thoughtsonchronicpain

[thoughtsonchronicpain]

2/11/2024 (night)

I'm 25 years old with no full-time job and no romantic partner.

Years ago, I told my therapist that I didn't think I'd live past 20. And yet, here I am.

So what if I just focused on the first part of that sentence: I'm 25 years old.

That, in and of itself, is a victory.

[thoughtsonchronicpain]

10/2/23 (afternoon)

big ol' trigger warning: suicide

"Isn't it good to be distracted?" - Mom

I'm sick of distracting myself. I'm sick of reading. I'm sick of watching makeup videos on YouTube. I'm sick of listening to podcasts. I'm sick of not being able to exist with my own thoughts without them turning against me.

Last Thursday I was the closest I'd ever been to doing it. But I didn't do it. I called my psychiatrist and decided I needed to leave NYC for a bit.

But, each time in the past couple of months I've gotten closer and closer to doing it. Who knows what will happen next time? I wish I could say that I'll be okay, but I don't know if I want to be.

[thoughtsonchronicpain]

9/25/23 (afternoon)

My back still hurts all the fucking time. I still have this stupid lump in my throat. This summer was so, so terrible. Truly just awful. But I'm sick of talking about it...

I've been on dating apps on and off (besides during my ~6 month relationship) since freshman year of college. I don't drink or smoke or anything, but I feel like my relationship to dating apps is not far from someone's relationship with their vape. I turn to dating apps when I'm bored and there's not much else to do. I get a hit of dopamine when I see I have a new match, or better yet a new message.

I try to stay off of them, deleting them from my phone, only to redownload them a few days later. I just can't seem to kick the dating app habit.

Well, I deleted them again last night. I'm scared to tell people because based on the past I'll just redownload them in a few days. But I really don't want to. I really want to get off of them. Maybe that's why I'm writing this: to put it out there, so I'm less likely to get back on them.

So yeah, I deleted the dating apps off my phone and I want to stay off them for at least a couple of months. I WILL stay off of them for at least a couple of months.

I'm sick of a lot of things related to dating apps. I'm sick guys' stupid ass and uncreative bios. I'm sick of mediocre conversations over text that ultimately end in one of us not messaging back. I'm sick of feeling like I'm not hot enough when I don't match with someone. I'm sick of that little bit of hope I have when I start messaging with someone even a little bit cool that always gets squashed for some reason or another. I'm sick of using dating apps almost as an excuse for not going out to meet new people.

And I'm sick of the mindset that comes with being on dating apps: I'm rarely present in the moment, constantly looking for the next cute match on Bumble or Hinge that could (but most likely won't) result in some sort of incredible relationship, and I lack appreciation for the amazing friendships I already have in my life.

[thoughtsonchronicpain]

8/24/23 (afternoon)

So apparently it IS arthritis??? My PT said it's a very mild form, though. I wish the physiatrist who told me about the arthritis in the first place had said it was mild. She didn't.

[thoughtsonchronicpain]

8/23/23 (evening)

I feel like I'm going crazy.

I need to interact with more people. Well, "more" implies that I am already am interacting with people, so I guess a more accurate statement is: I need to interact with people.

Maybe I should start going to different parks every day and just chill there. I can't walk a ton, but after I get there, I could just chill on a bench or something and not have to walk around.

I'm not sure if that would make me feel more isolated though... Like, would seeing people outside interact with other people make me feel worse because I'm not interacting with people/don't have people to interact with?

Might as well try, I guess.

I told my roommate earlier that I am on the verge of either laughing hysterically and crying hysterically... I am unwell.

[thoughtsonchronicpain]

8/23/23 (early afternoon)

So apparently it's not arthritis???? My PCP just called and was like, "the MRI report says your back is unremarkable and calling what is there arthritis is scary." And I was like, "Yuh, I am scared."

Plus the second physiatrist (who told me it's arthritis) also misled me about what two different medications she prescribed me do: She told me she was prescribing me a muscle relaxer when it's actually a treatment for chronic pain in small doses and a treatment for depression in higher doses, and she told me she was prescribing me steroid patches when they are in fact not steroidal.

Literally what on earth is the point of these fancy out of network Fifth Avenue doctors when they're misleading me!?

