A year ago almost to this date I had a shocking sensation in my hand. I would suddenly be in route to receiving my Psoriatic Arthritis diagnosis. As the pandemic came barreling down on all of us, I wrote about being Undiagnosed and trying to change that via new remote doctor’s visits.

You can read that article here.

But what has life looked like since?

It’s been a year since we began closely monitoring the pandemic. And by me, I mean those of us who are disabled, those of us with complex medical conditions. Advocates who had been fighting for years against congregate care facilities. We knew who would be hit the hardest, and we also had many of the answers the world would be searching for. And we knew that we were most at risk and would have to sacrifice much of our own care for the good of everyone.

We’ve opted out of non-essential appointments. We’ve rescheduled or postponed surgeries. We’ve waited to get dental care. We’ve missed follow ups and bloodwork and tests and scans. We’ve waited on reporting worsening symptoms or disease progression because we’re the most at risk for contracting and dying from covid. It’ll take years, maybe decades for some of us to get to where we were this time last year in managing our conditions.

And unfortunately, here I am, seeking care that cannot wait, compounded by the hellscape we now call reality.

One of the perks that came out of virtual doctor’s appointments was being able to see specialists without having to physically get on a plane to do so. I had made the decision after being rejected from the Mayo Clinic’s Neurology program that I would maintain care with my South Carolina based Neurologist who had been managing my care since high school. This made sense to me, as at the time there were no new groundbreaking treatments and most additional things I wanted to try for migraine were holistic and didn’t require a prescription.

I also figured by the time I moved and got settled I’d be able to investigate other headache clinics like those in Chicago and Michigan. I could try out those places and still have my SC Neurologist as a bit of a home base, especially for the purposes of disability reviews. I don’t really understand how disability reviews work, but I believe maintaining a relationship with a doctor who can see the entire scope of care I’m receiving and understand (and care about) my quality of life as well is important for this process.

I intended to fly back every year for an in office visit to maintain my patient status. With the pandemic, flying was no longer safe, but insurance began to work in my favor. Telehealth options allowed doctors to see their patients virtually even if they were in a different state. Surely this was an exception that was made, but it made a world of difference. I was able to see my Neurologist virtually twice.

The telehealth rules have since changed. Doctors are no longer able to provide telehealth services to patients across state lines. Meaning for patients like me, continued care would require getting on a plane.

I didn’t learn of this change because I read some article on it and was outraged, but rather I was eating lunch, pain medicine slowly kicking in waiting for a call from my Neurologist for a teleheatlh visit. It wasn’t a regular follow up, but we were running into problems refilling my prescription, so I thought it would be best to stop playing phone tag and correcting the numerous mistakes and just talk to my doctor directly. The nurse called about an hour early to tell me she had to cancel the appointment. She began explaining the new rules and how my only option was to attend the appointment in person.

I could feel the tears beginning to well up, my voice became stifled as I choked back the pain and grief that was taking over. I was left not knowing if my medication refill would be able to be handled or processed, but knowing without a doubt I was no longer under the care of my long-term Neurologist. It was a kind of panic and mental exhaustion that no one should ever have to feel. I tried to finish my lunch, but found myself pacing, trying not to explode into tears exacerbating my migraine pain. I couldn’t think and was completely wrapped in fear.

Would I have to ration my medications?

Where would my paused disability review go if my Neurologist legally cannot speak to me unless I am in the office? Could he still fill out paperwork? Or would it end up in limbo? Worse, would it end up with a state doctor attempting to review files for a total stranger?

Getting on a plane likely won’t be a feasible option until much later this year. Could I theoretically go without an acting Neurologist for that long?

I tried to run through the option I did have. My primary care doctor here is wonderful and could likely take over prescribing my daily preventative, but he is not equipped to be the lead physician for managing my migraines. I live in a rural area, and although we have two hospital systems I can’t just go see any Neurologist. Most are not equipped to deal with complex patients, especially those on disability. And this is not a dig on them, headache medicine is simply not their specialty, therefore to continue care with a doctor who only has limited experience puts me in danger.

