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”

The Questions No One Should Have to Ask: Life on the Verge of Relapse

As I opened my eyes to the morning sunlight peeking through my blinds, for a feel blissful seconds, I forgot the many reasons I shouldn’t feel as calm as I did in that moment.  But not a minute later, it all came rushing back, and my stomach did a somersault.

I rolled over and saw a missed call from my infusion pharmacy, and all at once I remembered the horrible quandary I’m in.  I remembered the unfortunate events that led to it.  And worst of all, I remembered that losing access to monthly IVIG treatments could mean I was on the verge of a relapse that would make me lose my mind. Continue reading “The Questions No One Should Have to Ask: Life on the Verge of Relapse”

Attacked, Trapped, Tormented: My War with PANS & Anorexia

“Do I have to take my shoes off?”

I asked my psychiatrist in a trembling voice as I stared at the floor, too ashamed to make eye contact.

My hands were shaking as I reached for my shoestrings, because I already knew the answer, and I knew what would happen the moment my doctor saw the double-digit number on the scale… Continue reading “Attacked, Trapped, Tormented: My War with PANS & Anorexia”

Why I Quit Therapy

Dissecting and discussing every meal isn’t helping

This week, I quit therapy.

Wait a minute… I was nearing hospitalization for anorexia just seven months ago, and my psychiatrist recently suggested intensive outpatient was reasonable, and now I’m not even addressing it at all?

Continue reading “Why I Quit Therapy”

Why I’m Struggling through College… For the 8th Time

With PANS and Lyme, homework isn't the only thing making college so difficult.
With PANS/Lyme, homework is far from the only reason college is so difficult…

It was with a truckload of emotions that I pulled up to my apartment last Monday night, before my eighth semester of college. While being at school means seeing my friends again and keeping busy with interesting things, it also usually means grinding myself into pieces as I try to get all the required work done in the midst of PANS and Lyme. College isn’t easy for anyone, but trying to do it with these chronic illnesses can make it a hundred times worse.

Continue reading “Why I’m Struggling through College… For the 8th Time”

Why I’m Finally Choosing Recovery

I'm choosing recovery... One day and one meal at a time
I’m choosing recovery… One day and one meal at a time

Anorexia nervosa: two words that hold an unspeakable amount of pain and torment; an illness that takes over your mind and ravages your body; a disease that kills 5% of its victims; a nightmare that ruins your life; a condition that might happen to other people, but not to me… Until it did.

Continue reading “Why I’m Finally Choosing Recovery”

The PANDAS Games

Does anyone ever win the PANDAS Games?
Does anyone ever win the PANDAS Games?

During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:

Haymitch: No one ever wins the Games… There are survivors. There are no winners.

Continue reading “The PANDAS Games”

Recovery Is Possible!

Sometimes just when you think it's hopeless, you get better!
Sometimes just when you think it’s hopeless, you get better!

Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living my life.

Continue reading “Recovery Is Possible!”

The One Thing I Hate More Than Therapy

Some college kids stockpile liquors, I stockpile nutrition supplements!
Some college kids stockpile liquors, but I stockpile nutrition supplements!

At 93 pounds, I was so miserable and malnourished that I didn’t even know how ill I was. At the time, when I found myself sitting in an infusion chair receiving my third IVIG, I silently wondered to myself what I was doing there. How could I have PANDAS if I wasn’t “that sick”? Why was I getting such a heavy-handed treatment? But with my weight nearing the so-called “starvation” range, many of my organs weren’t working properly anymore. My psychiatrist warned that I’d be in the hospital soon.

Continue reading “The One Thing I Hate More Than Therapy”