Stop the Merry Go Round... I wanna get off!
As a chronic illness sufferer, I experience and put up with many aches and pains that may feel like "something" to some people but usually get chalked up to it's probably part of "that" and thrown into a random bucket of "normal symptoms"
I, personally, have a fairly high tolerance for pain. I have for most of my life. Unless it's some sort of crazy screaming in your face kind of stuff, I usually tolerate it until it passes or throw a Motrin or Tums at it and move on.
There have been but a few times in my life that something has stopped me in my tracks or derailed me from whatever direction I was heading in.
Over twenty five years ago I was diagnosed with Tinnitus. You know, the noise in your ears, well it's not really in your ears it's actually in your head but whatever, potato, potahto . Nonetheless, that was the first time I encountered doctors that didn't know how to fix something. I was prescribed antidepressants not because I was depressed but because this was the only way they knew how to lessen the anxiety that came with having a constant loud and obnoxious noise as the background music of your life. And while it's not a new illness or condition, no one has exactly solved the mystery of where, why, and how it arrives and, to this day, they still don't know how to get rid of it permanently. You're given a prescription of some sort of downer, suggested that you try a white noise machine, maybe meditation and told that you're just going to have to learn to co-exist.
I'll admit that I tried one of the pills they gave me. I don't remember what it was but damn was it strong! After I woke from my third nap I immediately tossed the remainder of the bottle. I was never going to be able to spend the rest of my life stumbling around and going to work feeling sleepy and half drunk.
I tell you this story for a little background and so you have a small idea of co-existing with something unfixable. Something uncontrollable.
Make no mistake, it has not been easy but I have, at times, throughout my adult life, completely forgotten that I had tinnitus. I don't know if it was diet, antibiotics, barometric pressure. I cannot pinpoint nor replicate the exact formula of whatever I was doing in order recreate the beautiful absence of my annoying sound but I do remember how peaceful it was. Utterly blissful silence.
I miss those days.
Fast forward to this year, this month and throw back to a few nights ago when I was sitting at my computer jamming on my book proposal. I was making real progress, the words were flowing, the ideas alive and my lips started to tingle. When I say "tingle" think about what it's like when you've been given Novocain and your lips feel blown up and numb. Your brain is totally convinced that you are swollen to the size of Texas, like after being in a bad fight, when in reality you look fine and you just can't feel a damn thing.
After my lips started to feel this way my jaw followed and then I started to get some pressure in my shoulders, the base of my neck and up the side of my head. I realized how tired I was and simply couldn't focus on what I was trying to write so I shut everything down and headed up to bed.
You have to understand that this is not completely abnormal for me. Things feeling "off" is par for the course. A regular daily occurrence of someone who is chronically ill.
I changed into my pjs and did my normal bedtime routine: potty, hand wash, teeth brushing but something was still a little weird. I felt a little loopy. Not completely dizzy, maybe light headed? But definitely off. I climbed into bed and tried to think about what I had eaten, had I taken my calcium? Was there anything out of the ordinary about that day? Did I drink enough water? Eat enough protein?
I attempted to lay down and couldn't get comfortable being flat. I felt as if my throat was swelling or closing up and not allowing air through. This too has been a normal occurrence ever since my thyroid surgery three years ago. I wasn't convinced that it was at all related to whatever was going on.
Then I started to shiver, but not my whole body, just from my waist down. My thighs were uncontrollably shaking as if I were freezing yet I didn't feel warm or cold. I was wearing a t-shirt and cotton pants, I wasn't sweating and I didn't feel feverish.
Not only was something was not quite right but I couldn't put my finger on it and because of that I didn't know what I needed to treat or how.
When my husband came up to bed I was still trying to process whatever "this" was. He noticed the strange puzzled look I had on my face and questioned accordingly. All I could tell him was that "something's not right, something is just off, it's not right." I had no other answer.
He went about his bedtime routine, checked in to see that the kids were actually shutting down their devises and turning in and when he returned to our room he turned the lights off and climbed into bed beside me.
In the dark I was teetering between nodding off and what the heck is wrong with me? Is this something that will pass or should I be paying closer attention to it. The shivering was freaking me out a bit but then I thought "I wonder if my body is detoxing from the steroid I had to take for that blood test the other day?" I sat up simply because it hurt and was uncomfortable to lie down. My shoulders and my head felt pressure and was sensitive to the touch. And because I sat up so did my husband.
In our dark room, by the light of his phone, we were trying to talk through what this could be when I got up because I had to go to the bathroom. As my feet hit the floor I brushed up against the dog. He was lying next to my side of the bed curled up as close to me as he could get. He never sleeps there. Never. Dogs sense things, right? Illness? This was getting weirder.
I walked, still loopy, to the bathroom. Proceeded to have what I would consider a normal pee and bowel movement (I know TMI but it's relevant to the story) and then headed back to bed.
As I sat propped up and covered in blankets I continued shaking. Talking through the possibilities with my husband, he was reading off the side effects of the steroid I took 2 nights earlier. My doctor is currently testing me for Cushings and the steroid was for a Dex Suppression test, it's a screwy cortisol thing. Anyway, I was half listening to him while my mind was continually flipping through possibilities and really just trying to figure out how bad this was. Did I actually need to go to the hospital? Within 15 minutes I was up again and making my way to the bathroom. I had a strange wave of nausea.
Side note - I don't do nausea and I mean like hardly ever. I had no morning sickness through two pregnancies and threw up only once while pregnant, after a 10 hour international flight, a missed connector flight and a bad hotel meal. Even still, I didn't puke until the following day after we made it all the way home.
So, I hobbled my way to the bathroom, again and proceeded to pee, again and then I had diarrhea. Another bodily function that is not completely foreign to me but something that is so rare I cannot remember the last time it happened. Now, I was worried.
