Replace

Some nights, when I find myself unable to sleep, I look up old classmates on Facebook. Most of them appear stable. They have successful careers. Many are married with several children. They’re doing things that 30-something year-olds should be doing.

It brings up feelings in me — but not feelings of envy, feelings of grief. I know there are some things I will never be able to have, some things I will never be able to be or to experience.

I didn’t get to have a childhood. I didn’t get to experience the freedom of the teenage years. I spent 29 years of my life in hell. And when I finally got out, I didn’t get to experience the life that I thought I would.

It’s not just the psychological shit. Trauma doesn’t go away just because the environment changes. I knew that would follow me wherever I went. But I wasn’t expecting all of the physical damage to hit me so fast.

I’ve spent the last month hobbling around on crutches. I’ve been in pain for a while. But when you’ve been through what I’ve been through, you learn to shake pain off and deal with it. That’s the safe way, right?

Except it wasn’t. By the time I ended up in the ER last month, my knee was already severely damaged. I had worn all of the cartilage away, to the point where bone was rubbing against bone every time my knee bent, causing pieces of my knee cap to chip away. They recommend a knee replacement. Another surgery.

People don’t understand why I won’t just get the surgery. What’s the big deal? It’s not about the surgery. It’s about everything. Every part of my body is damaged. I have problems that people my age don’t have. People my age aren’t hobbling around on crutches, getting body parts exchanged with metal substitutes. They aren’t sitting in support groups, surrounded by people 40 years older than they are.

Trauma changes people. Not just their minds, but their bodies, too. My emphysema — that isn’t just a fluke. It’s from living in a toxic environment. My heart problem, the dysfunction of my brain and my autonomic nervous system — that isn’t just bad luck. That’s from my brain having to constantly be in overdrive. The poorly healed fractures, the joint problems — that isn’t just the bad genetics of EDS. It’s the result of constant trauma to the body.

Constant reminders of what I went through, courtesy of my body. Constant reminders that I will never be a normal 30-something, just as I had never been a normal child, teenager, or 20-something. Loss after loss after loss.

I deal with the pain. No one really asks about it, so I don’t talk about it. Except for my therapist. He asks me every time we meet. And I brush it off. I tell him I’m used to the pain. Because in my head, I keep telling myself at least I’m not at home, at least I’m not being actively broken. Be grateful for that. In my head, pain is normal. In my head, pain is deserved.

If only they could fix my broken heart like they could fix my spine. Glue the broken pieces back together, then screw in some brackets to hold it in place. Good as new. No darkness any more.

If only they could fix my damaged mind like they could fix my knee. Take out all the broken pieces. Suck out all the bad memories. Take out the whole damn thing. Just replace it with something new, something stronger, something that can’t be damaged.

I’d give anything to erase what’s happened to me, to replace all of the damage that’s been done with parts that cannot be broken. Replace the memories with happy thoughts of what life could have been. Replace the pain with strength. But that’s a hope that can never be fulfilled.

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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?

 

 

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.

 

Loneliness

I’ve been crying a lot this past week.

It’s hard for me. I’m someone who needs to prepare just to go to a routine doctor’s appointment. And now I’ve been faced with regular appointments and hospitals and tests. It drains me.

It’s been a waiting game these last few days. I went to the hospital Thursday for my CT scan and ultrasound. For two and a half hours, I pushed my anxiety down far enough to get through each test. I didn’t mind the CT scan. I couldn’t see what was happening — not knowing in the moment was comforting.

The ultrasound was another story. I could hear the sound from the blood rushing through my arteries. I could see the red colors flashing across the screen. Red was good. Sound was good. It meant that the blood was flowing. But then as the tech went further up the left side of my neck, the sound dissipated. The loud rush turned into the lightest whisper of sound. The red color flashes were blocked by blackness. Something didn’t feel right, but no one could tell me anything. You have to call your doctor.

