Guest Post: How Illness Made Me an Artist

By Lauren Watt

Six-and-a-half years ago, when I was 14, I got sick… I got sick, and I never got better. 

It began with a sudden onset of Mast Cell Activation Syndrome that led to me carrying an EpiPen everywhere. Everyday foods, smells, and chemicals caused me to flush, break out in hives, become nauseous and fatigued, have tachycardia, and in more serious episodes experience throat tightness and lightheadedness. Then five months after the severe MCAS began, I contracted a Urinary Tract Infection. I recovered from the UTI, but I was left permanently worse. We didn’t know it then, but the UTI had awakened my immune system to latent infections of Babesia and Bartonella.

After the UTI, new symptoms kept popping up every week. My hair began to thin, my joints ached, my head constantly hurt, I was often nauseated, brain fog set in, and I was exhausted and slept for hours every day. I became homebound and couldn’t attend school. I cried when it became obvious that my illness wasn’t going away in a matter of weeks or months, and I was only growing worse. I cried when the things I loved most, like choir, competitive public speaking, and mornings outside caring for my chickens and rabbits were no longer possible. 

I needed an outlet. I needed something I could do when there was so much I couldn’t enjoy—not even books, movies, or music. That’s when friends encouraged me to pursue adult coloring and gave me the supplies. It became an escape for me. I colored beautiful scenes, and I pictured myself in them. It was a needed distraction from my symptoms, and finishing a page gave me a sense of accomplishment.

Drawing in bed in 2020

I kept coloring until I couldn’t. My health soon declined to the point I was mostly bedridden, constantly nauseated, even weaker and more fatigued, and experiencing pain and swelling in hands—coloring became impossible. Things kept going from bad to worse. I was finally diagnosed with bartonellosis, after one year of being ill, but the antibiotic treatment and herxing were brutal. Eventually, I was left so weak that I was unable to even wash my own hair, and my digestion was so poor that I could only eat pureed foods and smoothies.

For years, the primary way I passed my time was looking at pictures. I was bedridden and used my phone to do Google image searches of animals, plants, and landscapes. It was a way to distract myself from the hell I was living. I cried almost every morning because I didn’t want to face another day of being in my body that felt like a prison cell. Looking at pretty pictures helped me to find some beauty and to think about things that were lovely, pure, and admirable when my thoughts could easily slip into despair. 

Finally, I began to gradually improve in 2019, and in 2020, I regained more strength and mental focus. I decided to start drawing, so my parents gifted me with colored pencils so that I could draw in bed. Draw I did, and much of my inspiration came from the pictures I’d spent hours looking at before. I drew pictures of landscapes, flowers, and birds, and my family made some of them into cards. Sometimes I could only draw for fifteen minutes at a time, but it gave me a sense of accomplishment and helped take my mind off my illness.

The completed picture from above

Then in 2021, a breakthrough came when I was diagnosed with babesosis. I’ve been treating Babesia for one year now, and I have made so much progress. When I’m not majorly herxing, I can take one mile walks outside and spend hours each day out of bed writing and painting. In October, I started a small online business, Lauren’s Easel, so that I could share my art with others and hopefully bring a little joy to someone else with my creations.

As an artist, I see life with a lens of looking for beauty in even the most broken things. Isn’t that what a mosaic consists of? And I try to live my broken life in a way that makes a beautiful mosaic, a mosaic that wouldn’t exist if illness hadn’t shattered the life I once knew. That mosaic currently looks like creating art for my online store, blogging, and encouraging others with chronic conditions. 

It takes courage to wake up each day, to realize that illness is not just some bad dream, and to find beauty and to try to shape the best life possible in the circumstances that I’ve been given, but it is possible. Life has thrown some very hard things at me, but looking back, I realize without chronic babesosis and bartonellosis, I wouldn’t be who I am today. I wouldn’t be an artist and a blogger, and I’m excited to see where the journey will lead to next.

So, my friend, please don’t give up. Try to find something you can do now, no matter how sick you are. It will help take your mind off your illness, lift your spirits a little, and might just lead to a defining moment.

February 2021 with a finished painting.

Thank you to Lauren for sharing her story! I, too, have found that having an outlet makes a huge difference in being able to cope with my illness. You can read more about Lauren, see more of her work, and buy her art from her store on her website, Lauren’s Easel.

The Bad Guys Are After Me: PANS-Related PTSD in Pandemic Times

It was 2:30 in the morning when I awoke to a knock on my door and opened my eyes to see a man in black standing over me. My heart pounding, my sheets drenched in sweat, I tried to scream, but all that came out was barely a mumble.

And then he was gone.

