure, and continues to try to kill me. I’ll update after the appointments. 

How to help those affected by Hurricane Fiona

https://www.pbs.org/newshour/nation/how-to-help-victims-of-hurricane-fiona-in-puerto-rico

Just putting this here.

I dreamed the Queen of England died. I recall waking overnight wondering why I had dreamed about her at all, and went back to sleep. I woke up later this morning, checked Facebook, and the first thing I saw was my friend Alice posting a statement by the royals that Elizabeth was ill and being monitored at Balmoral. I don’t know what Balmoral is; I assume a hospital.

If she passes during this time, it will be one of the weirdest things I’ve ever experienced. Not the first nightmare that came to pass in real life, but likely the most memorable.

Maybe she’ll hold on for a while. I don’t follow much news overseas, but I know she’s in her 90s and I wish her well.

Edit note @ 11:48pm: Well crap. She’s gone.

Unbelievable.

Last edit:Ok it’s not a hospital. It’s a castle in Scotland.

I guess I will try once a month

Since I can’t seem to bring myself to blog anymore often, I will try to check in at least once a month.

A lot of annoying things are going on with my health, but I go back to the dentist on Tuesday and internal medicine in the middle of October. My appointment with neurology in Birmingham will be postponed. I haven’t found a new therapist, and I don’t think I care. There is no cure for anything I have. I don’t expect a conversation to change that.

The new Facebook account is already on my last nerve, but I’m trying to stay so that I don’t lose my friends who don’t want to move elsewhere. The majority of my social media time is on Twitter. As always, beware my unfiltered thoughts if you visit. I don’t cater to anyone there, and that’s that.

My bro and his family are planning to move home. That will change my life in a pretty big way if that happens, because my nieces and nephew will be here. At the moment I’m just waiting to see when and where and how this is going to come about. Despite how much I care, I honestly hate this. I wish Kayla was still here so they could live the life they built near D.C. and not have to start over in this state, which is far from ideal in regards to raising girls into women. But it’s not my business, and I will just have to hope for the best.

Financially I’m exhausted, as usual. I’m grateful I’m not on the street, but living on SSI is hard. My microwave died and I can’t afford another one. I can go to the fuel station and fill up the car, or I can get an oil change. Not both. Do I buy food today or do I buy my medical supplements? If I pay the dentist, I will have to sit home and eat tomato soup for the next three weeks. Which utility bill can I put off? None of them. I’m never late on bills, even if I suffer.

I’ve run into some interesting characters since connecting with certain groups on social media. Someone called me a “demi-dipshyt” the other day, and I laughed a lot. Yeah, I’m Demisexual. I couldn’t care less what anybody thinks of that, least of all some random nobody. I made fun of them, and they went away. Clowns are everywhere. I still see too much news, and the evil that exists never fails to shock me. If I were God, I would have already burned this whole place to the ground.

Inspections galore in my apartment complex. I’m trying to keep a handle on the condition of my place. Management always has no problem at all with my apartment so it’s just me putting pressure on myself. Sometimes I want to just throw everything away, but that’s my anxiety at work, and I know to ignore it because it’s not rational. I’m just weak and in too much pain to deal with everything. There is nothing normal about the way I exist, and that’s not my fault. I just have to keep doing the best I can.

What do I even say anymore?

I’ve lost two more friends.

Both to organ failure; one being related to Periodic Paralysis.

I cry every single day, and have for months.

I will write about Lynn and Angie in another post. Those of you who are on my new Facebook have already read some of this. At any rate, I’ll be back to talk more when I can handle it.

Internal Medicine 7/19/22

I returned to Internal Medicine yesterday.

Dr. B gave me trials of digestive meds and a muscle relaxer. I’m not optimistic about my system tolerating it, but we’ll see.

