Three months since starting the new treatment, Rituxan, I can finally say that I’ve made obvious progress. It’s been anything but linear, and yet I’m more hopeful than I have been in a long time.
You may have noticed I’m not posting on here much, and my Facebook and Twitter profiles also haven’t been updated. But this is actually great news. It means I’m busy living my life and don’t really want to think or write about my illnesses.
However, I know there are people out there wondering how I’m doing, and I don’t want to break my six-year streak of posting once every calendar month. So I’m finally logging back on to give an update.
Continue reading “A 3-Month Post-Rituxan Update”
If there’s anything we can all agree on right now, it’s that nothing is normal at the moment.
Maybe you’ve had to work or do school at home for nine months. Your favorite businesses are closing down. Most everyone is wearing masks on the rare occasions when you brave the grocery store. There is a constant sense of impending doom that we have all become accustomed to, for one reason or another. Continue reading “When the Normal Is Extraordinary: Recovery from PANS and the Pandemic”
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”
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”
Today was Graduation Day for my master’s degree…
But I’m not graduating.
And I don’t mean that I’m not getting an in-person ceremony, the same as the rest of the class of 2020. I mean that I’m not graduating because my illness forced me to leave grad school halfway through a degree.
For years, I had planned on going to grad school, getting a PhD, and then becoming a professor. I liked school and liked the tutoring job I had in college, so I thought teaching and researching at a university was what I wanted. Continue reading “Remember M.E.: Why I’m Missing Today”
“Ups and downs are better than straight down.”
The other day, I found this cryptic message scrawled on a sticky note inside my desk. I had completely forgotten that this used to be one of my favorite sayings in the years when I was still fighting through the brain inflammation from PANS. But now, it’s taken on a whole other level of meaning with my new challenges…
I remember clearly the day I was diagnosed with PANS, and my neurologist said I needed IVIG treatment urgently. It would be an infusion of antibodies from thousands of human donors in an attempt to stop my own autoimmune antibodies from attacking my brain.
Continue reading “Why I’m Getting Better Even When I Think I’m Not”