Angel's Medical Journal

Heyyy guys. It's been a little while.
I am getting worse. Despite being enrolled in physical therapy, my back continues to flare up and my arthritis locks up my joints.
I'm sitting here in bed with the worst nausea, despite taking 2 entire zofrans.

I did find my miracle painkiller in the end- 800mg ibuprofen. I know, right? We try all this shit- the naproxen, the prednisone (which we even tried boosting), a steroid shot, the pregabalin, the cymbalta, the hydrocodone... God, it gave me nothing. Relief was a distant dream.
But then I remembered my uncle's old bottle of military-issue ibuprofen. 800mg, though its old, so its probably more like 600. That first day I took it... wow. It was the most relief I've felt in months.

So I've been regularly taking it. The pills are huge and I hate them, but they're the only thing keeping me steady. Of course, as NSAIDs do, it's lost effectiveness over time. I may need to swap to another drug, but things like naproxen haven't given me the same relief, even at higher doses. I may request 500mg naproxen, knowing how well 1000mg did for me back in high school (don't take 1000mg of naproxen, kids, that's its LD50. my liver is just built different).

My MRIs showed nothing. I have the discs so my rheuma can see them, but I doubt she'll see anything. My thorasic spine of course had the most abnormalities, but they were just like, my scoliosis curve and my RA eroding the joints. There's some intrusions to the spinal cord and bulges/dehydration of discs attributed to scoliosis, but they're so minor they're likely not the culprit.
If it's not my brain, and it's not my spine, what is it?
We know it's neurologic in nature, and we know it's full-body.

I might have found another theory. B12.
My blood panels always come back clean, unless you're looking at my ANA (which has increased 3-fold, yikes), so no one every really catches something wrong with me. My vitamin levels are steady.
However, I read a study. Recently released, it tested patients with neurological symptoms typical of B12 deficiency who had normal B12 levels in their blood. A spinal tap revealed, however, no B12 in their spinal fluid. It wasn't crossing the blood-brain barrier.
It was caused by an antibody that was targetting the receptors B12 binds to. It's autoimmune. They fixed this problem with immunosuppressants, IVIG, and B12 supplements.
Here's an article on it, if you're interested.
So I wonder if that's me. Lupus-like symptoms, neuroinflammation, everything resulting in neurologic symptoms. I fit the bill.

I need a spinal tap anyway. I'm finally booked for a neurologist, but it's in late September, because the nurse put me down as low-priority because I didn't sound in pain on the call. What the fuck, dude?

I'm out of lexapro, too. Which sadly I need to FUNCTION. That drug is my lifeline. I'm taking my secondary to try and soften the blow, and it's mostly working. So I'm a bit more depressed than usual, and I've caught myself in a few spirals.

School starts on the 21st. I need to go, lest I lose my teach-out. I need to finish.
Luckily, they seem much more accommodating than my old college was. I have to take it easy on my body, but I'm mostly worried about walking around campus.
I need to start wearing that new back brace...
And masking again. I think if I got COVID again, I'd be functionally dead. This spike in cases is scaring me.

My rheuma plans to up me to a biologic when I see her next. I need a miracle drug, and I need answers. I'm on the end of my rope here, and fighting for recognition and respect from medical staff is exhausting.
I can't even go to the ER anymore, dude. They just refuse to look into it, refuse to monitor me, etc. The last doctor just lectured me about exercise. I told him I have CFS/ME. He goes "oh but CFS/ME improves with exercise" which has been debunked for fucking YEARS. I hate that people still fucking believe that. No, Karen, it makes us WORSE.
They put me down as "no clear distress". I was curled up on the bed sobbing. I'm pretty sure that's distress.
Doctors just fucking hate chronically ill people, especially if they're young.

I know my state of mind is fucked up right now because I'm off my SSRI, but goood I need a fucking miracle.
I'll take anything at this point. I want them to chase the vague stuff. I need to know what's wrong with me, even if they can't fix it.

