Luck Fupus

A lupus blog…

I’m gonna make a change, for once in my life…

Hello loves!

It’s my favorite month of the year, the Month of Marla! Some celebrate his or her birthday just on the day alone, some for the weekend, but, oh no, not me. I take the entire month of August. Why? Because I can.

The happiest day of the year was August 7th, and I turned 29 again a whopping 34 years old. I don’t feel 34 (ok, so with this jacked up body of mine I feel more like 74), and I certainly don’t look 34. So as my Mom-Mom had me convinced until I was about 16 9 that she was 29 even though my dad was in his 40’s, I’m going to do the same damn thing. 29 it is!

Celebrating year 34 in style!

Celebrating year 34 in style!

I’m slowly, but surely, getting back into a routine, and as I mentioned last, having extra time that isn’t spent in waiting rooms or cold exam rooms has me all out of sorts. Out of sorts or not, I’ve been able to make some good use of my time. I still get on myself that it’s not actually a “career” (hello? anyone reading want to give me a book deal???), but the truth is, I’ve been going out there, speaking my mind, and hopefully leading the way to some changes. Though I’ve been absolutely terrible writing about the events I’ve been invited to speak at, there were many over the last few months.

The first event was the Medical Media & Marketing (MM&M) Transforming Healthcare Conference, which took place in New York City. I was contacted by someone from Artcraft Health to participate on a panel focusing on the idea of patient centricity. Others on the panel included Marc Sirokman, CEO of Artcraft Health, Jill McNair, Director of Education, Outreach and Community Support for CISCRP, Dr. Navarro Rodriguez, Chief Medical Informatics Officer, for AdvantageCare Physicians, Lita Sands, former Global Head of Digital Transformation for Novartis, and the session was moderated by Marc Iskowitz, Editor in Chief of MM&M.

Our panel was the last session in the morning, so I was able to relax, go over notes, catch up with Shauna from Artcraft Health since it had been almost a year since I’ve seen her, and drink much needed coffee to get the neurons firing.

Some days I’m dead on at speaking engagements, and some days I’m just… off. Really off. Granted, I was only a week out from my 2nd breast surgery, so I cut myself some slack. Holy freaking lupus/chemo/pain brain, I couldn’t put coherent sentences together up there to save my life. But, many came up to me after and said how engaging (maybe they meant entertaining?) I was, and it did lead to future opportunities. So, I guess in the grand scheme it couldn’t have been all that bad.

My favorite part of the day was cocktail hour (obviously), but not because of the cocktails. Since I never know anyone at these conferences, I usually just bounce around and start talking to anyone standing by him or herself. After talking to a guy for a few minutes, we realized my next door neighbor growing up was his college roommate and they were still good friends. I love when shit like that happens, it’s such a small world!

Not quite sure why they used that glorious thumbnail, but as you can see, I always stay true to myself no matter how many important people you put me in front of. However, I do know exactly what I was talking about in that moment!

Before the conference, MM&M put out bios for all the speakers on the event’s webpage. You can see mine here. That little bio led to being contacted by Gene Miller, the Director of Commercial Strategy and Innovation of the Cadient Group, an interactive marketing agency. Gene explained a client, Incyte, a small bio/pharma company was holding a conference in NYC focusing on a rare chronic disease, polycythemia vera, a rare cancer which causes an increased number of red blood cells. While I don’t have that specific disease, Gene thought I would be a good fit to speak to the group (a mix of patients, doctors, marketers, patient advocates, etc…) about how I’ve been using social media to promote advocacy and tell my journey as a patient. Would I be interested?

Um, can I get a hell yes?

Now I’m bragging honored that I was chosen out of a few candidates to speak to this group (thanks Gene! Want to be my agent?).

On July 31st, I presented a sad little Power Point (seriously, how do I have 4 degrees and never learned to properly use Power Point?), to a very small group. It was so relaxed, and I felt at ease the moment I stood up front. I was so myself, that when I was going through my health history and got to the part about my double mastectomy, I said “don’t they look great?” and seconds later realized what I said and tightly pulled my cardigan around myself.

Please refer to the caption under the video.

It’s so refreshing being given the opportunity to speak to others who are battling chronic illnesses. It’s like we are all a part of some (stupid) secret society where every member looks SO good, yet we are all in pain and take at least 10 medications a day to survive. Hey, I never said this was a cool secret society. That said, we are all warriors, fighting our various battles so very differently, yet, we all just get it. There’s no stigma. There’s no funny looks when I stop dead in the middle of a sentence, come to after some silence and declare “ugh, Lupus brain!” No one batted an eye when I said I no longer have my nursing career and I’m on disability. Because they get it, there’s this mutual understanding, and no judgement.

So very grateful I was able to be a part of that day! And the nurse in me was thrilled to learn about Polycythemia Vera. The more you know, indeed.

Back in May, Gene asked if I would come speak to the strategy team of the Cadient Group. That was another low-key (read: no stress or nerves) opportunity to tell my story to those who want to do right by patients. Everyone was warm, welcoming, laughed at my jokes, and asked insightful questions. And the pizza was good! #prednisonemunchies

Also in May, I went to the first GlaxoSmithKline Lupus Summit. What a great freaking day! Myself, and 7 other lupus advocates got to spend the day at GlaxoSmithKline at the Philadelphia Navy Yard. I was shocked that I was invited to be a part of this elite group, as some of these women are who I refer to as the Angelina Jolie’s of Lupus. The advocacy work they do for the Lupus community is incredible.

When I was first diagnosed, I stumbled on a book called Despite Lupus, and it truly resonated within me. The author, Sara Gorman, wrote of her initial Lupus diagnosis, and it was eerily similar to mine. She and I were both 26, newly married, and just starting out in our successful careers when we first became ill. Sara’s book helped me through a dark time when hearing the words “but you don’t LOOK sick,” from friends, family, and co-workers made me question if I really was sick or just crazy (keep your comments to yourself, please). Needless to say, when I shook Sara’s hand, I went all Lupus fangirl on her!

