I have received a few comments to share my story – how I became sick, how I recovered, where I am now. I am a bit hesitant honestly. I don’t really like to talk about my unexpected illness because I still don’t have an explanation for well… anything that happened or is still going on. It is hard to come to terms with the fact that you don’t know what your body is doing, but I think it can be even more difficult to understand that the doctors are just as lost.
I know another part of me just wants to forget everything. It was a pretty bad year. I have some pre-existing medical conditions, so self-advocating, a difficult medical system, and the insurance system were not completely new; however, when almost no doctor takes you seriously, it becomes difficult to take yourself seriously.
So what actually happened?
In the summer of 2016 I got a stomach virus. I had been traveling around Iceland in a hatchback, eating an unhealthy amount of PB&J sandwiches, and sleeping in the trunk. As fun as it was, I was not really surprised that I got sick the night I arrived at my partner’s place in Bulgaria. Not to be graphic – but things were just not staying inside in any manner, but the most noticeable symptom was my fatigue and light-headedness. I passed out almost every time I stood up, could only manage light walking around the house, and needed an extreme amount of rest. I chalked it all up to having basically no liquids in my body and thought it would get better in a few days.
But months passed.
I was still having trouble eating… basically anything. My heart rate became more and more erratic. I started legitimately passing out. I became heat intolerant. I had a decent month when we visited friends in Greece; however, once we traveled back home to Boston, my condition started to deteriorate quickly. I was working as a chef – and it slowly became apparent (as I passed out at work over and over) that I needed to find a new job. I started to have reoccurring, debilitating chest pains, so bad that I ended up in the ER thinking I was having a heart attack. I was discharged with honestly more questions than answers.
Trying to cool down in the walk-in refrigerator during dinner service, after overheating.
My heart rate while laying down one day.
Introduce The Doctors
Before this experience, I liked to believe that doctors held all the answers. My father was a doctor, I had finally controlled 10 years of unmanageable migraines with the help of doctors, and they just seem to be pretty knowledgeable, right? Eh, maybe not so much. I quickly accrued appointments with cardiologists, neurologists, and orthostatic specialists. Yet no one had answers - even after echocardiograms, wearable EKG devices, and tilt table tests. My neurologist said it was a cardiac problem. My cardiologist said it was a neurological problem. My orthostatic specialist said my condition was not ‘bad’ enough to look into.
Staying stylish with my event monitor - a wearable EKG that records when triggered.
I continued searching for answers.
Part Two coming soon
Love your writing style. Just bumping into your blog but think we have some interests in common. Giving you a follow and interested how your story developed. Hope you are doing really well again now :)
Thanks so much! Things are definitely going much better now, and I will be posting the end of my journey later today!
Just read your running post to catch up! I can imagine how frustrating it must be to feel like you have no control over your health. I wish you a miraculous recovery (anything is possible!) or at the very least, clarity and answers!
It seems like you already are doing everything you can to get better, so stay strong and continue to visualize being well and at the peak of your health, and I hope you will get yourself back to that soon.
And thank you for sharing your story, I hope it will also help give you the encouragement and motivation to keep doing you! Sending lots of love and healing vibes for now <3 (and glad to have found you on steemsugars)
It was a completely frustrating experience - that is for sure! I think that sharing stories like this is so important to make other people going through illnesses not feel alone because it can be such an alienating experience. Thank you so much for the support - I wish you all the best as well:)
Sounds like a very taxing time. Are you recovered? I hope so. Sending hugs anyway.
When do we get part 2? I want to know what happened and that you are well again. 💙 💛 💜 💚
It was! Thinking back on it has been difficult as well. I think everyone kind of likes to leave the hardest times in the past:)
I will be posting the second half today! I am doing much better, and I am taking steps to help take charge of my health, but it may possibly be a lifelong condition.
I hope this is rescued from the virus. and you have a very good day.
also very sweet. I wanted to hug you :)
Aw thanks so much! And hugs in return:)
I am curious to know what was the condition and if you are better now. Can't wait for part two
It was such a mystery to me too (still kind of is! haha). Part 2 is coming out this afternoon!
It sucks being sick and not knowing why. I've been through diagnostic hell too recently, and have been writing about it too on my blog. It's a scary thing to do, but on the other hand, I believe we often keep the 'ugly' stuff to ourselves and could use some vulnerability! So I'm cheering you on. Keep on writing and I'll come back to read :-)
I read all of your posts! It really is nerve-wracking, and almost emotionally painful to go through all of that again in order to share it - but my hope is it will help me and others going through the same diagnostic mystery game. Thanks so much:)
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