Wednesday, July 30, 2014

We made the big time! @WSJ #socialmedia #patientvoice @CraigLipset

So I get a call last night from Amy Marcus, the writer who penned the featured article about the dilemma that is raised by this very blog and others like it. The piece, "Researchers Fret as Social Media Lift Veil on Drug Trials",  she said, was tentatively scheduled to go to press today.

I awaken to a tweet telling me I'm a rock star in the clinical trial world.

I click the link in the tweet to read the article and I hit a pay wall. How ironic that an article about my use of social media is hidden from me on the internet. Frustrated, I call all over this one horse town to find anyone that carries it in print.

A friend saw my post on Facebook and emailed me a complimentary link to read the article. And like that I am reading about myself. How odd...

The first thing that struck me is that, of the hundreds of images photographer Bob Croslin took, they went with the most hideous one they could find. He said "give me mad and give me happy. I'm not sure which look they're going for." Apparently saggy and frumpy was what made the cut.

Anyhow, the piece was spot on and factual, however I would have loved if they had included a link to my Partners in Research site. They did link to this blog though, and now I've effectively connected the dots. You're welcome.

Go see all the good work I'm doing over there and how I'm trying to educate others about the use of social media while participating in a study. How was I to know that what I viewed as my own online place to chronicle my progress would have such far reaching implications down the road? It turns out that, as far as anyone can figure, this was the first time a clinical trial had been blogged from start to finish.

I remember thinking at the time that the study site staff weren't going to be reading it so who cared? They were the ones that couldn't know... that's what they told me. If they didn't want me to blog, they should have said so. In fact, it was no secret that I was blogging. It was often the topic of casual conversation at my checkups. They just didn't know I'd met other patients. I didn't think they'd want to know.

So now that this blog has made the Wall Street Journal, there's nothing left that is going to top that. I'll put this blog to bed again. Thanks once again, @CraigLipset, for bringing me up on stage.

One final note: My dad, who passed away in 2000, before any of this ever took place, always encouraged me to write. I thought he was crazy. I didn't see what he saw. We lost him to cancer seven years before the start of this blog, and in the image used in the WSJ, directly above my head is the flag we were given by the U.S. Navy after his death.

He's been with me on this journey all along and it's only fitting that we are together in the picture as well. Thanks for everything Dad! I sure miss you.

Saturday, August 10, 2013

It Finally Happened #gilenya #multiplesclerosis

Yes, I know I said the party was over, and truth be told there's nothing left here on this blog but the confetti on the floor and a bunch of empty solo cups to pick up.

But for the entire duration of this blog, which has been about my experience in the TRANSFORMS clinical trial for the MS drug Gilenya (fingolimod, FTY720), I never had a relapse.

I guess this blog was my lucky rabbit's foot. I should have kept it going. The minute I called it quits (and yes, I realize it's coincidental, but the irony amuses me) I have a bona fide relapse.

For the past week or two I have been suffering crushing fatigue. No all-nighter in my 20's could ever have topped this. A feeling like Horton is sitting square on the center of my chest.

Then, when I'm able to shove him off my chest and become vertical, I realize karma thinks I'd look faaaaaabbulous in a lead suit.

Alanis Morissette left a verse out... "like gaining weight, when your legs don't want to move". I'm serious. I was stuck in bed part of that time taking comfort in snacks because they made me feel better. Thank God the worst of it was over after only a couple weeks or they'd be cutting a hole in the wall to get me out of this joint.

I called my neuro when I finally decided it wasn't just hypochondria getting the better of me (is there an opposite of hypochondria because I think I have that now. Whoops, no, there I go begin a hypochondriac so I guess I'm good).

I went to have a checkup at the clinical trial center and they did the EDSS on me. I had increased weakness in arms and legs, numbness in parts of my forearms and calves, and for the first time EVER I couldn't complete the 500 meter walk.

They always made me do 24 laps of the study center hallway which measures out to be a total distance of 500 meters. I have always completed it (one time in just under 10 minutes), and always unaided.

