Welcome, and Thank You!

With all of the new followers joining my blog and social media accounts, I’m going to take this post to welcome you, say thank you, and talk about what’s next…

This month, over 4200 of you read my stories, and as the shy person that I am in “real life,” this is unfathomable. Those who read my extreme OCD story from the other week now know a part of my life that none of my “real-life” friends know—at least, not in such detail.

But what this means is that awareness about Pure-O/Scrupulosity OCD and PANS/PANDAS in adults is spreading, and even my bashful self is incredibly grateful to be a part of that—so, truly, thank you for sharing my posts.

Where do we go from here?

It’s hard to follow up two posts that I’ve wanted to write for many years. I find myself wondering if that was it, and now there’s nothing else to say after chronicling my recovery from PANS on this blog for the past five years. What else is there possibly left to add?

The answer is… A lot.

I’m just getting started. Just because I’m not dealing with PANS in the same ways I was in the beginning doesn’t at all mean it’s time to stop. No, I’m thinking of rolling out some new features on my website here soon.

I’m also looking for guest bloggers, particularly adults and teens with neuroimmune illnesses or mental illnesses or their parents. If you’re interested, leave a comment or send me a message on my Contact page.

In case you don’t know, I’m also writing my first book right now, which is about how I succeeded in college while facing PANS and Lyme and the resulting mental illnesses/disabilities.

I’m planning to release this book in late 2020 or early 2021. I’m about to hit 40,000 words, so you might hear more about it in the coming months. But don’t worry—this blog will never become a vehicle for excessive self-promotion. 😁

What am I going to blog about in the meantime?

Like I mentioned, it seems I’m in a really good place with PANS these days, meaning I no longer have major symptom flares (slight upticks, yes, but actual flares, no). I also don’t struggle seriously with OCD, tics, eating disorders, or anything else that most characterizes the entity that we refer to as “PANS.”

Unfortunately, I’m sick in other ways, but now my symptoms fit best under the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Chronic Lyme umbrella: severe fatigue, flu-like symptoms/swollen glands after exertion, joint pain, headaches, and mood issues bad enough that I need to be on a cocktail of anti-psychotics and mood stabilizers. Thankfully the meds are working well these days, unlike when I was more clearly in the thick of PANS.

All of this is to say that there’s a lot to talk about as a PANS survivor who is still putting her life back together and maybe dealing with flickering embers of a brain that was once completely on-fire. I’m in the cleanup stage when we’re all trying to figure out why some things aren’t quite right and why I apparently have GAD-65 antibodies. My journey to healing is definitely still underway.

Now, a few ideas I’ve considered and/or started writing about:

  • The self-created treatment plan that’s healing my ME/CFS/chronic Lyme
  • Why I decided not to do Rituxan… Yet
  • What IVIG is like [I’ve had more rounds than I remember]
  • Everything you wanted to know about getting a port instead of IV’s
  • What it’s like in an eating disorder treatment center when you have a neuroimmune disease
  • How I do an anti-inflammatory diet without re-triggering my eating disorder
  • What I wish my parents knew during a PANS flare
  • What I wish my professors knew
  • How parents can help adult/teen kids with neuroimmune illness
  • Energy-saving hacks for living with chronic illness

Have any other ideas? Leave a comment and let me know.

But here’s the caveat: I can’t guarantee I’m actually going to write any of the aforementioned posts. 😅 With this blog being a hobby, and the fact I have limited energy and an actual part-time job, I only write about what I feel inspired to write about when I have time and feel up for it. However, I’m going to try to start posting more than my usual once per month.

So, readers new and old, thanks for your continued support. Onwards in this new chapter!

11 thoughts on “Welcome, and Thank You!

  1. I have found your posts reassuring. My daughter is 19 and I’m pretty sure she has been dealing with PANDAS/PANS for the last 14 years. Her OCD drove her to anorexia where she has been in and out of treatment centers that don’t work. Finally this summer we got the diagnosis of streptococcus, lymes, molds, metals, and every other childhood virus she could have. ( too many to list). She started her first IVIG treatment 3 weeks ago and will do her next one in a week. She will do this again before she goes back to college. We haven’t seen any changes yet as she still barely eats. We can’t hold on to her forever, and I hope sending her back to college is the write answer. I’ve had a hard time finding people with her severity of eating disorder. I am so sad she went for so long without help. Thank you for speaking out.

    1. Thank you. I’m glad my posts have been reassuring. In case you didn’t see, 19 is also when I got diagnosed after many years, so I know how hard it can be to deal with that at that age. That’s good to hear that she’s had IVIG! Everyone is different of course, but when the eating disorder gets severe enough, you often have to do some kind of nutritional therapy after you’ve addressed the inflammation component. Your body can get stuck in primal survival methods that have nothing to do with PANS or infection at a certain point, which make eating very difficult. So it can be super helpful to find a dietician who can help you deal with this who is also open to learning about the PANS piece of the puzzle rather than assuming it’s all part of a typical eating disorder. Sometimes it takes a couple of tries to find someone who is a good match, so I hope she can find a dietician at school to help her. And I really hope she starts improving soon and college goes great!

  2. I can totally relate to solving one issue, only to realize that you’re not at the summit, but there’s another hill to climb ahead of you. Stay strong though!

  3. I am looking forward to reading your blogs! As a parent of a teenager with Lyme/Bartonella/PANS, I would live to read about what you wish your parents/teachers knew:). Thank you for spreading expertise and knowledge!

  4. I totally get it. I have MS, chronic pain from an accident 30 years ago and a narcissistic 89 year old mother who can still launch verbally cruel salvos like she did at 39. I’m the youngest of three sisters and closest to my mother. I wear a mitt to catch all her hell. I’m not defined by my pain or my MS or an impossible mother with I swear some still as of yet undiscovered pathologies, but there are days (in succession) when I literally can’t get out of bed.

Share your thoughts. What do you think?