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.

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.