Firstly, I'd like to say that I'm so glad I found the GT community. I feel very much like I fit, and you're all awesome.

Second, I'd like to share my health woes so that when I get overwhelmed and need to vent, this is out there. Strangely enough, today happens to be two years to the date that my health tanked.

In the summer of 2008 (at age 28), I randomly started fainting all the time. My doctor was unconcerned, and since it was a military facility, I couldn't switch doctors. I was very vocal that something was WRONG, but my doctor blew me off. I wanted to be sent to a cardiologist to find out if I had a condition that members of my family have. It took six months to get a referral, and seven months to see the cardiologist. Weeks later, I left the area and moved to a different state. Within two months, I'd seen two specialists and had a diagnosis. I have neurocardiogenic syncope (NCS).

A simple way to describe my condition is that there's a breakdown in communication between the nervous system and cardiovascular system. I can't regulate my blood pressure on my own. Sometimes I can control it with water and increased salt intake and some physical tasks (clenching and unclenching fists when I feel a BP drop, for example), and sometimes I take an SSRI to help make a connection. My dog can sense BP drops, so before I had a diagnosis, I learned to recognize symptoms from watching her.

The fainting is actually a good thing. It's a reset button. If my BP is super low and not enough oxygen is going to my brain, I faint and then shit starts flowing right. It's much scarier for other people than it is for me. It's always worse in the fall. I don't know why.

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Two years ago, I awoke in terrible pain. It was so bad that I was vomiting, which drops my BP low. It was 9 out of 10 bad, and I thought I had a collapsed lung because I couldn't breathe. I couldn't think, I couldn't sleep, I couldn't sit. After a very long diagnostic process, it was determined I had a broken nerve. Neurontin helped confirm this. It wasn't entirely the case...something was wrong with a muscle sitting on a nerve, so I had it paralyzed with Botox, and that was a great decision. (It was originally thought to be an injury from my kickball or flag football leagues, but the current cause is considered to be "fuck if we know!")

Last year, I drove from Ohio to New England and stayed for a week. The drive fucked my back up hardcore. I hardly did anything at home because I was in too much pain to move much. And then I had to drive back! 14 hours!

I had the worst series of episodes when I got back. My doctor pulled me out of work because my BP was dropping so dangerously low. After I think six weeks, I went back. I worked for a week, and the following Monday, I passed right out on my keyboard. I called my roommate to ask if she could pick me up. I knew I just needed some salty soup and to put my feet up, but my boss called 911. They know I don't have to go to the hospital at work, but because I couldn't walk on my own to wait for my roommate, they're required to call the medics. I was humiliated and kept apologizing to EVERYONE for wasting their time. "I'm fine; I just need to hydrate and put my feet up! I'm so sorry; I didn't ask to come here!"

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I had a teeny bit of chest pain, but that happens when I'm upset sometimes. Anxiety and all of that. I figured I'd let them know, because I'm queen of documentation, and I like shit to be documented. The doctor sent me for a CT scan and it turns out I had a fucking pulmonary embolism.

A PULMONARY EMBOLISM. I was 32. My only risk factor was hormonal birth control.

Oh, and sitting down for fucking ever while driving. And not moving around enough.

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I've not been able to control my blood pressure since. I was in the hospital for a few days on heparin. I was sent home with the worst drug in the world, warfarin, and a week's worth of blood thinner shots to give myself. A week later, I was coughing up blood and was hospitalized again. That time, it was pneumonia that had set in wherever the clot had touched. I was there for a while, and over Thanksgiving.

I went back to work, got into an accident, bled profusely, was shuffled around on meds, and got pulled back out of work. Got sent BACK to work. I had to have weekly blood tests so they could determine the right blood thinner dosage for me. I was supposed to be on the thinners for nine months. I went to the office one Friday for my weekly test, and I passed the fuck right out at the counter when I went to pay my copay. I hit my head on the counter, the wall, and the floor, and never took another blood thinner again. My doctor said my risk for cerebral hemorrhage was greater than a repeat clot. And I was kept out of work again.

I can't tell you how many times I've been hospitalized in the past year right now. Too many, most recently in June. I take an SSRI to make the connection between my brain and my cardiovascular system. I take two meds that increase my blood pressure, though one of them, that's not why I take it...it's just a good side effect. I take that med to bridge a different connection for the same thing, but in a different place. I have compression socks and compression stockings. I drink so much water, and try so hard to eat salt.

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I work from home right now because my doctor took my license away. I'm so peeved about that, because I never ever drive when I have "low" days, and I was super cranky that he wasn't trusting me. I don't think that's it at all now; by him doing that, I am now allowed to work from home. I wasn't before. I've got a new neurologist in the autonomic department of OSU. I've had two cardiologists tell me I'm going to need a pacemaker. I have a referral to a doctor who specializes in NCS, but who has a 16 month wait (I had to wait 7 months for my OSU appointment!). I wore a heart monitor for a month so they can determine if my heart is stopping when I pass out (no). I had more tests at OSU that show I have at least one other diagnosable issue, but they need to repeat one of the tests to determine if I'm fucked up, or if the equipment was fucked up. (Spoiler alert, it's me.)

I saw my new cardiologist yesterday to find out where to go from here. I'm exhausted. I'm sick of being sick, and I've lost my independence. It's not getting better; it's only getting worse.

He said probably the hardest thing I've had to process since the embolism. That I have the most extreme case of this that he's seen in thirteen years as a cardiologist. Now, that doesn't mean most dangerous. If my heart was stopping, a pacemaker would help. It's not, and he no longer thinks I'm necessarily a pacemaker candidate. The damage in my heart isn't where a pacemaker would do any good. So I'm being sent for a consultation to discuss surgery. He wants what is essentially an EKG implanted in my chest for two years. And he also talked about ganglian surgery, but I was still trying to deal with "most extreme" and "not much else from a cardiac angle" that I didn't ask questions. I know enough about the vagus nerve to know what he said, but I didn't hear him when he explained how it would work.

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Topping all of this off, I can't drive right now. I mean, I NEVER drove when I felt symptomatic, and I can tell with enough notice when I'm going to have an episode so that I can pull over and call for a ride. I was having them so frequently that my doctor was like "that's it, I'm not comfortable with you on the road. I'm writing the DMV," and so I can't drive until at soonest after my neuro follow-up in November unless the neurologist says I can, but he's only seen me once, so I don't think he'll say anything.

The diagnostic process gets really fucking old. I went through it five years ago. I went through it two years ago. And I feel as though I've been going through it for ten straight months, and instead of answers, we only get more questions. I'm SO thankful I'm being allowed to work from home. I'm broke as fuck and I can't tell you how much medical debt I have. But now I have to depend on people. I lost my independence. I hate it, and I want to give up some days. People say "I don't know how you do it!" and stuff like that, and the honest answer is that I don't have a choice. I'm not brave or strong or anything. I'm just existing.