Hello everyone! I have to apologize for the silence over the past few days. Between what the media is calling our “cyclone snow bomb” and an increase in one of my medications, I’ve been keeping a pretty low profile. That being said some big things have happened behind the scenes that I have to tell you about.
When I started this blog I really thought it would be just for me, and maybe my mom would read on occasion. That being said, I am absolutely blown away by the support I’ve received from old friends, new friends, and family. This week I had posts featured on both The Mighty and the Yahoo Lifestyle page. To have so many people reading my writing is absolutely a dream come true.
There’s been another side to this though, one that I’m equally grateful for but that has been weighing fairly heavily on my mind. I’ve heard so many stories over the past few days of people just like me, unable to access adequate care locally. I don’t just mean on our little island either, I mean across the country, people just like me are continuing to struggle and it’s breaking my heart.
Chronic illnesses of all types are often being overlooked by the medical community leaving people to essentially become their own caretakers. We quickly become doctors in our own right, and through trial and error develop our own coping mechanisms. These won’t cure us, but they may provide a temporary distraction. This is what you see from the outside looking in, and I imagine if you didn’t know any better it looks just like a cozy night in. Please remember though for every #selfcare we post, there’s hours and hours of writhing in pain, nausea, and tears your not privy to.
Why is it then there’s not more of a push to find cures for chronic illnesses?
I want to share a story of what I consider my worst night with Lyme disease before I was diagnosed. I had been at work sitting at my desk when all of a sudden the room began spinning and I was confused. I didn’t know what I was confused about, because in that moment, I don’t even think I could have told you where I was. I snapped out of it pretty quickly (thankfully) but something was still wrong. My Fitbit was reading a heart rate of 170 beats per minute even though I was sitting. Then suddenly I thought my head would explode, with intense pain and pressure. I knew something was wrong so I called 811 then and there and asked what to do. The nurse on the other end noticed my speech was slow and I was having difficulty responding. She asked if I wanted an ambulance. I didn’t, but a coworker would have to take me to the ER right away.
My mother met me at the ER and together we waited patiently for triage. When it was my turn my mother told the young nurse what had happened as I was still fairly out of it. Together we watched as she smiled and nodded and simply wrote “headache” into the system. No mention of the confusion, high heart rate, or difficulty responding mentioned. I was all of a sudden labelled the person that goes to the ER for a minor headache, and that’s exactly how I was treated. After a nine hour wait the doctor came in the room and said, “headache eh?” to which my mom said well that’s not really all… he quickly responded by telling us there was a flu going around and that he would give me a sleeping pill to sleep it off.
I now know I was suffering from extreme neuropathy caused by late stage untreated Lyme disease, the effects of which we’re not sure will ever be completely reversed. But how does this happen? Why are we letting this happen? What can we do about it? I don’t have any of the answers but I think it’s worth noting that something has to change.
In the meantime, if you’re suffering and don’t feel like you’re being heard, please keep trying. Contact government representatives, contact higher ups at the hospital, contact charity organizations that may have seen similar circumstances before. Don’t stop looking for answers and don’t take sleeping pills, or bandaids, as answers.