lung disease

Trapped Air

~ KJ ~ 1 Comment

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.

I need to pee.

~ KJ ~ 3 Comments

I made it a good three and a half minutes into my therapy session before breaking down into tears.

I was already feeling miserable. My foot was hurting so badly that I had to wear sandals, which I hate doing. I was tired. I was still angry about the doctor’s visit.

My therapist asked something about the doctor, I forgot exactly what it was. All I know is that is what started my emotional spiral.

“I hate her. I don’t need to see her again.” I turned away and started crying. My therapist sensed right away that something was wrong and gave me the box of tissues. She asked me what was going on. “Nothing,” I said, as usual. “It’s not nothing, I can see that very clearly.”

“She put COPD on my medical record. I don’t have COPD. I’m only 30. Why would she do that?”

Then I started crying even more, this time out of sadness as much as out of anger. My therapist knew about the COPD diagnosis, but didn’t really know what COPD was, or the severity of it; she’d only ever heard of the term in passing.

I told my therapist that this wasn’t the first time I heard the diagnosis, but it was the first time a doctor made it official on record. For some reason, there was something about seeing it on paper that made it sink in for me. And I hated it. I see COPD as a slow death sentence. There’s no reversing the damage. You’re basically fucked and doomed to a slow, suffocating premature death.

My therapist was doing her best to make me feel better. She said we had focused so much on preparing for how I would handle the actual visit, that we never went over how I would handle whatever medical problems may come up. She talked about how medical science is always improving and coming up with new advancements and treatments, and that a few years down the road, maybe there will be something for COPD and I could live a better life.

But I wasn’t having it. In my mind, I was envisioning a life on oxygen and a death before age 45. I spent 29 and a half years in hell only to free myself and experience a different hell altogether, for the remainder of my life.

I eventually stopped crying only to continue directing my anger at my doctor, finding other reasons to hate her. Then I started to get overwhelmed and stopped myself. My therapist asked what was going on.

“I need to pee” I said. It was true, I did need to pee, but it wasn’t why I had changed.

My therapist told me to go ahead and use the restroom. I told her no, that I would be okay. She told me again that I could go and come back and continue therapy. I said no, saying that my feet hurt and I didn’t want to get up.

“Well, you can’t pee in my couch.”

“I’m not going to. I’m fine.” This was not the first time we’ve had this battle. The humor quickly turned to seriousness. I clearly had to pee (my legs were shaking) despite my absolute denial and insistence that I was fine. My therapist asked me why this was so hard for me. I told her nothing was hard for me, that I was just fine. She asked, in a firm tone, why I couldn’t assert my needs.

I quickly responded without even thinking, shouting “because my needs don’t matter.”

And then I cried. Again. Because I realized the gravity of what I just said. And because I’m an emotional basket case. I was letting my mother’s voice overpower everything. I couldn’t have needs then. I’m still believing that now. It wasn’t about pee. It was about so much more.

On a positive note, I did eventually get up to pee. But only because I had made a horrible joke (that made both of us laugh) and ended up nearly peeing myself. When I came back, I asked if we could talk about the weather. I no longer wanted to talk about the COPD or the fuckery of my life. I just wanted to talk about the weather. She asked if we could talk about this again in the next sessions. I told her it was fine. I just need some time. It’s a lot to take in and I don’t think either of us were prepared for this.

My therapist reminded me that there are people who care about me. She cares about me, my other therapist cares about me, my coworkers care about me. The problem is me caring about me. I fall short when it comes to that, and I know that. My therapist reminded me that we all eventually die. Even if I only have 10, 15, or however many years left, I can still do great things. It doesn’t have to be a life spent in anger and bitterness. But I’m not there yet.

Let me be angry and bitter for a little.

Doctor’s Appointment

~ KJ ~ 2 Comments

I had my doctor’s appointment on Monday.

It was full of a lot of disappointment.

I am proud of myself for sticking through it and not backing out, despite terrible anxiety.

I sat in the waiting room filling out endless paperwork. I’m pretty sure my legs were shaking the entire time. I considered walking out twice, but I couldn’t.

I finally got in the room and the doctor came in. She seemed a nice. A little upbeat. I’m weary of upbeat people. Perhaps she drank too much coffee. She looked over my paperwork, then focused on my lengthy list of hospitalizations. Panic attacks, psychiatric, psychiatric, malnutrition, psychiatric, psychiatric, and then at least six hospitalizations for pneumonia that I could remember in the last decade. Then she noticed the name of the hospital and asked me where it was.

