A Scare

My right breast and armpit have been hurting for awhile now. Then I started noticing mystery bruises but also mystery sores. I couldn’t find a lump though. Nevertheless these things need checked.

I went to my OBGYN and got referred out to a mammogram that happened on election day. That came back clean and clear.

Next up on the list is to figure out why there is pain in the general area of my liver and gallbladder. It’s probably just gallstones and I’ll have them yank it next fall when I can take a week off work. But considering my bio sister almost died from catastrophic liver failure, I’m going to go ahead and ask my doctor to run a full liver panel when I go in next week for my annual physical. Just to be safe.

I have so much more to share. Lots happening. So come back next week and I’ll share what’s happening.

Hmm. I am writing this on the app while I sit in the emergency room with Robin. She’s going to be ok. She just hurt her back. But I needed to write my post so it could go live tomorrow (Thursday) and knew this was my best chance to sit and write. Anyway, whereas normally I’d insert a photo right about now, I don’t know how to do that from the app. So no photo this week, I guess.

Just So Fucking Tired

The trouble isn’t that I’m not smart.  I’ve tested for MENSA.  I just barely didn’t qualify.  I’m in the top 2%, not 1%.  I graduated Summa Cum Laude.  I’m capable of both math and writing.  I’m fully capable.  I have so much potential. 

The problem is for 4 years now, my brain has not consistently been getting the blood and oxygen that it needs to function.  Take normal neurodivergent forgetfulness and magnify it.  I can’t even info dump on my special interests because I can’t retain the knowledge.  I lose everyday words all the time.  I’ve forgotten how to do the math that I did for 20 hours a week for 3 years while working in the maths department.  My spelling is worse than usual because I can no longer see how words go together.

Tumblr jokes about having only one brain cell, but I’m watching in real-time as lack of oxygen kills mine off.  At least that is how it feels.  That is how it seems.

And if I didn’t have the potential I have, maybe I wouldn’t notice it as much.  But I’m watching myself just get dumber and dumber.  At least that’s how it feels.  And it’s painful. 

They say it takes 4 years for your brain to recover from sustained blood loss.  But I can’t keep blood in my body long enough for my brain to recover.  So it just gets worse and worse.  And I feel… some things are worse than death.  Not being dumb itself, that’s fine.  But watching my potential and the dreams I had based on it burn away from a consistent lack of oxygen.

And my doctor, the specializes in blood (the title escaped me, you’ll have to excuse me) just has zero interest in figuring out why I suddenly stopped making my own blood 4 years ago.  I got regular yearly blood work up to that point.  I wasn’t anemic.  And then suddenly I had half as much blood in me as I was supposed to and that was all she wrote.  I’ve been severely anemic ever since.  I took mass quantities of iron as a supplement.  My body just flushed it.  The only thing that forces my body to make blood is a regular iron infusion.  Sometimes, even then, I still need a blood transfusion.

My friend Joy taught me to have my B12 levels checked.  Mine is checked 4-12 times a year.  I take mass quantities of B12 anyway because maybe I have the motherfucker gene and my body needs more than it should.  It helps a little, but it can’t keep up.  My blood doctor refuses to test for anything.  He just keeps ordering iron infusions and blood transfusions as if that’s to be the end-all solution for the rest of my life.

And I’m so tired.  I’m so fucking tired.

I had a potentially life-altering realization over the weekend that would explain like a million things at once, but would also mean I’m dying in a, there is no saving me sort of way, and it was almost a relief.  Because while I’m not suicidal, I can’t keep living like this. 

I’ll talk more about the realization later once some tests are run.  Because I don’t want to alarm people prematurely.  It’s probably nothing.  I’m probably no more dying than usual, considering I do keep almost dying anyway.  This post isn’t about that thing.  I’m more illustrating, by alluding to it, just how tired I am.

I’m just so fucking tired.  So fucking tired.

Phoning it in

I was planning to write a follow up post on my new job, but I just don’t have the spoons this week. I have no blood, once again, and I’m very tired. I did get a treatment this week and I have another one next week for the no blood thing. So it’s being handled. But tired.

Have a flower the birds grew and Robin photographed

What it’s Like to (Almost) Die From Anaphylactic Shock

This is a summary that I wrote out a day or two after I almost died the other night. Everyone knows about the throat closing up bit. But there is so much more to it. The summary is a little incoherent maybe. But the entire process of dying is a little incoherent. So you’ll excuse me that, I’m sure.

“The throat closing and chest tightening and sudden onset of headache because you aren’t getting enough oxygen and you try to swallow but there is something in your throat that feels like a noodle. There is no noodle in your throat. There is only throat in your throat. But you can’t swallow past the noodle. And holy fuck maybe if the headache would let up maybe you could think straight but the headache is only getting worse. And your chest is being squeezed by Andre the Giant as tight as he can squeeze. And the flaming sword piercing through your chest hitting your spin doesn’t help anything. The paranoia feels well placed though. You’re actively dying. The paranoia hit before the rest. It always knew you were dying. The noodle is getting bigger. Your throat is getting smaller. The sword is getting hotter. Andre is hugging tighter.”

