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!

(I do think it took more treatments for me to get better than for others because I hadn’t addressed one of my main triggers: severe allergies. So don’t be discouraged if you’re reading this and new to your journey. Not everyone has as complicated a journey as I have had. The most important thing is to chase down all potential triggers and address them. And use every possible tool at your disposal.)

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…

7 thoughts on “A Confession… And Why I Need Your Advice

  1. I just found your blog—so I actually haven’t been reading for years, only since today! But I’m a college student with similar chronic health issues and I felt a huge rush of joy hearing what your manuscript is about. I imagine this has taken so much energy and time to write…and people like me will be so absolutely grateful for it! Good luck with your writers block!

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  2. This was so relatable omg. Tonsilectomy steroids meds IVIG Brain damage im going through that all right now i rememeber emailing you awhile back while i was losing my mind, im almost better now, you mentioned 8 months of brain damage yep i feel you its been same for me. Luv❤️ im glad you are better thanks for encouraging me this last step of my journey its been real fucking hellSent from my Galaxy

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  3. I have been reading your blog for years. You have appreciated that you have been able to share your experience so that I, a mother of a child affected by PANDAS, can have a richer understanding of the effects from the vantage point of the person enduring it. I look forward to reading your upcoming book and I will continue to read your blog for as long as you choose to share it….I have so much gratitude for you sharing your perspective.

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  4. You wrote this years ago, 2014, and it’s our life today.

    “You never see PANDAS coming—it just steals yourself from you while you’re busy living your life. It affects the whole family. My mom has admitted to me that she has some PTSD over what I’ve been through.”

    On April 11th this year it stole my son and I hate it. I’m so sorry you had to go through this all, and still are. I just want you to know that your experience, knowledge and the wisdom you’ve gained is helping others. It’s helping me. I think it’s sinking into my son at some level, I know it is. It gives him hope as well even if he doesn’t realize it now.
    I’m grateful to be able to reach through your previous posts.
    Thank you again 🙂

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  5. I recently found your blog after my 15 year old son was diagnosed with PANS in May of this year. His case has been described by the doctors as “severe” and your blog is the only thing I’ve found that even remotely relates to the journey he is on…we think. You have given me so much hope for what he might still be able to accomplish in his life. I know now that this journey will be long, if not forever. And it sounds relentless and HARD. But we’ve already found out that he has significant allergies affecting his progress. Not only allergic to some of his favorite foods, and environmental allergens but we’ve learned that he’s allergic to some of the most commonly used drug treatments for PANS. Life quite simply has been HELL since January but finally seeing some clarity that things might improve. I hate to hear how much you’ve struggled but every one of your good days, or accomplishments has given me hope. I truly understand why you might need to take a break from it or stop altogether. So no pressure coming from me but just a THANK YOU. Your blog was literally the ONE thing that gave me both understanding of the extreme pain and challenges but also HOPE. Most sincerely,
    Melody

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  6. Wow I’ve been following your blog for quite a while but have rarely read it.

    Honestly, I think you need to purposefully break the streak! I had one period like this where I’d posted every day for something like 50 days. Then once I became conscious of it, it added pressure and messed me and my writing up. So firstly breaking the streak may naturally lead you to think of useful things to write about. But it’s also fine if not. It’s great that you are conscious of not wanting to repeat yourself and post for the sake of it :).

    It’s also great that you’ve written this book and kept it secret! It totally makes sense to sometimes work on a book, sometimes on a blog, or whatever else, without either of them being consistent. You’re still doing what you want to do and doing something useful. I’d like to read the book once it’s released.

    Does your blog have to remain limited to the subject of PANS? I actually always thought your blog name was cool without knowing of the association to PANS. I’m glad that I keep my blog very open-ended, because it’s very freeing and the core benefit I get from it is expression and interaction.

    For instance you could perhaps expand more on this particular obsession with the blogging! 😄

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