Cruel (Cruel) Summer

“Summer Sunshine” by **Mary**

I’m usually on edge Memorial Day weekend. That’s when I fell ill in 2004; ever since it has felt snakebit. Most years that’s just my anxiety. In 2021, the last moment that everything was relatively normal was the evening of Memorial Day.

I was supposed to have my semi-annual appointment with Dr. Cheney on June 2nd at 2:30.

I sent his assistant a message on May 31st about a medication shortage, and that person replied that Dr. Cheney was out of the office for the coming week. That was surprising, given my scheduled appointment, so I asked about that, and his assistant replied that the appointment would not be taking place and said we could reschedule the next week, when he was back.

A change like that was unlike Dr. Cheney, and it made me uneasy.

That following Monday, the 7th, I was about to call to reschedule when an announcement came in from his assistant that he’d suffered a decline in the few days previous, then a hip fracture and a further decline. No further patient contact would be possible, we were told.

I had, for courtesy’s sake, held off on requesting a new script the previous week, figuring I’d save it for the appointment. 

Unfortunately, the script was a controlled substance, one that of my doctors, only Dr. Cheney could write. And while I had some backlog of the med, suddenly losing access to Dr. Cheney had long been my ultimate nightmare. I had been telling myself for years, when my brain threw this into the foreground as an anxiety scenario, that it wasn’t happening right now and not to freak out about it.

Now it was happening, and I was justifiably freaking out about it.

I knew I had to choose a new ME specialist; I’m just too sick and too complicated to leave my care to medical amateurs. Of course there aren’t many, so I set up a spreadsheet with names and contact information and began making calls. What I hoped for most, given the pandemic, was to find someone who could see me virtually.

In the midst of all this, we got a letter from our local practice the same week, saying my GP was leaving.

I live in Pennsylvania, which isn’t yet participating in the Interstate Medical Licensure Compact that makes virtual appointments more easily practicable. But at the point I began contacting people, the pandemic interstate telemedicine waiver was still in force, so I thought I might have a chance of having an initial virtual appointment rather than having to travel.

Making the calls to every clinic was a significant undertaking, given my energy level. I spent a couple weeks doing so and filling out reams of forms. I set up virtual and in-person appointments with four practitioners: Virtual ones with a practitioner in Pennsylvania and in New York, and in-person ones with a practitioner in New York and in North Carolina. I hated the idea of traveling, but I told myself that I’d lived in New York and we had gone to North Carolina a bunch of times to see Cheney, so I had a sense of what both would require.

I tried assiduously to make an appointment with a well-known clinic in Florida, but was not able to. They seemed to be having staff upheaval at the time I attempted to make one; one person said I could be seen virtually and sent me the forms, scores of pages to fill out; I returned them promptly but struggled to get someone on the phone to schedule an appointment, holding for literal hours on multiple occasions, eventually driving myself into payback because of the inescapable hold music and message.

When I eventually reached a staffer, I learned that the person I’d been in contact with was no longer employed and was told I had to be seen in person. I don’t know whether this was the telemedicine waiver expiring just at the point I was ready to schedule or whether I’d received bad information. But given that it took two days to drive the six hours to North Carolina because three hours was all I could tolerate in the car, Florida was an impossibility.

The virtual appointment with the person in Pennsylvania came first. I had worried in advance, learning what I could about this practice from the internet, that they might not specialize in ME in the way I needed, but they were the only at all likely specialist in Pennsylvania and I hoped my skepticism would prove misplaced. Unfortunately, my impression was correct; I had my virtual appointment and in it it became clear that the practice focused on hormone and thyroid treatments, which I didn’t expect would be fruitful for me.

Then I met virtually with Dr. Susan Levine, who is based in New York City. I liked her immediately; she was easy to talk to and right off the bat had a slate of tests she thought might turn up useful findings. I postponed my other appointments to get started on the those tests, thinking that if she continued to prove a good fit, I might stay with her as my new specialist.

More to follow on the tests, the results, and the other significant events that made this summer so difficult.

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3 Responses to Cruel (Cruel) Summer

  1. Inge says:

    Dear Jocelyn,
    I am sorry to hear from you when under such difficulty. I hope that by now things have normalized themselves somewhat. I did hear of Dr Cheneys death, can’t quite remember when any more. Just got his last emails on how to deal with Covid which was a big help for me and took away some of the fear we all had at the beginning. If anybody gets to heaven, it is Dr Cheney!

    I completely understand your predicament of a prescribing trusted Doctor to die on you. It happened to me to some 12 years ago and I had to find somebody within 2 months to prescribe benzos + the rest of my sleep medications, which I eventually did. At the same time my husband died quite suddenly of colon cancer, which some say is a quiet killer. It only took 4 weeks from diagnosis to death. All that needed double the meds to be able to sleep, and I am still now trying to reduce to the baseline I was before all that. I hope it won’t take you that long!
    The lesson I learned from that is to have at least 1 year medication in reserve and also find other sources on the net. For that, Phoenix rising was a great help with their list of reliable internet pharmacies…..

    I hope that Dr Levine is taking good care of you. I found her understanding and efficient in the few videos I saw of her. Bereavement and lack of sleep is the worst combination a PWME can encounter, so all the very very best to you to regain your equilibrium again.

    • Jocelyn says:

      Thanks very much, Inge. Agreed that Dr. Cheney was a great help; he saved my life more than once. Goodness, I’m sorry to hear of the circumstances of 12 years ago; that’s terrible. I plan to write an entry about working with Dr. Levine; I asked her permission and she joked, “As long as you say nice things.” I have those to say for sure.

  2. My falling ill happened July 4th 2018. I went on a late night walk, went home and went to bed and by the time I woke up my life was changed

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