Yesterday I asked for my cane after 2 laps and had to cry "UNCLE!" after 18 total laps. The study coordinator said "wow! something really is going on, isn't it!"


So I will re-end this here now that there is an ending and "Girl Has Relapse".

I'm not gone, however. My new obsession, besides writing for, is my site,, where I'm hoping to educated people who are curious about clinical trials for MS what it's like from a patient point of view.

Also, stay tuned for an update on where I'll be blogging just any old stuff. I need a place to vent and this blog is too confining. There's more to me than my MS, after all. :)

Peace out.

Monday, July 29, 2013

The After Party #partnersinresearch #clinicaltrials #multiplesclerosis

My story here really ended a long time ago when I exited the TRANSFORMS trial on January 20, 2011. The show was over, but I've just been hanging around, excited to connect with so many people who have found me here on my blog and followed along.

This blog, for those of you who are just tuning in, has made a spectacle of itself as it was discovered by big pharma (thanks, Craig Lipset from Pfizer!) and a surreal conversation began. From that one encounter, a bridge was built between the real live trial patient (as opposed to anonymous Donor of Data) and the people behind the clipboards. Here's a fun fact: THEY'RE real people, too! Passionate and dedicated to their life's work, individually they are not nearly as evil as most of us perceive.

I attended the Disruptive Innovations conference and was an oddity to be examined all over again, as they puzzled over just how an industry so regulated might speak around the gag in their mouth and have a real interaction with those of us lab rats behind computers, engaging in social media. It's become a topic very near and dear to me.

Because of this conversation I have been propelled by the force of destiny into the role of patient advocate, and have had the honor of attending several conferences to represent the clinical trial patient and speak to the unmet needs of the patient side of research. I am not unwilling to assume this role, but I know what that girl at the Springsteen concert must have felt like when she was pulled on stage to dance with the band.

Big Pharma pulled me onto their stage and I'm trying to make my dance matter. Whether or not it was ever my intention, at the start of this blog, to become a patient activist seems not to matter any more. What's done is done and I feel the weight of responsibility on my shoulders. I want to represent for patients everywhere and give a voice to those who feel they have no voice.

I was once terrified to enter a clinical trial, but equally terrified of the suffering my MS was doling out. I started this blog when I was a trial patient hoping for a modicum of relief. The incredible benefit I got from that journey–having not had a relapse YET since taking the very first pill on Aug. 20, 2007–has bought me time to do the bigger things I believe I was meant to undertake.

First with the blog, then with Novartis' "Guide Network" of patient speakers for their marketing program, and now as a patient advocate, I go through doors when they open for me. So far, I haven't been disappointed yet.

So, I think it's time to move on. I know I announced blogging my extension trial but wouldn't you really rather go watch paint dry? I mean, it's more exciting, as it turns out. Nothing to see here, people.

Also, considering the name I have chosen for this blog and how closely tied to the medication most of the content is, I have outgrown the desire to post here. It will stand as a testament to clinical trials and the difference it made in my life, but since I have departed from being a part of the advertising campaign (the Go Program) for Novartis, it's only fitting that this blog be put to bed as well.

What started out as a hypochondriac keeping a journal of her clinical trial turned into a platform for so much more.

I'll still be blogging, but stick this one with a fork - it's done. To limit myself to be forever seen as merely Novartis' biggest cheerleader is too confining a container. I'm thinking outside the medication box now. Moving on to bigger and better things.

The day I got my nails done to match my Gilenya box. Hard core cheerleader. :)

Please join me, together with my friend Anne, who was also a clinical trial participant and Gilenya Guide, as we embark on a new call to action... our brand new website....

...where the conversation about MS, clinical trials, and how you can become a patient activist continues.

Partners In Research is intended to be a place where those who are interested can find out all they need to know about clinical trials. We will be expanding the content to include informational videos on the topic of research and adding blog posts from a patient perspective to help MSers see what a study is like from the inside.

We have just launched our page as well at:

I'll miss you, so please come visit over at Partners in Research! :)

Thanks for playing along!