4 Things I Learned from 4 Years of Blogging… And an Announcement!

What in the world have I done?!  I thought to myself.

A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen.  I couldn’t believe it finally happened.  I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it.  Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog.  But there was no turning back now.

That was four years ago today: June 20, 2014.

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Back then, I was nineteen years old and losing my mind.  I’d caught mono and Strep in my first year of university and then suddenly developed strange neurological problems and severe mental illness.  No one could figure out what caused my bizarre symptoms…  Until my family read about PANS.

The trouble was this disease called PANS was supposed to be pediatric only.  There was so little information on PANS in adults, and I felt like a freak for thinking I had it at my age.  I was lonely and desperate to find something—anything—written by someone with PANS going through what I was, but it didn’t exist.

And that’s when the wild thought occurred to me… What if I were the one to change this?  What if I started my own blog to help the next person facing PANS?

Thus, The Dreaming Panda was born.

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Can you believe it’s my fourth birthday now?!

Truth be told, I’m one of the quietest people you’ll ever meet, so sharing my secrets for four years on what has now become one of the most popular blogs on PANS/PANDAS is more ironic than you’d ever know.  In fact, because of my personality, whenever I log onto my blog I still think to myself every time: What in the world have I done?

In all honesty, The Dreaming Panda was never supposed to last more than a few months, and I never thought more than a few people would read it anyway.  I always assumed I’d blog through the whole recovery process and then logoff someday forever.  I’d leave behind an account of my journey so that perhaps a handful of souls would find some strength in what I wrote. 

But then something happened…

After a couple of months, the emails from other lonely PANS patients and desperate parents came rolling in.  People told me that my writing had touched them and given them hope.  My posts were shared dozens and dozens of times, and I got emails from all over the world. 

Before I knew it, I didn’t just have a growing blog—I had a community of friends.

When I started, I wasn’t sure anyone would connect with a nameless, faceless stranger, yet many of you have poured your hearts out to me, sharing your own secrets and struggles. Moreover, the kind comments, emails, and suggestions you all have sent have meant the world to me, and they’re sometimes the difference between a horrible day and the best day of the week—not to mention that a couple of you were the ones who helped me figure out that I had Lyme.

I’d like to thank you all for everything.

The last four years since my official PANS diagnosis, and the ensuing plethora of treatments, has been far more difficult than anything I could’ve imagined, but blogging has given me a sense of purpose that keeps me going.  There are four things I’ve learned in particular over these last four years, and maybe you’ll find them useful, too:

1) Your life matters, even if you think it doesn’t.

There are times when I’m not sure my life is worth the suffering, but when I think about the people that I’ve apparently touched by sharing my journey, I realize none of it has been in vain.  If I’ve helped just one person get through a dark hour, I feel like I’ve made the world just a little bit better. And then I realize there are more people that I can help, so I keep going.

2) Sharing ourselves helps us heal.

Everyone with PANS, Lyme, mental illness, or any chronic condition is on a difficult road, and I believe that sharing our struggles with each other and walking together is essential for healing.  Our unique journeys can seem isolating, but it’s within this loneliness that we find community.

3) You’re never as alone as you think.

Whenever I hesitate to share a particularly personal post for fear that no one else will understand, I’m always stunned that these often turn out to be the posts others relate to the most.  If you think you’re the only one who feels a certain way about something… You’re probably wrong.

4) Telling your story is more than just catharticit can help others, too.

Although I’m going to stay anonymous, sharing my experiences through writing has shown me that opening up just a little bit may not only improve one’s own life, but perhaps the lives of others.  Genuineness is the foundation for successful human connectionseven anonymous ones.

So what’s next for this blog?

Don’t worryI’ve decided to keep it going at least until I’m well, like I’ve always said I would.  However, I’ll probably keep posting only every two weeks from now on, and that’s because I’ve started something even bigger than this blog:

I’m writing a book!!!

Yes, I’ve tossed around the idea of a book every year, but now it’s finally happening for real.

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I’m writing an entertaining guidebook for college students with chronic illnesses and disabilities, peppered with memoirs of both my successful moments and my hilariously cringe-worthy failures to apply my own advice.  I somehow graduated with Highest Honors while fighting PANS and Lyme, and now I want to help others succeed, too.

