I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend. I remember thinking, I can’t possibly be sick enough to have Lyme Disease. What am I doing here?
Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”
This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.
After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized. Continue reading “I Did 8 Weeks of IV Steroids for PANS. Here’s What Happened…”
As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells a drop attack.
Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.
As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”
It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. Continue reading “I Lost My Mind… But Haven’t Lost Hope”
The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?
During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.
Serratia marcescens… What in the world is that? An Italian dish? An exotic island town? Neither. It’s the name of a bacteria that you’ve probably never heard of—a bacteria that had taken up residence in my tonsils.
Serratia can be found anywhere, but it thrives in hospitals and in damp spaces like bathrooms. If you see a pink or orangish ring around a drain (such as mine, pictured above), it might be Serratia. Most people never have trouble living near the organism, but in hospital settings, it can cause serious problems. For me, having it in my tonsils was likely an ongoing trigger making my immune system attack my brain.
When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.
Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.
This week marks the one-year anniversary of my blog. To say it’s been an incredible year doesn’t even begin to describe it. I’ve come such a long way since I first started writing about this difficult journey—and so has this blog…
Last June, I’d hit rockbottom. I was in such bad shape and declining so much that I thought I’d die. Although I was otherwise dysfunctional to the point of not being able to walk, not eating, and not being able to speak coherently, I was able to write. In the countless hours my family spent researching PANDAS/PANS on the internet, they’d never found a blog written by a PANS patient. I thought maybe I could change that. I hoped that maybe by sharing my experiences, I could help someone else going through the same thing. So I started a blog.
