I need to go

It was just supposed to be a regular doctor’s appointment.

I wanted to see if my doctor would change some of my inhalers, since my recent hospital visits indicate that something isn’t working right.

I was still sick on Monday, but I didn’t think anything of it. I took the train ride down and walked a mile to my doctor’s office. No problem. I made it just fine. I was still standing.

After a few minutes of waiting in the waiting room, the nurse called me back to the room. She took my vitals, and asked if I was okay. Of course I’m okay. I’m just here to change my meds.

The nurse practitioner came in, listened to my lungs, then left the room. Well, then.

A minute later, the nurse came back with an oxygen tank. Then the nurse practitioner came in. You need to go to the hospital.

I sat there, completely shocked. I just came for a followup. This was not in my planning. I had work in a few hours. I needed to get out of here so I could catch the train back home. I don’t have time for the hospital. I don’t have time for this.

But I didn’t have a choice. There was no air exchange in my lower lungs. I wasn’t getting enough oxygen. I ended up being taken by ambulance to the emergency room, in a hospital I had never been to, 40 minutes away from my home.

I couldn’t focus on anything but the time. If I could just get this over with, I can still make it to work. I didn’t understand what the big deal was. I haven’t passed out. These people are just overreacting. I am fine. I can walk. I can talk. I am fine.

But I wasn’t fine. The breathing treatments hadn’t helped. The IV steroids weren’t helping enough. My oxygen was still too low, and they had to admit me. It was then that the panic started to set in. Once they wheeled me to my room upstairs, I started to lose it. The emergency room I could handle, but not this. I started crying.

I could feel myself starting to slip away. I tried to tell the nurse what was going on. I told her I had PTSD, that something bad happened to me in a hospital and that this was extremely difficult for me and that I would rather leave. I kept saying I need to go.

What did my honesty get me? A psych hold. As if I didn’t have enough going on, their response was to put me on a safety 1 on 1. I wasn’t suicidal. I was in a panic state.

I was humiliated. They forced me to take off all of my clothes, including my underwear. I explained to them that I was a survivor of sexual abuse and that I needed my clothing to help me feel protected. They gave exactly zero fucks. I asked if I could speak to someone about this to explain the situation, and they told me no. I asked again to speak to someone higher up, and was told there was no one to speak to. Once they put you on a psych hold, you have no rights. I asked for water for over an hour and couldn’t even get that.

I should have been at work that night. I shouldn’t have been laying in a hospital bed without my clothes and possessions being treated like I had committed a crime. I couldn’t even pee by myself. The aide had to stand there and watch me pee and wipe, just like my mother used to watch me before she decided she needed to “help”.

I cried off and on that night. I wasn’t even concerned about my lungs anymore. I wanted my protection back. I wanted my dignity. It was stolen away from me. Again. My therapist was trying to help calm me down, but I was so out of it I couldn’t process everything she was saying. I eventually got so tired of crying that I fell asleep.

I called my program therapist early the next morning to tell her what was going on and ask for support. I was concerned about the psych hold more than anything. I didn’t want to end up inpatient, and I wanted her to be able to advocate for me if needed. My experience with the nurses had been so horrible, that I had low expectations for the psychiatrist. I expected to have to fight. But I didn’t have to. I saw the psychiatrist later that morning and after two minutes, he had taken off the psych hold. I told him I  had explained to the nurses that I had previous trauma in a hospital and I had PTSD, and he said my reaction was completely understandable given the circumstances.

It was great that the psychiatrist realized that, but I had been put through 17 hours of unnecessary bullshit, re-traumatization, and cruelty. For nothing. I was punished for being a victim.

By then, I didn’t even care how my lungs were at all. I could have been dying, I didn’t care. I was not staying in that hospital any longer. The pulmonary doctor came to see me. She saw something on the x-rays and told me I needed a CT scan. Nope, sorry. I have things to do. My patience was already too far gone. Am I dying right this second? No? Then I need to go.

I told the pulmonary doctor I would come back for the tests. But I don’t need to go back.

I don’t need any more diagnoses. I don’t need any more problems. I don’t need any more humiliation. I can’t take any more.

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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.

