POTS, Not Pans

Part of my hesitance in going to the doctor is because I don’t want any more diagnoses. I feel like I have enough. Hell, even disability forms have spaces for 10 diagnoses, and I had already exceeded that. I don’t want any more diagnoses. I don’t need any more problems.

As much improvement as I’ve made in seeking out medical help, as soon as the possibility of something more comes up, I push it so far back into purposeful forgetfulness in the hope that it will never come up again. I did it last month when I attended a COPD support group. The respiratory specialist pulled me aside after group, asked me a few questions about my history, and recommended I come back to be tested for Cystic Fibrosis. She seemed concerned. I told her I would come back; I never did.

It’s a lot easier to forget shit when it doesn’t affect you every day. I’ve had breathing issues most of my life. I’m used to it.

What I’m not used to is passing out onto the floor. That I can’t forget. The concussions. The bruises. The people who have to surround me when I get up because they all know I’m going to end up on the ground unless they catch me. The very thing that led to me losing my job.

I thought I had answers, at least in part. Clearly something was off with my heart rhythm. They said it was an arrhythmia. They just couldn’t tell me which one. That’s why I had the cardiac implant. It was going to tell me what was wrong with my heart.

So when I went to my cardiologist appointment on Tuesday, I was fully expecting a simple answer. Just tell me what arrhythmia it is. Just tell me how we can fix it. I need to work again. I need to be normal.

But that’s not how the appointment turned out. The doctor scanned through the information from my monitor. I had the PACs and PVCs as suspected. He could have prescribed a beta blocker to help regulate my rhythm, but because of my age, he thought the risks were greater than the benefits. But even with that, the irregularities weren’t enough to cause my consistent passing out.

The cardiologist sat there and started to tell me there was nothing left that he could do, that he ran all of the tests he could and none of them could fully explain my symptoms. He brought up seeing a neurologist to rule out seizures, but I knew these weren’t seizures. I knew that something was wrong. But I felt defeated. All I could say was okay.

But my friend is not like me. She was not about to back down and say okay and leave my doctor’s office without any real answers. And I think the doctor realized that. So he brought up more things, some fancy words, but still nothing concrete. He mentioned something about blood pressure, and I told him well that’s complicated in itself. He asked me to explain. I reminded him that’s what led me back to him in the first place, when the PHP program found an irregularity in my blood pressure — high in one arm, low in the other. Drastically low at times.

Something must have clicked in my doctor’s mind, because he told us to follow him to his office. He pulled up my records on his computer. And the more my friend described what was happening to me, the more firm he felt in his belief about the diagnosis.

I have POTS: Postural Orthostatic Tachycardia Syndrome. It explains why my heart rate can go from the 30s to the 130s in a matter of minutes just from moving. It explains why I pass out when I stand up, or after I’ve been sitting down for a long time. It explains why my head gets so foggy sometimes out of nowhere. It explains why my blood pressure changes so drastically. POTS explains that all.

I got an answer. A diagnosis. But it’s not an easy one. In reality, I would rather my issue just have been an arrhythmia. They are easy to fix. Simple. POTS isn’t so simple. POTS isn’t so easy to fix. And when you really start to look into it, it’s only a piece of a much larger puzzle. Because POTS is never just POTS. POTS is a part of a larger problem.

POTS is one form of Dysautonomia. A big word, but basically it’s the dysfunction of the autonomic nervous system, which controls all of the automatic processes in the body: heart rate, blood pressure, breathing, digestion, and temperature control. It’s also the system responsible for the fight-or-flight response. The system that’s been overworked since I’ve been born.

So much makes sense now, and not just the passing out. People with Dysautonomia can have problems with malnutrition. They can have trouble regulating their temperature. It explains why I always end up vitamin and protein deficient even when I’m eating right. It explains why I can’t feel temperatures like everyone else can, why I don’t realize when it’s too hot or too cold. It explains why I can’t always feel pain when something is hurt, and when I don’t realize I am sick when I’m really sick. The system that’s responsible for the basic necessities of life is broken.

There’s no direct link between Dysautonomia and trauma, but I can’t help but think that there’s a connection. The very system that plays a role in the body’s response to trauma is the same system affected by these conditions.

Maybe the autonomic nervous system is like a car. A car only lasts for a certain amount of mileage before it starts to break down; that’s how it’s designed. If you drive it a lot, it’s going to break down faster.

