The month of August was rough. Less like “wow that was a rough patch of time” and more like “well, that 100% sucked”.
This is my version of how we got here (Megan has a different perspective. Basically because she lived it from the inside and I lived it from the outside. Two different perspectives. Both correct. Because life works that way).
We have all struggled to make sense of Megan’s increasingly bad reactions to eating. It began just after a bout of a really awful stomach flu (when I say awful I mean the worst rotavirus I’ve ever had the misfortune to experience). About two weeks after she was up all night with this monster, she started having a lot of anxiety about going to bed. Would she get sick again? Would it happen to her twice? We tried everything to lessen the anxiety but nothing was working. It got so bad she slept in my bed for two weeks. So we decided to do exposure therapy for throwing up (btw, did you know emetophopia (fear of vomit) is a fairly common phobia and affects more women than men? Usually it starts in childhood or among teens who also have anxiety. F***king anxiety strikes again).
(Note: you can read about Megans take on exposure therapy here).
Long story short: the exposure therapy caused more anxiety not less. The therapist finally cried wolf and said she was done – she couldn’t do any more. Which was a very good thing for Megan as those sessions were literally hell on earth for her.
And the stomach aches got worse. Now some food was causing nausea and the reflux (she has had that since she was young) was getting worse. So Megan started following a paleo diet. The paleo diet turned into an autoimmune protocal…which turned into so many new diets to try and stop the nausea and stomach pain. She had a endoscopy. She tried Prilosec. The GI doctors threw up their hands and said we don’t know where to go. And the nausea got worse. Then the joint pain and fatigue began. Lyme became a possibility then a reality.
Could this nausea and stomach pain be lyme? Or was it left over from the phobia we haven’t conquered yet? She said absolutely not anxiety this stuff is real and physical. I couldn’t get that possibility out of my head that anxiety had caused a massive mix up and now food meant nausea. This diversion in thinking caused a lot of stress between the two of us.
No one wins.
At the end of last semester, the nausea got so bad, she stopped eating for much of the day (due to the awful lyme treatment? Lyme itself? Stress? Medication reactions? Hell, I didn’t know. All I knew was I was getting really concerned).
Not eating caused more issues and her weight was dropping. What could be Lyme symptoms started to appear like malnutrition. But thank goodness I thought. She was coming home for the summer and we can fix her right up (why I continue to think I can fix everything is beyond me).
She coasted through June, two online classes and the brain scan that gave us some new medications to try for the anxiety. July we tried a colonscopy (maybe the problem is there?) It wasn’t. And now the anxiety meds that were supposed to help were making her sick.
Cue August 2016. She was down to eating a scary number of calories a day. Everything made her nauseous. You try eating through nausea, she said. How unfair of me to even ask her to eat through nausea, I thought. She was so tired and she felt so bad, we couldn’t find our sweet Megan on most days. She was crashing.
We made an appointment with a nutritionist that specializes in eating disorders. Is it an eating disorder we said? Well, no, she said. Not a traditional one. Not one we can label. But the end result of what is happening here is the same. She is way below an ideal weight.
The goal was to get her back on a refeeding program before school started so she could go back and rejoin her friends and her life. So the nutritionist recommended a doctor to walk through the first few weeks of refeeding to make sure she was on track. Just some blood tests and a general physical so we can baseline.
Just. Ha ha ha. The appointment is Friday afternoon…and all hell breaks loose. The Dr. says the blood work shows an elevated potassium level and she sees a definite blip on the EKG she thinks looks like arrhythmia.
All. Hell. Breaks. Loose.
Now we are talking about something called refeeding syndrome. The Dr. recommends an emergency inpatient eating disorder program where they will monitor her as she eats so she doesn’t DIE WHILE DOING IT.
We spend hours on the phone with inpatient programs. No one will take her quickly. Everyone doubts they can serve her (“We don’t refeed here or have on site medical staff. But if you are looking for an inpatient therapeutic program for an eating disorder, we can serve you. In two weeks.”) One program actually says her weight is fairly high for their program and to call them when she is closer to 70 or 80 lbs. Perfect. I’ll call you back in a few months when she is really on deaths door. Thanks for your help.
Since we are completely out of options, and apparently my kid is going to collapse on me at any moment, the Dr. recommends we head to the ER. She says they will admit her then we can go from there. At least she will have medical monitoring.
Megan packs for a hospital stay and preps for the idea that school may not happen this semester. Our moods=shit. The ER puts her at the front of the line and we are seen 15 minutes after arriving (FYI arrhythmias get you noticed).
And here goes the August 2016 punch line everyone. Ready?? Okay…
Her labs are NORMAL. Her EKG? NORMAL. Nothing of note anywhere. They take a look at her and say, “yeah your weight is low. But you are healthy. Why are you here again?”
All that drama. For absolutely nothing.
Megan is beyond done with us all (at this point I’m done with us all so I can’t blame her). We take three steps back and re-organize our team to beat this illness. We try not to blame the medical community or Megan’s stomach or ticks or each other. I’m not gonna lie, it wasn’t easy. We agree that if she wants to go back to school, she can if she takes good care of herself. She outlines her goals for her health and we provide the tools to get there.
So. Long story short, Megan went back to school yesterday. God bless that girl and her ambition to go get what she wants even in the face of this crap of a month. She is working on her eating as best she can and she has assembled a team in Chicago to support her in getting better. She loves her dorm room and has one of the nicest, most supportive roommates ever. A team of friends that love her.
Morale of this story? I don’t know yet. Except this lesson I continue to work on: Megan isn’t me and her mental and physical health is hers to own. I will continue to be there, to offer my support (surprisingly that does not include my opinion or my superior calorie counting skills as I’ve learned this month) and my encouragement.
She could sure use some prayers and positive vibes coming her way this semester if you have some to spare.
I'm busy working on my blog posts. Watch this space!