medical

Pretzels

~ KJ ~ 3 Comments

I don’t have much energy lately.

Not that I ever had a remotely normal amount of energy in the last several years, but I am probably at my lowest energy-wise.

I’m doing my best to not stay in bed all day. I go out, even if it’s just for a few hours. I’ll ride the bus around, sit on a bench somewhere and just people watch, or window shop at the mall. Then I get tired and venture my way back home. I don’t get much done. I’ve barely made a dent in my thesis. I don’t write much anymore. I’m just tired.

Then throw in the added frustration of chronic illness. I can’t even count how many times I’ve had to bite my tongue the last couple of months. People comment on my appearance asking me if I am pregnant, which is especially difficult considering that I was pregnant around this time last year. Then I’ve had other people say outright that I’ve gained a lot of weight, and others suggesting diet plans and even fasting for one week. Completely. Unsolicited. Advice.

Instead of cursing them out like I want to, I just nod or change the subject. I know engaging with them will only ignite my emotions, and I’ve been doing really well keeping them under control, considering everything. But it gets frustrating when it comes up so much.

It’s even more frustrating because I can’t help it. My autonomic dysfunction has spread to my digestive system full force. I had mild problems before, but it has gotten severe over the past few months. I’ve stopped going to the bathroom for weeks at a time. That’s what causes me to look pregnant, because all the weight is in my belly. And I can feel it all there. It’s uncomfortable as fuck. So is the nausea and the reflux and everything that comes along with it.

But it’s not like I can pray for poop, either. Because my digestive system knows no middle ground. It is either paralyzed or on speed and dumping out everything like it’s toxic. I’ve had to wear diapers. This is my life now. I’m thirty-fucking-two.

There’s not many foods I can eat anymore. No dairy. No cheese. No fruits. No meat. No to most veggies. No corn. No chocolate. Nothing high in fiber. Nothing spicy. I’m lucky if I can handle one small meal a day, and it’s usually pretzels. I’m living on pretzels. I’ve been using liquid supplements, but they’re expensive and I can’t keep that up for long.

I see a specialist — a GI doctor with experience in autonomic dysfunction. But it’s not like there is much that can be done aside from what I’ve done already. There’s no medication for this shit, no reset button for my brain. So I’ve just been dealing.

I’m just getting tired of pretzels.

YOLO

~ KJ ~ 3 Comments

I’ve wanted a tattoo for a quite a few years. Every time I planned to get one, I ended up not following through because I couldn’t settle on what to get. I wanted a Phoenix, because if it’s significance in rising from the ashes. But it would have to be a reasonably sized tattoo, and I wasn’t sure I could handle something that intricate on my first go.

I thought about getting a butterfly. Once again, for its significance and relation to growth. But butterfly tattoos had gained popularity, and I didn’t want the meaning to get lost in the hype. But I always wanted something to symbolize my freedom.

Then when I got sick, I was told tattoos were a no go. Too much risk of infection, I assume. So I didn’t think about it for awhile, until the other day. I filled out a short get-to-know-you thing out of boredom. One of the questions asked about tattoos, and I wrote no. When my friend saw it, she said we should go and get my tattoo. Admittedly, we were both overly tired and I was not in the best frame of mind. But when I thought about it the next day, I really wanted to do it.

I’ve had to avoid so many things in my life. Can’t get vaccines anymore because my body isn’t strong enough to fight them. Can’t eat high-risk foods, like raw vegetables, because any contamination can make me sick. Can’t be around anyone who may be sick.

But what’s the point if I still get sick anyway? I can’t live in a bubble. I can’t avoid everything that will hurt me. So why deprive myself of something I wanted just because it might make me sick?

Just a day before, I had gone to a buffet — Golden Corral to be exact. They don’t have those where I’m from, so I was a little excited when I saw one here. Buffets are not good for me — not only because of the higher risk of contamination, but because most of the foods there aren’t good for my GI Isaura. But I said fuck it, I want to go. And we did. And I suffered for it, as I expected. But even through the discomfort and pain, there was a sense of joy in doing something I wanted.