With words of wisdom on everything from studying with brain fog, to managing flare-ups, to not being “that roommate,” my hope is that my book will inspire and encourage anyone facing illness, disability, or mental health conditions while earning a degree.

And of course, I hope that talking about PANS/Lyme in a (hopefully successful) book will increase awareness and lead to more people getting the help they need.

My manuscript is about a quarter complete, and my goal is to finish by the end of the year.  I’m working on my formal book proposal and searching for publishers right now.  I’d love to see it release next year or in 2020, but I’m willing to wait to find the best match.

In the meantime…

  • I’m planning to keep this blog going.
  • I’m looking for guest-posting opportunities and planning to submit more posts to The Mighty and other sites.
  • I’m slowly writing a magazine article about my journey through PANS/Lyme in the hopes of raising greater awareness.  I’ll submit to a few and see what happens.  I’ve never seen a first-person account of PANS published, and it’s time to change that.
  • I’m starting grad school—at least, if I stay well enough.  This will be my main priority, but I want to keep up these projects so I have another outlet.
  • Mainly, I’m focusing on recovering.  I have days when I’m 95% better PANS-wise, and I can hardly believe how well my brain functions.  I’m now the best I’ve been since last fall’s catastrophic relapse, but I continue to struggle a great deal with fatigue/post-exertion malaise. I’ve started seeing an integrative doctor, so I’m hoping things will get even better soon.

So once again, I’d like to thank all of you for coming along for the ride.

I’m still not sure what in the world all of this writing will mean for my life’s trajectory, because I actually do have a whole other life outside of PANS, Lyme, and The Dreaming Panda.  (Inevitably, you’ll soon learn more about it if you read my book.)  I don’t have all the answers right now, but I know I’m on the right path.  Thanks for walking alongside me.


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8 thoughts on “4 Things I Learned from 4 Years of Blogging… And an Announcement!

  1. Awesome post and congrats on your anniversary and your next steps forward! I started blogging out of the same need to help others after not being able to find help myself – it’s the best thing we can do with our knowledge and insight x Lowen @ livingpositivelywithdisability.com

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  2. I’m so incredibly thankful for your blog.  I’ve never been a blog follower but somehow I can across yours.  Thank God!!  My daughter has Lyme and we believe PANS.  We’ve been through the gamet of doctors (like everyone else in our situation).  We are currently seeing a Functional Neuorlogical Chiropractor that believes autoimmune diseases damage the right brain.  He treats with physical therapy using cross body exercises and some computer games/exercises.  We’ve seen some improvements and we know this will help our daughter but we have an appointment with another doctor MD who treats PANS.  Our current doctor is focusing on reconnecting left & right brain stuff (too technical for me to understand more than that).  And he talks about getting rid of the inflammation but we think iv steroids might be necessary with the current treatment.   The blog you posted about lack of time management is the one that really sticks in my mind.  This along with OCD are the most frustrating symptoms.  My daughter, Abby, was diagnosed with Lyme disease when she was 12, she was treated with antibiotics for 18 months plus supplements.  We believe she was cured after that (she was diagnosed acute).  Unfortunately 6-9 months after treatment symptoms came back.  We’ve been trying different treatments since then that haven’t worked (pulsar machine TONS of detox & supplements, mold remediation etc). Abby will be 16 in August but she acts much younger, I believe, because she’s never really grown up since her diagnosis.   I appreciate you sharing what it’s been like for you going through your flare ups etc.  Abby isn’t able to communicate what she’s thinking or feeling.  You have kind of been her voice to us.  What you’ve said is what we’ve seen in Abby. So happy blog birthday!!  Thanks so much! Emily

    Sent from Yahoo Mail on Android

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    1. Hi Emily, thank you so much for sharing this lovely comment. I’m so glad that my blog has been so helpful for you, but I’m sorry that you all have been through so much. I can only imagine how difficult it must be to go through all of that at her age. Time management was a huge problem for years, but if it helps to know, it’s gotten so much better with treatment. I definitely feel like I’m younger, too, because it’s hard to think about “normal” teen/adult things when you’re so sick (but then in other ways I feel so much older). Most adults with PANS I’ve spoken with are the same way, so she’s not alone in that. I just hate that it’s so hard to find doctors and figure out what treatments to try… IV steroids can certainly be very good at knocking down inflammation and decreasing symptoms. I hope the new MD will have some insights and solutions. Good luck, and thanks so much for following my blog!

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