Being "quarantined" and chronically ill brings a whole new level to WTF. Sure, I am still your typical mom trying to homeschool my kids while also trying to keep my business alive. Between all that though, I'm living with two rare chronic illnesses and in the past few weeks, have started to experience god awful new issues. Not a good time for mysterious symptoms to pop up and linger for weeks.
Let me rewind... just a few weeks ago, before the stay at home orders were issued and our world as we know it got flipped upside down, my husband and I took a trip to Jackson Hole. Worst trip of my entire life. I ended up with acute mountain sickness, or so I think, causing everything from nausea and headaches to irregular heartbeats. It was so bad, in fact, that we had to cancel our snowmobiling trip, took an early flight home, and left tons of organic groceries behind without even thinking twice. I thought things would improve when we got home but that was just the beginning. I had three emergency room visits and one 911 call in an eight-day period. My heart was so bad that it felt like being on a continuous roller coaster with HUGE drops and that god-awful sinking feeling. I had nausea, chests pains, upper body pains that felt more like I was beat up by Mike Tyson than the normal aches. I had near fainting episodes and even lost consciousness twice. The irregular heartbeats would wake me from a dead sleep and keep me up for hours. When EKG's and a heart echocardiogram came back fine, I tried to talk myself into it being anxiety. Maybe I was being a hypochondriac? Maybe it'll go away just as quickly as it started? Each day I was reminded that it wasn't going away and it was SEVERELY impacting my quality of life.
"You know your body and if it feels off, don't let ANYONE make you feel like your symptoms aren't valid."
This whole experience has brought me back to the 2 years prior to my diagnosis of Myasthenia Gravis where I had awful symptoms but continued to be blown off by doctors, led to believe that it was nothing and I was fine. That's a story for a different day but I do want to say that you know your body and if it feels off, don't let ANYONE make you feel like your symptoms aren't valid. Anyways, back to the story, I was able to get in to see my cardiologist almost immediately upon calling for an appointment. Luckily, I have a good one. He immediately placed me on an event monitor for 30 days but at this point, and with the tests we already had, he was leaning towards Dysautonomia; another rare disease of mine where little is known and treatments are non-existent. Dysautonomia basically means that my autonomic nervous system malfunctions. Your autonomic nervous system is responsible for everything from regulating your fight or flight response, body temperature, blood pressure, and heart rate to controlling your digestion, your breathing rate, and maintaining an electrolyte balance. I got a shit hand in the health department, I tell ya, but I’m sure you’re starting to see what I mean. Well, guess what? No surprise that the heart monitor came back as benign, meaning the things that were happening, "would not affect the length of my life or be life threatening, however they would affect my quality of life". Basically, the palpitations aren’t being caused directly by my heart but as a result of my body being under stress from something else. I once had a friend ask me if there were any parts of my body that weren't an issue to which I responded, my heart. Your heart is a resilient, flexible muscle and mine appears to still be strong; it's just being bullied by something else. Great.
Well, being me, I wanted to rule out all of the other options before settling on Dysautonomia because it would be both discouraging yet reassuring to have something that might actually be an easy fix for once. I sought out my Neurologist, sleep specialists, my Endocrinologist, was even referred to an Interventional Pulmonologist when my CT scan came back with bronchial wall thickening and of course, my primary.
At the risk of boring you, I'll continue those visits on another post. It’s now been over 10 weeks and the symptoms still haven’t subsided although I haven’t lost consciousness again. I'm able to work through them where as before I would be so uncomfortable that I could barely stand for short periods. I am not typically one to roll over and play dead, especially not for this long, and I much rather be in control of my health than wait for someone else to take care of me. I'd be waiting forever in that case. I guess finding an even deeper mental strength throughout this has been the silver lining. Since I don’t have a definitive answer quite yet though, my saga continues, and if I've managed to keep your attention this long, kudos to you. I'll keep you updated with what's next.
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