What if that’s how the ANS was designed? Maybe it’s supposed to last a good 80 years of regular use. But when it’s overused, when trauma happens and it’s constantly activated for years and years, it breaks down faster. Because the human body wasn’t designed to endure consistent trauma. It’s why trauma survivors rarely suffer from just the psychological effects of what happened to them. There’s physical damage, too.

It frustrates me in more ways than one. Another diagnosis, and one that I can’t ignore. And even though there are things I have to do now — take medication, increase my salt and fluids, wear compression socks to push the blood back to my heart — it’s not a cure. I’m still going to pass out. I’m still going to be affected. It’s another disabling condition.

I sat in my cardiologist’s office in wavering denial. My friend asked him about my ability to work, how no one wants to employ someone who’s going to pass out like I do. She asked him straight out if I could work, and he wouldn’t give a straight answer. He circled around to talking about keeping myself safe. He wouldn’t tell me what I really wanted to hear.

It’s another diagnosis I didn’t need.

Fired (Up)

I came home Monday afternoon expecting to enjoy the rest of the day — the anniversary of my freedom.

I checked the mail and saw a letter from my employer. I opened it. There was a piece of paper with my name and information on it, with directions for filing for unemployment, with a permanent separation date of June 6th.

I never quit my job. I wanted to go back as soon as I could. I never wanted to be out in the first place. When I passed out at work that day, the manager told me I would not be able to come back until I had medical clearance in writing. I told her it was going to take me awhile to get it, and she said that was okay — that my health was first priority. And I have been trying ever since to get a note, but because of my history of heart issues and fainting, no one wanted to take on the liability and told me I needed to see my cardiologist.

So I planned to wait until my next appointment, which was then cancelled because my cardiologist decided to leave the practice on short notice. I rescheduled with my original cardiologist, but the earliest appointment I could get was July 11th. Fine. I figured everything was okay because my manager told me to take all the time I needed.

When I got that letter, I didn’t understand what happened. No one contacted me before this. No letter, no phone call, no e-mail, nothing. As far as I knew, everything was still okay. I had no idea I was going to be let go. I never lost a job before — not like this.

It was hard enough for me to leave the job I had for nearly two years, the job I got just weeks after running away. But that was a choice I made in order to have a better, safer life — and a place to live. I was in control.

But this was not in my control. This was not a choice to leave. This was being fired. Through the mail. On the day I was supposed to be celebrating my freedom.

I tried to suppress my emotions, I tried to push it in the back of my mind, to try to think about it another day. But that didn’t work out so well, because I ended up in tears. I was angry, frustrated, and upset. What did I do wrong? I didn’t abandon my job. I was good at it. I performed well even in the few weeks that I was there. And I did everything I could to try to get back, and I was still trying. But it wasn’t enough.

I felt like a failure. I can’t keep a job. I can’t even keep myself upright. How am I supposed to get another job? How am I going to pay my bills? No one wants to hire someone who was fired, and surely no one wants to hire someone who passes out frequently. Not disabled enough for disability, but not able enough to work. It’s occupational entrapment.

I managed to stop crying for a little while, but any chance of enjoying the rest of the day was gone. I made it through dinner, but then I felt the same emotions coming back. I went outside. I wanted to badly to run away, to take my cigarettes and smoke my feelings into numbness.

And it took everything in me not to do that, because I knew it wasn’t going to solve anything. I knew it was going to affect other people, and affect me. So I sat with my emotions and a bottle of beer. I let myself cry. I let myself be angry.

Then I looked up at the sky. I watched the fireflies fly. I watched the neighbor’s dog waddle through his yard. I looked around me. Peaceful. Quiet. Freedom. For 29 years, the only way I could watch the sky was through my bedroom window. But that wasn’t my life anymore. This was my life. Full of feelings and losses, but also full of fresh air, fireflies, and the freedom to see life from the outside, instead of inside my window.

I was still upset, still angry, but it no longer overwhelmed me. I came back inside. I sat on the couch and watched TV. I ended up falling asleep there, with one dog sleeping behind my head and another sleeping right at my side. And I couldn’t imagine life any other way. Safety, a family, friends, a home, dogs, and freedom.

I’ll figure out the rest, somehow, some way.

Purposeless

Stability outside, chaos inside. That is what my life is right now. And saying stability outside may even be a bit of a stretch. But I guess for those who don’t really know me (and even some who do), I appear stable.

