Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.

Community and Connection in Chronic Illness

Happy Tuesday, friends! I’m trying to get into a Tuesday/Thursday/Saturday publishing cycle, instead of posting at random times throughout the week. This is the second post in that effort.


Do you have your people? The ones who help you reset and keep things in perspective? Over the weekend I went to my first narcolepsy support group meeting since moving to CT and it gave me a renewed sense of hope and community.  There were folks at the meeting who were diagnosed just this month, after decades of confusion and questioning. I remember 10 months ago when that was me and for the first time in years I felt like I had a future.

Support groups can be lifesavers for many following their diagnosis day.  My diagnosis day was a day of celebration but the elation was soon followed by anger, grief, and a sense of loss.  Not to mention complete overwhelm as my doctor gave me information about possible therapies which led to a dark research spiral into the bowels of the internet.  I had so many questions about, really, EVERYTHING, and I was lucky to be able to meet other people with narcolepsy face-to-face within two months of my diagnosis to dig into all of the things that I wanted to know.  That first support group meeting was filled with compassion, hugs, and so many tears.  The people who sat around the table were fighting the same fight and we finished each others sentences.  I felt safe and I felt SEEN.  I felt worthy, and I knew that these people believed me.

No matter where you are on your journey – diagnosed, undiagnosed, chronic or acute illness – this is your weekly reminder that you are worthy and deserving of connection.  The diagnosis journeys that so many of us are on can take a serious toll on our sense of self worth and on our sense of belonging. The medical profession has a lot of work to do when it comes to listening to patients’ stories and trusting what we know about our own bodies.  It feels HORRIBLE when the doctor reads your test results and exclaims that “you are perfectly healthy, there’s nowhere else to go from here.”

Regardless of how your most recent doctor visit went, you are fabulous, you are worthy, you are deserving. And I believe you.

I know that not everybody has the opportunity to meet with a support group face-to-face.  Good thing there are alternatives!  I love this article about social media as therapy, written by my friend Elle on her website www.falling-asleep.com. Below are links to a few other websites that have resources for those with narcolepsy and other chronic illness.

Visit the Resources page for more ideas. Note that you might see diminishing returns to your investment in support communities. This is a thoughtful article on the possible downsides of support groups.


These recommendations are not meant to substitute for care from a licensed physician and/or therapist and for medication.

One Year of curious sparkle dirt

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” -Martin Luther King, Jr.

Flashback to January 2017. I knew I wanted to start a blog and I knew that my first post was going to be about “Hidden Figures.” What I didn’t know was EVERYTHING ELSE.

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I hadn’t been diagnosed with narcolepsy but I knew my grad school situation was untenable. I couldn’t hold down a 9-5 job 5 days/week so I took up substitute teaching and hoped that plus a record of my writing would be “good enough” for a future employer if I ever sorted out my health issues.

I had no idea that I would share my mental health history with the entire internet, post style files for all to see, and publicly embrace my maker personality and love of fashion in the form of a freakin’ accessories brand. OH! And go to Capitol Hill. This time last year I was at rock bottom. I thought things couldn’t get any worse so why not just put all of me out there? Because if one person read my blog, got a sleep study, and found an answer sooner than I did, it would all be worth it. (Sleep posts here.) I could never have guessed in a million years that 2017 would be the best year of my life. (Aside from that year I met my husband!)

Thank you for coming along for the ride! And for putting up with these gratitude recap posts every month because every month last year was a major milestone for me and I’m still processing!

Love,

The Narcolepsy Princess

My Word of the Year

Last Year

2017 was a year of adventure and abundant creativity, but also one of intense anger, confusion, and betrayal.  My New Year’s Resolution was to reduce food waste and hell if that didn’t fade out of view by the second grocery shopping trip of January.

And then narcolepsy. I tried to fight against my labels but spiraled into denial when I compared myself, my accomplishments, and my potential to that of a fictitious non-narcoleptic version of myself.  Spoiler alert: she has better time management skills, organizational skills, more wakefulness, and OH YEAH! She doesn’t exist.  I felt betrayed by the medical profession and the three neurologists who gave me a full workup and declared that I was perfectly healthy.  I’ve fantasized about dropping burning piles of poo on the doorsteps of many doctors; not just those three neurologists, but also the know-it-all general practitioners, allergists, cardiologists, psychiatrists, psychologists, etc. who didn’t have the guts to say “Something’s wrong, but I don’t know the answer.”  Apparently I still have some anger to work through.

The Diagnosis threw me into an identity crisis and I think that crisis ironically came from me realizing that I knew more about myself than I thought I did.  I was finally able to look at my narrative about myself and see clearly the passages that others had added.  I wasn’t lazy or unmotivated or stupid.  I was clinically sleepy beyond reason which is what my body had been telling me and what I had been telling the doctors.  Over the years I let them convince me that I was wrong, and now, with The Diagnosis in hand, I had control.  For the first time in my life I let my creativity take the reigns and I launched an accessories brand – sleep&sparkle – that challenged me in ways that I hadn’t been challenged before, but also used many of my strengths and fed a passion for sartorial expression which I kept deep inside of me as soon as I graduated from high school.  Somehow, The Diagnosis put me in touch with the deepest parts of myself and empowered me to believe that I deserved to be happy and to create a life doing something that I loved.  My husband and grandma had been telling me this for years, but until The Diagnosis, their words might as well have been in a foreign language.

This Year

In 2018 I’m ditching the resolutions and opting for a WORD.  A word that will be the lens through which I filter my thoughts and actions.  A word that will push me outside of my comfort zone while also pushing me in the direction I want to go.  My word for 2018 is EMBRACE.  I fought it for weeks in December until I finally caved and realized that my resistance was a serious indicator of how much I needed this word.  I was hoping for something bigger that set off fireworks and felt exceptional like BRAVE or FIERCE or PRESENT or INQUISITIVE, but I kept coming back to my frustration with my sleepiness, my inability to accept good things that were happening to me and because of me, and my fear that I would always be angry and bitter about The FUCKING Diagnosis.

“Why am I so mean to myself? Why can’t I accept who I am, what I am, how I am?  Why can’t I EMBRACE this beautiful thing called life that I’m working so hard to make but can’t seem to appreciate?”  Hence, EMBRACE.

The work of this year is to EMBRACE all of these things and so much more.  It is to EMBRACE my weaknesses and failures but even more importantly my strengths and successes.  It is to EMBRACE my anger and bitterness while also EMBRACING my creativity, my enthusiasm, and that I am more than my story and my circumstances.  It is to EMBRACE the opportunities and the relationships that make my heart happy.  It is to EMBRACE me, the way that my grandma and husband did years ago.

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Bonne année, my friends!


What are your resolutions, words, ideas, as you enter 2018?  Or do you opt for nothing at all?

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.

People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.

I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.