One of the three Neurologists who treated me over the years had experience with quite a few cases of Burning Mouth System (BMS) and put mine in his “top five” of well documented and intractable cases. This is not an award I was excited to receive!
He said that like many chronic pain syndromes, “You know it is not fatal and that other people live for decades with it, but what wears you down is the incredible persistence.”
I thought he captured something very relevant. The day after day after day of chronic pain that has its own repeating pattern of escalation and only completely relents when you sleep. It is a wonder that we aren’t all sleep-aid junkies. I have noticed during the pandemic when I have so few things that get me out of the house early in the morning, I am sleeping 8-9 hours a night. It is lovely.
Someone asked me recently if I thought BMS would make COVID-19 worse if I got it.
Intriguing. I hadn’t considered that, but I asked and the answer was that BMS was not considered a co-morbidity and should not affect anything other than comfort. The doctor I spoke with paused, and then said, “However, you should be careful to let the medical professionals know if you are taking any medications that should not be stopped abruptly.”
The meds we often take for BMS definitely fall into that category. So, in a situation where you may not be admitting yourself to the hospital for treatment and you certainly won’t have a family member or anyone else there to advocate for you, what should you do?
I have a labeled and organized folder that has copies of my Directives to Physicians, my Power of Attorney to my husband, and supplemental directives that state if I am dying, not to take extraordinary measures, but keep me pain-free and let me go. These forms are secured in the folder because I don’t want any to fall out and be lost in a chaotic time.
Now I am adding a list of my current medications with the “Don’t Stop Abruptly” meds in bright red block letters. I will also add a list of my doctors with their contact information and a copy of my insurance card so I will not have to try to look any of that up if I am ill enough to go to the Emergency Room. If I am allowed to bring my meds with me, I will, because they cost an arm and a leg at hospital prices.
Who would have thought that we would have to plan this way?
But that is what a pandemic does. It tosses all of the dice and nothing is the same. Stay safe, stay home if you can, and please mask up for all of us when you do go out.