He’s looking for a local Rheumatologist to refer me to, and he wants me to try to raise the money to go to UAB in October. I still have that appointment booked, but have zero dollars to go up there thanks to the cost of fuel and hotel and food. He wants me to call him with an update on that before my next appointment. He gave me a social worker’s phone number and wants me to connect with them since I don’t have caregivers. He worries that I’m alone, but understands.

First thing out of his mouth when he saw me was “Miss Kelli, you found a new hairdresser!” I told him my hair is wild, but it’s too hot to have it long so I’m going to keep rolling with it. My weight is staying steady (he never brings it up and is fine with it). My cholesterol is barely above normal (an improvement from my teens and 20s), but 199 is my personal goal. My potassium was great. The K+ citrate and Liquid IV that friends bought me last year on Amazon is working.

My chronic pain (muscles pulling, burning, spasming, cramping) is so bad that I am unable to sleep, and I don’t really go anywhere or do anything. The more I try to do, the worse it gets, as ion channelopathies go. I’m going to stick with ibuprofen, and hopefully the muscle relaxer will help and not harm me. I told him I don’t know what else to do at this point. I have to have some relief and rest. He is doing what he can, and wants me to focus on getting to UAB for Neurology consult.

I still need to return to the dentist. It will happen soonish. I'm having too hard of a time sitting upright lately. I'm propped up on pillows at home, and the car I'm currently driving has a supportive seat in it, thankfully. But my muscle power is severely limited, to be sure.

I am hard on myself, and every day is a fight, but I will keep trying.

No Hot Girl Summer Here

Just a tired, broke, middle-aged Summer.

It has been exceptionally hot this season. I'm wiped out. My body can't handle heat nor cold, or rain or hurricanes. I need 75 and sunny year-round, so I hope if there's an afterlife, it will give me the climate I have always hoped for.

I bought a jet mop (I'm not putting the brand name here for spam reasons) and the cleaner that came with it wrecked me. I received some good input from my Facebook fam, and then saw a post on Reddit by pure coincidence that did the trick. I cut a hole in the top of the dispenser, squeezed the cleaner out, and refilled with water and peroxide. A little duct tape across the hole, and I'm good to go.

People who do not have chemical sensitivities have no idea how lucky they are.

Some great news from Twitter Art Exhibit: my postcard sold. 

Apartment inspection was quick and painless. They asked if I was making glass vases in the back room. Haha, no. I'm only painting them. I doubt it's possible that glass could be made in an apartment. The smoke alarm would go off immediately, I'm sure. Who knows? I'm a lowly painter, that's all.

I'm struggling greatly with HKPP, migraine disorder, and severe chronic pain. My Gastroparesis is somewhat improved, although I am still having to medicate and be cautious. I've started incorporating a few vegetables and grains back into my diet. We'll see how it goes.

I made gumbo the other day and shared it with the neighbors. They loved it.

I'm almost done with my dental work, for now. My next appointment is to have impressions made for a partial denture, since I cannot afford tooth implants.

Internal Medicine is in a few days. I am endlessly frustrated with them. I'm going to be having the same exact conversations we had last time, because nothing was followed through on three months ago. It is a constant aggravation, and one of many reasons why I hate going to the doctor with all of my heart.

NASA's new photos made me cry.

I started paying for laundry service for most of my clothing. It is expensive, but in my current condition, I am forced to budget it in. It will be worth it, I think.

Shoutout to that Teenage Mutant Ninja Turtles T-shirt, ha. They probably think I have teenagers. Alas, I am the one and only nerd in the household.

Little dude Asher had a birthday. Here we are, with his baby sis. :-)

I got fed up with my hair and had it all cut off. It's so short. I have no idea what to do with it. It doesn't look great, but it feels a lot better. I guess that is what matters. No pic on the laptop to show you, sorry.

My iron was finally high enough to donate blood again. They took a pint in six minutes, and I almost passed out. I'm not sure if I will be able to continue doing this, but I'm going to try. I have extremely rare blood for an adult who is 90% White European. I'm able to give to people with Sickle Cell, including infants, because I am missing certain antibodies that most people like me have. I need to keep giving if I can. They told me I'm among only 6% of donors who can donate to A-negative Black children. It scares me to think about there not being enough blood to go around.