I’m not at all stable. I barely know what day of the week it is anymore. I haven’t paid any of my bills this month. I don’t even know why. It’s not like I have a legitimate excuse. I’m not even working. I’m just existing.

I am useless, and not for lack of trying. I tried to get my regular doctor to write a note for me to return to work. Bad idea. It took an hour for me to even get her to consider writing me a prescription for an antiobiotic. An antibiotic. Not a narcotic. I’m just asking for some penicillin, because I clearly have an infection in my lungs that was not going away with steroids alone. And she even agreed. That’s the best part. She knew I needed medication, but told me in fancier words that I was too complicated to treat, between the COPD and my heart condition. I was lucky I got a Z-Pak; getting a note would have clearly just been too much.

So I told myself I’d wait. Just another week, and I can see my cardiologist and she’ll write me that note, she’ll clear me for work. And then I get a call four days before my appointment, with a voicemail that said my cardiologist has resigned and my appointment has been cancelled. The woman on the phone said it like it was no big deal. Even added in the have a nice day. This cardiologist performed my surgery. My cardiac monitor is subscribed to her name. She was a specialist. She was the first one to legitimize my concerns. What in the fuck am I supposed to do now?

I called the office back. I told them I was out of work. I told them I had been in the hospital several times since my surgery and needed to be seen. She told me I could see my old cardiologist, the one that always assumed my heart issues were really just the aftereffects of cocaine abuse and a possible seizure disorder, completely dismissive of anything cardiac despite everyone else telling me my heart is not beating right. Fine. I have no other choice. I’ll take him.

Great. Now let’s get an appointment. Well, he doesn’t have any openings until next month. Are you fucking kidding me? My surgery was in May and I haven’t even had a post-op appointment yet. I have stitches hanging out of my chest that I have tried my hardest not to pull out myself. I am out of work because, understandably, who the fuck wants to be liable for someone working who passes out consistently. But let’s just give it another month. Fine. Because I really have no other choice.

It’s frustrating. I want to scream and cry, but instead all I do is bury it down and put on a smile. I’m good at that. Hide the anger, hide the pain. I hide my tears, too, until I can’t hold them in anymore. Then I run. Out of the house. A few blocks away. And I sit on a bench and cry. And I smoke a cigarette until the pain goes away. I tell myself I’ll smoke just one more, and then it’ll all be fine. That’s what I’ve done my whole life. Just one more line, just one more drink, just one more pill. But it’s never fine. It’s not now, and it never was in the past. Yet I still keep trying. It’s how I ended up on a bench in the middle of a thunderstorm, soaking wet, with an empty pack of cigarettes, wondering why I couldn’t breathe.

I am a mess. Not wanting to die, but not caring if I exist. Because I feel purposeless.

People tell me my intelligence, my grad school work gives me purpose, but it doesn’t to me. I just finished a year of graduate school and maintained a 4.0 GPA, but it just doesn’t matter to me. I didn’t put forth any effort. I didn’t study. Hell, I took my last final drunk and started and finished my final project in the hour before it was due, and I still managed to pull 100s. That is not effort. That is not purpose. That just is.

My intelligence does not give me purpose. If anything, it only causes me more pain. Knowledge hurts. Because I know how to fix the damage in others, yet I can’t seem to fix the brokenness within myself. If I didn’t know any better, it wouldn’t bother me as much. I’d just be broken.

How can I plan for a future when I don’t even know what’s happening now? There are things I’ve accepted. I won’t have a family. I won’t live as long as planned. I am sick, and I will be sick for the rest of my life. But how can I plan around that?

I dreamed of being a therapist because I wanted to help people in ways I wished people helped me, I wanted to make a difference. But that dream isn’t realistic now. I can’t be a therapist with DID. I know they exist, but they have to exist in hiding. Because the world will never accept them.

I don’t know how to make a difference outside of that. I can’t stop every child abuser. I can’t make people understand that mothers abuse their children, too. I can’t get people to open their eyes to truths they don’t want to see. So what is my purpose?

Beyond housework, I am nothing right now. I keep busy as much as I can. I wash the dishes. I do the laundry. I sweep the floors, vacuum the rug, take care of the dogs. But in the moments where there’s no more laundry, there’s nothing left to clean, and the dogs are asleep…those are the moments that scare me. Those are the moments I hear my mother’s voice, telling me I am nothing, that I am a burden.

Those are the moments I sit and realize that I am purposeless.