Rage

In more ways than one, I am approaching rock bottom. Physically, psychologically, emotionally, financially. I am a disaster.

I left the hospital, but the truth is that I should still be there. And they all told me that. Every doctor I had to see. I don’t even know how many, because they all looked the same to me. Covered by masks and gowns, all I could decipher were voices, all saying the same thing. You are very sick.

I was not prepared. I thought I was just having trouble breathing. I shrugged it off until the coughing got worse, enough that I started coughing up blood on my way home from work. I took a detour to the ER, expecting a breathing treatment and a discharge. Instead I ended up with an admission to isolation with the avian flu, suspected pneumonia, and a COPD exacerbation.

I fought to get out. I left them with little choice; if they didn’t discharge me, I was leaving AMA, and they knew if I left without medication, I could get sicker and die. I still endured their lectures, their voices of concern. You’re very sick, they said. And all I could say to them was I’ve been through a lot worse.

I don’t know how much more my body can take. It’s been through hell, and I just keep making it worse. You would think I’d be doing my best to stay healthy, but I’m just pushing myself closer and closer to pain and death. I walked around aimlessly yesterday, in the cold, smoking cigarette after cigarette, cycling through fits of crying and fits of rage.

I had such an intense urge to die. I ran through the street as cars were turning in, but none of them hit me. Why can’t I just get that one distracted driver to do me in? I tried to cut my wrists, but I couldn’t get my hands to stop shaking. Why can’t I just be strong enough to do it myself?

I think about getting high almost every day. I miss it. I miss not having to think about shit for awhile. I miss the feeling, the feeling that nothing else matters because you can stop giving a fuck about everything for awhile. Poverty is probably the only thing that has been saving me from that right now. I can’t even afford to live, let alone afford coke. But that’s my fault, too. I let people walk all over me, I let them take advantage of me because I’m just so afraid to say no, so worried about hurting people’s feelings at the expense of hurting myself and my own. I paid their bills when I should have just been paying my own. So now they are sitting with their new phones and tablets, and I’m selling mine just so I can afford one more week of therapy and another bag of rice. But it’s my fault. I can’t be mad at anyone else, so I hold it inside, just like I’ve held everything else for so long.

I’ve been thinking about calling my mother. To say what, I don’t know. Maybe to say I’m sorry for being such a horrible daughter. Maybe to hear her voice, to sense her familiar anger. Maybe to ask her why, why she had to do the things she did, the things that have led me where I am today.

Or maybe to let out my rage on her because the rage I’ve been unleashing on myself hasn’t been working. It just keeps building and building and I don’t know what else to do. But I know if I go on like this much longer, the rage will destroy me before anything else does.

The Things I Did When I Was Hopeless

I never expected this life.

I never expected to be able to step out the front door and walk down the street; before, I was not allowed to leave the house by myself for any reason.

I never expected to be able to check my own mail; before, I never even had a key to the mailbox.

I never expected to be able to lock my bedroom door and sleep at night without fear of being abused; before, I could never rest easily, knowing that my mother could come in at any time.

All of the things my mother told me would happen, they haven’t come true.

She told me that no one would ever like or love me, but I’ve made friends here.

She told me I would never amount to anything, but I’m doing great things.

She told me I could never live without her, but I’ve been living without her now for 13 months.

I wish I would have known that my life would be this different before I did the things I did when I was hopeless.

For a long time, I was a prisoner serving a life sentence with no chance of parole. I tried to reach out for help, and people turned away. I tried to run away from home, but my mother found out every time. I tried, for so long I tried to get free, and instead I ended up trapped even more. So I gave up. I lost all hope. I believed that I was going to spend the rest of my life in that hell.

I was living a shell of an existence, leading a life of pain I didn’t want to prolong any more than I had to. I had no access to a gun, or I would have ended it right then and there. I made several attempts to end my life as early as six years old, but none of them worked. All it got me was damaged kidneys and an even deeper sense of hopelessness.

So I found covert ways to slowly kill myself. I swallowed pills like tictacs, knowing they would damage my kidneys even more. I banged my head against walls and gave myself concussions, hoping one time that I would pass out and never wake up. I drank until I blacked out, hoping I would eventually get to a point where it would be enough to finally crash my system.