It wasn’t real… Or was it? I sat up and shone a flashlight all around my bed, and in my closet and bathroom looking for the intruder. How could I be sure it was a hallucination when I really did see a person in my room? How was I supposed to get back to sleep when I wasn’t 100% sure the whole thing didn’t happen?

For the last couple of months, I’ve had the same dream-hallucination over and over and over again: a knock on my door and a bad guy coming into my room. Sometimes, I wake myself up screaming, sitting bolt upright in bed. Sometimes, a knock on my door or a loud bang awakens me (which my family never hears, so I know it’s in my head). Worse, I sometimes have nights where this dream happens two or three or four times.

Any nightmare is by definition disturbing and can cause someone to wake up feeling upset. A nightmare that seems realistic is even worse. But a nightmare that continues into a hypnopompic hallucination is downright terrifying. What makes something a hypnopompic hallucination versus a nightmare is that you’re perceiving things that aren’t there after you’ve started waking up. Thus, they can seem very real.

And for me, knowing that, based on recent trends, there’s at least a 50% chance this nightmare/hallucination will happen that night… Well, sometimes I put off going to bed because of it.

Over the years, vivid nightmares and nighttime hallucinations have usually been a symptom of a PANS relapse for me. I used to go months between hallucinations, so if one happened again, I’d know a flare was coming. The scariest one I had (in the middle of a flare) a few years ago was waking up to a giant bear with sharp teeth and glowing green eyes snarling at me by my bed.

After a hallucination, I often feel the need to check my room for intruders once I’m fully awake, even though I know the person is almost certainly not real. My OCD loves to come in to say, “But what if it is real this time?” And then: “Are you sure you checked everywhere?” So sometimes I have to go through the checking process again. During the day, I have the insight and willpower to ignore these types of OCD thoughts, but in the middle of the night, it’s really difficult.

I’ve been told by therapists that I have PTSD as a result of my medical ordeals.

I’ve worked through some of it in therapy, but I don’t know if I’ll ever get over the feeling of being assaulted by my own body, my illness mangling my brain and mind, stripping away who I thought I was. In some ways, it was almost more traumatic when I got better, because then I regained the insight to understand how far gone I’d mentally been. Even after writing ~250,000 words on my blog and in my upcoming book, I still don’t think I’ve fully captured the terror that is PANS, or Basal Ganglia Encephalitis.

I believe the recurring nightmare is a metaphor for my encephalitis. The knock on my door is the virus that triggered it in the first place, and the bad guy is the rogue antibodies that came into my brain. The antibodies assaulted my mind by way of my brain, just like a bad guy attacking someone in their own bed. I spent years trying to recover and heal from the damage of my illness. No one should be surprised I’m a little haunted.

I’d had a long stretch without the nightmares, until after I had a flare last month. They didn’t happen during the flare––only after it, when I had to sit with the idea that the bad guys had visited my brain yet again. Fortunately, a few days of Prednisone completely calmed the symptoms of the flare themselves. But steroids don’t do anything for emotional distress that isn’t directly caused by inflammation.

I had a couple of good weeks recently without nightmares…

But now the dreams have started up again.

Watching COVID cases skyrocket due to the new variant, it feels like the bad guys are coming for me. Some people are even saying getting infected is “inevitable.” The bad guys are coming no matter what I do, I think to myself. They’re just waiting for me to get sick so they can come kidnap me again.

The other day, I found myself wondering why I was having nightmares again and also feeling a strange sense of impending doom. Was this another flare? But then I realized… There’s been an effing global pandemic for two years, and things are about to get really bad again. And for two years, I’ve had to watch and listen to people say they don’t care if people like me get sick and die. I’ve had to hear that I’m an acceptable casualty because someone’s “right” to not wear a piece of cloth is more important.

Why am I so anxious about getting COVID? I likely didn’t mount as robust a response to the vaccine as a healthy person, although I finally made some antibodies after a third shot in September. The fact I already have Myalgic E. and dysautonomia puts me at high risk for Long-COVID and a potentially permanent worsening of my conditions. I have multiple years of experience where I get a mild or asymptomatic virus, it triggers the bad-guy antibodies, and I end up with debilitating neurological symptoms for months or years after. Hopefully being triple-vaccinated makes this less likely, but there’s not enough data to know for sure. I already barely function well enough to maintain a career. If I get any worse, I could lose it all.

But I try not to think about the pandemic too much.

My family is extremely fortunate that we can stay home. We’re pretty much not going anywhere for the next two months, or however long it is until the new treatments are widely available. No gatherings, and minimal trips to the store. The windows and doors are figuratively barred… Still, I worry that somehow the bad guys will find their way into the house.