I’m a Liability

Do you understand the consequences of your condition? You cannot be out by yourself. Do you understand? You can be walking down the street, pass out, get hit by a bus, and die. You can pass out and stop breathing, and the lack of oxygen will cause you to be brain-dead. This is serious. I need you to verify that you understand the risk you’re taking.

I laid in my hospital bed, listening as the doctor in charge continued on her lecture. I laughed to myself. There were so many things I wanted to say, half in sarcasm, half in truth, but I knew saying them out loud would likely end up with me being put on a psych hold. I repeated her words back to her. My voice lacked the care and concern that hers did. This wasn’t anything new for me. This was my normal.

I didn’t wake up that Tuesday morning expecting to end up in a hospital bed later that night. It was a regular day. I woke up, took a shower, unloaded the dishwasher, and put a load of laundry on before heading to work. It was a slow day to start. I walked home on my lunch break to let the dogs out and take some cough medicine, as I hadn’t been feeling well since the night before. I walked back to work and planned to finish out the next couple of hours with no problems.

But it didn’t quite happen that way. I knew something wasn’t right. I was walking down the aisle and I could feel my heart racing and stopping, racing and stopping. I kept telling myself in my head please, not here. I was barely two weeks into the job. I didn’t want to pass out there. I hadn’t even informed anyone of my heart condition until a week after I started the job, and it was only because my therapist thought it was necessary. None of my coworkers knew; only the manager. I didn’t want anyone to know because I didn’t want people to overreact. I didn’t want anyone to treat me differently. I just wanted to be normal.

Time had passed and I could still sense something was wrong. I couldn’t breathe. At one point, I could barely speak. I motioned to the assistant to take care of a customer for me, and I must have looked off because she ran to get me a chair. I just wanted to be okay. This is going to pass. This needs to pass. I sat down, hoping that would help. I tried to breathe, which was harder than normal because I had also been sick.

I don’t know how long I was sitting for, but I ended up falling over onto the floor. I looked up to find my coworker kneeling at my side, another was on the phone with 911. I’m okay, I just need a minute. Why did they have to call 911? I don’t need help. I’m fine.

But people still don’t believe me when I say I’m fine. The paramedics ended up taking me to the nearest hospital. I gave them my history, told them I had the internal heart monitor. They couldn’t get any information from the monitor because I didn’t have my ID card on me, and it wasn’t the same hospital where my surgery was done. So all they could do was run tests.

EKG was normal, x-ray showed an enlarged heart with inflammation in the lungs. They started me on IV steroids and breathing treatments. I thought the focus had shifted from passing out to not being able to breathe. After a couple of hours, the heart monitor was off and the breathing treatments stopped. A doctor came in to tell me I had been admitted, and I immediately starting panicking. Why? All I’m doing is sitting up in bed, unattached to anything but a Pulsox on my finger.

You passed out. Well yea, I pass out a lot. I still wore the bruise on my forehead from two days earlier, when I passed out and hit my head on the tiles of my bathroom floor. This was just my life now. Pass out, get up, move on. I’ve been doing it for years now, though not nearly as frequently as the last few months. It became just another part of my life to cope with.

I didn’t want to be admitted so they could watch me all night. I could do that myself, at home, free from the PTSD reactions that hospital admissions continue to cause me. I called J in tears, begging her to come pick me up. She knows I don’t like hospitals, but also knows that sometimes I have to be there. And I know that, too. But this wasn’t necessary. I didn’t need to stop my life just so they could make sure I didn’t pass out again.

So that’s why I got that lecture. I told them I did not want to be there. I told them it was difficult for me emotionally. I wanted J to be there to help me make sure I was making the right decision, because I admit I’m not so good at that most times. But she agreed, too. They weren’t doing anything to help me. She told them the same thing I had told them — this is what we’ve been dealing with for months now, and we just deal with it until we know more.

I signed the paper and I left. The risks weren’t new to me. They were the risks I had been taking every day. And I would continue to take them.

Except that not everyone wants to take those risks with you. The next morning, my manager sent me a text. She had already taken me off the schedule for the rest of the week and next. She asked me to turn in my keys. I needed a note before I could return back to work. A note I knew I wasn’t going to be able to get. I was now a liability.

I get it. They can’t have employees passing out. It was a fear I had myself, knowing that there were times I was going to be alone in the store. I get the liability.

