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.

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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…

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.

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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.

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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.

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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”

The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS

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”

My 6-Year Blogversary, My Greatest Hope, & What’s Next

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”

My Disastrous Symptom Flare & How I Plan to Get Out of It

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.

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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”