After work, I flew cross-country on a red-eye, arriving at Washington Dulles at 7:30am on June 2nd. Arriving outside the White House at 11:00am, I smiled big re-uniting with my MedX family of patient advocates, healthcare providers, government officials, industry representatives and technology and design experts. The mission of Stanford’s Medicine X program is to advance health care, technology, clinical care, and research through its Everyone Included™ framework. As we shuffled our way through security and onto the White House property, the joy in the air was palpable.
See, beyond this being a ground-breaking moment for narcolepsy to be included in this high-level national healthcare discussion, this was a monumental day for patient advocates to be featured on the national stage as important partners in advancing precision medicine.
Armed with sticky notes and sharpies, we began circulating around the room – meeting new friends and identifying areas of challenge and opportunity in research.
I decided to join group #6, tasked with exploring: “How do we make research delightful?” It had a lot to do with respect, feelings and valuing patients. At this point, we found out that our group needed a representative to “pitch” our design solution in 4 minutes to the big group.
In this official White House room where treatises are negotiated, I rose from my chair and reached out for the mic. I presented the problem (that research isn’t delightful, and not even respectful), I shared a story exemplifying this, and then pitched our team’s design solution (a framework for recognizing the value provided by participants in research). I did it!
This great workshop and the remarkable progress that it represents was made possible by an extraordinary team of people. While I was taking Effexor for hot flashes, I was also prescribed Wellbutrin XL for a mild case of post cancer depression.
When I was finally able to wean from Effexor, I felt ready to break up with Wellbutrin, too.
To the faces at my daughter’s school, my friends, the people on Facebook, I would just put on a smile and act like everything was fine. After posting my last blog about embarking on coming off anti-depressants, I was overwhelmed with emails from people sharing their stories – whether first or second-hand experience.
Last November I decided to come off the medication and under medical supervision began decreasing.
But I’ve learned just to ride them, just to feel them, ride the wave, go through it, it won’t last forever.
We have this perception that happiness is something we can obtain, something to aim for and possess, living happily ever after.
We all have our different experiences, and I feel for those who have also been battling anxiety, depression and other mental health issues as we battle trial and error with drugs, side effects, quality of life, stigmas and more.
As I plough strong towards the finish line, I say thank you so kindly for your support, for checking in on me during these 5 months.
At age 19, my therapist, Mary, at United Way, took me to a psychiatric emergency room and had me evaluated. Eleven years ago, I got a therapist, who after one year together drew up a self injury contract. It has been the hardest time I've ever had, but believe it or not, I didn't cut myself all year and never entered the hospital. This site complies with the HONcode standard for trustworthy health information: verify here.
Stepping off the plane, my vision was blurry and my legs wobbly (signs that my cataplexy was lurking, since I’d barely slept and was unable to take my nighttime medication on the plane).
Though coming from diverse backgrounds, we all share a common belief in the MedX and Everyone Included™ movement. Larry Chu, Executive Director of Medicine X,  Claudia Williams, Senior Advisor of Health Innovation and Technology at White House Office of Science and Technology Policy (OSTP), and DJ Patil, U.S. Within a few minutes – the ideas were flowing and everyone built off each others’ ideas. After what felt like 10 minutes but was more like an hour, time was up! I hadn’t slept for over 36 hours and maybe I was delirious, but oddly I felt REALLY confident. I look up to these individuals as role models, so I tried to nod and smile like this praise was normal. Thank you for standing up for what is right and showing the world what is possible through real collaboration and mutual respect. This event advances the Office of Science and Technology Policy’s mission and the President’s Precision Medicine Initiative by identifying opportunities and strategies to have participants participate as equal partners in research.