I'm getting whipped around and no one can actually tell me what's going on.

[thoughtsonchronicpain]

8/23/2023 (early morning)

I'm falling behind.

But it's only been a few months. And I'm only 24. I have two different health issues to deal with. I don't need to have it figured out.

Speaking of health issues, I think my thyroid nodule (the lump in my throat) is connected to the arthritis in my back, and may be autoimmune related. I know patients shouldn't look up symptoms on the internet blah blah blah. But my physical therapist mentioned it a couple weeks back, before my second MRI showed the arthritis. I looked up "thyroid disease and back pain" after I read that arthritis can be caused by autoimmune disease. It turns out, the two could be related. I have a call with my primary care doctor tomorrow afternoon to talk to her about it.

I'm falling behind.

I don't interact with anyone but my roommates. And that's not exaggerating.

I don't have a job.

But I am working on my family history project. And I pitched that story on accessibility in NYC. I just need to focus it more and they'll accept it.

On the bright side, my inability to sleep right now is being caused by emotional turmoil rather than physical pain.

I was really suicidal the other night. It was not good. In fact, it was very bad.

I didn't let myself move from my bed so I wouldn't be able to grab anything I could use to hurt myself.

But somehow I calmed myself down. I didn't even call my psychiatrist. I calmed down almost instantly, which never really happens.

I have so many conflicting feelings right now.

Sam: I'm falling behind.

Other Sam: I'm doing the best I can given my circumstances.

Sam: I should be doing more.

Other Sam: I have plenty going on right now, and my body needs time to rest so I can heal.

Sam: I'm being too easy on myself.

Other Sam: I'm being too hard on myself.

Why do I struggle to meet in the middle? Why do I think in such extremes?

Fuck.

I'm falling behind.

[thoughtsonchronicpain]

8/20/23 (afternoon, cont. again)

My friend told me to stop hiding how I feel. I often say I'm okay when I'm very much not okay, so I don't bother my friends. I don't want to slow them down when we're out or something, so I tell them I'm not in pain.

But, I'm not okay and I am in pain.

[thoughtsonchronicpain]

8/20/2023 (afternoon, cont.)

I looked it up and apparently there are different types of arthritis. Sometimes it's caused just by wear and tear on the area. It can also be an auto-immune thing. The physiatrist didn't say what type it was. I wonder how you figure that out...

I don't want to be miserable for the rest of my life. I know I won't be, but it's so fucking exhausting being in pain all of the time.

When someone asks me if I'm okay, the answer is most often, "No." But I don't want to put that burden of me not being okay on my friends literally all of the time. That's not fair.

Right now, I'm in an "I can't move from where I'm sitting because I might do something bad if I get up" kind of mood.

I’m falling behind. What’s the point anymore?

[thoughtsonchronicpain]

8/20/23 (afternoon)

I got a second MRI on Friday. The physiatrist who ordered it (the one who I'm going to for a second opinion) called Saturday with the results. She told me that it's not a fracture that's causing the pain, but I have arthritis in my lower back. Then she said something like, "Everyone reads these scans differently." So that didn't instill much confidence in me to be honest.

She basically said I'm going to have some bad days and some not as bad days, so I should ice, continue to take my anti-inflammatory medication and use the steroid patches, and do my PT exercises.

It's not something that's going to heal. Ever. It's just something I have to deal with for the rest of my life that will probably get worse as I age.

The physiatrist said it shouldn't stop me from doing everyday activities. But I'm not entirely sure what that means. I can walk, but I often feel like I'm pushing myself if it's too far. I can sit, but if it's for long periods of time or not a cushiony seat, I have to push myself.

I can't exercise. I can't stand or walk for long periods of times. I can't lift anything remotely heavy.

I'm constantly pushing myself. Constantly. I'm so tired. I don't want to constantly have to push myself just to exist.

Fuck.

It's truly chronic. I'm sure (I hope) it'll be better some days.

I don't think I'll get any satisfaction from telling my psychiatrist, who insisted it's not going to last forever.

When I told my dad, he said something like, "That's not good news." And I said, "it could be worse." And, yeah, it for sure could be worst, but it also could have been much better news.