I really hope some people who read this will consider blood donation. You never know who you might save by giving.

I made my first decorative focaccia recently. The texture was awesome. I can work on improving the design, but I really loved it.

 Oh hey, I did find a pic of my extra short hair.

That'll have to do, I guess.

I'll try to blog again before the end of the month. I'd like to eventually blog twice a month, like I used to. Talk to you later.

Renewed

I don’t really know why, but I renewed my domain for this blog. I don’t have much to say these days, at least not publicly, but I think I will continue to preserve the domain name so it isn’t snatched up by some weirdo or spammer.

I want to thank those who gave to my sister’s go fund me. Losing her is still unfathomable, and I don’t know how the kids will manage, but they will. They have to.

I don’t have the health to be much help at all. Thankfully, John has plenty of friends, coworkers, and relatives pitching in while he figures out how to resume and maintain the life and household he and Kayla built together in West Virginia.

Things are pretty dystopian lately, with all of the shootings and horrific legislation. Pride month has certainly been an odd thing to observe, as someone who is paying a little more attention to it nowadays. There is still a great deal of bigotry in this country despite how far we have progressed over the last several decades. In comparison to other progressive countries, we are nowhere near where we need to be. Overall, I just want every American to be safe and to be allowed to live equally and authentically. But, I also wish I could move to another country. This one is failing miserably.

I still live in the same place. The problematic neighbor who caused so much disturbance over a period of five years was finally evicted this week. I had just told myself that I would never be rid of the situation, that there was no hope. A confirmation by management of lease violation followed by a half-hour psychotic episode threatening to kill my next door neighbor was the straw. I can’t believe it took this long and that much escalation, but it’s finally over and my neighbors and I feel safer now. I hope the next neighbor is sane. This is a multiplex, so we share a building and hear everything. It’s inconvenient and stressful.

HUD inspection is next week. I’ve made a lot of progress in my storage room, and there shouldn’t be any complaints. There remains no evidence that they’re moving me to a smaller apartment, so I am still “overhoused.” I was told by the manager that the smaller apartments are occupied by bachelors who will probably never leave, but if one of them dies, I’ll have to be moved.

I finally have WIFI again now that the Prez expanded the Affordable Connectivity Program to include internet as an option. I have a basic package which will cost me around $24 a month. Maybe I will find the energy to resume reading, writing, and enrolling in free open classes again. As of right now, that’s a no-go. I’m too weak and tired to do much of anything.

Every day is a significant challenge, but I’m trying my best to keep going.

Worst Nightmare

Please think of my family and me as we are faced with the shattering loss of our precious Kayla. She was 31, and the world’s greatest mom, wife, and homeschool teacher. She was my sister and friend; someone I was close to and admired greatly. Send your best to John, Zoey, Sadie, J.J., and the rest of us as we navigate through this nightmare.

We are completely distraught, and have no idea how to go on without her.

Kayla

My sister is on life support as of this morning following a massive brain hemorrhage. She is 31 with three young children. My family appreciates all prayers and support at this time.

April 2022 Life Update

Man, I'm a bad blogger these days.

Where did my inspiration go? I'm just tired and in terrible pain all the time. I have been for years, though. I guess I have been distracting myself with other things, and my blog has suffered greatly as a result. I do try to keep up with humanitarian efforts, and still have plenty to say about what's currently going on in this country. I will find a day to climb on that soap box soonish.

For now, I'm just going to ramble about life.

I have a brand new account on Fakebook. It's here.

I returned to Instagram under my old, original account. It's here.

I still have plenty of people to find on both sites. If you're one of them, feel free to add.

Twitter hasn't changed, which means you're better off not following me there unless you're ok with F-bombs and advocacy. You know the username by now. (Caution: I will argue with absolutely anyone.)