So I took another risk. Today, I got my first tattoo. It wasn’t anything ornate or fancy. I didn’t want to take too much of a risk.

I couldn’t think of a more meaningful tattoo. The date I ran away, and birds of freedom. It’s a constant reminder for me, in those times when I do want to give up, to remember how far I’ve come from where I was.

Guard down, guard up

~ KJ ~ 2 Comments

Sometimes, I let my guard down.

Then, I am quickly reminded of why I shouldn’t.

It’s a complicated thing. The fear of trusting anyone, yet the seemingly innate pull to open up to someone. The desire to be alone, yet the need to be in contact with others. The want for a family, even when family has continually been nothing but toxic.

I made a mistake. I should have seen it coming; looking back, I don’t know why I even put myself in that position. But it’s that seemingly continuous push and pull of two opposing wants that seem to lead to these mistakes.

It was the right timing. I was vulnerable. I had just left to go across the county. I left everything and everyone behind. I was disconnected, not only physically, but emotionally as well. And I wanted so much to reconnect to something or to someone.

And I did. I got a friend request on Facebook from a distant cousin — my mother’s niece. Years ago, I would have immediately deleted it. In fact, I may have even had her and others blocked. But over time, I let my guard down. I let my fear dissipate. But, given the circumstances, I felt okay enough to accept her request. After all, I was nowhere near her or my mother physically. After all, this was someone who hadn’t seen me since I was 14 years old. After all, this was someone who my mother avoided having any physical contact with, someone who my mother spoke ill of (along with her sister and others in her own family). So how much of a danger could it have been? I added her.

I soon learned that was a bad decision. In response to my last blog, she posted several comments, all of which focused on how I was loved and cared for, how I chose to leave the home where I was loved and cared for, how my mother loved her children and wouldn’t ever molest them…you get the gist. I did, too, because I heard it before. Almost word-for-word, in fact. Because they were my mother’s words, her defensive speech. We’ve all heard it before.

I was trying not to engage, but I eventually gave in and defended the truth. I reminded her that she was barely in our lives, how the last time she saw me was when I was 14, and that she really couldn’t have had any realistic idea of what was going on. I told her that I could connect her with people who witnessed the reality first hand — not just of the physical environment we lived in, but of my mother’s inappropriate words and actions. I suggested she be open to hearing both sides, as it seemed she was taking my mother’s word for truth without taking any initiative to find out what existed outside of my mother’s words.

But my words to her didn’t get very far, because when I woke up the next morning, her comments were deleted and so was she.

I had a tiny bit of hope that a friendship could have existed before all of this happened, that I could be connected to a part of my family, even if it was just in this small way.

I’m not that hurt over it. I got over it quickly. I think what stuck out to me the most was just how gullible people could be, how easily they could drink my mother’s Kool-aid and believe everything she says just because she says it. I’m fortunate enough that many people didn’t fall for her lies. I just wish that more of those people were family.

I find the timing interesting. Adding me as a friend a week before my freedom anniversary. Waiting until that very moment to let it out. I highly doubt it was all just a coincidence. But it doesn’t even matter. My lesson has been learned.

In her last comment, my cousin talked about how my mother was sick and suffering.

Good. I’m not going to lie. Good.

And that’s even if she is really sick, because I really don’t think anyone is close enough to her to truly know.

But, I will not feel bad about my anger or my grief. She is in her 60s. She got to live. I am 32 and can barely make it a month without a stay in the hospital, dealing with health issues that people my age (or anyone really) shouldn’t have to deal with. I’m not going to feel bad for being angry at her. I’m not going to feel bad for hating her. And I’m not going to feel bad for not caring about her, because she sure as hell never cared about me.

Three Years of Freedom

~ KJ ~ 3 Comments

My three year freedom anniversary was three days ago. I wish I could say that I celebrated it in some way, but I didn’t.

And that is not the normal for me. Ever since I ran away, I have celebrated every milestone — one year, 500 days, two years, 1,000 days. I’ve always done something symbolic, something meaningful to celebrate the day. The celebrations helped remind me of where I was, and where I came from. I know some people thought it was a bit much, but you never really understand just how important these days are unless you’ve escaped from hell. And I know many of you, unfortunately, can understand that.

