From the trail where I walk, I can see and hear the Missouri River. Sometimes I veer off the path, moving over uneven grass before following a rocky walkway under a rusty old toll bridge to the river’s edge. I love strolling by the river, especially in the winter when chunks of ice sail merrily south, the sight so peaceful I try to imagine I’m there when I have MRIs. We’ve had a lot of rain lately, and the park leading to the river has closed because the Mighty Mo has spilled over the banks, flooding the park next to it and the camping ground next to that. Just yesterday, RVs and tents dotted the area; now, much of that ground is under water.
Living with MS is like this. I’m still caught off guard by how quickly it takes over parts of my life that were clear only the day before, now suddenly submerged, perhaps never to fully resurface. Today certainly feels this way because my insurance company denied coverage for the treatment I want. I don’t know why yet as the online portal simply says “denied,” so I have to wait for a letter to land in my mailbox to learn more. I know my neurologist’s office will appeal and do what it can to get the drug company to cover the cost if necessary, but seeing the denial on the computer screen made my eyes well up with tears, my frustration and helplessness causing a lump in my throat.
I’m getting ahead of myself, though. I had my appointment last Friday to go over test results and talk about treatment. The nurse practitioner seeing me while my doctor is on maternity leave answered all of my questions, walked me through my test results, and examined me thoroughly. After an hour with her, I met with Nurse Angela. It was lovely to meet her in person after she had been so helpful over the phone, and we went over the next steps before I can begin treatment. I’ll write about my treatment choice in another posting, but it requires vaccines for pneumonia and shingles, Prevnar 13 and Shingrix. I was able to get Prevnar 13 after my appointment at the hospital, where I also had to have blood drawn for yet more labs and complete a chest X-ray, but the hospital and every other pharmacy I contacted in and around town was completely out of Shingrix with no expected backorder date. Without Shingrix, I cannot not begin treatment. Even if I had been able to get it that day, treatment would be delayed by 4-6 weeks.
I don’t give up easily, and my willingness to dig in my heels has served me well in many situations past. I called dozens of pharmacies trying to track Shingrix down, even a grocery store almost an hour away because my PCP heard it might be in stock there. No luck. On the way home from a friend’s house last week, though, I passed a pharmacy whose sign proclaimed it had the new shingles shot. Although I was sure they’d just left up the same sign since January when the vaccine came out, I called the next day. And the pharmacist said they did indeed have it! After getting the nurse practitioner to send over a prescription because I’m not 50 years old yet, I finally got the vaccine yesterday. My insurance denied coverage for it, so I had to pay $225 despite having passed my out-of-pocket maximum several weeks ago, a decision I plan to appeal. Shingrix is a painful shot, and I can barely move my arm today, but I celebrated the small victory.
I keep imagining what I would be doing this summer if not for MS. I certainly wouldn’t be chasing down vaccines, spending hours at the doctor, scheduling a mammogram though I’m not quite 40. There are so many ways I could better spend my time. What unrealized loveliness would those freed up hours hold? How much more fulfilling would this alternative summer without MS be, even if my time were squandered on silly things, the things that occupied me before all of this? I mourn the possibilities.
And yet, just a few weeks ago, I could not have completed the walk I did today, would have missed out on witnessing the sad but beautiful devastation that flooding brings with it. Soon, the Missouri River will crest, causing more destruction. We’ve recovered from it before. We’ll recover from it again.
I hope the same for myself.