#ive been having a migraine all day because i had to fast for my sedation. and now i dont even get to medicate for that once before

[trauma-trove]

I hate that I'm held at social gunpoint to never EVER be anything but picture perfect niceness while doctors and nurses bully me and treat me like shit. It drives me insane. I tried being transparent with my last nurse about how my dietary problems, thyroid probpems, and chronic pain treatment was really going to interfere with a procedure and that I wanted to schedule it AFTER my other appointments and procedures. She told me "well, I can't do anything about that. The doctor wants it done." I tore the instructions she gave me right in front of her. They were salvageable. I could tape them together. But she looked at me like I called her a fucking slur.

"Oh but think of the doctor/nurse/receptionist you're doing that to! Every time a patient loses it, more medical practitioners leave the field!"

I.

Don't.

Care.

You're DOING this TO ME. I have the right of being the victim here. If someone is pushed and forced and coerced and bullied and assaulted enough times, they have a right to treat their offenders like shit.

I'm fucking sick of it.

[thatkidwiththeunkepthair]

So I know there's been a lot of radio silence on my end lately. I apologize for that. Some crazy things happened.

In April, I was diagnosed with a genetic condition called Ehlers Danlos Syndrome. I have type 3, which is the hypermobile type. EDS is a connective tissue disorder, which basically means that my connective tissues (ligaments, muscles, skin, tendons, etc.) Are defective. They have been since birth. It's all down to defects in my genetic code.

So my type means that my joints are super hypermobile. I'm "double jointed," if that's how you want to call it. But the problem is that my hypermobile joints means that my joints dislocate and do something called "Sublux." That means that they dislocate partially, but not fully.

I was lucky to be diagnosed at 18. Most people go their whole lives without a diagnosis. It's classified as a rare disorder, but it's unknown if it's rare because it's underdiagnosed, or actually rare.

But I was also diagnosed with a few comorbid disorders, or disorders that go hand-in-hand or are caused by another disorder. For me, those disorders are Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and a Secondary Adrenal Insufficiency (SAI). The last one is not confirmed as a comorbid disorder, but there are a lot of people in my EDS groups that share an SAI as well.

The POTS is a type of disorder called dysautonomia, which is a malfunction of the autonomic nervous system (ANS). The ANS controls things you don't control - things like your heart rate, breathing reflexes, digestion, blood pressure, and so on. In POTS, these things malfunction and don't work correctly. My heart rate is incredibly irregular, my blood pressure wasn't stable, and I was passing out. I would get these massive migraines that medication would only make worse. Come to find out, it was due to the POTS. When I would stand up or change positions, my heart rate would skyrocket and my blood pressure would plummet. Standing was a challenge, as I would pass out if I stood too fast. I was also chronically dehydrated, and my migraines would be alleviated whenever I would end up getting IV fluids. At the same time that I was diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS), I was diagnosed with POTS.

A month or so later, I was diagnosed with Mast Cell Activation Syndrome (MCAS). It's essentially where your body has put off too much histamine and chemicals and creates new allergic reactions. It's a chronic disorder that never leaves. New "allergies" are triggered as time goes on, and I'm one of the unlucky ones who keeps having new reactions. But I was diagnosed with that during May/June of this year as well. It's rather frustrating, as it keeps happening with things I've never had issues with.

The Secondary Adrenal Insufficiency was a surprise to my doctor and I. I didn't know your adrenal glands could fail like that. But the main thing with Adrenal Insufficiencies is that for some reason, your body is not making Cortisol, which is needed for your basic life functions. Without cortisol, you can go into a fatal medical condition called an Adrenal Crisis. An Adrenal Insufficiency can be primary (caused by damage to the adrenal glands themselves), or secondary (caused by an issue in the pituitary gland within the brain). Mine is the secondary type, as far as we know. I have to take steroids daily to make up for the fact that my body doesn't produce the ones that I need.

But the biggest reason I've really been MIA is that my EDS flared up, and my left shoulder dislocated at the physical therapy appointment I had to do for my EDS. It was supposed to stop my joints from doing exactly what had happened, lol!

But it kept dislocating and dislocating. I originally really dislocated it for the first time on September 1, 2017, but had previous dislocations I'd never noticed before. I worked a full 12-hour night shift on that same night, and ended up doing an assisted fall with a patient (I work as a CNA) and also held down a severely drunk man who had thrashed and fought us while half unconscious when we tried to take blood.

This only worsened things, and I went home on September 2, 2017, and went to bed. I was in a shit ton of pain, and could barely sleep. I took a tramadol and went to bed. My shoulder was killing me, and I told my mom, who kind of brushed it off and said it was going to hurt. On the 3rd, I realized that my shoulder was fully dislocated. But it was rodeo time in town, and I wasn't going to go to the ER only to sit in the waiting room and be surrounded by idiot drunks!

On September 4th I got my shoulder relocated for the first time in the ER. And then again that evening, after it had slipped out of place again.

On September 5th, I got my shoulder relocated for the 3rd time under taught sedation that morning. That evening, however, was a different story. The doctor decided to do it without anesthetic or medication and I thought I was going to die. I was eventually relocated and then sent home. As I was walking out of the hospital, it dislocated again. I refused to go back in, because I was terrified she'd try to relocate it without medication again.

But we ended up at the clinic the next day. They tried to put the arm back in, but it wasn't going to stay in. They medicated me and then relocated it. The doctor was holding my arm in his hands when my arm just dropped from the joint. You could see him go white as a sheet. They tried one more time before giving up and calling the shoulder surgeon in the next town over.

MRI was done, showing at least 3 tears in the muscles around the joint, and a problem with the capsule. We got an appointment with the guy who did my knee surgery, in hopes he'd take a look and say he could help.

He didn't.

He referred us to Dr. Denard, who is one of the top 20 shoulder surgeons in the US, but when we saw him, he didn't even touch me. He looked at me, shook his head, said "I can't help you. You have EDS," and left.

I ended up getting in with a surgeon at OHSU, in Portland, Oregon. It's 6 hours from my home, and is an incredibly long, frustrating drive to and from. But Dr. Brady agreed to operate, agreeing that I need the use of my arm. But there was another surgeon, Dr. Mirarchi, who is an EDS expert and a great surgeon. But Dr. Brady and Dr. Mirarchi performed surgery on November 1, and I spent the night in the hospital to control pain and to take care of my other comorbid conditions.

But I'm home now, and on pain medication and trying to rest. I spiked a bit of a fever this morning and we're worried, because I've had post op infections before that were serious. But we think I may have just caught a bit of a cold.

But that's what's been new with me, I think. I'm pretty sure that's all of it. I'm hoping to get more active on Tumblr again, but it may turn into more of a blog than anything else...