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.

March for Our Lives

This week’s Bear Bulletin is postponed due to the March for Our Lives.  I am eager to share photos from Austin, and interested in hearing your experiences at marches around the country.March for Our Lives Austin TX

To be honest, this is the first march I went to, I stayed for an hour to take photos, and I missed the speeches. Marching for 3 hours is just not something I can do with narcolepsy. But I’m finally doing well enough on my meds that I can be at the start of the march (on time) and stick around for an hour.

I’ve beat myself up about it and been so ashamed that I’m not pulling my weight. But I’m letting those feelings go. I can show up NOW! I can take and share photos that preserve and amplify the movement.

Photos from marches over the last year are what gave me hope when I was home in bed, groggily scrolling through the ‘gram at 1pm on a Saturday. I hope that these photos fuel your enthusiasm, if something is keeping you from participating the way that you want to.

So here we are! I spent most of my time at the march covered in goosebumps with my eyes watering, as I felt true hope for the first time in months.

The youth in our country have mobilized in a remarkable way and it was an honor to walk alongside them, to see them owning their power, and to see them stepping into their duty as members of a democratic society.  Below are portraits from the march.  They are portraits of kiddos, high schoolers, teachers, grandparents, Texas men, mothers, among so many others who I approached about photographing them and their signs.  There is a fierce, fiery, hope and determination visible on these faces that comes from the frustration of being silenced and vulnerable.  Enough is enough.

Photos in the gallery below show signs without faces.

Did you go to a march? Did you participate in the entire march? What did you think of the speeches? If you manage chronic or mental illness, how does that help or hinder your ability to participate in sociopolitical movements?

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.

Half Birthday

SLEEP&SPARKLE is my life right now. I’m trying to build my brand and grow my company into something fabulous. I’ve cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can be dense sometimes) that if someone hates that I’m writing about building my business they can unfollow me! #revelation

So let’s get on with it!

SLEEP&SPARKLE turned 6 months old yesterday! YESSS! I launched the website on June 5. Life is so good right now. I can’t believe that I’m a person with narcolepsy AND I’m doing something I love. While I didn’t have a diagnosis until this year, I’ve fought sleepiness (and related symptoms) ever since I can remember. I battled to keep them from dictating my life but they did, and until I started Xyrem, I couldn’t envision a future where I would be able to make a living doing something that I love, something that is so stimulating, so creative, so engaging, and so all encompassing. Maybe “make a living” is way too generous a phrase at this point in my company’s life. But I see a path forward for the first time ever. And to be honest, I can see a LOT of paths forward! Whether sleep&sparkle is a success or falls flat, I know that I’m going to be okay.

Happy half birthday to me and SLEEP&SPARKLE!

How have you changed this year?

I was substitute teaching last week and the principal challenged the students to think about how they’ve changed during the school year. I beat myself up a lot for not getting “enough” done, etc., but when I started to reflect on his questions I realized that I’ve done a lot more this past year than I give myself credit for.  And then I realized that his question was on ways that I’ve changed, not things that I’ve done.

This automatic switch is so characteristic of me: my brain goes immediately to valuing the things that I can see or hold in my hands rather than on any changes that I’ve made as a person, despite that being what I value most in others.  I’m still working on articulating why I think the latter is so important but in the meantime I wanted to reflect on my birthday: “how have I changed in the past year?”  I’m going to write about BN and AN (before narcolepsy diagnosis, after narcolepsy diagnosis) and will try to keep the two distinct.

Before Narcolepsy Diagnosis: How did I change between May 2016 and January 2017?

I went on a medical leave of absence from graduate school in August 2016 to recover from knee surgeries and a concussion sustained in an accident.  While on medical leave I prioritized the activities that I loved before graduate school but didn’t have time for, in addition to physical and occupational therapy.  I made space for art and writing, spending time with my grandma, trips to see dear friends, and important-to-me issues of social justice. It required me to be super intentional and to give myself lots of time to recharge and it was SO WORTH IT.

I let myself think about what it would mean to leave grad school after 5 years in my program – a big step for me since I became rabid about a PhD in Economics starting my first year in college – and what types of career paths I could take in life where I could be successful and that would make me look forward to waking up in the morning.  Because apparently the hallmark of a successful life is having a career that makes you look forward to waking up in the morning?  No pressure.  But all joking aside, this was a big one because I thought that if only I absolutely LOVED what I was doing I would be able to bounce out of bed and off to work.  I was really doubting myself and my abilities since I couldn’t think of anything that met that criteria.  I was in therapy – so.much.therapy – trying to figure out the root causes of my laziness, my lack of motivation, and why I couldn’t get out of bed no matter how impeccable my sleep hygiene and how many hours I’ve slept the night before.

