TW: mentions of wounds, hospitalizations, infections, fatphobia, death

So I went to the hospital again for an infection a few days ago. This is the second time in a week and a half…I guess my body wasn’t responding to the antibiotics I received the first time for an infection.

Before I start this story, I need everyone to keep in mind a few things.

1. I have Hidradenitis Suppurativa. I’ve had it since I was twelve, I am now twenty six, and it worsened after my pregnancy.
2. I got surgery to remove the diseased area on my buttocks in July 2023. It is now September 2024.
3. My HS got infinitely worse under my arms after the surgery.
4. In late January/early February 2024, I almost bled out on my bedroom floor, was sent to the hospital by ambulance, and discovered I had severe sepsis and my wounds were disintegrating.
5. After being in the hospital for three and half or so weeks, with multiple surgeries to heal the areas, I was sent home with a home health nurse, who I still see. This was around March 2024.

This brings us to a week ago, when my home health nurse couldn’t even pack the wound under my arm without an intense amount of pain that wasn’t there weeks prior. The wound got deeper and there was new drainage. With the concern of having an infection in mind, because if you have sepsis once it’s easier to get it again, I went back to the hospital almost two weeks ago now.

I got antibiotics and they didn’t work. I saw my dermatologist who is a specialist with HS and they suggested I contact the original surgeon. The original surgeon suggested I need to have test run but he couldn’t do it unless I was at the hospital. I messaged my dermatologist and while in limbo, the pain was so bad my nurse couldn’t even pack the wounds once again, and suggested I go back to the Emergency Department. So I did.

And I wait. And I wait. For hours and hours. And a CT test is run and blood is taken and it’s confirmed in my bloodwork numbers I have an active infection. The scan shows no abscesses, but it does show a pocket of air. The doctor says, I should stay overnight for IV antibiotics and so a plastic surgeon can look at me in the morning to decide if I need surgery.

Imagine my surprise, when around 9am, I can hear the SWOT (wound) nurse outside of my door, telling my nurse for that shift, all I need to do is take a hot shower and lose weight and she doesn’t have time to look at anything because she has so much to do.

Mind you I’m sharing a room, and am farthest from the door, so if I can hear her, who else can hear her? Not to mention the fact that HS is not a hygiene or a weight issue and I wasn’t even hospitalized for them to cure my incurable disease, or to provide treatment options. I have someone for that.

I was there to have a specific wound looked at because something felt *and still feels* off about it. It doesn’t feel like my typical HS wounds and the surgeon who last did a procedure under the arm was from this hospital. Another reason why I came back.

So anyway, I complain to my nurse, and the charge nurse, for the disrespect, lack of research, and the blatantly false information and will be making a formal complaint through the proper channels, because my nurse that day said it was a HIPAA violation.

But wait.

It gets worse.

My dad is looking through my chart, and we see that the surgeon, who never came by to speak with me, left a note in my chart advising the very things the SWOT nurse said: extreme weight loss surgery, hot showers multiple times a day, and antibiotics. He comments on the wounds which he didn’t see, which by the way are infinitely better than they have been in three years, saying I have an extreme case of HS. He writes in that I had a procedure I didn’t have during my last visit and take medication which I no longer take and haven’t taken in a year, and that I should see the specialist, which I already see.

Did he address the issue at had? No. Is he still going to bill me? Probably. And disrespectfully he can shove it so far up his ass he coughs it out *derogatory* because 1) he didn’t even address the reason I went there and 2) all of the things he said as treatment options are archaic ways to treat HS. He claims he’s seen many of cases of HS in his notes, to cover his own ass, but I know how MY HS appears on MY body BECAUSE I’VE LIVED WITH IT FOR OVER A DECADE. I’ve heard of every single treatment option there is to have and spoken with many doctors. I know which ones are factually misconceptions and experiencing HS solely because of weight and hygiene are two of them.

To be honest, if my weight was the reason for my HS, I would have even more flare ups right now than I had a few weeks ago even, because I’m gaining back the weight I lost from the last hospitalization when I wasn’t eating, wasn’t moving, and was depressed. And not that this matters, but on my way out, the nurse walks me to my car and brings up herself that extreme weight loss is crazy because I don’t have much to lose. Some? I’ll take it, but even then it’s not relevant in this situation.

Not to mention I have a nurse coming three times a week to ensure the areas I have stay clean and I avoid infections!

(In due time I’ll specifically make a post about fatphobia and the damage it’s done on my psyche: body dysmorphia. That’s for another day).

But wait.

It gets worse.

I chew out the hospitalist on this “HS expert.” Am offered to leave with antibiotics or stay and have the surgeon look at it. Because yeah I definitely want the surgeon who already indicted he doesn’t care to look at my wounds. I leave with my antibiotics. Am pissed off, forget about it. Then last night, I get pissed off again so bad that it’s disrupting my sleep, probably because I’m looping and have delayed processing.

I check my notes on my chart to see if the hospitalist was bullshitting me about what he was going to put in his notes. And see that the surgeon added an addendum, citing that the air pocket on the CT scan is actually not an HS wound, that it looks like a complication from the last surgery I had.

Oh really?

And that I should go back to where I had the surgery “at the University” because it is an extremely complicated case and this hospital doesn’t have the resources.

Mother. Fucker!

I had the surgery here! At the hospital you work in! By one of your colleagues! Which is why I came back here! Which you would’ve known if you even showed up and spoke to me!

And I want to note a big reason why I got sepsis was because of doctors and nurses and the surgeon like this who either 1) didn’t want to deal with me or 2) chalked it up to being my disease and my low pain tolerance, gaslighting me into thinking the same thing. Everyone around me made me believe I just wasn’t trying hard enough to get better, that I just needed to fight through the pain, that I had a low pain tolerance, that I was being dramatic.

It’s just my HS behaving weirdly. The signs of infection you can see in my heart rate, in my blood pressure, in my temperature? That’s just HS. That’s just anxiety. Do you want to live like this forever? You have to move your body. You seem depressed.

Meanwhile, my blood was literally poisoning me.

So now that I’m done ranting, I want to say, I know that people in hospitals are overworked. I know that the norm in the medical field is that you have to be close to death or close to complications to be taken seriously.

That being said, the damage done to me from being seen as a burden will be everlasting. The dehumanization from being just another patient is a cancer and it feels like people get into healthcare for the wrong reasons. The feeling and the reality of not being taken seriously and being constantly tossed around from person to person haunts me. And I’m saying this from the privileged position of having insurance and the support to be able to go place to place.

Anyway, I’m tired of taking things on the chin and moving on. So if there’s a way you think I can proceed, please let me know because I’m not letting it go.