My Story Part I: What Went Wrong
Four years ago, on March 20, 2017, my life changed for the best. Eleven years ago, in the fall of 2010, my life changed for the worst.
Let me tell you what happened.
Summer 2010. I graduated college and launched into the world thinking it was all up from there. Nothing serious seemed to be wrong at this point, even though throughout four years of college I picked up illnesses left and right more and more often and had already gained the worst symptom I would ever have: sporadic, consciousness-clouding IBS.
Fall 2010. Many symptoms arose within a few months of graduating, but it took me a while to truly realize it, and the day that I did changed everything. I was living with my sister at the time, with my new boyfriend attending college nearby, and he and I took my sister's dog out one evening. I remember standing out there waiting for Fred the dog to go and I just started crying. My boyfriend (now husband) was quite concerned because the tears came seemingly out of nowhere and he hadn't seen me cry yet. All I could offer was a pitiful, "I just don't feel good." Those were the only words I had for it at the time. I can remember, right now writing this, how I physically felt at that time and had started feeling constantly. But I hadn't yet totally realized it, much less verbalized it.
In the months that followed, my biggest symptoms were lack of energy; extreme sensitivity to touch and pressure (Fred the dog innocently jumping against my leg hurt like crazy and would throb for two minutes after); debilitating eye pain/headaches (I could hardly look at someone when I talked to them); this overall, bizarre ache, especially in my arms; very poor sleep; inability to relax my body; and depression. By the end of the year, I knew something was very wrong, and I had figured out my mainstream diagnosis on my own thanks to the internet.
December 2010/January 2011. I finally got to see a regular family doctor and attempt to explain my issues. He wanted me to see my eye doctor for the headaches and eye pain, who found nothing and recommended an MRI to check my brain. Regretfully, I had the MRI done, and it was quite traumatic, as new sensitivities to sound and repetitive noises did not pair well with my new inability to lay perfectly still. The results came back totally normal. In the last quest to find an issue, my doctor referred me to a rheumatologist to check for arthritis, even though I knew that's not what was wrong. When the rheumatologist finally came into the room, he handed me a questionnaire to fill out and left. It was to check for bipolar, something that wasn't even a remote concern to me or my doctor. Much to his apparent disappointment, my answers indicated I did not have bipolar, he determined I also did not have arthritis, and he left the room about two whole seconds after that. With all other remote possibilities obviously ruled out, my doctor's PA agreed with my suspicion that I had Fibromyalgia and told me there's no cure for it, which I fully believed.
2011-2013. Over the course of these years, I rode the roller coaster of whatever drug my doctor thought I should try: muscle relaxers, anti-depressants, and even a mild pain medication I was told was a step up from Motrin. The only positives I noticed from any of them was an initial improvement in the eye pain and the depression, and I did lose some weight at one point (you know, that others had made me gain). But those improvements were eclipsed by my multitude of other symptoms. I had a lot of visits to the ER in 2013, two or three for apparent allergic reactions seemingly out of nowhere and one for my first panic attack, which rocked my world and had residual effects for a good month afterward.
At this point in my story, I will say that it probably seemed to most people that chronic illness came out of nowhere for me, and it took until 2012 for me to tell anyone beyond those closest to me that I had some incurable illness. But looking back on my life leading up to that development, I can see it was a matter of time.
I was born with the very common MTHFR gene mutation (which I didn't learn until 2016), which essentially means that my body does not detox properly. Growing up, I ate the Standard American Diet (SAD), was around all the usual toxin-filled everything we all grew up with, I spent a great deal of time in a family member's dental office, where mercury was used, and I got the usual shots for an 80s/90s kid. I remember back to 4 or 5 years old having a bizarre eye sensation that adult me knows now should not have been a thing. I was hit in the head by a basketball at least three times over the course of a couple years. I had surgery as a small child. At about ten years old I started having severe allergies out of nowhere to nothing in particular, involving debilitating sneezing and watery eyes to the point I would have to call my parents to come get me from school. Around that age I also started having seemingly random, weird things happen, from skin sensations to stomach issues. Yet I truly thought I was just weird. I topped all that off with getting whatever shots were required for my very strict college, where over the course of four years of being a perfectionist and trying to not get in trouble (I said, strict), I dealt with a couple of personally traumatic things.
If you take toxins or crap food or mild head injuries or traumatic events, you could have issues from any one of those. Put them together, and you have yourself a crap storm, which I know is only becoming more and more common nowadays. I just met mine earlier in life.
To say that I was miserable during these first years of chronic illness is an understatement. As I slowly came to grips with an incurable diagnosis, I saw my bright and shiny post-college dreams slip away. I had been handed a life sentence chained to my supposedly broken body's apparent cruel whims. I got married in the midst of it all, but brain fog of course pretty well robbed me of being present for the big occasion. And the housewife tasks that would be expected of me immediately fell to my (unbelievably selfless and loving) full-time-working husband. He took up the dishes and laundry and cleaning, hardly seeing me because I was in bed so much, and I would sit in the living room at night and sob over my life, my pain and exhaustion, and the freaking pile of dishes in the sink I would never be able to do.
Honestly though: How would you feel if you were 24 and armed with a BA you could now never use, in an apartment you can't clean, with a husband you desperately want to take care of but who has to only take care of you? The only hope I had was this vague notion that God could miraculously up and heal me if He wanted to, or if the right people asked Him hard enough. But people I knew did that and it didn't work, so there must have just been something wrong with me. So, no, beyond the certainty of a new body in heaven, I had no hope. And I think that was understandable, given the information—or lack thereof—that I'd been provided with by medical professionals and people around me that I trusted.
Lucky for all of us, my story doesn't even almost end there.