I returned to Internal Medicine. I was expecting my cholesterol to be terrible. It wasn't, so that's a relief. We briefly discussed liver disease, and he's trying to help me with my muscle pain, but Medicaid is being an execution squad as usual and refusing to cover my meds. Currently fighting them about it. My weight is still the same, in the 170s. I'd like to make it back down to 160. My chest is too large. It is bothering me a lot (I dislike boobs in general, but especially mine) and I am in constant pain. Anything that puts the least bit of strain on my muscles amplifies my pain level to the point of misery and tears. So, I have to figure out how to reduce my weight from the waist up. I'm one of those people who is shaped like an apple, or more accurately, an upside down pear. Dr. B has no problem with my weight, as we have never discussed it. He wants me to watch how much fried food I'm eating because of my liver, and that's the extent of his dietary advice. He knows I'm disabled (I use a walker) and in severe pain (nearly in tears) and is trying to help. I told him about going to Birmingham, and he hopes that the specialist up there will be willing to do telehealth at some point, since the distance is physically challenging. Doing this alone is extremely hard, but I know it would be hard regardless.

I didn't return to therapy because the car was in the shop. I don't think I'm in any condition to go back right now anyway. I don't know what I would say if I did, or where I would even start with all that has happened over the last two years. I almost think I need to start over somewhere else, and with an actual psychiatrist. I asked for help in being excused from Jury Duty in January, and the therapist said "We don't do that." I wanted to ask "Then what the hell is the point of you?" but I didn't. I just think it's unfair to unload my life onto someone who is supposed to be supportive, who assessed me for PTSD, who knows I have suicidal ideation, but isn't willing to say so when the information is needed by a government entity. Truly, what is the point? I guess I'll look at other options. I had joined a therapeutic circle online back in 2020, and it went well until she started talking nonsense about forgiving abusers and the law of attraction (I loathe it!!) and zodiac stuff. That's when I checked out, and I believe I did the right thing. I'll keep looking for something that's adequate for my needs.

I am drawing and painting a little. I created a postcard for this year's TAE, which benefits the Encephalitis Society in the U.K. Because the scene I chose to paint is a tribute to family heritage, a relative asked to buy it. So I cranked out another card at the last minute, and sent it to York. It arrived one day before the deadline - whew!!! It can be seen here. The exhibit is in June.

I plan to have a few postcards ready next year early on, so I don't risk missing the deadline.

I am slowly learning manga. I'll share some of my work soon.

I need $1194 in dental work, so that's a nightmare. Almost everything I have ever drawn or painted is for sale. A lot of my collectibles are also. If you are familiar with my art and other belongings and think it's reasonably shippable, make me an offer. My mental health has been rock bottom since my kidney medication started destroying my teeth. I've lost two over the last year, and a third is giving me grief. It's a no-win situation.

I'm doing my best? Poverty in middle age is rough.

I'll be back when I can think of something else to talk about.

It's OK to be Gray

 

Today is International Asexuality Day. I’m thankful for all of the posts I’ve seen educating others about the asexual spectrum. I am neither allosexual nor asexual; I’m in the gray area in between. Since learning about gray and demisexuality, I’ve met many people online who are exactly like me. Not everyone wants to be labeled, but I find it helpful to have names for what, why, and how I am. It is a relief to call myself demi-gray, and I wish these terms had existed in my youth so I could have used them to describe to countless critical people what they did not understand.

I’m not big on “pride.” I don’t like public attention. I’ve never attended a parade or waved a flag, but I fully support all who want to do these things (and maybe I will join you in the future). What I want more than anything is for education and awareness to lead to better understanding, respect, safety, and bodily autonomy for Ace people. I am fortunate to live in a country where most people are not forced into intimate relations. Those who are will hopefully find help and healing through our advocacy.

