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.