But as my three year anniversary rolled around, I didn’t feel like there was anything to celebrate. Over the last few months, my life has fallen apart. I found myself homeless. And even though I found a bed in a shelter, that stay ended up damaging me even more. I wandered the streets. I slept on friends’ couches. And out of desperation, with no options left, I found myself on a bus traveling west to stay with someone I never actually met other than through online conversation.

How did I end up here? Why did I end up here? I still don’t understand what happened. I still don’t understand how, despite everything, I am ineligible for any type of assistance. If I was an alcoholic, or a drug addict, I could get help right away. In the midst of my desperation, I actually considered breaking my sobriety because I knew it was the only way I could get help. But why should I have to? It makes no sense.

I’m angry. And not just because I am homeless. Not just because my only option was to leave the state where I had everything, including my medical care, in place. I’m angry because I’m sick.

It’s not like being sick is anything new to me. I’ve been sick for awhile. But I think, in that time, there was a part of me that didn’t think it was a really big deal. Until I started getting really sick. Until that hospital stay back in May when everything took a turn for the serious. Pulmonologists, infectious disease specialists, doctors in and out of my hospital room telling me that I was very sick. This wasn’t just a cold. This wasn’t something that was going to go away. I must have answered a hundred questions as the doctors tried to figure out just how I ended up this way. It doesn’t make any sense, they’d say. Little did they know, nothing in my life has ever made much sense.

As much as I hate to admit it, I was (and still am) scared. A part of me wanted to run away from my medical problems. If I just left my doctors, left the hospital, that somehow my issues would just disappear. Until five days into my stay in another state, when I passed out at lunch and found myself at the hospital once again.

The hospital did chest x-rays just to be sure everything was okay and there was no pneumonia (as I had a massive thrush infection — completely unrelated to me passing out). The doctor walked into my room and I could see the confusion and concern on his face. There’s no pneumonia, so that’s the good news, but — before he could finish his sentence, I told him it was okay, that I knew I was sick. I realized I’m going to have to have this conversation every time I end up in the hospital. A consistent reminder that I’m sick, no matter how hard I try to pretend like I’m okay.

How is this fair? How is any of it fair? I fought so hard to get out alive and this is where I end up after three years. My mother is free. She is healthy. She doesn’t struggle.

And I am nowhere, sick and struggling.

All of the things I learned along the way have left me with nothing. The people that said they would support me have turned their backs on me. The system that says it helps those in need has left me stranded.

So what’s left to celebrate?

Replace

~ KJ ~ 6 Comments

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.

When Reality Hits

~ KJ ~ 5 Comments

For as long as I’ve spent in therapy (thousands of hours at this point), I can count on my fingers the number of difficult sessions I’ve had.

It’s not that my sessions don’t involve difficult topics. While most of my early therapy experiences focused on tackling surface issues unrelated to trauma, the last nearly three years have been all about my trauma. Even then, I found myself able to detach from emotions a lot of the time.

Just a week before this latest session, I told my therapist about an incident from my teenage years. I was triggered a few days prior when the dog had split her nail and bled on the carpet. It almost instantaneously led to a flashback from when I was stabbed in the abdomen and left the same marks. When it happened, I was lost in all the same emotions. I felt like it was happening all over again. But when I told my therapist about it, I was void of emotion. I didn’t cry. I didn’t feel anything.

I thought I could do the same thing in our next session. Don’t cry. Don’t feel. Just get it all over with. Instead I cried, and I felt more than I ever wanted to feel. I was unprepared for that.

My therapist was concerned. And I knew it wasn’t just her concern. It was the treatment team’s concern. And as much I tried to deny it, it was my concern, too. My symptoms were getting worse. Not only in the last week, but in the last few months. I had been getting increasingly lethargic. No matter how well I sleep, I’m exhausted. Some days, I can barely climb the stairs without feeling like my heart is going to explode. My legs and feet swell, the right side worse than the left. Some days, it feels like I’m dragging 100-pound weights on each leg. Just moving around puts my heart into overdrive. Several times I found myself leaving group because of chest pains.

