Getting Heard
My rheumatologist appointment was unlike any other doctor’s appointment I have ever had (up until my recent one in Germany). We spent an hour just talking about my list of symptoms, looking at all my lab results, and discussing what I thought my greatest problems were. For the first time during this medical journey, I truly felt heard – and got a diagnosis.
Well sort of. I have a post-viral illness or autoimmune reaction. It is relatively new research - the past 50 years, but researchers have found that people with specific genetic make-ups respond differently to different viruses. So if Person A gets the flu, they may have a slight fever, chills, and vomiting that last a week. Person B could have the same initial symptoms; however, the virus triggers an autoimmune reaction and neurological reset. Systems controlled by the nervous system (almost everything) will be shut down and essentially restarted. The virus for Person B is basically the human version of hard restarting a computer.
Viruses can also trigger a syndrome called Postural Orthostatic Tachycardia Syndrome or POTS – which part of what I have. Supposedly this hard reset should only take around a year, although there are reports of it being a lifelong post-viral condition. Currently, I am doing much better than last year - but I still have difficulty if I don’t stick to a strict plan daily: 9-10 hours of sleep, around 3 liters of water, high salt, 400 mg magnesium glycinate, little to no alcohol, limited caffeine, and a short walk daily. For some people that may be limiting, but it gives me the freedom to work (even in restaurants again, as long as I am careful), go out with friends, and… basically everything I thought I had lost.
I am so conscious that it could all come back again, in full force. There is very little research in what I probably have, and I am still searching for more definitive answers (looking at you MCAD and volatile blood sugar)– but I am so thankful for every day. Even on the days have an allergic reaction to my carpet.
Thank you for taking us along on this journey.
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