13 Years of Question Marks, and a Little Bit of Hope

I wrote this out to get my thoughts onto paper so I could try to get back to focusing on what's in front of me and these last couple weeks of the semester. Most of my writing feels vulnerable to put out, but I do so in the hopes that it might help someone know that they aren't alone. I don't know how I feel about this one, it feels a little whiny and like I don't want to bother people with all this, but at the same time this has been my day-to-day and getting it out from behind closed doors feels like a relief - so here it is...

 

When I was 15 I was taken to the hospital for the first time for an unknown/undiagnosed heart issue. This was the first of many episodes that I eventually got used to and learned to control my breathing to regulate my heart rate when it was acting up. In retrospect, that first episode happened shortly after getting playfully tackled by the first boy that molested me, and I’ve told myself the episode was likely just a panic attack.

Around the same time, I began having respiratory issues, that were helped by inhalers but wasn’t given a firm asthma diagnosis. Athlete’s asthma was written down in my chart with a question mark next to it and we moved on.

Also at 15 began my stomach issues, beginning with becoming lactose intolerant but by 16 I had clear signs of internal bleeding and constant pain and was given another question mark in my file. At 23 they narrowed down the question mark to Crohn’s disease? and I continue to have issues that they can’t firmly diagnose beyond process of elimination and the locations of the ulcers along my terminal ileum.

By cutting out foods during years of trial and error, I ended up on a diet similar to a paleo diet to reduce the number of flare-ups, and further cut out nightshades to reduce the pain in aching in my legs.

There were days where my energy felt like it was on the floor and I thought it must be my blood sugar so cut out refined sugars to help regulate it, and there were months where I woke up every day feeling nauseous and dizzy that I wrote off as being a side effect of the birth control I was taking.

Toss in anxiety, a dissociative disorder, and a bunch of migraines and there’s the overall view of my physical/mental health. I made things worse through years of drug and alcohol abuse, and I’ve made things better through recovery and yoga. It’s frustrating that one of these things always seems to be flaring up, but I’m also coming to a place of acceptance where I’m moving away from a place of allowing it to define my life. I’ve cut out people who I felt guilt and shame around when I was having a rough day and surrounded myself with people who see me as a whole, not Elewyn and the Elewyn’s illnesses.

A month and a half ago I started waking up every morning feeling brutally nauseous, followed by dips in energy levels that kept me in bed for days at a time. I felt this way before, but it was always accompanied by stomach issues so I labelled them as Crohn’s flare-ups and would tweak my diet again until I felt better. This time there was no upset stomach, I was getting plenty of sleep and all the other good things, so gears started turning in my head and I wondered (for the thousandth time) if there was actually something else going on where everything was linked and instead of having a dozen question marks in my file, if there was just one illness followed by a period.

I went to the doctor and asked for them to do full rounds of testing, they wrote down tests for mono, strep, and at my request, Lyme. 10 vials of blood and a few days later I came back as having really low iron and blood pressure, negative for strep and mono, and a bunch of tests were still getting processed. They suggested depression and/or chronic fatigue syndrome, and I pointed out an evening where I was in a really good mood and wanted to call my mom, but my arm felt like lead and to get the phone from my pocket and up to my ear took a three minute pep talk, but I woke up the next morning with more energy than I had had in weeks. Yesterday I went in to get a doctors note so I could rewrite a midterm (second one this semester I missed/bombed due to a migraine) and the doctor opened my file just as the results came in: positive for Lyme on the first test - I felt my heart swell up with hope and I burst into tears - and negative for the second test. So either the first test was a false-positive or the second test was a false-negative (52% chance of it being a false negative).

So I left the doctor’s office with another with another question mark in my file, but this one feels like hope. But it’s a hope that I feel terrified to hold onto, but also want to keep so close.

The plan is to get my iron under control, and then start treating for Lyme disease to see if that works. So either life goes back to the way it was, a lot of rough days and a lot of good days, not allowing myself to be defined by either. Or, I get better (and will try to wrap my head around 13 years of specialists and question marks and feeling like shit all being started by a bug bite).

I keep trying to find a way to process everything, and balance hope with not creating expectations, but I’m left with an uncomfortable in-between where I realize just how much I’ve allowed my illness to define me.

For today I take it a day at a time, I focus on finishing my semester, getting my iron up, enjoying whatever it is that I have the energy for that day, and appreciating the whole team of people that I know are right there cheering me on and helping hold me up.