Fuck.

I want to cut to distract from the pain and discomfort.

9 months down, the rest of my life to go.

Fuck.

[thoughtsonchronicpain]

8/18/2023 (early morning)

It's 4am... My throat is driving me crazy. At least my back doesn't hurt too much...

When the physiatrist I saw for a second opinion on Monday saw the CT scan report for my throat, she noted that the nodule is well over 1 cm in diameter. She showed with her fingers how big that is, and, yeah, it's not small, that's for sure.

But during my approximately 6 minute FaceTime with my ENT, she was pretty dismissive of it, saying something like, "It's not that big."

I don't know if the nodule is getting bigger or I'm just more aware of the lump in my throat sensation now that I know that there is an actual lump in my throat, but I'm having SO much trouble sleeping. It's awful.

I'm going to start looking into part time desk jobs tomorrow. Besides the money, I feel like I need to talk to people more. I can feel myself losing the muscle memory of interacting with new people. I feel clumsy in most social situations (not that I am in many social situations these days).

I'm so tired, but I know once I close this laptop I'll become even more frustratingly aware of this fucking lump in my throat...

[thoughtsonchronicpain]

8/17/2023 (afternoon)

The physiatrist I saw on Monday for a second opinion prescribed me an anti-inflammatory medication. I took it for the first time last night, and my back did feel better! (My throat was still bothering me so I still didn't sleep well, but yay for less back pain.)

When I told my PT this morning and I mentioned what the physiatrist had prescribed me, she was shocked. She asked, "This was the first time you were prescribed medication for your pain?" I said, "Yes." She asked, "Has anyone ever offered you pain medication and you said you didn't want it?" I said, "No."

My PT said that the anti-inflammatory medication I'm now on is usually the first step to treating pain like mine. I have been in pain for about 9 months and saw two other physiatrists before someone thought to ask if I wanted pain medication.

To be honest, I am hesitant about taking pain medication. It's slightly ironic, given I am on three anti-depressants, so clearly I don't mind medicating. I think there are a couple main reasons I don't like taking pain medication, and they are, of course, somewhat intertwined.

One reason is that I deserve to feel the pain. I injured myself, so I should bear the consequences. It probably doesn't help I have reflexive self-injurious tendencies.

I'm also generally scared of addiction. It runs in my family, and I've seen what it does to not only the addict but also those close to them. The anti-inflammatory medication is not addictive. If it were, I probably wouldn't have agreed to take it.

Another reason I'm hesitant to take pain medication is that I worry that no longer feeling the pain will make me lose my motivation to work to heal my body. My PT addressed this today. She said that the pain medication brings my pain down to a level where I am no longer restricted and I can do my exercises that help me feel better.

That reasoning really resonated with me because that's how I think of my anti-depressants: they bring me to a mental level where talk therapy is effective. The anti-inflammatory medication brings me to a physical level where I can do the PT exercises.

[thoughtsonchronicpain]

8/16/2023 (evening)

When I first injured my back, I was still working full time. I went into midtown once a week. I carried a backpack during the commute. When I wasn't in the office, I'd walk a few blocks to a coffee shop with my laptop in a tote. I went to Trader Joe's and/or Target every week, and carried my groceries back on the bus or subway.

A couple months into the pain, I started taking the bus to Trader Joe's and an Uber back to my apartment, so I wouldn't have to carry the bags of groceries too far. I also started using a cart instead of a basket at the store, even though a cart makes it more likely for me to be in someone's way (and I absolutely hate that). And at the beginning of this summer, I went to the park almost everyday.

But now, late into summer and almost 9 months into the pain, I'm finding it incredibly difficult to motivate myself to do any of that. Motivation doesn't feel like the right word... Because that would imply I have the ability to do those things. Well, technically, I do have the ability, but I don't want to keep pushing myself.

I'm in pain all of the time. I have a limited amount of energy, and I need that energy to commute to and from my appointments, and do my PT exercises.

I don't have to push myself. I don't have to.

[thoughtsonchronicpain]

8/15/2023 (evening)

I don't think I've mentioned this, but in a shocking turn of events, after over a year of feeling like there's a lump in my throat, the CT scan revealed... drumroll please... that there is a lump in my throat. It looks like it's some sort of thyroid nodule, so I'm going to see an endocrinologist. And after over a year of dealing with near-constant swallowing, I am getting referred to a swallowing specialist.