I managed to make it out of the hospital with a brave face. My therapist had me commit to calling a support person after the appointment, and I’ve only been able to trust a few people there closely enough to reach out to them. I walked over to the coffee shop and called the nurse. She didn’t answer, so I left a voicemail. I’m not even sure entirely what I said, but I know I started out with “I’m sorry” and ended in my usual “I’m okay”.

She called me back ten minutes later, and I hesitated to answer. I did answer, but as soon as she asked me how I was, I started to cry. I was scared. She asked me to tell her what happened but I could barely make sense. I remember her saying you can’t change it now, it’s done, you can’t change anything.

I wanted to change everything. I wanted to rewind my life to a point where I never had to feel pain or know sadness, or sense fear, a point in my life when I had no problems. But that point has never existed.

I went to work later that day and ended up crying again. My boss asked me how the appointment went and I just cried. I don’t understand. I don’t have high cholesterol, I don’t have high blood pressure, I don’t eat junk. Why is this happening to me? I don’t understand. I’m scared, and I don’t understand.

In that moment, she comforted me. She said it was okay to be scared. She said she’d be scared, too. She wanted to be there for me, through the surgery, through whatever I needed. She told me to call her this weekend just to talk if I needed.

But I never called her. Even in the moments that I found myself overwhelmed with fear, sadness, and loneliness, I couldn’t pick up the phone and call her. Why? This woman was genuine in her offers of support. This wasn’t the first time she has been there for me. She took me in on Christmas when I had nowhere to go and no family. She made me a part of hers. But when everyone gathered together to take the family photo that night, I sat out. I’m not part of this family. I felt like an intruder. A welcome intruder, but an intruder none the less.

And I still feel that way. I can’t call her because I’m intruding. I’m bothering. I’m being a burden. It’s a barrier I still can’t seem to break down. She has her own family. All of these people I know have their own families. And I am not part of that. Even the people at PHP keep telling me they are there to support me, but I can’t do it. They have other things to do, other people to support. I don’t matter. I am KJ, party of one.

The hardest part of all of this hasn’t been the appointments or hospital visits or the anxious wait for answers. It’s the loneliness that exists through it all. It’s going to appointments alone. It’s sitting waiting rooms alone, looking around and seeing others with their spouses or older children or friends. It’s laying in a hospital bed and staring at the empty chairs beside it. It’s the uncomfortable silence that occurs every time someone asks for an emergency contact. There is no one. No spouse, no children, no parents, no siblings. I am alone.

It’s times like these that remind me how alone I am. I should have my family by my side at my appointments. I should have a mother to hug me when I’m shaking in my bed at night because I am so afraid of what else could be wrong with me. I should have my father’s shoulder to cry on. But none of that exists, and it never will.

I cry alone. I shake alone. I worry alone. I bear the pain alone because I’m so afraid to share my burden with anyone else.

My tears are not from sadness. My tears are from loneliness.

I don’t want them to drown me.

Saved

I passed out last Saturday.

I was in the shower about to condition my hair when I noticed my vision getting blurry. I couldn’t even make out the bottles. I felt weird, and very off-balance. It was similar to how I felt two years before, when I ended up passing out in the hospital. I had just enough reaction time to open the shower curtain and lean on the toilet so I didn’t fall down.

It scared me. I hadn’t passed out like that in two years. And I was alone with the door locked. What would have happened if I fell and got injured? No one could have helped me. It could have been a lot worse than it was.

Since then, I’ve been taking breaks every morning when I shower. I’ll stand for a few minutes, then step out and sit for a few minutes before getting back in. I thought I could just deal with it. But I still didn’t feel right. I was still feeling light-headed, even at random times throughout the day.

We are supposed to report any side effects or events like that to the nurse at the program. But I hesitated for a few days, because I was afraid it would mean I had to stop taking the medication I was taking for the PTSD (it is primarily a blood pressure medication). I finally decided on Wednesday to tell the nurse what had happened. I hadn’t been feeling well that morning and I was scared again.

