The Queen with the Invisible Crown

Every time I feel a big flare coming on, I picture myself standing in the hunger games arena with Effie yelling out “May the odds be ever in your favor”. Happens every time. Why? Well because you never know which strings my digestive tract is pulling that day/week/minute/second (maybe President Snow would’ve been a better name for my digestive track as opposed to maleficent). Maybe I’ll throw up for 3 days straight or even better, I’ll dry heave every 15 minutes for an entire day. Or maybe I’ll have to leave Wegmans because if I don’t, I’m going to quite possibly shit my pants in aisle 3. Maybe I’ll get another round of thrush in my esophagus. Or even better, maybe I’ll develop methane gas producing archaea and let them just live in my gut biome.

That’s my flare life. I never know what evils are in store for me and so far - I haven’t had one flare that is the same as the other. They are each as individual as a finger print. And they seem to be getting more wicked and vindictive each time. I never know what to expect.

This one started a few days before Thanksgiving (just a week or so after I did my post about how good I was feeling and thankful November and all that happy shit). Lesson learned….avoid outright saying “I feel good” because it will anger the powers that be and they will throw you into that arena with the worst nightmares waiting for you.

At this point, it was bearable. I was just starting to feel those little body warning signs. Getting food down was becoming a little harder, I was having a wet cough every time I ate anything, eating hurt and I was bloated and nauseous (but not regular bloated and nauseous…the hunger games version). The bloat is the kind that can distend your belly so far out that people ask you when you are expecting, the kind where your belly is harder than a rock and there is no amount of farting, going to the bathroom or burping that’s getting that air out…it leaves when it damn well pleases. And the nausea is def. the hunger games version….it makes you start salivating and uncontrollably drooling from both sides of your mouth, washes everything over with a sweeping taste of metal, ignites actual flames inside of your ears - but they stop you before you can blow any actual fire out of them, no…they just want the fire to burn you to the point of insanity.

Every week, I would get another symptom thrown at me until the uncomfortable turned into downright painful, unbearable and torturous.

Here is where we enter the fast fire rapid doctor appointments and tests that don’t lead me anywhere. My one doc thinks it’s my muscles so she puts me on a muscle relaxer, the next doc thinks it’s covid (which it is clearly not) and the next one thinks I’ve lost another marble. But finally, my PCP is able to come through for me and get me in for a pharyngogram (try saying that 5 times fast) way ahead of schedule.

I was nervous about the test but once I met the doctor and she explained everything to me I was ok with it. I basically ate barium (chalky stuff they use to contrast things during an X-ray) in all different textures and then me and the team watched me (my skeleton actually) swallow foods. It was quite interesting to watch and did help shine some light on what was going on with me. The doctor explained that my ineffective esophageal motility (IEM) is a little worse than we thought. My esophagus is barely doing any work (I would say she’s almost as paralyzed as my stomach). Even with frequent sips of liquid - some foods just sit there and hang out, cling to the walls of my esophagus for dear life because they would rather stay there than fall into the pool of toxins my stomach is full of on a daily basis. This meant back to square one: soft foods and even then chew to a pulp, several sips of liquids with each bite to keep food moving down and eating painfully slow.

I did that, it worked for a bit. I was sad to see my sandwiches go but I made do with instant mashed potatoes as my meal everyday. But before I knew it, more symptoms started to creep on in. The bloat was getting bad, the lower belly pain was getting bad and I knew the IMO (intestinal methanogen overgrowth) was back. I had this last in July BUT most likely had it all of 2019 and 2020 because they were unable to do the tests for it due to covid. Because of this, those archaea (similar to bacteria but much sturdier) had a chance to make themselves very at home. I told my doctor what was going on and she started me on the treatment for IMO. The treatment consists of two VERY heavy duty antibiotics. I had to take them 3 times a day for 2 straight weeks. They are no joke though and I was feeling super shitty (quite literally) the entire time I was on them. I was done with them by the beginning of February. The bloat was gone but I still just did not feel right.

