My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

Ever since the beginning of the pandemic and the first mention of vaccine development, there has never once been a doubt in my mind about whether or not I would take it when available to me––of course I would get the shot to protect myself and those around me.

That decision may not seem noteworthy to most, but for me, as someone with a neuroimmune condition that can be triggered by vaccines, many people would say I had every reason not to get vaccinated. But considering only the theoretical risk of a vaccine without considering the benefits is short-sighted and irrational.

Continue reading “My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient”

6-Month Rituxan Update

With 6 months since my loading dose of Rituxan, I’m absolutely thrilled to say that I’m physically the best I’ve been in a couple of years. Mentally, I may be the best I’ve ever been since getting sick when I was eleven. 

As I mentioned in my 3-month update post, the progress has been slow but steady. As it was when recovering from PANS, it often has been so slow that I didn’t really know it was happening at all. 

Six months ago, it was all I could do to work for forty or fifty minutes at a time at my desk. I used to feel an overwhelming need to go lie down and would need to rest for at least an hour or two at that point. The most I could manage on the best day without crashing would be two or three hours of work.

This past week, I have been working for 4–8 hours per day without noticing. And just as telling, when I feel I need to take a break, it is mainly a mental break I need. And I feel like I need to get up and walk around and stretch rather than lie down—a completely typical urge for any healthy person I would say.

Mentally, I have come down to the lowest dose of one of my meds in over five years. Another one is the lowest it’s been in two years. But even more notable is that I am so focused on my work and friendships that I often forget that I’m technically sick.

I think I’m getting close to a time when I reveal what I do for a living and maybe even who I am, because it’s getting to a point where only talking about dealing with my illnesses feels completely one-dimensional. But for now I’ll just say that the latest project from my job might be my best work to date. I feel passionate about raising visibility for chronic illness and disability in my field, but I’m trying to figure out how that ties in with this blog.

Recently, I started seeing another specialist, and in looking through my medical records again, I was struck with a sobering realization: I never make it more than a couple of years before some virus or infection completely upends my life. I’m about to be at that two-year mark. 

Having a neuroimmune relapse feels less like a question of if so much as when. And things are going so well that I sometimes feel like surely something bad is about to happen. 

I no longer live in fear of a PANS relapse, but the reality of living with mild-moderate ME and POTS means it feels there’s always a possibility that it could all get worse again. How would I take it if it happened again? Now that I’m establishing myself in my field, I fear it would be even worse if everything fell apart all over again.

But instead of living in fear and worry, I’ve decided to be proactive about doing everything I can to prevent a worsening of my condition. I know I’ll get some pushback for saying this, but for me that has included getting the COVID vaccine. It’s much better to risk a flare and become immune to COVID rather than to take the risk of catching COVID and living with long-term complications. The “1% death rate” some harp about doesn’t even begin to tell the whole story of what’s really at stake. Some are forgetting that even mild viruses can upend a life with a neuroimmune condition.

But you know what? I haven’t flared from the Moderna vaccine so far a month later. We’ll see how the second dose goes, but I feel confident this was the right decision.

I’m planning a longer post in the future about why I chose to get the vaccine, but I just wanted to jump on here and give everyone a quick update that things are going really well.

I’ll probably post more soon about all of this, so stick around…

When What You Fear Most Is the Right Decision…

I’ve done something scary: I re-applied to grad school. 

Two years ago, I left grad school not completely by choice, but out of necessity when I was diagnosed with Myalgic Encephalomyelitis. I’d spent that year in grad school living in a completely new part of the country by myself. I’d had a great assistantship. It was all very hard at times, but I learned so much in that year.

So that summer, to become so ill was shocking and devastating. It didn’t compute that I could no longer drive, put away groceries, walk to the mailbox, or even load the dishwasher by myself anymore. There are no words to describe how devastating it feels to become fully dependent on your family at age 24, after having lived by yourself for five years. 

In the physical and emotional state M.E. put me in, there was absolutely no way I could have safely resumed school.

While in the thick of PANS, I had always pushed myself to go back to college every semester even in the worst of times, even when a lot of me thought I couldn’t possibly make it. I had always powered through, consoling myself by knowing that staying in school meant I was still moving forward in life. College had been my anchor to reality and normalcy when I couldn’t otherwise recognize myself or my life due to the brain inflammation. The structured nature of college kept me going.

But this time, it was different. 

While in the worst of PANS in college (except when it showed up as anorexia), I had retained my physical stamina. In fact, I could run ten miles at times when I struggled to put together a sentence. But now that I had Myalgic E. instead, I was so frail that I couldn’t even do five sit-ups without getting ill for a week afterwards. 

My doctor warned that I would permanently worsen my condition if I tried to go back to grad school. I hadn’t wanted to hear it because I thought I could hang onto grad school the way I hung onto college. 