But you know what? Right now, the bad guys in my room really are just a bad dream. They’re not here. I’m safe and as healthy as I can be as someone with M.E.. I have to focus on the here and now, and just take it one day at a time. I don’t have to get through the next two months all at once. All I have to do is what’s next, today.

I think we can all agree that ending 2021 with the worst COVID surge yet is not the kind of “bang” on which any of us wanted to end the year. But I hope you all are able to take every precaution available to keep the bad guys out of your homes as well. Let’s all hope and pray that 2022 is the year when we can all put the nightmare of COVID behind us. Let’s hope that the silver lining becomes better treatments for neuroimmune and post-infectious illnesses like PANS, encephalitis, ME, and Lyme. I believe this will be the case. We just have to keep hanging in there, taking precautions, and not losing hope for better times ahead.


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I’m Having a PANS Flare. Here’s What It’s Like…

SPLAT. Suddenly, I hit the floor.

Without warning, my legs completely gave out, as if they forgot how to listen to my brain for a split second.

Had this been the first time this ever happened, it would be disturbing enough. But this has happened thousands of times over the years, and that’s what makes it even more disturbing. It’s never quite been settled if I’m having atonic seizures or some kind of autoimmune neuropathy or something else. But one thing is for sure: I only get drop attacks when my brain is inflamed.

I got back up right away, and tried to brush off the experience. Sure, I’d also had some mood issues recently, which are one of my first signs of a PANS flare. But a higher dose of Lamictal had taken care of the moods, so maybe it was something else. I actually thought the drop attack from a couple of days ago was just a fluke… Until today.

Continue reading “I’m Having a PANS Flare. Here’s What It’s Like…”

PANS/PANDAS Awareness Day 2021: Top Posts and Resources to Share

Tomorrow, October 9th, is PANDAS Awareness Day.

Each year, it seems like parents lead the conversation. Some of this is because many who live with PANS are too young or too incapacitated to do it themselves. And I am so grateful for parents’ incredible efforts in raising awareness for this devastating illness––please keep it up. However, in order to be most effective, the conversation on awareness needs to center on what it’s like for the patients who actually live with the condition. We, the patients, are the ones who need the cures, so our voices should be amplified when possible.

I encourage all of you to not only post stories from parents’ perspectives tomorrow, but to also share stories from people who have lived with this condition themselves. I have compiled a list of what I think are my best advocacy essays and top posts on what PANS/PANDAS is a like, a guest post by another adult with PANS, and the Neuroimmune Foundation’s collection of patient stories. Please consider sharing at least one of these on your social media:

Why Ignoring Adults with PANS Hurts Everybody

Dear Sick, Scared 2015 Me: A Letter to Someone Whose Illness Uprooted Their Life

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

These 3 Myths About PANS Are Ruining Lives

Why PANS Awareness Saves Lives

How PANS Really Feels

Why Therapy Isn’t Enough When You Have OCD and PANS/PANDAS

I Woke Up in a Body I Didn’t Recognize: Living with Involuntary Movements

Special Guest Interview with Author and PANS Survivor Madeline Dyer

Neuroimmune Foundation Blog: In Our Own Words


Additional Info on PANS/PANDAS

ASPIRE: What Are PANS & PANDAS?

ASPIRE: Diagnosing PANS & PANDAS (Scroll down for suggested labs)

Neuroimmune Foundation: Resources to Share with Your Doctor

The Dreaming Panda Blog: Resources, Support Groups, and Organizations


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A Confession… And Why I Need Your Advice

For the last few months, every time it gets close to the end of the month, I tell myself I’m going to have a post ready before the wee hours of the morning of the final day. I tell myself I need to sit down and come up with something to say so I don’t have to stay up late trying to squeeze out some words.

Yet every month so far, including tonight, it’s gotten to be the last day of the month, and I’m scrambling to post something before midnight so as not to break a seven-year streak of posting on this blog every month.

I could have stopped blogging years ago. When I started writing on here in 2014 around the time I was diagnosed with PANS, it was never supposed to last more than a few months. I figured I would stop writing when I got better, and surely I was going to be better in a few months, and then go on as if nothing had ever happened… Right? Wrong, very wrong. As it turns out, you don’t just undue eight years of brain inflammation with a single round of IVIG. Healing a brain is often a long and complicated process.

But eventually I reached a point where I stopped having serious flare-ups. It only took four years, three rounds of high-dose IVIG, eight rounds of low-dose IVIG, ten rounds of high-dose IV steroids, a tonsillectomy, intensive outpatient therapy, psych meds, and more perseverance than I knew I had!