But now I am stuck. No one wants to employ anyone who’s going to pass out at random. My disability was denied. I’m not making any money. I’ve spent the last week in and out of hospitals not just because I passed out that one time, but because my COPD is so out of control, in combination with my messed up heart, that no doctor wants to treat me.

I went to urgent care on Thursday hoping to get a prescription for steroids before my breathing went to absolute shit, and I ended up being sent to the hospital again. He told me he didn’t feel comfortable treating me. It wasn’t just the breathing. It was my heart. My heart rate was low — way too low for normal, and especially low considering it should have been higher to compensate for the extra work it needed to do to help me breathe. Something wasn’t right, and as soon as he heard I had a heart condition, I became a liability.

I feel stuck in a situation with no happy ending. No matter what I do, I am a liability.

After all, I can walk down the street, get hit by a bus, and die, right?

But so can anybody. So why do I have to be treated so differently?

 

 

You’re so young

But you’re so young.

I heard that exact phrase at least two dozen times over the last two weeks.

It wasn’t the first time I heard it. I’m sure as hell it won’t be the last. But hearing it over and over and over again day in and day out made me want to scream out loud. I didn’t, of course. I only screamed on the inside.

I know that the people saying it weren’t saying it to be negative, but they didn’t realize that every time I heard that phrase, it was like a tiny jab to my already damaged heart. I know I’m young. You don’t need to remind me. I know I’m sick. You really don’t need to remind me.

I can’t blame them, though. I’m 31 years-old with a disease that affects the elderly. They see my COPD diagnosis and they don’t understand it. And then they want to ask questions. How much did you smoke? How long were you a smoker? I can never seem to tell them I only started smoking after I got sick. I can never explain to them how I grew up and lived in a (literal) toxic environment, how I spent most of the last 17 years in and out of hospitals. It wasn’t just the cigarettes that gave me COPD. It was my life.

It’s hard for many people to realize just how much trauma affects the body. I see it all the time. I’ve never met a person with PTSD who wasn’t struggling with at least one type of physical problem. The effects of trauma aren’t just on the mind.

My body started giving up long ago. It wasn’t just about the broken bones, the bruises, the damage it withstood on a regular basis. Every last bit of energy is spent trying to survive. After awhile, the body can’t fight anymore. There’s no way to win the war. So things break down in ways they shouldn’t, way earlier than they should. Broken mind, broken body.

But most people don’t understand the connection. They don’t want to hear about the trauma, about the battle you endured that brought you to this point. They want hard facts spoken in brevity.

I don’t bother with facts. I don’t bother with the truth. Just bad luck, I guess. That’s what I tell them. As if luck has been the one and only cause of my destruction. Luck took away the cartilage in my knee. Luck caused me to get COPD. And now luck has led me to a heart problem that has yet to be solved.

Fuck luck. Fuck genetics. I want people to realize the connection to trauma. I want them to stop telling me I’m so young, and start asking how I really ended up here. I want somebody to stand up and realize that I am breaking, not because of luck, not because of genetics, and not all because of my own doing. There was and is something more here.

I want to be able to tell them the truth. My heart is weak because it’s tired. Thirty one years of my life has been constant stress and fear. I’m surprised it still beats at all, to be honest. Why hasn’t it given up on me yet? Why does it try to quit and then get knocked back into beating?

And just when I thought it was over, the appointment was done, the surgery was done, the questions were done — it happened again.

The manager of cardiac unit called me the following day to check and see how I was doing post-surgery. I told her everything was okay (except for some mild pain), and then there was an awkward silence. Then I heard her again. Do you mind if I ask?  You’re so young, why did you have this done? We’ve only ever had to do this with older patients.

I really wanted to say wait, you mean not every 30-something has a heart monitor implanted into their chest? Instead I told her the basic passed out a few times, they found an arrhythmia, completely downplaying the fact that I passed out way more than a few times and I had a collection of issues that included more than just an arrhythmia.

She’s right. All these people are right. I am too goddamn young to be dealing with this shit.

But I am dealing. I am living life as if nothing is wrong. Because that’s how I learned to live.

And that’s what got me here.

Changes, Part 3

The last of my major changes is in my career.

Last Friday was my last day at work. I am currently, aside from my writing gig, unemployed.

I realize that may seem like a bad decision to some, considering my financial situation is quite dire.

But I had to make a decision between working at a job I love and living somewhere safe. I ended up choosing the later.

It was not an easy decision in the least. I got that job just weeks after running away. My coworkers were the first people I really interacted with, the first (and in many ways, only, for a while) people I got to know. They became more than just fellow employees and coworkers. They became my family, and that is something they reminded me of quite often.