But one morning, it finally all came to a head when it took me four hours to get out of bed because all I could think about was how overwhelming and impossible it seemed to go back to grad school in three weeks. My mom finally came and dragged me downstairs, but I just started sobbing.

“I can’t go back,” I moaned. “I don’t think I can do it.”

“Then don’t.”

I paused, contemplating such a profound statement. But how could I not go back after I’d aced college even with brain inflammation? How could I give up now? And yet I knew she was right, and I knew how relieved I was to think about not going back.

“Maybe I should just transfer to [state university] next semester so I can keep living here,” I said, almost joking.

“That’s actually a good idea.”

I paused, realizing that transferring in grad school, though unorthodox, was a real possibility. “But how could I go there after I’ve gone to [first grad school]?” I countered. “It won’t be the same.”

“Do you want it to be the same? Do you want to be so depressed about going back that it takes you four hours to get out of bed?”

“But,” I started, staring at the floor. “I worked so hard to get there. For years, I tried to do everything right so I could get in.”

“I know, and you earned it. But [state university] is a great school, too,” Mom reminded me. “I think you know you’d have a great experience there––after you’re well enough.”

That afternoon, I finally accepted my circumstances and informed my university that I would not be returning due to my illness.

The thought of transferring to the state school someday and having more family support during school buoyed me. The idea helped me see that my original grad school didn’t hold the only keys to my future.

After I left grad school, I learned that sometimes the thing you fear and dread the most is exactly what you need to do. 

Over the last two years, there have definitely been plenty of times when I’ve felt sad about leaving grad school unexpectedly and not finishing my degree. However, not being in school opened up lots of professional opportunities I would have had to turn down if I had stayed in grad school. In my time away from school, I feel like I’ve found myself like never before. I work with a start-up part-time and freelance on the side as well, and I love being in industry as opposed to academia.

So why go back?

The way I see it, if I want to make the year of grad school I already did count the most, then I need to finish the master’s degree. I worked my butt off that year, so I want to earn that degree. 

Half a master’s degree doesn’t earn you much. I happened to be in the right place at the right time (and with the right expertise due to undergrad) to get in with this company, but usually, the top people in my field have graduate degrees. Every day, I’m working with people who all have more degrees than I do. I have wonderful colleagues who value me despite my lack of graduate degrees, but down the road, I will have more options with at least a master’s degree.

Moreover, there are some additional training and research opportunities that are unique to academia. It will be great to have the chance to learn more and get even better at what I do.

Why do I think I’m well enough for grad school?

I decided against applying for 2020-21 because I felt like my health wasn’t where I wanted it to be yet. But I’m optimistic about 2021-22 (and beyond).

Recently, I’ve made a lot of progress in my health. My resting heart rate has dropped to the low 70s compared to the 100s a year ago. The other day, I walked a quarter mile and didn’t crash, whereas the same walk a year ago caused a crash for three weeks. Mentally, I’m 70-100% every day. I regularly work for three or four hours without triggering a flare up. I’ve even been able to dramatically reduce two of my three psychotropic medications! 

I am feeling hopeful and starting to dare to imagine being able to do things like go for a walk every day or do my own housework. I believe I can go to grad school part-time without causing harm.

This time will also be different because I can keep living at home. Continuing to have my family’s support will make a huge difference. 

Taking my own advice to heart…

Something I advise in my upcoming self-help memoir on college and chronic illness is that there’s no such thing as the best school in the country. The best school is where you can thrive both as a person and academically. And for any given person, that usually won’t be whatever school U.S. News has ranked the highest this year. 

So now I’m practicing what I preach in realizing that this school really is a better place for me to be at this time.

I struggled at my old school sometimes because everyone was just as good or better than me. On the one hand, it was stimulating to be surrounded by such smart people, but on the other, I would often compare myself and beat myself up for not being the best—and I never was the best.

But this new school has great faculty and is well-respected within my field, even though the name is not as flashy as where I was before. I will always be taken seriously with a degree from there, and I think I may get more attention in the new program. 

Final words of wisdom

April is often when people find out which colleges or grad schools they were accepted to. If you read my blog, you probably have a chronic illness or know someone who does. So I would like to encourage all of you to not be afraid to choose the school where you can be your best self, including health-wise and as a whole person. And also don’t be afraid to go to community college for a year or two so you can have some support from your family and minimize debt (I went myself!).

Don’t go somewhere only because it seems impressive if there’s somewhere else that will be a better fit for you. School is what you make out of it––the opportunities you find and create, the people you meet, and how you spend your time at school. What others think about the name of the school is far less important.

It might seem really scary to take some time off school to work on your health or turn down admission to a particular school, but sometimes it really is the scariest thing that ends up being the right decision…

A 3-Month Post-Rituxan Update

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”

When the Normal Is Extraordinary: Recovery from PANS and the Pandemic

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”

Done Treading Water: Why I’m Really Doing Rituxan This Time

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”

Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick

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”

Remember M.E.: Why I’m Missing Today

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”