For more info, start here: https://www.healthline.com/health/graysexual

In a world driven by a sexual urgency that I’ll never understand, I’m glad to be gray. I’m a safe space for every gender and sexuality out there, and somebody worth knowing. Aces may not want your body, but they are intelligent, passionate, interesting, cool, and have plenty to offer.

💜🤍🖤

This is 44, for better or worse!

 

Stand With Ukraine (Links Updated 3/30)

We all know what has been happening over the last few weeks. It’s horrible, and heartbreaking, and very worrisome. But let’s try to take one day at a time and focus on the matter at hand, which at the moment is refugees fleeing Ukraine. They need immediate help, so I’ve collected a few links to leave here. I’m sure you’ve seen most of this already since I waited so long to post, but I think it’s important to write something about this and provide a list of ways to help. The situation is ongoing for a while, I assume.

https://www.today.com/news/news/5-verified-charities-working-help-ukrainians-invasion-rcna17590

https://www.globalcitizen.org/en/content/ways-to-help-ukraine-conflict/

https://www.npr.org/2022/02/25/1082992947/ukraine-support-help

https://www.cnbc.com/2022/03/09/heres-a-list-of-top-rated-charities-to-help-the-ukraine-relief-effort.html

I can say for sure that Direct Relief has already sent 48 tons of supplies, with 50 more on the way.

https://www.directrelief.org/2022/03/operational-update-48-tons-of-medical-aid-provided-to-ukraine-since-start-of-conflict/

Here’s a list of organizations helping pets.

https://www.countryliving.com/uk/wildlife/pets/a39487284/help-pets-ukraine-war/

And World Central Kitchen has been on site feeding refugees at various borders for nearly a month.

https://wck.org/

Thanks always to the helpers, as Mr. Rogers used to say. That includes all who are donating to these good causes, standing up for Ukraine, and spreading the word on how to assist survivors.

Let's do what we can.

Non-Alcoholic Liver Disease

After fighting with the clinic about never getting my CT results (it’s been a month!) and having to spend my last few $ on gas to drive to the hospital medical records department, I finally know that the current consistent pain in my side is due to liver disease.

The NAFLD diet is offensively contradictory to my other diets and will be very difficult (maybe impossible) to adhere to due to Gastroparesis and oxalate kidney stones, but I’m going to have to try to figure this out. My brother and I have genetic variants that predisposed us to this and several other diseases, so we are required to work extra hard to beat the odds. His liver is in cirrhosis and beginning necrosis, and he is less than 4 years older than me. We are both in our 40s, and overweight, but not obese. I’m going to work hard to find a meal plan that will help me improve all of my numbers (weight, liver function, etc.). I hope it will show people that I am choosing to stay even though I’m in severe pain and completely fed up with life.

I expect to see my birthday a month from now, but with so much of my body revolting against me, the years ahead feel very ify. I’ll do my best.

Keep Smiling

I don’t think I’ll ever get his voice yelling “WHO are you thinking about?” out of my head. Still in relief mode over here, all of these years later. This year will be 17 years divorced and 19 years single (took almost 2 years to track him down, to clarify that). Knowing what I know now about myself, I don’t believe anything would have been different with him, because being Demisexual is not that complicated. If I had to guess, I would say most are married or in a partnership due to emotional bond. Demis are loyal, so being with one is a huge advantage if you’re monogamous. 

I still don’t regret choosing not to date again. It has been the right decision for me. If covid will ever leave, and I can somehow get my pain and muscle weakness under better control, I will consider friend dates again, and/or pursue local hangouts for people in my specific demographic. There is no MDA nearby, I’m not comfortable going back to church, and I don’t like book clubs, but maybe I can join NAMI and Prism United. I’ll start researching this soon, I think.

Look for smiles wherever you can find them, folks. Don’t let anybody take that away from you.

Thank you, Dr. Farmer

 

I am heartbroken to see this terrible news.

I have read his biography and followed for many years.

The loss of Dr. Paul Farmer is an immense loss for the world.

Partners In Health will continue to serve, if interested in helping.