I believe I was meant to be there. I believe I got that job for a reason, among all of the other jobs out there, the other offers I had, I somehow ended up with a group of the most accepting, hilarious, and caring people I could have encountered. That job was my escape from the chaos I was living in. That job was my social life. It was more than a job to me. But I knew I had to leave it.

It wasn’t just one thing. I realized months ago that I was becoming less and less able to do my work. I was physically and mentally exhausted. I got the work I needed to get done, done, but it was taking a toll on me. I had no energy, And as my health started deteriorating, it only got worse. I ended up using a wheelchair at times because I was too weak or too dizzy to walk around. There were many times I had to hide in the bathroom or in the corner of the backroom because I was in too much pain to keep walking.

I knew eventually I was going to have to make a change. It just came a little quicker than I thought.

When everything happened with my living situation, I had to make that choice between my job and a home. With everything else that had already been happening with work, and the consistent chaos that seemed to follow every living situation I got into, I made the decision to leave my job and take the safe living option.

As I said, it was not an easy decision. I cried in the days leading up to my final day, and I cried even more as I hugged my coworkers before I left that last day of work.

I jumped to the conclusion that by leaving my job, I was also leaving the people in it. But I then realized that I was leaving the job, not the people there. These people will still be in my life. I can still talk to them. I can still visit. That part of my life is not gone, it’s just different.

I considered getting another job. I actually interviewed and got accepted for a full-time position. But then I realized I would only be putting myself in an unhealthy situation. I was (at that time, and still) ending up in the hospital every few days, still passing out at random. It didn’t feel right to start a job and put them at risk, so I backed out.

For now, I am taking a break. I am focusing on school and on my writing. I’m resting for the first time since I was a teenager. And most importantly, I am focusing on me and my health, following up with doctors, and trying to get to the bottom of what is wrong with my heart.

In the end, I guess it was a good decision. The hardest ones usually are.

 

Changes, Part 2

I wish I could say I knew what was going on with my health. Since I last wrote, things have only gotten worse, and answers are very few and far between.

My tests revealed a stenosis in my left shoulder. It was enough to explain some of my symptoms, but not all of them. It didn’t explain the passing out or the dizziness. It may have explained the difference in blood pressure, but aside from that, something else was going on, but no one knew what.

As I sat in his office, I started to feel it again. The feeling I have trouble explaining. It starts as a tightness in my chest. My head gets heavy and I start to get dizzy. It feels like a grand effort just to keep upright. I remember him telling me I didn’t look right. He asked me if I was on anything (insinuating drugs, which I don’t blame him for, because he does know my history). I couldn’t tell him what was going on. I just told him I was tired. I told him I’d be okay. If I had just been able to tell him in that very moment what was going on, maybe he could have helped me better, because what has followed since then has been a series of concerning and frightening events.

I couldn’t tell you the exact date, though I could look through the growing pile of hospital papers I have acquired in the last several weeks alone because of this. I was sitting in group at PHP. I felt the pain in my chest. I tried to focus on breathing, but the pain wouldn’t go away. My heart was fluttering. My head felt weird. Dizzy, empty, full, I can’t describe it. I remember sitting in the chair after group unable to move. A few people walked by and asked if I was okay, but I couldn’t answer. My body was so weak, I could barely speak. I remember the therapist sitting in front of me asking if I was okay. The next thing I remember, I was flat on my back on the floor confused as fuck.

Apparently I had passed out cold right out of the chair and onto the floor. All I could do was apologize. The therapist was there, the nurse, and the psychiatrist. They checked my blood pressure and pulse, and both were way too high. Not my normal at all. It felt like my heart was going to beat out of my chest. I tried to calm down but all I could was panic. I kept telling them I was fine, but they had called 911 and I ended up being rushed to the emergency room.

I remember the paramedic checking my blood pressure in the ambulance and it came up extremely low; 60/40. He asked if I felt okay. I told him I’m fine, I’m just tired. My usual response, you know. He figured it was just a bad read. He didn’t know any better. He didn’t know all the times my blood pressure readings were so extreme the nurses and the paramedics just assumed they were “bad reads”.

The hospital did blood tests, a CT scan, x-ray. It wasn’t a heart attack. But they couldn’t give me any answers. They listed it as dehydration, and told me to drink more and make sure I was eating enough. I could give them that. I probably wasn’t eating enough.

