It’s the things you don’t realize until it happens that truly suck. I suppose anything “bad” is like that. You never realize the sheer amount of bad that it involves. But now the questions are endless.
Was it triggered by Covid? Is it long lasting effects of Covid? Were those issues with my eyes I started noticing a year ago part of it or just exasperated by it? Did I do something to deserve this? Will I ever get better?
These questions rotate in my head like a snake eating its own tail. The longer the questions circle the more questions get added.
Am I making it up? Are these really just bug bites? Am I somehow mentally causing this? Why does it affect so many different aspects? Dear god, is it Long Covid?
And yet the more I ask these questions of myself and of doctors the more I’m convinced it’s nothing. My legs from the knees down are covered in new, healing, and old rashes but my brain still tries to convince me I’m making it up somehow.
It started slowly. Three small coin shaped rashes on my thumb. So itchy but manageable. The apartment is old so it’s probably just allergies. The whole place was just cleaned. Chemicals could cause rashes too. It’s fine. It’s nothing. It’s stupid.
Two weeks later another one appears. Still nothing too worrying. Probably just came into contact with whatever it was again. Do another thorough apartment cleaning just in case. If it happens again, then I’ll see a doctor.
The third instance occurs almost a month later. The rash is a distant memory…almost. But third times the charm so I make an appointment and think, ah, the doctor will say it’s allergies that need a stronger drug and all will be fine. Well, until it takes a month to even get in with them.
In the month of waiting it gets noticeably worse. Rashes start appearing in places other than the hands. Now there’s two on the ankle and a week or so later two more on your hip. A few days later a third appears on the hip. Hands getting contact allergies makes sense. Even the ankle could be a bit easy to touch with something foreign. But the hip? Not so much.
So the doctor appointment happens, but it’s a 15 minute telehealth call that the doctor arrives 15 minutes late for. The doctor talks so fast you barely understand what she says. She doesn’t seem concerned and says here’s a referral to a dermatologist. Barely even listening to the other symptoms and clearly wanting to make up time with the appointment. Leaving the call dissatisfied, the only thing to do is wait for the dermatology department to call and schedule.
It’s going to take a month to see the dermatologist.
At this point, it’s been 2 months since the initial rash showed up, anxiety is setting in as other symptoms start appearing. In the month of waiting for the dermatologist, 18 new instances of the rash occur. That’s not counting individual rash spots, that’s just the number of times new rashes occurred in a new place. The anxiety deepens.
and deepens.
and deepens.
Four days before the appointment, the dermatologist cancels and blames it on unanswered phone calls. Like canceling the appointment was going to do anything but incite anger. I’m not proud but in that moment I was a Karen. I reviewed them everywhere and filed a complaint. It got me a next day appointment at least.
Unfortunately, I don’t have any super active rash spots except on the foot. They don’t like biopsying the foot. They take a sample from a mostly healed spot on my back. Will it be enough? Another question for the rotation.
The results point toward autoimmune so now it’s time to see a rheumatologist. Great. This time when they call to make the appointment the earliest available is TWO MONTHS AWAY. These issues have already gone on for way too long. I make the appointment. I set reminders to call them consistently to see if anything opens up.
A week or so later, Good news! You have an appointment in a week. Oh wait, they call back 4 hours later and say never mind the doctor doesn’t think it’s enough time and now the earliest available appointment is THREE MONTHS AWAY. Again, I’m not proud but I told them to go fuck themselves.
It’s been 3 and a half months of rashes at this point. But now on top of the rashes, I’m getting headaches that last days. There’s pain in my wrists, elbows, ankles, forearms, rib cage, lower back and knees. My brain fogs over so badly I can barely keep a thought steady in my mind. I try to remember things but it’s like grasping at a mirage. I think it’s there but my brain says haha nope. Eating gets hard. Eating has never been hard for me. The worst is my eyes refuse to focus. They feel heavy and gummy.
No, I lied the worst is the itching. The constant. Itching. Itching so intense I want to scratch until my skin bleeds. I want to peel off my skin and never have to deal with it again. I want to throw myself off a roof if only it will get the itching to stop.
Knowing I won’t live to see a rheumatologist if I don’t see one soon, I go to one outside my medical system and they take my insurance. I get in within a week. They do a bunch of testing. Come back in two weeks.
Month 4 of the rashes is the worst yet. Some weekends bring as many as 14 rashes. Three to four new ones appear a day. The brain fog gets worse. Now instead of moments or a day here and there, it’s 5 days of haze. My body pain increases. My headaches get more intense. I say this in past tense but…
It’s month 5 now. I still have no answers. Rheumatology testing came back negative for anything they deal with. It’s back to square one. I got 21 rashes last weekend. 6 or 7 in the last two days. I spent yesterday in a brain fog and today I can feel myself hovering on the line knowing it’s going to be too much and tomorrow I’ll be back to brain fog.
I just want answers. I want to feel listened to. I want doctors to stop shuffling me around like I’m a deck of cards. I want to stop this intense Itch. I want energy and memory and fun. I want to live. But the longer it takes to figure out what’s going on, the more my will lowers. Will this ever end?
