I’m still alive.

Hi.

It has been a long time. A lot has happened in that time, but nothing has really changed a whole lot.

I’ve been trying to decide if I should start blogging again. I don’t have much to say these days that I’m not already saying on social media, but perhaps this outlet will help me to process the things of life again, and maybe even find a new reader or two. I’m still unsure this is the right place.

My life update is pretty straightforward. My medical care is up in the air now that my primary physician is retiring. I don’t know what’s going to happen as a result, but my brain, of course, is fixated on the worst case scenario that I’m going to simply die.

Maybe I will. Maybe I won’t. I feel indifferent about it right now, which is better than panicked, so whatever.

My medical needs are many. Some medications are covered by insurance. Quite a few are not. I need specialists and don’t have financial access to them. My medical fund is a mostly dormant but still active PayPal account, if it matters. paypal.me/KBosarge

I’m the only one who sees it, and the donor can designate funds, such as “fuel costs to the clinic” or “buy your magnesium” if that’s helpful.

Never donate unless you’ve paid your bills first. No sacrifices should ever be made on my behalf. I couldn’t live with that.

I had to reapply this month to stay in my apartment. This is maybe my 9th year? I am not happy, but the people are a little quieter than they used to be, so that’s something.

Anyone who knows me knows how I feel about the election and about the people who are responsible for the outrageous result. I don’t need to spell it out for you. (Idiots.)

That nutty Q&A site Ask is finally shutting down. I have been there 12 1/2 years and responded over 13,000 times. Wild place. I gained little to nothing by being there, but I’m fine with that. It served its purpose as a distraction. The final three weeks are upon us, and I reopened my page to anonymous questions and comments. Say bye or something. ask.fm/ugottafriend

I no longer add people to Facebook (kiss my ass, Meta) or Twitter (kiss my ass, Elon) and my account on the fedeverse or whatever that dumb word is is not for public sharing. I like my solitude without the drama and politics of the other sites.

When I’m not curled up in a fetal position on the couch or in the bathroom, I’m sorting the apartment or on Twitch (it’s ugottafriend, if you do Twitch). I play Pokémon Community Game and Embervale on occasion. I am not nearly as serious about it as others, but I’ve met a few decent people that I would consider friends, so that’s nice. I became a moderator on voice actor Casey Mongillo’s channel. They’re a good homie, and I’m doing my best to look out for them. I was gifted a lot of video games by friends a while back, and I might actually do some streaming myself if I can ever afford Wi-Fi and a better computer.

I am an Aunt again, to Max. The name is a tribute to my half brother who died 28 years ago. So that’s quite a tribe now: Josephine, Zoey, Sadie, JJ, Asher, Allie, and Max.

I’ll come back soon, if I feel like it. Otherwise, take care of yourselves.

Wowzers, it’s a medical update!

Can you believe it, folks?

I went to Internal Medicine today. It went well. I am dealing with kidney stones, but thankfully I’m not screaming in the emergency room. It’s still pretty miserable in addition to migraine and muscle pain that I live with 24/7. The nurse gave me a shot of Toradol, which is a prescription-level NSAID.

Labs were good except blood sugar, but I had just guzzled a huge bottle of Gatorade before the appointment. Sugar was 195, so they ran a stat A1C and it was normal! Not even high normal or dangerously close to not normal, it was normal-normal! Considering my entire immediate family is diabetic, I am relieved to once again dodge the bullet. I am going to switch back to BodyArmor drinks though, because I think it doesn’t raise my sugar as much. Nobody needs a spike like that, especially when glucose has the potential to be a paralytic trigger (not as much for me as other triggers, but still a risk).

I am finally having my aldosterone checked! I am interested in knowing if it’s high. My biggest HKPP trigger by far is hormone release, especially adrenaline. If my aldosterone is elevated, it’s contributing to my symptoms and I may be allowed (by insurance 😑) to resume Inspra. It’s horrible, sometimes downright murderous, that insurance companies get to say someone doesn’t need an expensive drug that was prescribed. Just awful.

My Vitamin D level has been a lifelong problem. We’re still trying to figure that out. And of course Vit D can contribute to stone formation, which is a no-win situation. 

My body is so difficult. I’m grateful to have a doctor who is still trying.

My Neurology appointment was moved to May 1st and switched to a different doctor in a city much closer than Birmingham. I will hopefully be ready to meet him to discuss migraine and autonomic nerve dysfunction.

I haven’t found a Psychiatrist yet. The one my doctor is affiliated with who takes my insurance writes Bible devotionals in the local paper. That’s a resounding NOPE from me. I may be out of luck.

That’s all for now.

International Ace Day

Thanks for the advocacy, from a Gray-Ace.

Medical records are vital to survival and correct care

Here are my medical records from University of Mississippi Medical Center. They’re the size of a large textbook!

I am no longer a patient there for financial reasons, but I went through this entire stack and I appreciate the documentation. I found a few minor errors, but it’s water under the bridge now. This is only one facility. I still have two more to pursue before I meet with Neurology Department of UAB Kirkland Clinic.

Now you see why my disability was declared quickly and without contest. Detailed reports by your medical providers are absolutely essential, and it’s their job. Advocate for yourself and ask for it.

Thanks Drs. Khemka, Roffwarg, Veda, Witt, Hillman, Fulop, Monico, Castaneda, and their assistants and fellows.

Don’t be sorry.

 

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

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

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

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

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

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

A Year of Streaming

Hey there, I'm alive.

The title refers to two things I plan to do in 2023. I am now set up to stream on Twitch @ ugottafriend. If you have a Twitch account, you can follow me and chat while I play games. I am also setting up interactive games that you can also play with me and others in chat.

I am too sick to have a schedule. Just catch me if you can.

I also plan to make this year on the blog a stream of consciousness. That may interest some people, and deter others. Either is fine. I no longer advertise the blog, and the alternative to once a month streams of consciousness is writing nothing at all. So, here I am.

A stream of consciousness is simply "thinking out loud" on a page. I will use this method to check in and offer a few things that are going on in my life, or perhaps something philosophical, psychological, medical, or otherwise. There's a lack of predictability with this kind of blogging style, which feels appropriate at this time as my life is anything but predictable.

I hope everyone is OK. I haven't been OK, and I don't know if I ever will be, really. But I am still a resident of this turbulent world, and doing my best to despite the constant need to leave it behind.

Happy Birthday to my sister Kayla in the afterlife. I miss you. 

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.