Everyone Included™ is a model for health care innovation that values everyone’s expertise and includes all relevant stakeholders in conversations about the future. In 2008 when I was diagnosed with breast cancer, my oncologist prescribed Effexor XR to help alleviate the hot flashes I was having caused by chemotherapy. I remember coming home and feeling exhausted because it would take so much effort to pretend like everything was OK.
An affiliate link means that I receive a small commission on sales of the products that are linked to in my posts (ex Amazon). Any products which have been gifted or sent for review will be expressed as such in its blog post. I’m just milligrams away from being medication free and wanted to share some thoughts about the experience. I was enriched and warmed by the response, the support and the bravery of people’s openness. I had been sinking into a depression of sleeping, binge eating, disconnection, lethargy and perhaps an existential crisis.
I suppose, in my now sceptical opinion, it’s to stop people coming off so they can make more money from people, and ultimately it’s not financially viable for them to manufacture lower dosages. I’ve had periods of tearfulness where I cry at beautiful things, cry at nothing, cry at stressful things, cry cos I’m scared, cry cos I’m happy.
I’ve also had feelings of elation, happiness, being in love, enjoying TASTE and TOUCH far more than ever before.    My partner is a psychologist, but beyond that she’s a nurturing, empathetic woman, and I recall climbing up Mt Buffalo and stopping to have a cry. Was the doctor looking for a quick fix that was ultimately just a blanket for the human experience?
I’m by no means qualified to be handing out advice on this, but I just wanted to voice my experiences in the hope that it might open communication and help us feel connected as humans. Huge thanks to my friends and family, especially my loving partner for riding the wave with me and being a rock when I could not, for your words of wisdom, your grace, letting me be who I am, feel what I feel. I suffer from Major Depression, Schizoaffective Disorder, and Borderline Personality Disorder.
The contract also stated that if I wanted to voluntarily enter the psych hospital, I had to have her approval to do that.
It shocks me because I used to slash myself up on a daily basis and attempt suicide every other month or so. Thankfully, my daytime stimulants and a tiny bit of Effexor (which I take on an emergency basis to knock out my cataplexy) helped me to re-gain trust in my body to carry me through the day. Channeling my inner-lawyer, inner-narcolepsy-spokesperson and Toastmaster, I quickly weaved together a pitch. It was enough to manage the hot flashes but not enough to alleviate the depression. My GP suggested adding Wellbutrin XL. Existing in the world with a busy schedule and obligations and making small talk all the while just wanting to be left alone is really hard to bear. It used to be a high that would sustain me for days but it was turning into an opportunity to self hate. I was embarrassed to ask about depression and afraid to jump into another anti-depressant after feeling like I didn’t need them anymore. I sat down and within 15 minutes had explained why I thought I was depressed. It was her professional opinion that I was indeed dealing with major depressive disorder and had agreed medication and therapy was my best course of action. I remember the terrible withdrawal I had when I was weaned off the Ativan I had been taking during chemo to treat late stage testicular cancer. If you click on a link and make a purchase from an affiliate site, then I may make a commission from that purchase, however the shopping experience does not change for you.
The blue shows the daily dosage of Effexor with 1 representing my original dosage of 75mg and 0 representing nil (with everything in between). Could my mental health issues have been helped some other way, with some other combination of things, more exercise, therapy, diet, yoga? And thanks to Sal for your DAILY picture messages of encouragement over the last 150 days (dedication!).
I had been going to hospital every other month and now I had to check with my therapist before I went in.
I took it for several years post treatment because I simply couldn’t wean off the drug. Mornings felt like Groundhog’s Day, my body felt like grinding gears, tasks looked like hurdles, social activities felt like obligations.

It’s been a soft place to land while I figure out the self-loathing and how to repair broken relationships.
I went a while without any medication and last year I started recognizing signs that I was headed for that hole again.
I found myself on the roadside throwing up after a gig, throwing up at night, headaches, restlessness, spasms at night, irritability, crying. I lined my house with notes of encouragement and reminders to call friends if ever I had thoughts of suicide… but thankfully I haven’t had them at all. Those mere words empowered me and created a safe place for me to just weep till I no longer needed to weep. I continued my self-injury behaviors because it helped me to release my inner torment and allowed me to see myself bleed and suffer externally.
I also had to promise that I can't kill myself no matter what; even if something were to happen to my cat (I loved my cat, Baley).
Effexor withdrawal causes incredibly debilitating side effects and I thought I was bound to be on it for life until I found a doctor who prescribed Prozac.
I found myself fixated on other families who were having fun while I was trying to figure out how to do the same. There are so many people out there who battle through mental illness, or are close to someone with a mental illness. But when I tried weaning down over a couple of months from 75mg to 37.5mg a day, then down to one pill every 48 hours, I found myself riddled with withdrawals, suicidal one day, fine the next, straining my relationships and career, till I relapsed and the doctor advised I go back on the medication. And when you’re feeling good do you really wanna jeopardise that by messing with what’s working, messing with the meds? It seemed that when I introduced the smaller dose one day and remained on the current dose the rest of the week, my body was going “WTF!” It never really got the chance to get USED to the next level cos the process was perhaps too slow and disjointed. I’ve had times where I feel like I can’t handle the smallest of challenges, or the mere sniffling of some inconsiderate person in the library. She says perhaps coming off the meds is like lifting a blanket that has numbed my feelings, both good and bad.
Do drug companies enhance fear of coming off them with the endless list of withdrawals so you remain on their product? When I introduced a lesser dose, the following day was often lower with multiple side effects. And that perhaps now I am forced to face feelings I didn’t face 4 years ago, forced to FEEL feelings I didn’t let myself feel 4 years ago. I was completely self-loating, I didn’t care about my friendships, and my marriage was suffering. It was vulnerable opening up about coming off my medication, and I feared the consequences. Living in a better environment, new friends, new love, and a new understanding of myself and the tools to handle life, I figured now was a good a time as any to come off the meds, and the doc okayed this.
Medication certainly has its place, and there’s often the argument that mental illness requires life long medication just like asthma or diabetes.
Was I not ready to come off 3 years ago, or was the method of coming off an unrealistically drastic method suggested by drug companies to set you up for inevitable relapse? But to my wonderful surprise, with vulnerability and openness came connection (as Brene Brown says in her TED Talk).
For some, medication is vital for quality of life and to go without would make existence nearly impossible. Is my success now because I am READY now, or because I listened to my body during the process of weaning off, and tailored the reduction to suit the rate at which I was comfortable decreasing the medication? For others it can be a kick in the right direction, a little extra help while getting back on track.
I thank everyone who has supported me through this part of the journey, the messages, checking up on me, boldly sharing experiences. It seems going straight onto a lesser level is the way to go, none of this alternate dosages for alternate days business. There are so many grey areas, so many uncertainties in our understanding, so many questions.

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