I told her exactly what I remembered. She asked a few questions and had me sit down to take my blood pressure. Then I saw the confusion and concern on her face. Something’s not right here. My blood pressure was reading exceptionally high — the exact opposite of what she was expecting, since my symptoms all pointed towards low blood pressure. She took it again and ended up with the same result.

At this point, I think we were both a little concerned. Something made her check my other arm. This is so bizarre. I asked her what was wrong. My blood pressure was reading very low. Two different arms with two drastically different blood pressures. She had never seen it before. She wrote down the results, asked me a few more questions about different symptoms and went to consult with the psychiatrist.

When I checked back in with the nurse, she told me the doctor said to stop taking the Cardura right away and see a cardiologist ASAP. This wasn’t normal at all.

I was scared and a bit of an emotional mess. I couldn’t focus on much of anything at that point. I just wanted to pretend like this never happened. Let’s just go on like we never found this out. But I knew I couldn’t do that, and the nurse didn’t want me to do that, either. So I called the cardiologist, explained the situation, and got an appointment for the next day.

Even though part of me wanted to flee that appointment, I went. I also knew I needed to go because the people at program were concerned about me, and insisted that this was important.

They were right. It was important, and my issues weren’t normal. I need further tests, but the cardiologist thinks it is an arterial stenosis, or blockage in one of the arteries on my left side. I need to have a CAT scan and ultrasound to confirm exactly where the blockage is before we can do anything further. The cardiologist also wants me to see a neurologist to rule out seizures, because he says my pass out events are not typical of heart-related fainting.

And now I have to sit and wait. Wait for insurance to approve the tests. Wait for a diagnosis. Wait for more answers.

I don’t want to wait. I don’t even want to deal with this right now. I just…I don’t even know what is happening to me. I am falling apart in more ways than one. And I don’t understand why all of this is happening. What did I do wrong?

My emotions are in all the wrong places. I have been crying off and on and I’m not even sure why. I eat, I cry. I sit down, I cry. I go pee, I cry. I’m a mess.

I was angry at myself for causing this. Maybe if I had just gone to the doctor all these years like a normal person. Maybe if I didn’t smoke. Maybe if I just took better care of myself, I wouldn’t be in this moment right now, dealing with a serious medical issue.

I was angry at the nurse for finding something off and sending me to the cardiologist. If she didn’t check my other arm, this would have never happened. Like it was her fault for all of this. I know it wasn’t her fault at all. And I felt incredibly ashamed for feeling anger towards her in the first place.

The nurse checked my blood pressure today. Part of me hoped that other day was just one big mistake, that the machine was just acting up. But it wasn’t, and once again, there was a drastic difference between each side. I wanted to cry. The nurse was trying to be encouraging, just as she has been these past two months as I’ve continued to struggle with my declining health.

I told her about my feelings towards her, and the misdirected anger. I felt the need to apologize for my feelings that she would have never even known about if I hadn’t told her. She didn’t take it personally. She said a few things, and then she ended with and I may have saved your life.

And she’s right. But I still struggle with whether or not my life is even worth saving anymore.

 

Pink Puffer

I spent Thursday night in the hospital.

I was having a hard time breathing since Monday. I ignored it, because I didn’t have time to be sick. So it lingered and lingered.Then it got worse. But I still ignored it. I don’t have time to be sick. I have to go to program. I have to work. I have chapters to read, papers to write, articles to publish, people to help. I am not sick.

By Wednesday, it became an effort just to take each breath. I went to program despite my exhaustion, but I couldn’t hide my cough. I started running to the bathroom so no one would see me struggling to breathe.

I heard the nurse calling me on my way back. She seemed concerned. She said she didn’t even need to listen to my lungs to know that something was wrong; she could hear me breathing feet away. I told her I was fine. I’m not contagious, it’s probably just a mild pneumonia. I talked about it like it was a cold. Nothing major. I promised the nurse I would try to make it to the doctor, even though I didn’t really want to.