Hiii I'm back from my MRIs. As those of you who follow my posts regularly know, this appointment was rescheduled so it happened today instead of when it was supposed to.
Brain, neck, and lower spine. They stuck me with contrast. It's really cool how fast modern MRIs are, I remember my first brain MRI. It took hours. I was only in here for maybe an hour 30 tops, and they did four scans!
So that's pretty cool. Thank you, modern medicine.

So, um, other than that...

This morning wasn't good. I had an IBS attack shortly after waking up (I drank too many Cokes... oops), and when I went to the restroom to sort it out, I suddenly felt extremely, extremely faint. My hearing went and my ears rang. I decided, I need to lay down. I need to go to bed.
I stood up. Weakness. I stumble out the door, and suddenly I'm blind. By the time I reach my bedroom door on memory, I'm disoriented and my legs can't hold me anymore. I fell to the floor, luckily in a sitting position that didn't result in injury.
I didn't even make it to my bed.

A good thing to do when you're in a state like this is breathe deeply. I could feel my heart pounding, but I had to keep steady breath. Maybe it was better to go back to the bathroom.
So I tried. It happened again. I hit the floor in the bathroom with the same hearing loss and blindness and weakness, and pain harshly starting to tear at my back.
I sat and breathed with my head hung for a while, until I felt okay enough to stand back up. Shaky legs, but the fainting was gone.

I went back to bed to lay down and recover. Then the extreme pain that started this whole 3-week ordeal came back.


It's a burning pain, like you're on fire beneath the skin. It's severe, running up the spine and into the shoulder muscles. But it was ripping at my whole back, and the burn spread to my upper legs and head. Suddenly, I was out for the count.

Luckily, my mom returned at a great time, and I had taken a hydrocodone while I was in the restroom as I had already felt the burning start to creep. She brought me ice packs for my back, which helped immensely. Cooling off the burn in my back slowly but surely reduced the burn in the other areas of my body, until the hydrocodone kicked in and I was a lot better. I even ate some!

So, it's been a bad day. I'm really weak, and with another attack of that severe burning I once again worry that I may have to ask my GP for hydrocodone. I only have a limited supply, but it's doing the heavy lifting of getting rid of the pain. But my painkillers just aren't cutting it... They only reduce the pain a little bit, even when I take all of them together like I am.

I'm gonna rest a while. I need sleep.
I've been sleeping so poorly lately... My body is definitely acting like it's sick.

Before I start, in late Feb I got COVID. That marks my second infection. I got concerned when I began experiencing brain fog and took a test. Positive. It started with three DAYS of severe, nonstop migraine.
It lasted the full two weeks and knocked me out of school for the time. Luckily I'm back now, still catching up...
But that's not the important bit.


I saw my new rheumatologist! The bloodwork results are in and my lymphocytes are high (as literally always), my liver function is a little low (this is new but it's probably just my drugs as my cocktail has gotten significantly larger), and I'm positive for a protein that erodes joints. My ANA is still positive, but I don't know if it's increased or decreased.

I've had my fibromyalgia confirmed, and she's suspecting I may have early stage rheumatoid arthritis. My mom is also showing signs, and my abuela also had this (thank you for not telling me MOM), so it's looking likely.

All my fucking white blood cells are attacking my joints! Probably, anyway. They're attacking SOMETHING.

I'm on a run of steroids to see if I respond, as if I react (which I am), it confirms I'm autoimmune. I've been almost pain-free for nearly this whole week I've been on them. Very high-energy and happy! I took the first of my last two doses today, and the exhaustion is coming back. I'll miss feeling how I did when I was on the higher doses. If that's what normal feels like, I want that every day of my life.

Hopefully immunosuppressants will do that for me.

We're back from Florida. My GP has suggested magnesium and potassium supplements to rule out an inbalance causing my leg issues. But my mom and I both caught a horrific cold on the 1st.
I'm so fucking tiiiired. My fever is through the roof but I'm flipping between being hot as hell and cold as fuck.

Scythe PHIGHTING! release sooner so I can ignore my issues pleeeeaseeeee

On the 23rd my legs locked up the worst they ever have. It was throbbing pain from the knees down and the muscles lock up making movement difficult and painful. I couldn't stand for more than 2 minutes without suffering about it. My feet were blue. I was miserable at 4 AM, when the pain was the worst, so much I was considering going to the ER.