(I am not affiliated with either link I shared. Just a supporter.)

An Emotional Support Panda Road Trip

I mentioned at the start of the year that I was hoping to meet Casey Mongillo.

I'm shocked to say I did so.

I made them a thank you card.

And bought them a cute hat.

They voice Scorbunny, if that wasn't clear.

Casey also voices other characters I love.

It was a goal to buy this print from them in person.

I look like hell because:

1. I felt like hell (see commentary below).

2. I had cried all of my makeup off by noon.

I went to the table twice, thus two pics.

My shirt says "I'd rather be voice acting."

If you've followed the blog long enough,

you know I mentioned this interest years ago.

(My entire face is covered here, lol. Oops.)

I don't know how much I should say about this experience. Casey was patient with me, and let me tell you something, I was a f*****g mess. A few of my conditions (migraine, muscle disease, and IBS) were in full force, and I was in agony. It was nearly impossible to pretend I wasn't. I was also a ball of nerves, as I always am around new people, but especially Casey because they mean something to me, and I am terminally emo. Been that way all my life. There's no changing me, so I might as well not apologize for it. Anyway, I felt disastrous on Friday, so I went back on Saturday. I'm really glad I did. They are so so lovely, and a little sassy, and pretty much the same person they are online, with some added shyness (which is perfectly fine and endearing...God knows I understand that). I have followed them for a while, and learned some things about myself that I'm not going to get into here. Maybe I'll talk about it later in another blog post, or consider a video blog sometime, if I am brave enough.

Let's goooooooo! I also met Kira Buckland,

whose voice I hear every day in the games I play.

Too cool for school. I gave her a Pokemon card.

My mobility was going downhill fast by mid-afternoon Saturday. I decided to cut things short and start driving home. Due to the crowd, I ended up having to park a few blocks away and had to walk (on my walker, of course) to and from the car. It was absolutely exhausting. Sadly, I am notoriously bad at navigation, and walked the wrong way when I left. I turned around, and walked the other direction until I found the correct parking garage. Queue the epic meltdown of doom when I reached my car. I was so tired, and in pain, and frustrated with being alive and crying WHY IS EVERYTHING SO FREAKING HARD and WHY AM I FORCED TO LIVE IN THIS PRISON OF A BODY THAT HAS RUINED MY LIFE and THANK YOU JESUS OR WHOEVER FOR HELPING ME FIND MY CAR IN THIS GOD-FORSAKEN CITY. I AM SO ANGRY. I HATE EVERYTHING. *WEEP*

Something like that. I don't remember the exact words I unloaded into the lonely parking garage. These kind of episodes almost never happen to me, but I was broken at that point and lost all ability to cope. People who have panic attacks get it. I know I'm not alone.

I bought myself flowers after arriving home.

I earned them. I also cried a lot, and napped.

It was hard, but I'm grateful I went through with it. I was determined to support Casey at their first event in my state. I don't expect them to understand it. They don't know the trauma I've endured for simply being born the way I am, but I know they are a survivor too and their openness has reached into my soul and changed me in ways I cannot adequately express. I had to be there. Migraines and muscular dystrophy and social anxiety be damned, the fires of hell could not have kept me from it.

Getting my foot in the door

 

I finally have an appointment to see a Neurologist at UAB Hospital's MDA clinic. The lady who took my info and scheduled my appointment was very nice and efficient. Birmingham is overwhelming, and I had a couple of panic attacks, but I survived so I guess it was a success? I hated it. But I'll go back in October (a surprisingly soon appointment, as there is usually a longer waiting list) and see what happens. I have plenty of work to do in the meantime to get medical records together and download my whole genome, etc.

Wish me luck that a new doctor will join me in my battle against Familial Periodic Paralysis, Gastroparesis, Congenital Migraines, and several other conditions.

I don't know how I'll make it otherwise.