When I got back into bed I sat down but didn't tuck myself back in. I tried to take inventory of all of the current sensors and buzzers going off in and around my body. I couldn't focus to truly do a proper search on my phone but I was seriously leaning towards the possibility of a heart attack. I know women don't usually present symptoms the same as men do but at the same time I couldn't quite rationalize if this is what was really happening. Even feeling this bad I didn't want to go to the ER. I didn't want to get in the car, at midnight, in the middle of a pandemic, drive through the pouring rain as temperatures were dropping bringing with it a snow storm to central North Carolina.
"Fuck, fuck, fuck, fuck, fuck".....internally is what I kept repeating to myself.
The dialogue in my head was a fight with myself as I was weighing all of the possible outcomes between staying home and waiting it out or getting up and going to the Emergency Room.
I finally looked at my husband and said "I'm gonna need you to take me to the hospital."
The 20 minute ride to the hospital in the downpour was unremarkable, thank goodness. I was a still lightheaded-ish but not completely dizzy. I was already tense due to the aching of my head and neck that I barely noticed what was happening outside of the car.
My husband pulled straight up to the front door of the Emergency Room. I put on my face mask, grabbed my binder (that houses every lab test and all of my health history) and hobbled the few feet to and through the sliding door. I nodded at the security guard as I passed him and made my way straight on to the check-in desk. The place appeared empty and I was grateful and founs that to be calming. I had some difficulty communicating with the man behind the intake desk as I was trying to express the urgency of my discomfort through my mask and the glass panel between us . Having a challenging last name any other time is usually a fun teaching moment and sometimes drums up light banter or chatter but not today. In order to expedite things I pulled out my drivers license and handed it over to him. I really didn't feel as if I had the time to waste and now with my head pounding, I couldn't stand to spell things out or repeat myself. Within moments Peter, my husband, was by my side with one of those paper masks. I was being told something about the filter opening on my mask needing to be covered or I needed to wear the temporary mask. I grabbed the make and put it over the one I already had on.
The intake man asked what brought me in.
"I think I'm having a heart attack" I said as loud as I could through all the layers.
He immediately called the EKG department, alerted a medical staff member who, within moments, came whizzing by me stating she was going to get me a wheelchair.
I was rushed off to testing, asked questions and hooked up to a bunch of cables. I don't think it took more than 10 or 15 minutes before I was rolled out of there and over to triage where I was asked to give a urine sample, given a gown to change into and set up on a gurney.
There were a couple more nurses, a doctor and I don't know who else. They hooked me up, drew blood and sent off their collections for testing.
Mystery doctor, He was awesome, but I'll have to log into the hospital chart to get his name, after asking a handful of questions he let me know that he was ruling out a stroke since all of my pains and tingles were symmetrical. Usually that's a one sided kind of symptom or reaction. He told me that they were going to monitor me for a bit and wait to see what my tests results had to say.
We were at the ER for a total of six hours. I can recall very little because once they gave me something to calm my shaking legs I was relaxed enough to nod off. I remember seeing 2:30am on the wall clock and then sometime after 4am. Nurse Cheri, or was it Shari?, not sure but she told me that they were going to run one more test at 4:30a and then if all was good they would be sending me home.
It wasn't long after that conversation that the on call doc came back in. After asking how I was feeling and if any of the symptoms had changed, he said based on what they can see I did not have and was not having a heart attack but I do have a screaming Urinary Tract Infection.
I'm sorry, a what? a UTI? For real? I have had no smelly pee nor did I have any discomfort or burning when I urinated. How is that even possible? And frankly, why is that even allowed? It's bad enough to have normal symptoms that point to actual normal things, multiple things, but to have a condition that exhibits no warning signs or normal symptoms at all? Seriously, WTAF?! And how long have I had this infection that I was starting to feel like my body was going to combust? <insert eye roll and irritated resting bitch face> Don't get me wrong, I'm beyond thankful that it wasn't a heart attack but God am I tired.
Around 6am they discharged me.
We drove home on slushy streets with fresh snow still falling. It was beautiful and bright and I was thankful. It was a scary, exhausting experience and I was thrilled to be on my way home to my house, to take hot shower in my bathroom and to be able to wake my kids up for their virtual school day before I climbed into bed for a nap.
If you've made it this far, I appreciate it.
There are several reasons that I share this story with you.
For my fellow Spoonies and Chronic Illness Warriors, I know you get it.
Living in a cycle of symptoms and conditions feels much like the ups and downs of a Merry Go Round that continues to move in a circle rather than a straight line with an end point and conclusion.
The constant internal conversation you have trying to solve or decipher whatever new symptom your body throws at you is not only exhausting but can be alarming because you don't always know if it's nothing or something that may do further damage and spiral out of control making other issues worse.
Even scarier there are a ton of people now who won't go to the hospital because we are in the middle of a pandemic and they are hoping that whatever they're feeling will pass or they can treat it at home because it can't be worse than the possibility of getting Covid.
And then you have the people who can't afford a trip to their regular doctor, let alone the ER, and end up suffering at home, end up sicker than they should be or simply end up dying.
It would be easy for me to tell you that if you truly don't feel good that you should go to the ER because "better safe than sorry." But when that bill comes due its going to present itself in different ways to different people.
Our healthcare system is broken in so many ways. It manifests itself in costs that can not be afforded by some or it can be the neglect of medical professionals who simply don't do their jobs, so even if you can afford care, you have been ignored or misdiagnosed.
The stories are endless.
There is no easy answers here and there are so many pieces to this puzzle.
The original purpose of this post was directed at the unpredictable life of a chronic illness sufferer. I'm sick of it and I know there are millions who feel the same way.
Stop the ride, we want off.
*Please try to take care of yourself and each other. We know it's hard and you are not alone.