So I made an effort to eat more. I ate a granola bar for breakfast. I bought a snack for between group sessions at PHP. I hoped this all would stop if I just ate more.

But it didn’t stop. I got that feeling again. The chest pain, the weird feeling in my head.  I sat in the nurse’s office in fear that I was going to pass out. She checked for a pulse and could barely feel it. She checked the other side and noticed an irregularity. Not only was my pulse slow, but my heart was skipping a beat. She felt it again and it was still the same. The total opposite of what it was when I passed out before. Instead of my heart racing, now it was barely beating at all. They called 911, and I ended up in the hospital once again.

This time was no different. My blood tests were fine. No heart attack. I stayed bradycardic, but otherwise they weren’t concerned enough to keep me there over night. I was discharged once again with no real answers.

I think the nurse and psychiatrist at PHP were as frustrated as I was. The nurse asked if I could have the hospitals send copies of my EKGs sent to them, so I called up both hospitals I was in and they quickly faxed them over. The psychiatrist noticed something in both EKGs that no doctor or hospital every told me. There was an irregularity in both EKGs, which no one ever addressed and everyone seemed to ignore.

And as if twice weren’t enough, it happened a third time. I was within group and got the pain in my chest. I tried to stay calm and sit through group, but it became increasingly difficult to focus. The woman sitting next to me asked if I was okay, because she said I did not look good. I said I was fine. I didn’t want to go through this again. I just wanted it to go away. But it didn’t. I hesitantly got up to go and ride it out in the bathroom, hoping the pain and dizziness would pass. The nurse saw me on my way there and she knew just by looking at me that it was happening again. I told her I was fine, but I don’t think she believed me, because when I made it out of the bathroom (still no better than before), she and the psychiatrist made me sit down and she took my pulse and blood pressure.

And there it was again. I had a weak pulse, and my heart would skip beats, just like before. I told her I was fine. She kept asking if I was having chest pain and I didn’t want to answer, because I knew if I said yes, she would call 911. The psychiatrist called my cardiologist (who happened to be on call at the hospital) and talked to him directly. He told me to come straight in. Another hospital visit, just days after the one before.

This time wasn’t quite the same story. The doctor came in and told me I had an arrhythmia. He explained that something was off in the part of my heart that controls how it beats, but they just weren’t sure exactly what the problem was yet. They were checking for AFib and put me on a 24-hour monitor right away. Finally, here was an answer. Not a full answer, but certainly better than dehydration.

But it wasn’t a cure. I was still passing out. One morning on my way to work, I passed out as I was closing the front door to the house and fell down stairs of the front porch, sliding down until I hit my head on the concrete. I woke up after 10 or so minutes, I don’t even know. My only worry was getting to work on time. With a scraped up head and bruised up legs, I managed to make it to work on time. I told myself I was okay. I said everything was fine. But it wasn’t fine. My head was pounding, my eye was swollen, and I apparently couldn’t say a coherent sentence without slurring my words. My supervisor was worried I had a concussion so he sent me home. All I could say was I was sorry.

That wasn’t the last time I passed out. Last weekend, I collapsed on the front porch during a retreat for my support group. They called 911, but I refused to go to the hospital. I’m sure the paramedics weren’t happy with me. I told them my list of problems: a stenosis in my left shoulder, heart arrhythymia, tachy/brady, irregular blood pressure, COPD. I told them I’ve been through it enough to know I’d be okay. The hospital wouldn’t do anything for me anyway but have me rest.

I’ve passed out at home (that time, at least, on a carpeted floor). I’ve come close to passing out in work, at stores, even walking across the street. It’s gotten to a point that I’m afraid to go anywhere because I don’t know when I’m going to pass out, and I don’t want to be alone if and when it does happen. Almost every day now, I get the pain. It’s unpredictable. I sit, I lay down, I try to relax. Sometimes it passes quickly. Sometimes it passes after an hour. And sometimes I pass out. It’s a lottery, and I never really know what result I’m going to get.

It’s frustrating not knowing any answers. I fear that in some way, I will end up like my father (who had heart disease which eventually killed him). I don’t have diabetes, I don’t have high cholesterol, I don’t have high blood pressure. Yet somehow, I ended up like this.

I spend my life sitting in waiting for that feeling to happen again. It feels like your body is fighting against you, like your heart wants to quit (literally), yet something kicks in and makes it start going again.

How symbolic.