You may be wondering, why did it take over a year for these things to happen... I guess it's my fault, in a way. The healthcare system sucks in this country, and the only way to receive quality care (besides having the money for it) is to be persistent to the point of being bothersome. I hate being a bother. I hate feeling like I'm inconveniencing people, especially when the only motivation I have to inconvenience someone is my health.

Well, it is these people's jobs to deliver healthcare. So maybe I shouldn't feel like such a bother. But it's hard not to feel annoying when some of the doctors I see make me feel so dismissed.

Probably the most traumatic medical experience I've had was this past spring. Below is part of an email I sent to my gastroenterologist about it:

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My experience with the pH test and swallowing study was really, really negative. I couldn't complete the swallowing study because of the extreme pain and discomfort the big catheter caused me. I could not go without swallowing or retching or coughing for more than a couple of seconds so he was unable to get any data. 

I was also visibly upset and uncomfortable during and after he put the smaller catheter in for the pH study. After he put the smaller tube in, he explained how the device worked. I was very obviously crying during this interaction. He then got up and left his office, and then showed the nurse what I had retched up in the sink, and I heard her say, "Damn, I just ate lunch." And they had a bit of a laugh about it.

When the doctor walked out and saw me standing outside he said "You're done. You can go." And pointed me towards the exit. I felt extremely dismissed and neglected when leaving the office. 

The following three hours were terrible. I did not stop crying, and was in constant pain. It got really bad when I moved at all, breathed through my nose, or talked. 

I called your office but you were unavailable so I ended up taking the tube out after about three hours. 

When I went to the office the following day to return the device, the person at reception asked how long I had it in for and I said "three hours because it really hurt." She then commented and laughed that it was a record for how short of a time someone had it in. She told me that most people said it barely bothered them and she had only seen one person who really wanted it out after the full 24 hours. 

I tried to be pleasant but was tearing up. She then went to the doctor to tell him and she came back and said that he wanted to know how my symptom was during the three hours. I said that I couldn't even tell how the globus was because I was just in pain the whole time. 

I was very upset (although maybe not visibly), but was voicing that I had experienced pain due to the study, and was met with jokes and absolutely no concern for my wellbeing whatsoever.

This was extremely invalidating and upsetting. The three hours of pain was awful, and coupled with being dismissed by the staff and doctor made for a very traumatizing experience.

--------

So yeah, that sucked.

Also, the doctor who did the PRP epidural in my lower back (which, in case you are wondering, did absolutely nothing to relieve my pain) was very dismissive.

I'm not sure if I'll be able to explain this well, but basically in the follow up appointment to the epidural, he talked at me about the procedure and how it should/would make me feel better (it hasn't). Whenever I said something about my symptoms since the procedure or about what I've been doing in PT, I felt like I was interrupting him. I could barely get a word in during my appointment to talk about my own body. Whenever I did manage to say something during the appointment, he wouldn't respond to it. He made it seem like I was interrupting him by being like, "Yeah, yeah. As I was saying..." and not acknowledge what I had just said.

I really respect my ENT and know that she is extremely competent, but she sees so many patients that I don't feel attended to, I guess. She seems to rush through our appointments because she's so busy, so I get caught up in that rushed feeling and tend to forget what I need to tell her to get the appointment over with so I don't take up too much of her time.

It sucks that even though I have the necessary resources (both time and money) to see these doctors, it's not enough. In addition to being in constant pain, I feel like I have to actively fight to get my doctors' attention and care. It's definitely not a bad thing that I'm being forced to learn how to be more assertive, but all of this shit still sucks.

[thoughtsonchronicpain]

8/15/2023 (afternoon)

My roommate is a genius. How did I not think of grocery delivery before? Why was I like “Oh, I have to move back home,” before I thought of getting my groceries delivered?

I swear the self-injurious habits are constantly manifesting in different ways. I haven’t cut since college, and yet my instincts still guide me towards suffering. I don’t take pain medication, not even Advil. My first thought is never to make things easier for myself.

