I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well!
To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear. Continue reading “Rituxan and the Waiting Game…”
I’m starting a year of Rituximab infusions.
This is an IV biologic medication that kills your B cells. Yes, I’m wiping out a chunk of my immune system in the middle of a global pandemic. Yes, I’ve just signed on to do this every three months for at least a year. Rituxan is not a medicine you get prescribed unless you’re seriously ill—and apparently I am.
That last part is not exactly news to me, though it’s something I don’t like to admit. My baseline hasn’t met diagnostic criteria for PANS in over two years, meaning my mind is basically fine, some brain fog notwithstanding. Thus, I’m often able to work part-time and enjoy it, and I’m able to be social with my friends virtually—neither of which were so easy when I had classic PANS.
Continue reading “Done Treading Water: Why I’m Really Doing Rituxan This Time”
Last week, I did something wild: I signed myself up for a multi-week professional development program.
I already have so much going on with finishing my book, but I’d applied a while ago to this selective program. So once they accepted me, how could I say no? Besides, I believe it will also indirectly help me with my book by making me structure my days better.
The fact I’m attempting this program is a big deal to me for a lot of reasons, but largely because of what it says about my mental state. For so many years while fighting PANS, I just didn’t have it in me to invest much in myself or my career. On the outside, my professors would praise my efforts because I was successful between flare-ups. On the inside, it was often half-hearted, and I constantly questioned if I even wanted to be in my field anymore or not.
Continue reading “Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick”
As an adult with a neuroimmune condition that most doctors don’t know how to diagnose, let alone treat, all too often, I’ve felt like there was nothing I could do to change their minds. I would bring papers and mention the many fine hospitals that are researching PANS only to be dismissed and gaslighted. Why? Partly due to arrogance or wanting to maintain the status quo. But these behaviors have their root in the “P” being for pediatric, the fact none of the research studies mention adults, and the lack of enough large-scale studies in general.
Have you ever felt alone and frustrated by how little help is available while you watch your life waste away?
Now what if I told you that you could do something tangible that could change the situation? What if I told you there was a way for you to help bring PANS out of the grey area of medicine into which many providers place it? Continue reading “The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS”
After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.
Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?
Continue reading “How I Was Diagnosed with PANS When I Was 19”
Ten days ago, on my actual blogversary, I had a nice 6-year anniversary post planned—the usual reflection on how I started blogging and how much it means to me. And I still stand by my belief that making this website and chronicling my journey through neuroimmune conditions and their psychiatric consequences has been one of the most meaningful things I’ve ever done.
But I somehow could not bring this post in for a landing, which tends to happen when I feel like I have to post something rather than feeling inspired. So I stepped back and thought about what was going on. And now it’s time to be honest… Continue reading “My 6-Year Blogversary, My Greatest Hope, & What’s Next”
Today, I’m thrilled to have a guest blogger, Olivia Cyr. She is seventeen and lives with a few chronic conditions including dysautonomia, OCD, and anxiety. Olivia has been featured on The Mighty, and her perspective as a teenager dealing with these issues is important.
Being a teenager is hard. I don’t think that many would dispute that fact. Between boy/girl drama, friendship struggles, school, teachers, homework, a job for some, and more, teens often don’t get the credit they deserve for juggling all they have.
Continue reading “Guest Blog: The Challenges of Being a Teenager with a Chronic Illness, by Olivia Cyr”
Before I’d even opened my eyes, I knew something was terribly wrong. Every muscle in my body hurt. I was drenched in sweat. My heart was racing. I had an 101º fever.
As I lay there trying to will myself out of bed, my heart-monitor watch went off, warning of a high heart rate. I didn’t think much of it because I had a fever, so of course my heart would be above 100.
But then it kept going off. Again. And again.
Not having it, I rolled over and slapped on my blood pressure cuff. My pulse was 166. Crap crap crap! This was really happening again.
Continue reading “My Disastrous Symptom Flare & How I Plan to Get Out of It”