Losing our advocates

 

This is another hard loss for the Periodic Paralysis community. He was a sweet man who helped run the advocacy network in the Philippines, along with his friend who passed away last year. My heart goes out to his loved ones.

I am tired. I keep hoping I'm the next one to go, because I'm too tired. I want out. I just don't want to suffer or be in pain when it happens.

I'm applying for the waiting list at MDA clinic in Alabama. It has very mixed reviews, but I need to stay connected with more than one physician if I intend to continue on. I will finally go up there on February 11th if my brother's surgery on the 10th doesn't screw me over. I want no part of any of this, and I resent nearly every moment of my life. The only solution I can think of is death, but it's a lousy one.

So I reject it, for now.

Meeting Allie

 

BIG YAWN :-)

She's perfect. Aunt Kelli is proud.

Internal Medicine 1/19/22

I returned to internal medicine today. Labs results will be in tomorrow afternoon. Kidney and abdominal X-ray is clear. CT scan will be scheduled to look for uric acid stones. Rare script for pain meds because I am SO TIRED OF EVERYTHING HURTING ALL THE TIME. My handicapped placard was renewed by Dr. B and I’ll go tomorrow to get that. I thanked him for helping me out of Jury Duty (not sure I even mentioned that here, but yeah I was summonsed). He knows I can’t do it, and was glad to hear they didn’t give me any further stress after receiving his letter. I’m grateful for his help as always.

My neighbor yelled that I was “fat” yesterday. I was weighed today in the office, as usual, and it hasn’t changed. In fact, I weigh the same today as I did 20 years ago. I’m just swollen from my medical conditions, and the neighbor can go take a long walk off a short pier. I know the 170s is overweight, but being built like a gladiator (nice work, genetics, you asshat), my normal is in the 150s. So I’m looking at 25 lbs to lose. Dr. B has shared no concern whatsoever about it, so it is strictly at my own discretion.

I received a call from Lifesouth with an urgent need. I told them I would be in to donate as soon as I can (Sunday or Monday, if I’m strong enough). I’m resting and slowly, painfully cleaning my apartment in the meantime. If you can donate blood, please consider it.

My next appointment is therapy, but it may be canceled due to covid (omicron is rampant here). I will find a way to keep myself going mentally, even though it's hard. My physical health is my #1 challenge, as always.

I’ll be back with other life stuff soon.

The grief continues as another friend is gone too soon

I am completely heartbroken that Malisa has passed away. She was still paralyzed in the hospital (since my last post a while back), and doctors had not yet figured out what was happening when she died.

She was the sweetest, most darling human, and fought so hard to not only live, but to enjoy life in spite of mitochondrial myopathy and periodic paralysis. She was truly incredible.

Please think of her 12 year old daughter Julianna and her partner in life David as they navigate through this devastating time.

No Thanks 2021, and Thoughts On A New Year

2021 was a nightmare, and 2022 is starting off a bit challenging, isn't it? I have a difficult time being optimistic when things are so terrible in so many ways, but I know I have to hang on to hope and continue on to the best of my ability. It is hard hard hard, but for now, it is still possible.

So here I am, with a giant word salad for my perseverant blog readers, who I appreciate far more than I have shown lately.

I experienced the deaths of over half a dozen people in 2021. Some were family. Some were long-time, precious friends, who played important roles in my life, and I miss them so much. I didn't get to attend a single memorial service or say goodbye (I somewhat said goodbye to Lorna, but not officially...just stayed in touch and told her what she meant to me, which I guess is the best a friend can do from another state). Then we (as in all of us) lost beloved icon Betty White, who has been a part of my life quite literally since the beginning of it. I appreciate some of the folks on "PsychTwitter" for speaking out about how valid and normal it is to grieve over the loss of public figures. Regardless of their ages or circumstances, it's painful for highly sensitive empaths to process that people we are comfortable with or look up to are suddenly no longer present in the world.