This went on for all of February and a few days into March. On Friday, March 4th I took my Mom to the doctor. I started to feel super funny while we were at her appt, but I chalked it up to just my usual stuff. It went on like that all weekend and then at around 3 am Monday morning I woke up violently throwing up. I threw up about every 30 minutes from 3-8 AM and then a few more times throughout the day but I felt ok in the afternoon and assumed I could go to work the next day. Well, at about the same time Tuesday morning I woke up getting sick but this time it was coming out of the other end. That lasted again until about 8 AM and then a few times throughout the day but then I was ok in the afternoon so I figured I would go to work the next day.

And then there was Wednesday. I am not kidding you. I woke up getting sick again but this time, it was like my body was trying to perform an exorcism on itself. I could've sworn that it was trying to eject anything I've put in my body for the last several months. Every time I ingested something (whether it was a sip of Gatorade or a nibble of a saltine) I had about 6 minutes exactly before it violently exited my body. I couldn’t move from my bed. If I moved, I got violently ill. I tried to stay still in bed all day to avoid angering anything...but it wasn’t going away. I spoke with my doctor and she thought it would be smart to do infectious disease testing on my stool so we sent that in right away. I wanted answers.

Thursday was equally as horrible if not worse for me. I went until about 3 before I reached out to the doctors office and the nurse said I needed to head to ER for fluids. I got to the hospital around 4ish and as I was checking in, my test results popped up. I had c diff.

I was already out of it, 4 days of not being able to keep anything in…my brain was not working right. I was barely processing what she said. They kicked my Dad out so I was alone and at this point a little scared. I didn't know a lot about C Diff and I definitely didn't know what it meant for someone with my digestive system. Well…I had every right to be scared and anxious because that was one of the worst nights of my life.

I sat in the waiting room at the hospital for 7 hours. I refused to eat or drink anything because I was NOT throwing up or having explosive diarrhea in a hospital waiting room shared bathroom. So I was getting NO fluids for 7 hours. I was dizzy, my vision was spotty, I was in so much pain. They got me into a room at about 11:30. It took another hour before they hooked me up to fluids and brought nausea medicine. Now mind you, I take nausea medicine every day at home because I have extreme, debilitating nausea on the daily. I know what works and what doesn’t, but why listen to me? They gave me zofran which does nothing for me. It’s like popping a skittle. But they made me “try” it first. I asked for a pillow to elevate my head because of the nausea - no pillow. I asked for another blanket because I was freezing - no blanket. I used my sweatshirt and pants as a pillow and covered myself with my winter jacket. After the doctor came and saw me, I explained why I needed phenergen for nausea (she agreed but it was another hour before I got that) and another hour before I got any actual medicine for the c diff.

The doctor said that for someone with C diff and all of my other conditions - I did a pretty good job of hydrating myself. And being so in tune with my body helped me recognize something was wrong quickly. She said a lot of people go weeks with c diff before diagnosis. I had only gone 4 days (although I’m pretty sure I’ve had it for quite some time now). The running theory is that the antibiotics for the IMO (intestinal methanogen overgrowth) are what caused the c diff.

I can’t even tell you how many times I cried that night. I just wanted home and have comfort and my medicine. I get being down staff, but it isn't ok for that level of care for anyone. We all deserve better than that.

At 4 AM I was finally able to go home! I had my prescription and discharge orders (which get this…an antibiotic caused c diff so they put me on ANOTHER antibiotic to fix it….I give up on trying to find the sense in any of it).

C diff is a pretty intense and dangerous toxin for normal people. For someone whose digestive tract is either fully or partially paralyzed - it makes my healing journey a bit different. My body is mad and it will probably take a little longer than usual for meds to kick in and actually work. For now, I’m extremely tired (4 pills a day, each pill makes me exhausted). I’m bloated - I look like I’m about to pop out twins and I’m in quite a bit of pain. But I’m working through it the best way I can. I have the most amazing support system ever. My parents, my Room, Sean, my brother and sister-in-law, my lovelies, Amanda, and some badass co-workers are legit ready and on stand by for anything and everything that I need. I'm a lucky girl.

I am a Queen, my crown may be invisible. You can’t see it - but it’s there, every day. I wear it proudly because every day, I conquer an invisible, evil, painful, scary, mean, vindictive and ever changing illness.