Life with a rare auto-immune disease

I remember one evening after a long day of discomfort looking down at my feet (unsocked) and thinking to myself about how i was gonna be able to see a dermatologist about the problem, it seemed insurmountable

The next day I remember my knees hurting a lot going up and down stairs all day. I made a comment to someone at home and they simply shrugged it off as “getting old”. I knew something was wrong but it would take the next day (or maybe two) later to discover the real problem.

I woke up needing to vomit and rushed downstairs to the bathroom to relieve the urge. To my surprise the dark red colour scared and concerned me. I had had a bloody nose for nearly a week prior so i brushed it off for the first couple bouts of vomiting until the evening came and nothing had gotten better (far worse actually) and decided to call an ambulance to the nearest hospital. The records of my medication were given to the paramedics and i was off to the emergency room. I stayed there for many hours while they “re-fluided” me back to health. I had a few upchucks so i was on pure IV treatment because pills wouldn’t stay down. In emerge they had a team of doctors come in and had a look at my feet which at that time were quite splotchy but not nearly as swollen as it would end up getting. They hummed and hawed at what it could be, noticed how the dots didn’t correlate to the hair follicles and how irregular but yet patterned it all was. They asked questions about my history, if I had been outdoors a lot, sexual questions (of which i had none recently) and then decided to “wait and see”.

Of coarse I’m further along in the story now and i have more to go but suffice to say they had no explanation for the condition my condition was in. It was a totally random event, i learned after i was released from hospital under the assumption that my vomiting had ended and all was well. And while it was true that I had stopped vomiting, the feet had become so painfully terribly swollen and pocked that I needed to be re-admitted to hospital not 24 hours after being discharged.

The second admission to hospital was a rickety one. I was unable to walk down the stairs from my home and was forced to use a special chair from the ambulance meant for transporting bedridden individuals. We sat in the lobby for quite some time before making it into emerge. Lobby’s of hospitals are always interesting places and one never hopes to be in one for very long. It felt like an eternity but i had another few eternities to come before i could get to where i am now in the story

Now this part is hard to write about

TW: Needles

I was in so much pain. I cried, i sat patiently and waited and told the staff in emerge that the pain was “from the knee down” so what did they do? They did a scan of my knee and extracted puss from it. A little bit of freezing, some time, and a large needle inserted into my knee and pulled out yellow puss. I couldn’t watch it happen but I could feel it.

TW:end

From there they shoved me in a hallway of emerge and then i was given an x-ray of my chest and by the time that was over my parents came to visit, they sat with me in the hallway and two doctors came to see me. They were skin doctors and noticed right away that what i had was called HSP, a rare auto immune disease that typically afflicts children but can affect adults and is more severe in such cases. They did a skin biopsy “or they took some of my top coat off”, and sent it to a lab to be tested to prove their analysis.

From there i spent a week in a shared room with an old man on oxygen support who lived in a town far from the hospital. He really wanted to get back to that town, even tho he would still need to be hospitalized there too. The noise of his various machines alone was deafening.

During this week i had plenty of visits from dad who brought a blank pad of paper and a pen which became one of the highlights of my stay, just being able to write a little bit each day about how i was going was so helpful, and i had fun with writing fun bits for potential comedy sketches that’ll probably never have any life to them but were still fun to come up with.

As for now, i have various large blisters on my skin in the lower half of my body mainly on my feet that are severely painful. My joints are also very sore. Writing this has been a task in itself as typing requires dexterous fingers that I dont have.

I wish I could get more detailed with my experience but i must stop now.

Thanks for reading

-josh

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