There were so many frustrations but come January I was more self-assured in a lot of ways.  I came to be at peace with my varied interests, despite the one dimensional persona I was encouraged to cultivate in my graduate program, and I had an increased sense of self-worth.  Despite all of the work that I did, or perhaps because of the work that I did, I knew that something was still very wrong and that I would not be able to progress in graduate school at an adequate pace if I chose to return at this point.

The big change BN was my self-confidence and self-worth that let me hold a microscope up to decisions I made (e.g. grad school) and be open to taking a new path without blaming myself for past decisions and actions.  This was a big step for me.  All of the work that I did gave me the confidence in myself and in my ability to know that if I questioned grad school and ultimately left, I would find something that supported my physical and emotional health and provided a living*.

Now we’re in the period between BN and AN:

Sure I had changed in all sorts of positive ways but *I’m kind of just kidding about having any confidence in my ability to make a living.  I was struggling with anxiety, depression, motivation, sleepiness, and actually totally insecure about what type of job I would be able to find both with my skill set (math, statistics, economics) and with the flexibility to accommodate my anxiety, depression, lack of motivation, sleepiness…

Close friends and family said “you’re bright, you’re creative, why do you worry about being homeless? Your insecurity is exhausting me.” “Well, ahem, because what you can’t see is that I’m sick as shit.  I sleep all the time and the way I understand the economy is that people generally provide goods and services in exchange for a wage.  So unless I can demo bedding for the rest of my life, I’m screwed.”

My new found self-assuredness, combined with my ever-present focus and persistence, empowered me to get down with vulnerability, find a new doctor, and recommit to finding an answer.  (That was NOT before I started “flipping” clothes from Goodwill on eBay out of desperation for dollars. )

My new primary care physician gave me a holter monitor (a take-home EKG of sorts) to rule out my heart suddenly killing me and with the hope of catching one of my unexplained syncopal episodes.  I thought “this isn’t it, I’m going to fail this test and she’s going to write me off as crazy.”  Oh also she referred me to another doctor, a specialist.  I almost cancelled the appointment with the specialist out of fear of being admonished for my inability to get out of bed because of “depression”.  This was my fourth neurologist.  Another chance to be vulnerable.  I took it. And #jackpot.

One PSG and MSLT (fancy acronymns for “sleep study”) later and I was diagnosed with narcolepsy with cataplexy. I “passed” the test with flying colors. #success

After Narcolepsy Diagnosis: How have I changed since February 2017?

You guys all of this is so new and still settling.

  • I’m taking time to be me, and to slough off the layers of self-disdain that I built up as protection. Funny what we do to protect ourselves, isn’t it? The narcolepsy diagnosis gave me permission to stop beating myself up for “laziness”, “anxiety”, “depression”, “lack of motivation”, “etc.” Though I firmly believe that nobody should beat themselves up for those things even without a chronic illness diagnosis. More about that in a separate post.
  • I’m breathing.  For the first time in my life I actually have space.  Right now, I’m practicing claiming it: I’m allowed to be sleepy, and I’m allowed to take time to get healthy.
  • I’m taking time to be sad. So so so sad for the person inside me who was fighting to be seen. I’m letting her cry a ton. Im also giving her time to rebuild her trust with the medical profession. And yes I’m talking about myself in the third person.
  • I’m allowed to be proud of everything that I’ve accomplished up until this point. I fought tooth and nail -whatever that means – to be where I am.  I’m a warrior.  And one of the ways that I’ve changed in the last year is that I eagerly accept this label. #neverthelessshepersisted

  • I allow myself to be hopeful about my future for the first time maybe ever.
  • I listen to my body. I eat what I want. I nap before I become delirious. I snuggle with my bears.
  • I’m practicing being nicer to myself.  It’s going to take a long time for my inner critic to take a permanent hike but I’m working on this everyday. Some days are good, some days are ROUGH.  Like the day I heard this question for the first time. Which is why I’m encouraging myself to think about this.
  • And perhaps most significant of all is that I decided to open up about my disease and my struggles to family, friends, and finally the internet.  I’ve carried around suitcases filled with shame for 20 years and I’m putting those down now.  I won’t let them define me and they’re no longer mine to carry. #suckitnarcolepsy!


How have you changed in the last year?  Are you good at giving yourself credit for all that you’ve accomplished?  I’d love to hear in the comments below!