POTS

Work(in)ability

~ KJ ~ 2 Comments

After an incredible amount of time and frustration, I was finally able to get a copy of my birth certificate, which then gave me the ability to get a valid ID so I could get a job. While my writing work pays, it’s definitely nowhere near enough to live on.

I was scared but excited to start work again. I haven’t really been in the workforce since I got my cardiac implant surgery a year and a half ago. I’ve missed that sense of purpose. I’ve missed that feeling of normalcy, of being a capable, competent adult.

I had almost forgotten — or purposefully chosen not to remember — what work was like for me in the few months before it had ended. Things had gone downhill. It wasn’t from the knee injury that left me on crutches. It was all of the mysterious issues that started wreaking havoc shortly after I was hospitalized with the flu. When I started passing out for no reason. When I started using a wheelchair because I was getting too tired at work. When I fell off the front porch because I passed out while closing the door on my way to work one morning, scraping the entire side of my face.

This was going to be different. This job was going to be easy. No one would have to worry about me. No one would have to know I’m sick. I didn’t tell them anything during my interview. Why would I? No one is going to knowingly hire someone with my medical issues. I look normal on the outside. Capable. Healthy.

I breezed through orientation like it was nothing. I started taking care of guests like I had been working there for months. It got slow for a bit, so a few of us were talking. Somehow random math problems came up, and I solved them in my head. It then came up why I was working there if I was so smart. I didn’t go into too much detail, just that I got sick awhile back and had to take a break. I saw it as an opening to say, very light-heartedly, that if I ever pass out, not to call 911, that I’ll be fine and up in a few minutes. It’s become an annoyance when I pass out in public and they call 911, only for the hospital to try to keep me for observation when I know they are not going to find out anything I don’t already know.

To my relief, her reaction was calm. She said it was good that they know so they can be prepared in case anything happens. I didn’t feel any shame in that moment. I felt okay.

It wasn’t until yesterday, my first full shift of work, when I realized that my abilities are not what they used to be. Fifteen minutes into my shift and I was already short of breath. I could feel my heart racing, which only made it harder to breathe. I wasn’t even doing anything but walking up and down a few stairs and walking across aisles. That was it. My heart rate tripled like I was running a race and would not slow down. My coworker kept asking if I was okay. I know he must have seen it in my face.

Five hours in, and all I had gotten was two minutes to sit on the toilet and pee. I was burned out. I could barely lift mats to clean. I felt weak. I felt sick. I felt useless.

I cried as soon as I left, and again as soon as I got home. I’ve been crying off and on today. I used to be able to do everything. I unloaded trucks. I moved furniture. I lifted grills. I did anything my male coworkers could do. I could work from opening until closing. I had energy. I had strength. My heart was functioning. I was okay.

And now I struggle with everything.

But no one notices. And if they do I immediately push them away. I refuse to use a walker or a wheelchair. Because I don’t want people to see.

I’m tired. I’m tired of walking out of my house and hurrying to find the nearest bench because I’m so dizzy I’m afraid I’m going to pass out. I’m tired of laying on the floors of public restrooms just to avoid a big scene. I’m tired of needing clothes in multiple sizes because I don’t know how long it’s going to be before my digestive system starts working again. I’m tired of not being able to do my school work because my mind is so foggy I can’t think. I’m tired of mopping my bedroom floor every other day because I’m rapidly losing the ability to control my bladder.

I’m tired of the medications, the hospital stays, the doctors’ visits, the specialists.

I’m tired of the loneliness. Everyone else I knew is out living their lives with their families, advancing their careers, having babies. I’m struggling just to get out of bed.

Heartsick

~ KJ ~ 2 Comments

I sat in the cardiologist’s office Tuesday afternoon, hoping for answers. I needed something better. I needed to hear him tell me that it was all wrong.

A couple of months ago, I stopped taking my heart medication. I didn’t tell anyone, because I knew they wouldn’t agree with my decision. But I had reached my limit. Not only had I gained over 30 pounds in less than a month, but I had become severely depressed, to the point of suicide. Admittedly, I am depressed without the medication — but this was profoundly different. After a week of stopping the medication, I lost half of the weight and felt considerably better.

I told the nurse at my program that I had stopped. I thought my evidence would be enough that she would agree with my decision. Except it wasn’t that easy. Because both she and I knew that without taking the medication, my cardiac symptoms would be worse — and they were.

I didn’t want to start the medication again. I called my cardiologist. I left a message with the doctor. Two weeks went by with no response. I called again. I told the assistant that my side effects were severe, and that I needed another option. My cardiologist got back to me later that day. You need that medication. There are no other options.

No other options. What kind of choice is that? Take the pill and find your fat(ter) self running into traffic, or don’t take the pill and feel dizzy all the time, but alive. I’m sure that is a lose/lose situation.

There was no room for discussion. I called back offering names of medications I had researched, but received no responses. I couldn’t even get an appointment until two months later. After three cancellations, I was fed up. And so were my supports.

I needed more answers. I skipped my last group therapy session to call as many cardiologists as I could, until I could find one that would take me on — and have an appointment available that was still in 2017.  I must have called at least a dozen numbers before I found one that was taking new patients. I made an appointment for a few weeks later.

It’s been so hard to treat my PTSD because most of the medications affect the heart. But my psychiatrist has been willing to work cautiously with medications. He wants to be able to work with my cardiologist so I can be treated the most effectively for both issues. And my cardiologist has been consistently unavailable, making it really difficult to move forward with anything.

As much as I wanted answers, I didn’t want to go to that appointment. I wanted to cancel. I wanted to pretend everything was okay, and that I didn’t need any heart doctor. But it wasn’t just me that was waiting on this appointment. It was my therapist, my psychiatrist, the nurse, and my supports. Because they wanted answers, too.

And they were concerned. My last few x-rays showed cardiomegaly. I had avoided dealing with it, but when the nurse at my program found out, she said I needed to tell the doctor. I knew what cardiomegaly was. I knew it all too well. My father had it. It led to his congestive heart failure, which led to his death. I knew it wasn’t something I should brush off. I knew I also had other symptoms that fit under CHF. They knew I had those symptoms, too, which is why they told me I needed to tell the new cardiologist as soon as I saw him.

But I was so afraid. Afraid of having something else to deal with. Afraid of another diagnosis. Afraid that this somehow meant that I was just like my father, that I had his heart. And if I had his heart, I must be like him in every way. And that’s not who I wanted to be. That’s not how I wanted to live or die.

I never had the records sent to the cardiologist. I didn’t want to deal with it. I really wanted to start fresh. I thought maybe I would I tell him. Maybe. We’ll see how it goes. Let me just deal with the medication issue first.

I didn’t tell him. I couldn’t. I found the words to tell him about my POTS and about the medication. I told him what my doctor said about my inability to work. And it took everything in me not to break down and cry on the floor when he told me the words I never wanted to hear. Your doctor is right. There really are no other options. It isn’t safe for you to work.

Once I heard those words, I knew I was done. I couldn’t handle anything more than I had already been handed. He explained why there was no other medication. He said he could tell me all of these other treatments that people came up with, but none of them work, none of them do what this medication does. I could drink all of the fluids and salt everything I eat and it still wouldn’t be enough. Yes, it will cause me to gain weight. And I think, over time, I could probably learn to deal with that. But I can’t learn to deal with wanting to die every day. That’s not a side effect I can tolerate for the rest of my life.

I wish there was an easy answer. I wish I didn’t have to take this medication. I wish I could go back to the way things were before all of this happened. But that’s not reality.

POTS, Not Pans

~ KJ ~ 14 Comments

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.