health

You’re so young

~ KJ ~ 3 Comments

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

~ KJ ~ Leave a comment

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

~ KJ ~ 9 Comments

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.

Loneliness

~ KJ ~ 15 Comments

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

~ KJ ~ 9 Comments

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.

 

31 Going on 70

~ KJ ~ 8 Comments

I celebrated my birthday last week. My 31st.

In many ways, it was nice for me.

My friend at work brought in an ice cream cake for me the day before my birthday, and we all ate ice cream at 10 o’clock in the morning (because the morning is our afternoon). It really brightened my day, even though it was such a short amount of time, it meant a lot to be around people I care for, and that care for me.

When I went to my PHP program on Monday, one of the women gave me a bag of fancy dark chocolate caramels. Most of the people in program know me for two things: my love of dinosaur chicken nuggets and my affinity for chocolate. Since I stopped smoking a few weeks ago, I replaced my cigarettes with Hershey’s chocolates, willingly provided by the director of the program. It was so nice (and a little embarrassing) to be recognized for my chocolate addiction, and I was so surprised that someone would think to do that for me. My face must have lit up, because people commented that they had never seen me that happy before.

It’s the small things that really get me. It’s weird, because in some ways, I don’t want to be recognized, acknowledged, or even noticed on my birthday. But in other ways, I just wish I could enjoy a day that so many other people get to enjoy. I realize a lot of my issues are tied up in trauma. There’s also the fact that my friend died on my birthday 11 years ago, and it feels wrong to celebrate anything happy on the anniversary of his death.

But I made it through. I took it all in. I didn’t break down. I kept myself busy between program and work, and that was probably for the better. Silence and being unoccupied are usually what lead me down the black hole.

Then life happened. The birthday fun was over and I found myself sitting in the ER two days later in excruciating pain. My knee gave out and I fell. Hard. I just wanted to make sure nothing was broken, as I am the girl who broke her foot walking across the street. I thought I was making a wise decision going to the hospital that night. The doctor came to see me, asked me about my history, and sent me for x-rays. Nothing unexpected.

And then the doctor came in with an odd look on her face. I couldn’t tell if she was perplexed or concerned (or maybe both). She asked if I was sure I hadn’t been in pain before this. I told her no, but that answer wasn’t exactly the truth. How can I explain that I learned to block out pain? How can I explain that I learned to deal with pain in order to survive? How can I explain that I learned to believe that pain was my normal? I couldn’t. So I told her no, because the truth seemed too impossible to explain.

I’ve never seen this degree of damage in someone your age. You have severe arthritic damage to your knee. I’m referring you to a orthopedic specialist for more testing and treatment.

I…just went there because I fell. I didn’t break anything, so I guess that was good. It’s most likely a sprain, possibly a ligament issue, but the doctor wasn’t even concerned about that. She was concerned about the old damage. I’ve never seen this degree of damage in someone your age. Those words stuck with me, because they’re words I’ve heard before. I didn’t need to hear those words again. I didn’t want to hear those words ever again.

In all the ways I am trying to improve my mental health, my physical health is deteriorating. I was just starting to cope with the emphysema, another thing they don’t see “in someone your age.” It took an entire year to get to a point of really acknowledging it. I ended up in the hospital several times and it all became real. I was told in my last hospitalization that I had bronchiectasis (non-CF type), another form of COPD. As if emphysema wasn’t enough, they want to throw ANOTHER diagnosis at me. Blow after blow. 

I don’t want to go to any more doctors. I don’t want emphysema or bronchiectasis or a fucked up knee. I’ve had enough shit in my life already. It wasn’t supposed to turn out this way. I was supposed to get out and get better, not become free and lose my health. I can’t handle any more diagnoses, any more problems, any more hospitalizations.

I’m not really sure what state I’m in. It isn’t shock, because really these are things I should already know. Is it grief? I don’t think so. I’m not sure I have the right to grieve. These things are my fault. If I didn’t smoke, if I went to the doctor more, if I didn’t block out the pain, maybe I wouldn’t be 31 years old with problems I should be having when I’m 70.

How am I supposed to feel? What am I supposed to do?

Pink Puffer

~ KJ ~ 11 Comments

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

~ KJ ~ 8 Comments

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.

