S4E12 - Getting Fresh with Eric & James
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On this special Getting Fresh episode of Fruitbowl editor Ryan Weadon takes the reins as host and introduces a conversation Dave had with Eric, a medical assistant and Monkeypox survivor who lives in Portland with his partner Dave. Eric describes what it’s been like dealing with the virus and the challenges he’s had emotionally. Click HERE to visit the webpage for this episode that features Eric’s written answers to Dave’s pre-interview questions in case you wanted more information about his specific treatments and care.
After the Monkeypox conversation, we are proud to present a listener submission from James who describes a summary of his journey as a bisexual and the arrangement he has with his current wife to finally explore his queer identity without shame.
Thanks to both Eric and James for trusting Fruitbowl with their stories.
1. Give us an idea of where you’re at right now in your recovery. How’re you feeling?
I was diagnosed with presumptive hMPXV on 8/29 pending test results. Today is day 13. At this point in the recovery process I am still experiencing a fair amount of pain with the lesions on the bottom of my feet, particularly the left heel along with a great deal of frustration. Most other lesions have healed or are still in the process of healing. I am also having chronic fatigue and intermittent body aches. In addition, I have conjunctivitis and ocular rosacea. According to my eye specialists and other care team, they believe that the conjunctivitis is associated with the hMPXV virus. I have had rosacea for many years now. It tends to be opportunistic, meaning I usually have flare-ups (some severe) when stressed or with an illness. In this case I seem to have a flare-up that attacked my left eye. However, I have experienced marked blurry vision in both eyes since the onset of my hMPXV diagnosis.
2. What was the first sign of infection? How has the illness progressed?
My partner was diagnosed a few days prior. And the first sign of infection for me was delayed by a few days. It started with skin abnormalities. I noticed tiny bumps on my hands on 8/28 and I knew that hMPXV infection was highly probable. Overnight the lesions progressed fairly rapidly and it was clear that I was infected with the virus. The bumps got bigger and looked like blisters and were very painful. The worst of these were on my hands and feet. Although I did have a few on my chest and various random places on my body like my buttocks and perineum.
Interestingly, my partner’s first symptom was high fever and throat pain. He say urgent care because we both suspected strep throat, which was negative. That first night we slept in the same bed as we normally do. But the night after we immediately started to take isolation measures due to the appearance of lesions on his body. We didn’t kiss, touch, or have sex. I slept not the sofa. We cleaned shared surfaces. We didn’t share food or utensils. He even went as far as to wear a mask and we tried to stay away from one another by occupying separate rooms.
3. I’ve read that it often takes a while to get an official diagnosis. Did a doctor formally diagnose you? Was the diagnosis quick?
In my case, and my partner’s, we both were diagnosed with presumptive hMPXV by our local health department. The results came back fairly quickly, 3-4 days. However our hMPXV tests came back negative. His first and then mine. I was also sent to the Emergency Department at OHSU for the initial left eye issue out of an abundance of caution particularly because they have eye specialists available. They also did a skin culture at that time which also came back negative. I was seen at Multnomah County Health Department by the OHA infectious disease specialist who concurred that I had hMPXV, he then ordered another set of skin cultures that were sent to the state lab. Those results also were negative. Although my care team all concurred that those results were a false negative for unknown reasons.
4. What kinds of meds or treatments are you taking? Any holistic or non-pharma healing or palliative care?
I consented to take an experimental treatment of sorts. Tecovirimat, also known as TPOXX is FDA approved to treat smallpox in adults and children. It is not however, approved for other poxviruses like hMPXV. Thus, this drug is considered investigational and is being offered under the expanded access program (also known as compassionate use). I started taking this medication on 8/29. I have taken as prescribed, 600mg or 3 capsules twice daily. There are very specific instructions on how to take this medication. For instance, instructions say to eat a full, fatty meal 30 minutes before taking. According to the instructions the meal should contain 600 calories and 25 grams of fat. You can also open the capsules and mix with food. For me that was a hard no. I found it easiest to open the capsules and mix into a glass of whole milk and then eat said fatty meal. During the onset of taking the meds I didn’t notice any serious side effects. However, I discontinued the medication on 9/9 at my own will due to concerns about serious reactions that can occur with the medication including blurry vision and loss of vision. I have been experiencing blurry vision since the beginning of the hMPXV infection which happens also coincide with the start of the TPOXX medication. So, I have no idea if the TPOXX medication had anything to do with it. I also don’t know that the medication has been helpful.
As far as palliative care I was also prescribed a medication called Gabapentin, sold under the brand name Neurontin. It helps to control pain associated with hMPXV particularly because the pain associated with hMPXV is nerve pain. There is no playbook for hMPXV but most physicians are avoiding prescribing opioids. Personally, as a person who has worked in addiction medicine I believe that is a good thing.
5. What has your experience been like quarantining?
The quarantining has been hell, for myself and my partner. Although he has the ability to work from home, which he has been doing. I on the other hand work in the medical field and cannot work from home. I believe that staying occupied with something as best we can is helpful. My anxiety has been pretty high to be sure. My partner and I express our frustration and anxiety in different ways. I am currently in school part-time and have managed to be able to keep up with my assignments and took my final exam yesterday. I have a week off before my next full-time term begins on the 19th. I was really hoping to be enjoying some time off and doing something fun. However, my lockdown continues and I have the added stress of potentially not starting with my cohort on the 19th.
6. What would you most like listeners to hear about your perspective as a Monkeypox survivor?
First and foremost, GET VACCINATED! Keep in mind that maximum protection is only 85% two weeks after your second vax (source: Jynneos) I would also say be extremely careful. Do daily self examinations of your body. Look for small bumps or lesions that look different than what you may have had in the past (you can google what the lesions look like) however most of those are pretty extreme from what I have seen. The first bumps on my hand seemed very noticeable but benign. Without my partner having a presumptive diagnosis of hMPXV I don’t believe I would have thought of it as something potentially infectious.
Also, I have said this many times but it’s worth ending with this message: support your friends with hMPXV. The isolation, the lack of ability to work, loss of income, the stigma, the unknowns all make this a very hellish disease. Not to mention it can be disfiguring or scarring. I think that I will most certainly have physical scars on my body. That can be a huge blow to someone’s self esteem. But the emotional scars are just as important. Check in with your friends experiencing this, OFTEN. Make sure that they have the things they need but also your love and support.
Learn more about the recent Monkeypox outbreak via the CDC website.
Eric’s photo by David Frazier.
Thanks to our post-production sponsor, the new SPACES app, powered by Hornet! Learn more about it HERE.
This episode was edited and mixed by Ryan Weadon. Rebecca M. Davis is the season 4 voice of Fruitbowl. Dave Quantic is the creator Fruitbowl.
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