I wasn’t planning to end up in the hospital, but after three nebulizer treatments with no improvement, I knew I wasn’t going to make it through the next day. They started breathing treatments as soon as I got to the ER. No change. I ended up on a magnesium drip with IV fluids and Solu-Medrol. Blood tests, nasal swabs, and x-rays all came back clean. It wasn’t an infection. It wasn’t pneumonia. It was COPD.

I spent most of the night crying, eventually falling asleep only to wake up and cry again. I managed to get myself together enough to make it to PHP Friday morning. I made it through most of morning session just fine. Then I took a conscious breath and it all went to shit.

I don’t know if I can quite describe what it feels like. You take in a breath okay, but then it can’t get out. You feel like you’re drowning, but not in water, in air. I hurried out of the room to run to the bathroom again. I saw the nurse out of the corner of my eye, but I was coughing and wheezing so bad I couldn’t talk.

I spent several minutes in the bathroom trying to get back to normal. Shallow breaths. Just take shallow breaths and you’ll be fine. I went back to my group. A few minutes later, my therapist came to the door and pulled me out of group. Great. What did I do now? She took me to the nurse’s office and closed the door.

I sat there, surrounded, trying not to panic. The nurse sat across from me; my therapist sat on the floor. Oh, we’re all sitting. This can’t be good. Someone asked what was going on, if I had gone to the doctor. I told them I went to the hospital; that counts as the doctor. I tried to make it seem not-so-serious. They asked if it was pneumonia.

Before I could answer, I broke down crying. All the emotions came back to me again. The anger. The sadness. The hopelessness. I would have rather had pneumonia.

I didn’t want to cry. My tears did not feel justified. My pain wasn’t valid.

This diagnosis, it’s nothing new to me. I’ve known about the COPD for a while now. So why does it hurt every time I hear a doctor say it? Why am I still grieving? I should be over it by now.

It’s not fair. I went through hell. I got out. This was supposed to be my better life, my life without hurt.

Instead I ended up with this. I didn’t get a break. I got a punishment.

I could sense the concern in the room. I pushed aside my anger and stopped crying. They told me there were options. The nurse handed me a paper with quit assistance programs. My therapist said we could work out a plan. It doesn’t always have to be this way. It doesn’t always have to be a struggle to breathe. You are strong and resilient, she said.

I’m tired of being strong and resilient. It was the truth. What’s the point? Look where strength and resilience has gotten me. Look what I’ve become. A mess.

You need to take time for yourself. What’s that? I go to PHP from 8 to 3:30 every weekday. Then I go straight to work at 4. By the time I get home for the night, I have just enough time to put together a cohesive assignment for grad school. Weekends are full of more work, school work, articles, and errands. I don’t have time for myself.

I just want it to all go away. I want an easy life, even if it’s just for a little while. I don’t want to have to go to a program every day. I don’t want it to hurt when I breathe. I don’t want to be so tired all the time. I don’t want to struggle.

I want to pretend that I am healthy. I want to pretend this diagnosis doesn’t exist. I can breathe. This is normal. There’s nothing wrong with me. This has all been a mistake.

I managed to push it all away for a while. I can smoke a cigarette, nothing is wrong with me. My lungs are fine. My denial was fully engaged, and no one was around to tell me otherwise.

Later on that day, I sat across from my psychiatrist as he waited on hold to try to change my prescription at the pharmacy. I felt the tightness in my chest again. I took a breath and started drowning. I leaned forward and tried to get the air out as best I could.

As I sat back in the chair and tried to compose myself, I heard the psychiatrist say so, you’re a pink puffer. I looked at him, a bit confused. I never in my life heard of a pink puffer before. I asked for clarification. Your breathing, he said. That’s a classic forced expiratory wheeze of emphysema. I don’t even need a stethoscope, I can hear it from here.  Doctors would call you a pink puffer.

I don’t know how much longer I can deny the truth.