It was other things, too. Signs of heart failure. I knew it all too well. I watched my father go through it. I didn’t want to watch myself go through it.

I couldn’t avoid it any longer. If you don’t make an appointment with your cardiologist by tomorrow morning, you cannot return to program. An ultimatum with no option for negotiation. A crisis I could no longer avoid.

This session was different. My therapist wasn’t softening reality at all. She wasn’t letting me get away with avoiding the pertinent shit in my life. Not this time.

You know what, yes, you likely do have heart failure. Not going to the doctor isn’t going to change that. She was right. But there’s a difference to me, in suspecting something to be true and then actually having it confirmed. The latter is unchangeable. At least with not knowing for sure, there is just enough room for a small possibility of change, a small chance of it not being true.

Yes, you’re going to be sick for the rest of your life. And I will never understand how that feels, how you feel. It’s frustrating. It makes me angry, for many reasons. I’ll never know what it’s like to feel normal, to not be sick, for just one day. But my mother knows that. She’s not suffering. She’s living longer than I will likely live, more healthy than I have ever been and will ever be. Where is the fairness in that? I lost the genetic lottery big time.

But it can be treated. Yes. Just like my emphysema is treated. Treated, but not cured. Another diagnosis to be added to the list. Another health issue I didn’t need in my 30s. Another illness I don’t deserve.

Is it just about not wanting the diagnosis, or is it more than that? Is it another indirect way to be suicidal? It’s like she knows me. The same reasons why I still smoke with emphysema. It kills me faster, and no one really sees it as a slow suicide; they just see it as being stupid. The longer my heart goes untreated, the sooner I’ll die. Why prolong a life that’s destined to be minimal?

I didn’t tell her that, of course. I told her it was just about the diagnosis. I thought that would put a stop to the difficult conversation, but she just shifted to something even more difficult: the purpose of my life.

You may very well never be able to work again. You may not be able to get through all the schooling you want to. She was direct, in a way she had never been before. We’ve always thrown around the idea that I could eventually start working again, that my heart condition would get better and I could be normal again. But that didn’t seem like a realistic option anymore, at least not in the sense that I wanted to be normal. As far as school goes, I missed the deadline for my doctorate application because I was inpatient when the application was due. So any plans I had for getting my doctorate next year went out the window. And maybe that was meant to be, since I can barely get through the last few courses I have for my masters. Not for lack of knowledge, but for lack of energy.

But maybe you were meant for something different. Maybe you can’t be a therapist, or go into research. But maybe you can help others in a different way. She read the letter I wrote to the hospital. Another example of my never-ending drive to correct wrongs. I told her about the director’s response, how they were going to look into how they can change. See, think about the people you’ve helped just by doing this. You may likely cause this hospital system to change their ways.

I knew she was right, but it still didn’t seem like enough. I needed more. Maybe you can start an organization. I told her I already did. I told her what my dream was for PAFPAC, what I wanted to do when I first started it. But then my health (mental and physical) took a turn and I haven’t had the energy to make it what I wanted it to be. You’re still helping people.

But not as many as I wanted. I admitted to her that my life goal was an impossible one, and that’s where I’ve gone wrong. I wanted to stop mothers from abusing their children; I wanted to prevent people from hurting. And I know, logically, that will never happen.

You can still affect change. You’ve already started. Your actions help people. Your writing helps people. You give a voice to those who can’t speak. You’re going to have really bad days. That’s inevitable. But some days, some days are going to be okay. And it’s those days that you can really be you.

The dreams I had when I first ran away are now gone. My hopes of being a professional, of living a long life, of helping the world, are just not possible. The universe has given me this life of constant struggles. It has taken away too much from me. I’m just not sure if what I am left with is enough for me.

Heartsick

~ KJ ~ 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m a Liability

~ KJ ~ 6 Comments

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?

 

 

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.

I need to go

~ KJ ~ 15 Comments

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.