The day was spent being able to speak to key members of the GSK Immunology team who are working on research specifically for lupus, to voice our needs and concerns as patients, to tell our stories, and learn from and support each other. Though our backgrounds and journeys living with Lupus are completely different, we all essentially want the same things. I loved being able to talk face-to-face with some of these influential women who I have had an “internet relationship” with for years! That’s you Tiffany and Amanda!

PicMonkey Collage

Lupus Sisters in action!

Goodness, what the hell else have I done, I feel like I’m missing a few things….

After the Transforming Healthcare Conference, I was asked to participate in the Patient Supplement issue of MM&M magazine. Myself and 4 other industry experts (that’s right, I’m an industry expert. That shit is in print) were asked 3 questions for the Think Tank: Patient Progress section. Read the entire article here.

thinktank

Source

I hosted my first Twitter Chat with Virginia Warren, the Digital Marketing Manager from Aegis Creative Communications, Inc. The Twitter chat revolved around the idea of patient centricity, and you can read the full transcript here. Thank you to Amanda and Tiffany for being our special guests!

I also had the opportunity to sit down with Virginia, and she interviewed me asking my views of patient centricity. Though Virginia is based in Colorado, thought the wonders of the interwebs, we were able to chat face-to-face (screen-to-screen) via Google hangouts. I will say I have a face for radio, I make the STRANGEST facial expressions. I’m pretty sure I won’t be making my TV debut anytime soon. Regardless, it was fun, I was able to laugh at myself, and once again find another way to get my story out there. Thank you Virginia!!!

The interview was separated into a handful of short videos, and you can see all of them here on Aegis Creative’s blog.

Last, but certainly not least. My original agent (ha!), Todd from WEGO Health asked if I would join him on a panel: How patient engagement influences outcomes in a consumer driven world. The panelists were Todd, myself, and Richard Nordstrom, CEO of Liberate Ideas. The conference was less than 48 hours after the tornado-like storm tore through my town, so I have to admit I almost didn’t go. But, I hated the though of letting Todd and WEGO Health down because they are the reason I’ve been given all these chances to put myself out there.

It took a few minutes up on the stage to get my thoughts together, but I eventually got into my groove and was able to actively participate in the dialogue and answer questions from audience members. I hadn’t seen Todd in almost a year, so it was certainly nice to catch up with him.

And there we have it. The past few months rolled into a very long post. Even though I’ve been in conference circuit for over a year now, it still takes me by surprise each time I’m asked to share my opinions or referred to as an expert. On that note, I have to reply to a few people who have invited me to conferences in the fall (toot toot, mother fuckers!).

Love you all <3

Comments

  1. I love that you’re out there doing this – spreading the word, advocating for yourself and others, and still learning and growing and being funny and fabulous and you.

    xoxo

  2. Kelli says:

    Maybe what you’re doing is more important than a career. Think about how you went all fan girl on Sara because her writing helped you through the beginning diagnoses, someday someone is going to be fan girling all over you the same way for the same reason.

    Also if you wrote a book I’d bet someone would publish it!

    xo!

    • luckfupus says:

      On my birthday, I ran into someone who recognized me from my blog, and it was a pretty defining moment for me. Made it all seem… real, for lack of better terms. I love you for sharing this on all of social media!

  3. Holli says:

    First of all, what are you exactly doing in that first video? First thing that comes to mind is a prancing pony or maybe Linky cat pawing you to feed him.
    I loved the second video hearing your voice! You are so dang cute and I can totally hear your Jersey/Philly accent.
    I am so proud of you for all you’re doing. You are a voice for Lupus. I’ve missed you and Praise the Lord for social media so I can see your posts.
    Come to Dallas!! Surely there is a conference in Dallas at some point. Fingers crossed!

    • luckfupus says:

      LOL LOL I was talking about how most doctor’s offices have switched to electronic medical records, that now instead of looking at your when they talk to you, the doctors are ferociously typing away at the computer to make sure they have all the charting done. LMAO.
      Everyone says I have a Philly accent, but I don’t hear it! But I guess you don’t hear your Texas drawl!
      I’ve actually been looking for conferences out of the area, and even if I’m not invited to speak, to just go to network more. I’ll keep you posted!!!! <3 <3

  4. Syn says:

    If we aren’t making everything we can out of whatever we have, what’s the point? It’s awesome that you’ve found purpose and a voice through all the barriers your body has thrown in front of you. Voices that are positive from the chronically ill camp are so vital.

    I appreciate that you don’t give in and keep fighting.

    It is strangely beautiful that when our bodies turn so harshly against us, it can show the power that life has. We are in the end our story, we don’t get to choose some of the major plot points but we have influence so long as we’re breathing.

    As I am clinging onto my original goals and career, it is inspiring to see you who has made a life beyond that. I need that since I know my body isn’t gonna let me keep up this gambit forever, it has already said NOPE put me on disability twice. You show that it ain’t over until it’s over, and there is always a way that we can be working towards making the world a better place.

    Also, I have a few degrees and actually run trainings, and I have no idea how to run a good powerpoint. I much rather go back to the eighties, hand me some transparencies, a projector and some erasable pens.

  5. CC says:

    You always bring humor to those of us that are sitting here looking for answers and someone to relate to. Exactly what you said in the video… bring someone real! It would be a blessing to bump into you in person. I find myself more and more finding people locally that have lupus now or some autoimmune disease or that know someone with it. God bless you!

  6. Kate says:

    You are amazing and completely wow me. I don’t know how you do it. But keep doing it.

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