a chronically ill rant

¡Possibly triggering and/or sensitive!

Talking about being chronically ill, doctors, medical issues, hospitals, mentions of an ED, puking, and possibly self-harm

Long rant. But maybe people can relate

I for some stupid reason feel an inherent guilt and shame about ranting. I just ranted about this to my friends and immediately felt not only bad about it, but I feel ashamed. Possibly, because of a years-long (7 or 8 years) toxic friendship, I "properly" ended only a few months ago, which felt more like coming out of an emotionally abusive relationship.

I'm going to be very honest. I'm writing this with blurry eyes because I just sobbed during my front-door-smoke-break, because I'm at my parents' house.

But, as I said in another blog, I think, I find comfort in the anonymity of this site. Except for the one irl friend I have on here, and if he's reading this, hi buddy... uh... don't mind me?

The thing that's so bothersome is not easy to summarize at this point.

And in no way am I good at writing a coherent timeline when it comes to myself and my life, so bear with me, this might be an emotional (for me) and chronological roller coaster.

So, the thing that triggered this rant is a recurring stabbing pain in my lower right side.

The thing with it, is that I have absolutely no idea whether or not to call my doctor about it, because of multiple reasons. 

To start; I have a strained relationship with medical professionals, that was only recently somewhat mended, and once again broken. I've been going to doctors a whole lot since my childhood. Seemingly, I came with my dad's weak immune system. I would often have really bad colds, fluid in my lungs, a torn/strained Achilles (I can't fully remember), a mysterious horrible pain in my knee, and eventually chronic, and unexplained, fatigue.

When my first knee issues started, I went to physiotherapy for a while, after a lot of doctor visits, and the continuous excuse of "You're young, it's growth pain" It wasn't just growth pain, but after an x-ray, and a lot of visits, my physiotherapist didn't figure it out, and it sort of went away.

Then came the years of recurring knee pain, locked knees, my knees giving away, etc. And with it came the "You're young." "It's -insert sloppy diagnosis- it will go away on its own" etc. etc. Never a real diagnosis.

Then came the chronic fatigue, the cherry on top which made me quit volleyball. 

(I used to play volleyball for years, I loved it. I kept playing, even when I was being bullied by my own team in my first year or two, I didn't quit because I loved the sport. But then came worsening knee issues, fatigue, a shift in teams, and lowkey nepotism... I got put in the lowest team because my parents didn't pay the organization extra money... no lies.)

I got so many blood tests, blood levels, heart rate looked at, etc. And never an answer, except for eventual wide grasps when my sugar and iron levels were a bit too low (most likely caused by my ED at that time). Always excuses, or "We can't find anything"

At some point, I also developed lung issues. And without actually running any tests, I got diagnosed with bronchitis, and was prescribed an inhaler used for short term.

And around the time I was 15 I developed a skin disease, that first got written off as a fungus type infection, or whatever. Which got so bad that I couldn't wear my binder (says a lot, I slept in that thing because of my family), the only comfort I had was under the shower, and I was cold while it was 30°c (86°f). It itched so bad I scratched my skin open, and then kept scratching more. fluid built up under my skin and oozed out of the wounds it created, my face turned into a circle, and I had flakes of skin everywhere.

I ended up going to an emergency doctor with my dad, because my regular doctor refused to see me after we called him about it, it was the very start of covid time, so we couldn't go to him, and he didn't want to come to us, and wanted to prescribe the same medication but stronger. My dad then called bullshit and took me to the hospital. Because I had the same symptoms my grandma had years ago, which turned out to be a rare disease called Dermatomyositis.

The emergency doctor said "This is the worst I've seen" assumingly referring to skin stuff. I was covered in it. She gave me medication, the same medication my grandma used, and got me scheduled with a dermatologist.

The medication she gave me worked perfectly, and quickly.

But then it was time for my dermatologist. Van der Wal, I think I don't even care, fuck that guy fr.

He didn't allow my dad to come with me inside, even though he was my legal guardian. He then proceeded to make fun of my self-harm scars, ignored what the emergency doctor noted down, ignored anything I said, didn't even look at my actual skin problem besides some passing glances, gave me a bullshit lotion, and sent me away.

When I say, fuck this guy, I'm serious. I don't care if people find him online by his name, he shouldn't be in health care.

I went back to him multiple times telling him the lotion didn't work, and every time, he gaslighted me, saying it should, and that it was the best lotion to work with my skin type and body... But if.. it worked... it would work, right? Or am I just plain stupid?

The skin disease eventually started going away sometimes, sort of. It would get better, worse, go away, come back, and still does the same little game.

The last time I went back to the guy, he once again ignored everything I said, dismissively answered my question about some other spots on my skin, and then got angry when I asked what it was. Ah, yes, sorry sir, I apologize for not having a medical degree and knowing everything by its proper medical term. It was some yeast infection on my skin? caused by dandruff??? No idea, he told me to use anti-dandruff shampoo on my head and skin, didn't work, and made my hair shitty.

Now the problem is that every time it comes back, I can't schedule an appointment with either my doctor or a new dermatologist if I wanted to. Because by the time of the appointment, it will be gone.

I went to her because I was feeling worse. I noticed that I was constantly light headed out of nowhere, or felt like I was going to faint, without actually fainting.

I got more bloodwork done, and fainted (funny story. Kind of. Not really). And had to get a video made of my heart (horrible moment).

Surprise (not really), "Nothing was wrong". She couldn't explain it.

But she did inform me I had the wrong inhaler, if I even had bronchitis, because I had never even had a lung test done. But before I could schedule one in, I was neck-deep in the stress of moving again.

Then, at the one that also helped me get my diagnosis for my knees, asked about me ever getting my lungs tested after I asked for a new prescription for my inhaler.

Lung test was scheduled, along with yet another blood test, and I got a proper diagnosis.

Asthma, yay, amazing.

So, I walked around with asthma for around 5 years, undiagnosed, with the wrong inhaler.

Great.