I had my first double epi event that night. I always start with 6-8 benadryl. Epi pens are expensive and thus hard to come by. I know this. But about an hour after I took the meds, the lack of oxygen headache was setting in, and the next step is turning blue, so I went ahead and injected the first epi. It sort of helped and the noddle lessened. But then is came right back so I used the second one on the ride to the hospital. You don’t actually need to go to the hospital with just one epi. But a 2 epi event can lead to cardiac arrest so as soon as it became clear the one wasn’t going to cut it, we headed out.

Anyway, they pumped me full of steroids (and sent me home with more) and monitored my heart for a few hours. But the epi pens did their job and my heart was fine, so I was released at the end of the 4 hour monitoring period.

Here is the fun part.

Guess who has met their epi-pen quota for the year. Apparently, due to the cost of epi-pens (A generic brand 2 pack is over 600$ because in the land of the free pharmaceutical companies can charge what they want. These same 2-packs are 32$ before insurance in the UK, for the record), my medical insurance will only cover 2 near-death experiences a year. The third is life insurance’s problem. I do have a full set on hand. I’ve only almost died once this year. But if it happens a second and then a third time? Guess I die for real. Btw. This isn’t the 2020 quota. It’s a rolling 12. I can’t get another refill until June 2021. Also, this is why I take a half bottle of Benadryl before I even think about the epi. But sadly, allergies like this get worse with each exposure. My throat will close more and more with each exposure and get harder to reopen. And I can’t just avoid the thing since it’s in everything and not listed on the label. Obviously I do my best but… Anyway, when I say capitalism kills this is what I mean.

So that’s where things stand in mid July of 2020.

Like This

I didn’t always used to be like this. Whatever that means. My body forgot how to make blood at some point. Not sure when. Who knows how long I’ve been symptomatic. But my hemoglobin first fell to a nice and frightening 6 pretty much exactly 3 years ago.

I didn’t always used to be like this. When you’re body stops making blood on its own and you spend at least 3 years with never as much blood as you’re supposed to have, cognitive function goes. The brain isn’t getting enough blood. Nothing is getting enough blood. But the brain is where you miss it the most.

I didn’t always used to be like this. It’s a whole other type if learning disability, really, to semi-permanently function at a fraction of brain power.

I didn’t always used to be like this. I mean, yes, I’ve always been a dumbass. But that’s always been a reference to my wisdom modifier. My intelligence modifier was through the roof. I only took the test because I was lonely and wanted to make friends, but I almost got into mensa after I was already symptomatic but didn’t yet know it. I had potential.

I didn’t always used to be like this. I still graduated with top Latin honors. Summa Cum Laude. Despite being at rock bottom through most of it. Pulling off straight A’s while getting regular blood transfusions that only did the trick a month at a time. Iron infusions in between, that only did the trick a month at a time.

I didn’t always used to be like this. But even like this I still fought as hard as I had to. Because my self worth has always been tied to my intelligence. It’s all I’ve got. I don’t judge others based on theirs, don’t get me wrong. I know there is so much a person has to offer beyond intelligence. But I don’t have those things.

I didn’t always used to be like this. And I’ve forgotten that, as my cognitive function has gotten worse over the past however long.

I didn’t always used to be like this.

This looks like forgetting common words or the names of things time and time again like they are a foreign language at the tip of your tongue just out of reach. This looks like taking days to read books that used to take you hours. This looks like not being able to remember things from episode 1, now that you’re on episode 8, even though episode 1 was a mere hours ago.

And I won’t always be like this.

And I won’t always be like this. I started taking a high dose of B12 a few months ago, against the recommendation of my doctor because he said it wasn’t my B12. Two doctors said that. But I had a nugget of knowledge and a hunch.

And I won’t always be like this. A few months ago I started making my own blood. Test after test has shown my levels rise and stay steady. Well past normal.

And I won’t always be like this. It’s been 11 months since my last blood transfusion. Maybe 6 months since my last iron infusion. I was about due when I started the B12.

And I won’t always be like this. The source of my nugget of knowledge tells me it takes about a year to fully recover from this type or anemia. A year to reach my full cognitive function potential. Whatever that means for me now.

And I won’t always be like this. I have a long way to go. I don’t feel any different. I don’t remember how I used to be. I don’t know what I’ll become in the coming months. But I know.

I won’t always be like this.

Consider Supporting Me?

Sick of being told that it’s all in your head or that you just need to lose weight? I know I personally have requested tests that should be common sense just to be turned away. Why doesn’t my body make blood? Sometimes that’s just how it be. No, we won’t run the genetic test that would prove I need more B12 than your average person, and that would perfectly explain why my body can make blood. Oh, it’s just a funny coincidence that my body started making blood when I started taking a B12 supplement. Life is funny sometimes, but correlation is not causation. I know I’m not alone in this. So I’m going to buy this shirt and wear it to EVERY SINGLE doctor’s appointment until it’s no longer true. Try me.

Spoonie Shirt
Spoonie Shirt
by Wearables4Edibles

Those of you who have been here for a while know, my store has all sorts of things. So please take 10 minutes and check out what I have to offer. This store can potentially help me pay bills, especially since I’ve been laid off.