They still hurt, just not as bad. My bad knee is getting the brunt of it. When I helped my mom pack a little bit today, I lost feeling in my ankles and feet. I don't trust myself walking, though.

Guess I'll be in a wheelchair when we get to the airport...

I LIVED BITCH

Got colonoscopy done. I'm probably allergic to something in the first part of the prep they gave it, it gave me awful full body pain.
I'm out and I'm good now though. Just very tired.

Nothing too serious. Some acid damage and some inflammation. I just need to lay off the sodas, and my meds may be causing a lot of acidity too so I'm expecting to get more meds to help with that.

Feelin' a ton better after purging a lot of backup. All the pain related to constipation is gone, but now I'm stuck with the sharp pain sites on my lower abdomen. My antibiotics are in- they're these HUGE pills, so we'll see if that clears any of it up. It's probably not an infection, knowing what I know now, but may as well be safe than sorry. I alllways show inflammatory markers, that's just undiagnosed immune disorder baby!!!

My annual with my GP brought to light some potential causes the ER didn't. I had massive high levels of... something important in the digestive area, which the ER failed to tell me. Turns out it's PROBABLY my gallbladder having issues, maybe causing a backup into my pancreas and thus making my whoooole lower digestives unhappy. My colon is fucking PISSED but when is it not? I've got IBS, that thing always hurts.

After eating a little in the morning I immediately had the worst pain yet. I attempted to take a hydrocodone for it and immediately coughed it up. Trying again, I threw it up as well as a lot of the water I'd just drank. Begged my mom to take me back to the ER, but I had to wait till my abuela's appointment with the nurse was through- she ran an hour late. I curled up in my bed and suffered- lower back pain, dizziness, stomachache, with all the previous symptoms from before. I was miserable.

ER was very populated and we waited another 5-6 hours to get called back. Presented with a resting heart rate of 130 BPM, higher than even my normal tachycardia rhythm. Nearly passed out in the lobby after, breaking out in a massive cold sweat.



Felt better after a nap, but was starving. We waited... and waited...

Finally got called back at around midnight. Xray showed constipation, urinanalysis showed an infection. They gave me morphine again, and despite me saying it did nothing for me and the nurse saying it wouldn't burn because he diluted it... it still burned, and it still did nothing.



It's assumed it's just really bad constipation. Prescribed antibiotics and a strict regiment of powerful laxatives... They make the visocity of water horrible, but my mom and I figured mixing them into smoothies may take away the issue. We'll try tomorrow.

Hopefully this is the issue and it's not just another misdiagnosis. If I need to go back, we're gonna try a hospital more close to the city...

Got rushed to the ER on the 4th for severe abdominal pain. Probably something PCOS related but they found nothing. I was dehydrated even after they pumped an entire bag of saline into me and I've been dehydrated ever since. Nothing quenches it.

Blood tests, urinalysis, and a CT scan showed nothing. Everything looked fine, as always. Medical staff were stumped again. So after filling me with saline, zofran, morphine (which I don't respond to, turns out), and eventually hydrocodone-acetaminophen, I was sent home with a hydrocodone-acetaminophen prescription. But heyyy I still got good veins I guess, but it doesn't stop me from bleeding like a motherfucker every time they stab me to get in there.



Three days later and I still feel like shit. I cannot physically go downstairs and leaving my room is difficult as is as I've gotten dizzy lately. Opiates get rid of most of the pain, not all of it, but it also makes me super dazed, tired, and sometimes incoherent (that's also the exhaustion). My sleep is super fucked and I'm on a pattern where I'm really only asleep when the drugs knock me out.

Shit hurts. It's since morphed into a sharp pain in my lower left side with a smaller spot of sharp pain on the right. The first day using the restroom nearly made me faint each time.

I'm genuinely surprised and mildly upset that I wasn't brought into inpatient for monitoring. Admittedly I should probably go back because I'm not improving. It's just a matter of getting my mom to listen to me because she's the one who drives. But she wants me to wait two more days or something.