“Oh, I delivered babies at that hospital. I used to live there!”

My heart sank a little. Of the hundreds of cities and towns in this state, this doctor happened to live in my hometown, just a few minutes away from where I used to live. It’s not even a major city, which makes it even more weird. A part of me instantly put a guard up. Anyone from back home is a possible threat in my mind, even though the actual likelihood that they are is slim to none. Tell my brain that.

She did a mental health/depression screening. I failed. I should have known better. Because then, of course, she wanted to put me on psych meds. No thanks. She named several antidepressants that her patients had shown success on. That’s great. Except a) I don’t have clinical depression and b) I can’t take anti-depressants. I am part of the small percentage of people who have reverse reactions to SSRIs and SNRIs and end up more depressed and suicidal. There are no medications for DID. I didn’t come here for psych meds. I started to get frustrated and lost hope in the rest of the appointment.

Then she suggested a medication for my migraines, and said it would also help me stop smoking. I recognized the name as a medication I had taken before and had to stop taking because I couldn’t handle the nausea and complete loss of appetite. But she was a little insistent, even after I subtly mentioned a few times that eating enough is already a problem for me. But I’m fat, so most doctors don’t see past that and assume I could benefit from a loss in appetite. They don’t realize that, just two years ago, I weighed 160 pounds more than I do now. I just gave in and let her write the prescription, telling myself I could decide later on if I wanted to take it. Then I realized that her dosage is 4X the dose I was taking when I stopped taking it some time ago. So I’m certain taking this medication will not go over well.

She was especially concerned with my respiratory problems. I have a history of asthma, chronic pneumonia, and respiratory failure. I smoke. I have a family history of heart disease. She wanted an EKG, but by the end of the appointment I just couldn’t do it. She listened to my lungs. I hate taking deep breaths, because I can hear and feel the air struggling to get out of my lungs when I exhale. It is not a good sound. It is not a good feeling. This was no different.

She tried to explain, using her hands, what was happening to my lungs. She mentioned COPD – and this wasn’t the first time I had heard that. My long history of respiratory problems and consistent pattern of breathing difficulties had been pushing me towards a COPD diagnosis, but no doctors had ever made it official and never made it a priority. She prescribed me a few different inhalers, which she said would treat both asthma and COPD. And in my mind, it hadn’t yet clicked that she was insinuating that I had COPD. I thought she was just saying it was a risk to try to get me to stop smoking.

But then, the next day, I checked my medical record online to make sure all of my information went through, and right there, towards the top of my chart, was chronic obstructive pulmonary disease, unspecified – Active – Diagnosis Date 03212016. For some reason, in that moment, it hit me. This diagnosis was on my medical record. What the fuck.

I was angry. I was enraged. Not at myself. But AT THE DOCTOR. How could she do this to me? I am 30 years old. COPD is for old people. I am not old. I do not have COPD. And being the irrational person that I am sometimes, I responded by going to the store and buying MORE cigarettes – because in my mind, if I already have the diagnosis, why the fuck should I care now? It’s just been a whirlwind of emotions about this that I still haven’t processed yet.

Going back to the appointment, she took a lot of blood. Probably more than I’ve ever had taken before. She is testing my vitamin levels, thyroid, blood titers, all the usual shit and then some. And that was it. There was so much focus on my mental health and my breathing, issues that I thought I had under control, and nothing about my constant pain. I was disappointed. I have to go back and see her next month, but I just don’t know if it’s worth the travel to get there. It did not go as we (me and my therapist) had hoped. I will talk to my therapist more about it in our session tomorrow, but I just don’t know. I need to take some time and think it over. As I smoke more cigarettes. With my new inhalers.

I’m sad that so many doctors don’t consider the past, only the present. Of course I have trouble sleeping and hate life sometimes. If you knew what I experienced the last 30 years, my present makes sense. Yes, I’m overweight now. But I lost a tremendous amount of weight in a relatively short amount of time and got sick from it. So while yes, I need to lose weight, I don’t need to promote my eating disorder to do so.

I know that some of my health issues are my own fault. Smoking does not help my cause. But I also had severe respiratory problems well before I started smoking. I started because at that point, I didn’t care. Part of me still doesn’t. But still. I’m only fucking 30. Where the fuck did I go wrong in life?

Meanwhile, the shittiest fucking people alive are still living. My mother will probably outlive me. My father has had several heart attacks, a stroke, and congestive heart failure for years and he is STILL hanging on. What the fuck.

Life is a cruel joke sometimes.