That sounds extreme, but I’ll elaborate.

If you’re a doctor who sees a few patients with headache and migraine and they often respond to one of the initial medications and successfully manage the condition, your experience pool is lower and biased. Especially in an area where more complex cases would be sent off to the Mayo Clinic rather than handled locally. If a doctor encounters my file, sees that I am disabled, and evaluates my current care plan it’s a pretty clear analysis that my care plan isn’t working all too well. New doctors often believe they can fix you, and tend to not care a whole lot for patient input. So the likelihood of a new Neurologist with limited headache knowledge pulling me off my care plan entirely and putting me on a completely new one is pretty high. It’s actually almost a standard. I know this because I’ve already been through it.

In 2018, I was ripped off my care plan, all of my medications were stripped away, and the new medications caused unbearable side effects. The doctor didn’t care, was forceful around Botox and when I requested literally anything else I was referred elsewhere. This forced me into an unsupported period of time, with limited education on medication, where my MOH began and ended with me severely disabled.

The reality is, a regular Neurologist doesn’t make sense for me. Not when I’ve already been through all the treatments, all the preliminary tests for out-there surgeries, and tried most of the holistic approaches that have been available. My improvement at this point is mostly hinged on new science emerging while I coordinate with doctors to work on areas I can be more comfortable, not pain free.

I had previously seen one of the 570 Headache Specialists available in the country, locally in Milwaukee who broke my MOH cycle, worked diligently to get me approved for new groundbreaking CGRP therapies, and eventually would help guide me on my disability process. On a whim, I reached out to their office to see if he would be able to resume my care and what my options were.

Fortunately, I’m still considered an existing patient and can easily re-establish care. Not so fortunately, he’s in the process of moving offices so I’m on a waitlist to be called once he’s finished that process. Although this is the best case scenario, he is still 3 hours away meaning I’ll have to coordinate 3-4 day trips for any in office visits. This is additionally complicated by the pandemic, as safe traveling is compromised. Bathroom stops are risky at best. Ideal sleeping arrangements would allow for our own kitchen/separate sleeping for me and a parent meaning an AirBnB is most cost effective, but hotels are likely better with enhanced cleaning measures.

My Neurologist was able to renew my prescription for a year, so I have time to work through this, but it doesn’t change the immense pressure to re-establish care during a time where it isn’t all that safe to leave your home.

And it doesn’t begin and end with my migraine management.

The Rheumatologist who I began seeing last summer, left the practice suddenly in November. I’ve scraped by with the assistance of my primary care doctor and a pain specialist, but the reality is I have to find a new Rheumatologist as well.

And perhaps both cases highlights why this is so hard to do during a pandemic.

I’m very good at being a patient. I’m very good at communicating with my doctors and laying the groundwork to have a successful relationship. For me, everything goes smoother when I’m a trusted voice in my care. Sometimes you luck out and find a doctor that does trust you to communicate what is going on with your body, but sometimes you don’t.

Ideally, if a care plan is working and we just need someone new to take over and help with education – as I do with whomever manages my arthritis – the best option is to find a doctor we mesh with. Take the time to do some preliminary interviews. See who has experience working with people my age. Who has prescribed the medications I’m on, what results have they seen, and so on. This is simply not safe to do during a pandemic when we’re trying to limit contact.

Although I know masks are important, seeing a doctors face – them seeing yours – also goes a long way in establishing a strong foundation. Every 15 or 20 minutes a doctor is forced to see a new person, read a new chart, and find a new solution and by removing our faces and expressions we’re depersonalizing the whole experience further minimizing ourselves to the numbers and letters on our charts.

Right now, I’m thankful to see my primary care doctor regularly via telehealth. He gets to see my face. He can see the emotions and I feel seen and a part of my appointments. For now, he is all I’ve got for every corner of my care, but the journey to continuing care seems daunting.

I don’t feel like my doctors will see me, or care the same way. And I don’t know when we’ll reach a point where that changes. And as telehealth continues to be limited and removed altogether, continuing care will only continue to be harder for those of us that need it the most.

A.