It has been a nightmare since I got Monkeypox.
I was under the impression that the number of cases in the city was small when New York Pride kicked off in June. The city only had the capacity to process ten tests a day at that time.
The Monkeypox was declared a global health emergency by the World Health Organization.
I had sex with a lot of men over the weekend. I began to feel fatigued on 1 July.
I took a Covid self test. I began to suspect monkeypox. I was waiting for the rash to start and sent a text to a friend.
I live in Brooklyn and work in philanthropy. Sexual and reproductive health and rights have been my focus for the past decade, so I followed the outbreak from the beginning. I tried to get a vaccine when New York launched a drive. I was not the only one who tried to get an appointment.
The rash was painful on my anus and rectum after two days. It felt like it was stinging. At this point, I wasn't afraid. I was told that it would be mild and that I was a healthy person. I didn't know how bad it would be.
I had a tele-health visit with my doctor and she agreed that I should be tested. I went to see a doctor. I had all the symptoms of monkeypox and nobody asked if I should get a test. I wanted a full panel of STIs.
You need a positive test result before you can use the drug that is being used to treat monkeypox. European regulators have approved TPOXX as an effective monkeypox treatment, but the FDA has only approved it to treat the disease. The CDC allows for its compassionate use during monkeypox epidemics.
The rash began to spread after I went home. I developed blisters that looked like mosquito bites before eventually popping and leaving a scar. My penis was the only part of my body that didn't have disease.
I got my results the next day. There is no word on monkeypox at this time. I had a throbbing head, arthritis pain in my fingers and shoulders, and a weird pain in my shin bone that made me unable to stand up. I would wake up in the middle of the night with both pain and itching, just sitting up and scratching myself. I felt that the situation was unfair. I had to cobble together a care plan on my own.
My anorectal wounds became open wounds. I felt like I had three fissures next to each other. When I went to the bathroom, I screamed out loud. It was very painful to keep the area clean. Each time, it took two hours.
I got a call from urgent care four days after my test, saying I had tested positive for monkeypox. They didn't give me anything else besides that. I called around to find out how I could get access to the drugs. I was aware that the CDC had put out guidance about who should be considered for treatment, and that included people with anorectal and throat problems.
The person referred me in circles. The urgent care person told me to contact the department of health. Your doctor has to request treatment for you according to the department of health. They were like, "We can bring the case to the department of health, but just so you know, they deny most of our requests, so don't get your hopes up!"
My throat began to swell up. My tonsils were swollen. Someone in my doctor's office told me that I should go to the ER. I was given a round of antibiotics by the ER. They told me they wouldn't give them to me because they only gave it to people who were immunocompromised. I said that was not the CDC treatment guidelines. They wouldn't have it and I was discharged at 2 am. I was really sad.
The clinic at Columbia University's Irving Medical Center called me the next night. The DoH asked them to take on my case. Apparently, I was one of the lucky ones to be invited for treatment. The drug hasn't been extensively tested in humans so there's a significant informed consent and intake process. After about an hour at the clinic, I walked out with a supply of TPOXX. I was so happy.
A high fat diet requires you to take three pills per day. The best thing about this treatment is the amount of bacon and whipped cream I eat. I am now down to just three tiny little scars. I haven't been able to go to the bathroom in a while.
I'm not in contact with anyone. I can't say how bad my apartment is. I have the resources to order food and medicine and have it delivered to my door, which is a pretty good thing. I have laundry in my apartment. I know people who struggle with isolation because they don't have the same situation I have.
On the day after I started the treatment, 13 July, I got a call from a contact tracer from the department of health who said I might have been exposed to monkeypox. She inquired about my symptoms after I told her I had monkeypox. She was on the phone for about half an hour. She told him to get well and hung up. She never asked me what contacts I had.
The whole thing feels like a huge failure that should have been avoided. If someone like me, who has worked in sexual health for a long time, had a hard time navigating care, I can't imagine anyone else doing it. Several people are sitting at home in pain because they are not receiving the support they need.
If we don't pass that point already, this is going to be another endemic disease for gay men. We'll be stuck with it forever.
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