And I smoked. I knew that smoking was a guaranteed risk for me. I had already been struggling with asthma and chronic pneumonia since I was 14 years old. I knew that smoking would make me sick. I knew that it would further damage my already damaged lungs. This. This was my ticket to death. This was my escape from hell.

I smoked for years. Even as I felt the pressure building in my chest, the familiar feel of fluid accumulating in my lungs, I continued to smoke. It got to a point where breathing was no longer automatic; it was an effort. It was painful. Not being able to breathe is a scary feeling, one I’m not even sure I can adequately describe to someone who has been lucky enough to never experience it. But every time I became gravely ill, every time I could hear the crackling in my lungs with each breath I took, I secretly hoped it would be the end for me. The pain it caused was nowhere near the pain I felt existing in the prison I was in. I was hopeless.

I did not expect to make it here. I did not expect to escape. I am free now, but all those things I did when I was hopeless have followed me. The scars will fade, the bruises heal.

But my COPD will not go away. And I can’t help but blame myself. I know that it’s not just one thing that caused it. I was medically neglected. I lived in filth and breathed in mold spores every night. I worked five days a week in a dusty warehouse, inhaling so much dust that I would cough up gray mucous every night. But I also smoked. Because I wanted to die. And that’s all I can think about.

When I see an older person on the street, I wonder if I will ever make it to that age. I think about all of the things I will miss out on, the good and the bad. I missed out on my entire childhood. I lost my adolescence. I lost 11 years old my adulthood. And I’ll likely lose most of my elderhood. All because I was so hopeless, I did things I knew would kill me, because I never expected to be free.

When I was first diagnosed, I existed in a world of conscious denial for a while. I told myself that I had nothing to worry about, that I was young, that I didn’t need to take my medications because I felt okay. I acted like I was invincible to the effects of the disease. Then I learned that someone had passed away from COPD – a woman who was only one year older than me. I grieved for her, and I also began grieving my own death. No longer could I tell myself I’m young. I could end up dead. I am not immune.

The irony is that, if this were two years ago, I would have gladly accepted death. I wanted it, because death was the only way I thought I could escape my mother’s abuse. But I don’t want to die. I’ve experienced a life I never expected to live, and I don’t want to lose that any earlier than I have to.

While there is a small part of me that still holds on to hopelessness, that still wants to die, there is a larger part of me that wants to live.

 

Trapped Air

I’m going to write several blog posts because the topics are so varied, and I really don’t want to mash them into one giant clusterfuck of a blog post.

I’ve been feeling kind of shitty physically lately. I assume it’s because I am adjusting to the new respiratory medications (even though they are not new, I’ve just been off medications for the last several months because I’ve been sans doctor). Or I could be getting sick, because one of the unpleasant side effects of corticosteroid medications is that they suppress your immune system, making you more susceptible to illness. Isn’t that funny how that works?

Last week, my doctor explained to me how air was getting into my lungs, but wasn’t getting out – instead, getting trapped inside. For normal people, breathing out should not require any effort. For me, it requires a massive amount of effort, and even then, air is still trapped inside.

As I thought about this more, I couldn’t help but find it so similar to the rest of my life’s experiences. I took in trauma after trauma, and then it got trapped inside my brain and now those memories can’t really get out.

I was literally trapped in my house for most of my life. I was trapped in a family I didn’t want.

Why is “trapped” a recurring theme in my life? Trapped body, trapped memories, now trapped air.

I’m still in a little bit of denial. Once I moved, I just told myself all of my breathing problems were because I was living in filth. That was a possibility. My family was not clean. There was dust, mold, mildew, and bugs, aside from a menagerie of poorly taken care of animals (including five cats all sharing two small litter boxes). I was in and out of the hospital since my early teen years with pneumonia and unstable O2 labels.That was my norm. I thought that would all disappear once I moved. But it didn’t. Because it’s a disease. The damage is already done.

On a positive note, I have been smoking a tiny bit less. Still smoking. But less. In all honesty, it’s probably the medication at work, because I have not been making a conscious effort to do so.

On a less positive note, it’s really annoying to be talking to someone and randomly cough up a string of mucous.