My health is a constant challenge, and the pain is never-ending, as it has been for many years. All I can do is take one day at a time, and choose to stay alive and keep going. I have moments when I want this to end. Those moments are daily. What I strive to do in those moments is try to observe without judgment from the point of view of someone else, and just wait it out until I can collect myself again. Sometimes, this effort goes poorly, but obviously not a total fail, since my stubborn self is still here. If I could wish for anything in 2021 regarding my health, it would be pain relief and the understanding of my doctors and loved ones. That's my wish every year, I suppose. Maybe it'll happen someday.

If you remember last year's "new year resolution" then you know there wasn't one. The goal was simply to survive. So mission accomplished, I guess! In addition to that, I gained:

- Many important conversations

- A new art skill, and even a few sales

- New info and further understanding of myself and others' identities

- Sweet new voices on social media *waves at all of the voice actors I started following*

- More love and care from friends than I will ever deserve - thank you endlessly for all you did for me this year as I struggled through deaths and illnesses and hurricanes and more

What I hope will happen in 2022:

- Survive. There are moments I cannot stand being alive, and I stay anyway. There are other moments when I am so physically ill, I think I'm not going to make it, but I make it anyway. So the goal is to keep surviving in spite of those dark moments.

- Support my favorite voice actors. I have met several in the past, but my dorky heart is absolutely set on saying "Hee-Ho Homie!" to Casey Mongillo's face before I die. I have reasons for caring about them that I cannot state in a public blog (ask privately, if you must). At any rate, Covid is big problem, but I am hoping to God this will happen in February. They are scheduled at an anime con in my state, so it's just a matter of the Con not getting canceled AND them not cancelling AND of course me being physically strong enough to attend. Fingers crossed.

- It is such a predictable thing to say, but I must reduce my weight. I stay stuck between 165-180, and can't get below that unless I am violently ill, which is a horrible way to lose pounds. Realistically, I need to be in the 150-160 range. That's about right for the way I'm built. As much as I would like to be ok with my body, I'm not. I'm extremely uncomfortable from the waist up, and on the verge of triple D, so I need to figure out a way to tackle this. It is beyond frustrating that exercise causes life-threatening episodes (ion channelopathies suck!), but I must do what I can diet-wise to get a handle on this.

- Return to therapy. I suspect I am going to need it for a long, long time. There is no fixing me. There is only management. So I must stay in the mindset that this is part of my medical treatment, and keep going even when I don't feel like it.

- Support more individual people. Last year, I supported Black businesses and charities. This past month, I reached out to certain individuals in the LGBTQIA+ community with words of encouragement, product purchases, and five or ten bucks here and there with a caring note attached. I want to keep doing that. I just joined a Patreon for the first time to support a Demi-Gray essay writer. Since I am also Demi-Gray, it helps me to know others are out there who understand me, and they are educating people about what being Demi means. I've noticed a fair amount of argument on social media, so I wanted another place to go where I can continue to learn in both solitude and solidarity.

- Control my iron-deficiency anemia so I can continue to donate blood to Sickle Cell patients.

- Learn to draw manga. I drew one as practice in 2021, but I want to get better at it. I am hooked on anime right now, so naturally the arteest wants to do her favorite characters justice in cute drawings. My health and motor skills are poor, but I am going to try. I'll share pics later.

- Find homes for the rest of my vases and candle holders, then focus on painting Christmas ornaments. I'll share pics later.

- Continue minimizing my apartment. I cannot stress enough how much of a mistake it was to collect things in my youth to give to future children. I beseech you, do not do this to yourself. I have so much stuff to find homes for, I get overwhelmed and anxious and hate my life. I am to the point that I am probably going to donate everything to a worthy cause and call it a financial loss. I did finally (!!!!!!!!!) unpack my books after six years of living here, so I've made a pretty good start in reorganizing. I'll share pics later.

Needless to say, my blog in 2022 will involve pics. I don't know what else will be shared, but at least there will be that.

Please, friends, readers, everyone: stay, keep going, and be as well as you can in these tough times.