My physical therapist was a cheerleader today, as she described it. She said to start an "objective accomplishments journal" to keep track of my improvement/healing. I guess I'll give it a shot, but I'll bitch about it after:

Objective accomplishments:

My glutes are less tight. My PT was able to work on them longer and more aggressively than she could two weeks ago.

My PT said I wasn't able to do one of the exercises I did today only a couple of weeks ago.

Bitching about it:

Why does any of that matter when my pain level is the same, if not worse?!

My PT keeps saying that it'll take 6 to 8 weeks to take the pain down one level. It's been like 7 weeks since I started working with her, and, again, my pain level is the same, if not worse!

It's exhausting being miserable all of the time. But it's boring and feels unproductive to constantly distract myself. But being miserable isn't productive either, I guess...

[thoughtsonchronicpain]

8/15/2023 (early morning)

Why am I crumbling now? It's been months of pain in my back and over a year of discomfort in my throat. Why is it now that I cry every night, only to fall asleep once I've fully exhausted myself?

I feel like I've reached a breaking point. I don't even know how I've gone this long without breaking like this. It feels so sudden. Why now?

I'm not sure how many people will see my posts, but it feels good to put my thoughts out there.

I'm scared. I'm scared of breaking even further.

It's strange that these days my longing for escape from my body is not motivated by depression. My body and mind are once again at war, but this time I want to escape my body, rather than my mind. I'm not sure if that makes sense.

But it's not that simple. The body and mind are too interconnected for it to be that simple.

All I know is that I am in pain and I want it to stop. I want it to stop so, so badly.

How am I supposed to live like this? I'm not asking that because I think that this pain will last forever. I am not future-oriented enough for that. I'm asking because I know that right now I am hurting. I'm asking because tomorrow I'll be hurting, and I have to go to the grocery store. I have to go to Target. I have to commute to Manhattan from Brooklyn for physical therapy.

I wish I could go home and be with a family that brings me comfort, but I'm not sure if I have that. It would be nice to be fed and not have to worry about little day-to-day stressors (that are much bigger when you're constantly in pain), like going to the grocery store or Target. But my parents aren't in New York, and I have to be here for PT and my many doctor's appointments. Maybe Dad can stay in New York instead of Colorado this fall.

But then I wouldn't be with my roommates. I love my roommates. I would feel so lonely without them, so far away from them.

I guess I can't have both. I can't have the more physical support and comfort of being with my parents, and the emotional support and comfort of being with my roommates.

Why are the pain and discomfort getting to me now? I don't think it's because we broke up. It could be because I haven't seen my psychiatrist in a three weeks and I won't be seeing her for the next three weeks either. But we didn't even talk about my pain and discomfort that much.

I'm scared. I'm scared at how fast my attitude has changed. I'm scared of what could happen if it deteriorates further.

Not to be that bitch, but I'm sick and tired of being sick and tired. Am I wallowing? It's absurd to be this upset all of the time, but also I am in pain ALL OF THE FUCKING TIME. So maybe it's not so absurd. But it is exhausting. It's all so exhausting.

[thoughtsonchronicpain]

8/14/2023 (afternoon)

I saw a new physiatrist today for a second opinion on my lower back pain. She did not seem impressed by the care I have received so far. Not just for my back, but also for my throat.

She offered a lot of different potential treatments to ease my pain. Injections, patches, laser therapy… Why was I so hesitant to accept things that could decrease my pain levels?

My roommates are working out together. I’m jealous.

I don’t think I’m attached to the pain, like I was attached to my depression.

Give yourself some grace. You are in pain constantly. Give yourself some grace. You don’t have to cook every meal you eat. You don’t have to, so don’t put that pressure on yourself. Give yourself some grace.

I think I can feel the depression creeping in. It’s probably some combination of not talking to my psychiatrist for 3 weeks and the chronic pain and the unemployment. I’m useless. All I can do is type my feelings out on this stupid laptop. What good does that do? Well, it does give me an outlet. But I’m not contributing anything. I’m not contributing to the system, I guess. Is that what’s frustrating me?

I hope that one day I can look back at these rants with compassion for my younger self. I hope I can look back on these rants and not be feeling this pain.