Revive

~ KJ ~ 5 Comments

She asked if I would allow them to perform life-saving actions. If my heart stops, do I want to be revived, if my lungs fail, do I want to be intubated.

I said, without hesitation, no thank you.

I think I took her by surprise. She told me again what it all meant, and I shrugged my shoulders. She doesn’t know how many times I’ve tried to die. She doesn’t know that it would just be an easier way out for me.

I’ve spent the last 16 years in and out of the hospital. I really hate the likelihood that the end years of my life will likely be spent in a hospital.

Maybe it wouldn’t be so bad if my hospital experiences weren’t so laden with horror. Hospitals are supposed to be safe, healing spaces. But how could they be when that evil woman sat there next to me?

She was never there out of care and concern. She was there to control me. I lay there in my weakest moment and she took it all from me. And I couldn’t fight back. I couldn’t say no. I couldn’t tell her to leave.

Because no one would have understood. They thought she was a loving mother. They didn’t know she was a monster waiting to wreak her havoc. Because the monsters were never under my bed, they were always beside it.

I am trying to be strong. I crack a joke with the doctor. I take a selfie from my hospital bed. But I’m also crying. Because even though the chair next to me is empty, I can still see my mother there, waiting to hurt me.

Don’t revive me. Don’t intubate me. Don’t save my life. I’d rather die than keep remembering.

A Letter to Us

~ KJ ~ 9 Comments

Dear younger parts and me,

I know things seem really scary right now. It’s okay to feel scared. I’m scared, too. You had to be scared in the past, because there were a lot of scary things and scary people. But you are safe now. We are safe. You don’t have to be scared anymore.

I know that mommy made you believe that you were sick. She told you that parts of you made you bad. I know she made that part of you hurt really bad. I know she made your heart hurt, too. I’m so sorry she hurt your body, and your heart. Little girls shouldn’t have to hurt like that.

I know you wanted so badly to be a boy. You thought that it would make everything better. You believed that it would stop mommy from hurting you, that you wouldn’t be sick anymore, that mommy would love you like she loved R. I’m so sorry you felt that way. But it was never your fault. You were never sick there. You were never bad just because you were a girl. Mommy was wrong. So wrong. There was nothing you could have ever done to make mommy love you. She was the sick one. She was bad. Not you. It was never you. You were always perfect. You still are.

I know you’re still so scared of mommy hurting you. You still try to protect yourself from her hurt. I’m so sorry you don’t feel safe. Little girls deserve to feel safe and loved and respected. Mommy shouldn’t have stolen that from you. You deserved all the love and respect and safety in universe. I wish I could have given it all to you then, but I can give you them now.

I know that mommy made you think that your body was not your own. She controlled your body and your mind. You had no other choice. I’m sorry she made you believe that lie. But you have choices now. Your body is yours. These are your toes, your feet, your legs, your arms, your fingers, and your eyes. This is your hair, your nose, and your mouth. And this is your vagina. It belongs to you. It’s part of your body, just like all of your other parts that make you, you.

It isn’t sick or bad. It doesn’t deserve to be hurt. It deserves to be taken care of, just like you. In order to take care of it, we need to go to the doctor. Just like the doctor that takes care of our lungs, and another doctor takes care of our feet, we need a doctor to take care of our vagina. It’s not bad or wrong to go to the doctor. All of those things that mommy said, they were wrong. She was wrong. She was just trying to scare you, and make you feel bad. I’m sorry she lied to you. You are not — and never were — dirty or bad. The doctor knows that, too. The doctor just wants to help us, and make sure we are healthy and strong. The doctor won’t hurt us. She won’t make you feel like mommy did. I promise.

I know you are afraid. You’re just a little girl. Mommy made you do things that children should never have to do, or see, or know. I’m sorry she did that to you. But you don’t have to do grown-up things anymore. You don’t have to hurt anymore. You don’t have to be scared or ashamed. Mommy isn’t here, and you can be you now. A beautiful, kind, loving, healthy, wonderful GOOD little girl. Mommy can’t take that away from you. She tried, but she didn’t know how brave and strong and courageous you were. She didn’t know the amazing little girl you grew up to be.

You can be that little girl now. I can take care of the big girl things, like going to the doctor. I will keep us healthy and safe. I will make sure that we are okay. I promise.

Thank you for being so strong. It’s my turn now.

Love,

KJ