With this latest relapse, I’ve been living as a ghost in my own life.
In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.
And over a couple months, I went from a healthy 110 pounds to a dangerous 96 pounds because of my eating disorder.
To put one more rotten cherry on top of the melting sundae that was my sad state, I’ve been too sick to run. Running used to be the one thing that could make me feel better no matter how depressed I was, but now, I haven’t even had that.
Because of all this, this week, my family and I once again found ourselves in the waiting room of my PANDAS neurologist. I’d hoped that my one-year follow-up would be a happy visit when we would celebrate everything I accomplished this year, but now, we were almost as desperate as our first appointment two years ago. And I was even four pounds lighter than I was in 2014.
I knew my doctor would be concerned about my fourteen-pound weight loss, but I wasn’t prepared for her reaction to other symptoms. After I shared details about the last couple months, she looked at me and said, “I’m going to have a heart attack because you haven’t seen a cardiologist,” and immediately called the cardiology department at my local hospital to get an appointment.
Why such concern? My neurologist suspects that the flu-like illness I had three months ago was the Strep-triggered Rheumatic Fever, which often damages the heart. Indeed, I was diagnosed with post-viral pericarditis in May—an inflammation of the sack around my heart, so her suspicions are somewhat warranted. Although a recent EKG came back normal, I have yet to regain my strength. Furthermore, Rheumatic Fever can cause extreme fatigue and weight loss, which I’m experiencing.
“What about the anorexia?” my dad asked.
“She’s going to need more treatment. Some kids need three IVIG’s… Actually, this is bad enough for plasmapheresis,” my doctor told us.
I could’ve cried when I heard this. I didn’t realize how serious my eating disorder had become and that being malnourished could also possibly damage my heart. I knew I was miserable, but I didn’t know I was in bad enough shape to warrant IVIG or plasmapheresis. In that moment, I felt like surely none of this was happening to me—perhaps it was all just a nightmare. Perhaps I was only a ghost observing someone else’s life. But I was wide awake and in my own body.
So I have my third IVIG scheduled in a few weeks, and I’ll be seeing a cardiologist today (Tuesday). My doctor thinks it’s unlikely that my heart has been permanently damaged, but the possibility of Rheumatic Heart Disease is nothing to mess around with. Maybe I will at least have an answer as to why I’ve been so dizzy and exhausted and unable to run…
There is another ray of hope, too: I was switched from Azithromycin to penicillin, and so far, my mood seems to be brightening every day. I’ve even started eating an appropriate amount of food (though I still obsess and count calories in an unhealthy way), I’ve resumed my hobbies, and I’ve been able to do some homework. If the improvements continue, I won’t be getting IVIG.
It’s been an unbelievably awful few weeks, but I’m so determined to beat PANS into total submission one more time. I’m holding out hope that the penicillin will continue to work its mysterious healing and that I won’t ever need more IVIG. I’m choosing to believe that slowly, but surely, I will keep coming back to life in the flesh, never again to haunt myself like a ghost.
15 thoughts on “A Ghost in My Own Life”
So sorry you are going through a rough time. Thanks for sharing your journey. I’ve definitely been in your shoes.
Thank you! I hope you’re doing better than I’ve been. And thanks for sharing your journey, too.
My heart breaks just reading this. My own DD experiences many of the same symptoms and copes in many of the same ways. I know when she stops running and/or starts obsessing over calories for example that we have hit a rough patch. I want to say that this too shall pass yet I know it is very difficult to see the light at the end of the tunnel when you are alwYs being taken by surprise. Please know that there is a community of people out here reading your blog and hoping for your full and permanent recovery. Your writing gives us the strength to go on as we fight this insidious disease. Keep dreaming – we are with you!
Thank you! My heart breaks knowing that there are so many others facing the same terrible disease, but I’m also greatly encouraged by all of the support and kind words I’ve been receiving from my blog. I’m glad to know that my writing makes a difference. Thanks again, and I wish the best for your DD as well.
Stay strong sister. I’m holding you in light.
Thank you for keeping us up to date as I’ve been thinking of you. Between your amazing doctor and the amazing you, you will get through this and back to good health. Hope these latest improvements continue.
Thanks, Janet. I sure hope you’re right.
I am thinking of you and hoping that immunomod treatment breaks this latest heartbreaking trend. ❤️
Thank you, Wendy! I hope so, too.