The Great Medical Round Robin
If you’ll excuse the language, this month has been a bit of a clusterfuck. My mom’s post explained a bit, but I’ll start at the beginning.
Because my main Lyme symptom is nausea, it is really difficult for me to eat. The best way I’ve found to explain it is like living with the stomach flu, all day every day. Except with the stomach flu, you can be relatively certain that it will resolve itself in 2 days at most. It used to be episodic, sticking around for a couple of days then disappearing for a bit, before rearing its ugly head again. But I have been in this state of ever present nausea for more than 6 months, with no end in sight.
After my calorie count took a sharp dip downward, I decided to refine my diet even more. I’ve been Paleo for three years, so what’s the harm in cutting out a few more food groups? I have been on something called the Autoimmune Protocol since early May, yet no improvement. Since every doctor I’ve ever seen has told me to try another elimination diet, clearly I’m doing something wrong and that’s why I’m not getting better. People keep telling me to “just eat though it”, and when I can’t it’s like I’ve failed. That lovely little anxiety voice that says, even if you’re giving 1200%, that you’re just not trying hard enough.
I really really do want to eat. At this point, I want to gain weight. I love food, and there’s nothing I want more than to be able to go out to restaurants with my friends, stay up late watching movies and eating ice cream, and not have to worry about the aftereffects. I enjoy eating, it’s just the 3-4 hours after it that really suck.
My mom suggested seeing a dietician who specializes in eating disorders. It was like my worst fears had become a reality. My own family didn’t believe that my symptoms were real, and I was just using it as an excuse to hide an eating disorder. That wasn’t what she was saying at all, but my anxiety took the reins before I even realized what had happened. So I’ve been resisting.
Well, I finally agreed to see her in early August. She set me up with a doctor who could follow my labs through the refeeding program, since it carries certain medical risks. And here’s where things get. . . complicated. Long story short, I have “nothing physically wrong with me”. Yet, I still feel like shit.
Unfortunately, my first experience with asking a doctor about Lyme disease was not a positive one and it has left me expecting a battle with every doctor. Most are kind but also check out after hearing the words. I can see it happen, they hear it and go “chronic lyme? Not my problem”. Then I’m talking at a brick wall, leave with no follow up, and find another doctor to start the whole process again. This new doctor waffled back and forth on my Lyme “diagnosis” (I’ve had so many different tests run and all say something else, at this point I have no idea why my GI tract is a trainwreck and a good pain day is a three on the pain scale) until I finally said “look. I don’t care about that. Just follow my labs for my dietician.” She agreed, until I told her how little I was eating. She said immediately said “I don’t know if I’m comfortable doing this. You are in the highest risk for refeeding syndrome, and you should do this inpatient.”
My first thought: oh, for f****’s sake. My first inpatient experience was at 15, and I knew that was the right thing for me to do at the time. My mom fought to keep me out, but I told her “we tried outpatient. I’m not getting better.” Even though my brain was still hijacked by depression, I still remember sitting in the school parking lot after my first psychiatrist appointment and screaming at her while sobbing because no one was listening. People were in fact listening to me, but I couldn’t through the “grey fog” (that’s what I call it when my depression has altered my perception of reality). Saying “I believe you” or “I’m listening” is the equivalent of moving the ocean with a tablespoon. The only cure is to take away the fog.
After I got out of the car, I didn’t even go back to class. I just sat in my school counselor’s office until my mom called me and said she had gotten me an intake appointment at Marillac. She was on her way to pick me up and take me there.
I don’t remember much of the first or second day in inpatient. Apparently I didn’t talk much. But I do remember the first day on Lexapro. Before bedtime on the third night, my hall mates and I began our nightly ritual sitting outside our rooms and chatting with the counselors. A girl I had eaten lunch with that day grinned up at one of them. “Megan actually talked today,” she announced, “She’s actually pretty cool.” I blushed as everyone agreed. After four years of only being defined by anxiety and depression, I felt like I could be anyone and do anything. And less than a week later, I was going home.
All my unit mates agreed, “you always come back to Marillac”. “Not me”, I said. I was only partially right. Nearly three years later, I was back into a different hospital.
By comparison, my second hospitalization was a trainwreck and I was there for less than 72 hours. I wanted out from the moment I was in, and both my mother and I had to fight tooth and nail for every bit of care that I received. I was lucky if the doctor even noticed that I was there that day. I felt bad for everyone there, including the underpaid and overworked staff.
So here I am, possibly staring at my third inpatient stay in the face because, as hard as I am trying, I have yet to get my calorie count to 1,000. I’m trying to give myself some grace, with the stress of moving and having to find all new doctors here in Chicago. Since I’m seeing a PCP for refeeding labs, a dietician, a therapist for my “eating issues” (possibly EDNOS? We just don’t know yet), and trying to establish care with a psychiatrist, as well as being a full time student, I’ve chosen to not see a Lyme Literate doctor. Part of that is time, part of that is anxiety. Both the doctors I’ve had have been less than perfect matches and all my tests (from what I’ve read, this is common even if a person has Lyme) are coming up inconclusive, so I’m terrified to see another one. What if it’s a waste of my time, or even worse, what if I’m a waste of their time?
I have no idea what is causing my nausea. Emetophobia? Possibly. Malnutrition? Maybe. Lyme? No doctor or test seems to agree on that. On top of all of it, I’m starting to doubt myself when I try to differentiate between anxiety nausea and “Lyme” nausea. When people continue to doubt you, eventually you start doubting yourself. So now I won’t let myself take my meds because I don’t want to feed the “anxiety monster”. Remember the fog I talked about? Anxiety is the “red fog”, or sometimes like someone turned the brightness on a photo way too high and whited everything out. Everything is all white now. But I have my faith that if I keep moving forward, things will work out.
I’m going to give school a shot. I’m seeing one of the premier doctors on chronic nausea over winter break, in hopes that he will have some idea of where to go. I joked with a friend that I have a tendency to trip and fall into solutions. I’m so focused on going forward that I don’t even notice until I look back and go “huh. I can’t believe that worked”. I have this story for a reason, and I’m not stopping until I find out what that reason is.