Now it’s been three years since I had to break out the Prednisone to deal with a flare. I rarely get “micro flares” that cause a few old symptoms, but I manage with Alleve, antibiotics, and/or anti-histamines depending on what set it off. And then I go on as if it never happened. Then I go back to work the next day and carry on with life as usual… Sometimes it’s staggering to think it was only four years ago when I had brain inflammation so intense that I had to do nine rounds of IV steroids to stop the autoimmune attack––and then spent eight months healing from the brain damage.

As I go about my life working in my chosen field now, it all seems like a lifetime ago. I used to wonder if I would ever feel like myself again after my brain healed, and I can finally say that I do. And maybe that’s why it can be so difficult to grasp anymore the perpetual trauma of PANS that I once existed in for all those years.

So what about this blog?

All of this is to say that I’m feeling more and more distance between me and PANS, and that’s a really good thing. Yet here I am, the author of the #1 PANS Blog on the web. I have a platform that helps people. I still get more messages than I can answer efficiently, many from readers thanking me for having this blog. So every month, I log back on to post in the hopes I can come up with something I haven’t already said in the 150,000 words written on this blog so far.

And today, I think I’ve finally failed to have anything new to say. So I’m finally confessing the writer’s block I’ve had for quite some time now.

However, calling it “writer’s block” is ironic when I have a 93,000-word manuscript sitting on the table downstairs, most of which I wrote in the last year. Yes, I recently completed my self-help guide/memoir on succeeding in college with a chronic illness, and the plan is to release it in late spring of 2022! There is no book like it on the market, and I think it will offer some much-needed hope to everyone out there with an illness or disability that makes them question if they can get through college or not.

I won’t say anything else about my book for now, but I mention it because I might only share a few more posts on this blog, unless I can come up with more to say that I haven’t said already. I plan to continue posting on here at least once a month until the book comes out, but then I will probably switch to a different platform after that. I may occasionally post something on here once in a while after that point, though, but it may not be every month like it is now. Basically, this blog may be winding down, but my writing career and advocacy work have only just begun. It’s actually a really exciting time, and I hope this book will help bring neuroimmune disorders more into the mainstream.

In the meantime, I need your input…

With possibly only a few posts remaining on here, I want to make them count. I’d like to know:

What keeps you reading my blog after all these years? And what would you like to see me talk about next?

I want to thank all of you who have been reading my blog over the years for all of your support. It has meant so much and sometimes been the main thing keeping me fighting the good fight. Without you all, this book would never have happened. So thank you, from the bottom of my heart. I hope you will continue with me through the next part of my writing journey both on this blog and in my book!

Be sure to let me know what you want me to write about next in the comments…

Grad School Round 2: Conquering the Ghosts of PANS Past

A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!

As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.

But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.

Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.

But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.

Homework

If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:

Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.

However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.

To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.

But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.

Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.

Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.

Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.

Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.

It’s no wonder that so many things related to that time in my life will still evoke a panic attack.

Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!

Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.

There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.

Expectations vs. Reality: Why “Different” Doesn’t Mean Worse

A few weeks ago, I became the last of the adult kids in the house. And now it’s just me and my parents. Just me, the disabled and sick 26 year-old, and my parents, whose almost-retirement years I can’t help but feel guilty for fifth-wheeling sometimes.

My friends are getting married and having babies. My friends are working jobs full-time, some of which are dream jobs and some of which they hate. My friends can do “normal” things, like maintain their own apartments, go to the store, and go on hikes in their free time. And then there’s me. I live with family and haven’t been able to go on a proper walk in over two years. I just lost an entire week of work because I was in another ME crash that left me too sick and weak to sit up. I might like to find a partner someday, but if I’m honest, I worry no one will want me if I stay this sick.

Every time I have a bad ME crash, all of my worst fears about my future and deepest insecurities about the present come rushing back. In the hours when I’m in pain all over my body, completely exhausted, and hooked up to an IV, I start to think maybe this is all my life will ever be. I forget everything I’ve accomplished and everything I am apart from my illness––and I am so many things besides sick.

Continue reading “Expectations vs. Reality: Why “Different” Doesn’t Mean Worse”

Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring

It was a Saturday morning when something in me snapped. I had no strength to get out of bed, and even if I did, it seemed like nothing I would do today would matter. The massive weight of the numbness pinned me to the sheets, and tears began to flow. But what was I upset about? I had no idea. All I knew was that I couldn’t stop, and this meant the all-too-familiar brain inflammation-induced depression was back.

In hindsight, there were signs all week that this was coming. I’d had a hard time staying on task with my work despite how much I enjoyed it. I’d had more difficulty than usual getting started on anything. Yesterday, it had gotten to the point where I realized it would be better to take a day off from productivity rather than slog my way through hours of frustration.

And yesterday, something else had happened: my seasonal allergies returned in full force.

Continue reading “Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring”

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…