Luck Fupus

A lupus blog…

I’ll make the most of all the sadness…

Hello my loves,

It’s been quite a week, and it’s only Wednesday, not to mention Monday was a holiday. My head has been spinning lately as the reality of the big ‘D’ kicks in. While I think it’s the best decision for both him and I, it’s overwhelming and makes my heart heavy. I’ve been waiting for the big “A-Ha!” moment to hit me, that I come to my senses and try again to mend all of the things I thought were unrepairable. But the moment hasn’t come, and time keeps passing.

I hate to compare, but I feel the last few years of my marriage were very much like Charlotte and Trey’s on Sex & The City (minus the ED and crazy MIL). We had it in spades- two attractive people, successful in our respective careers, a beautiful home filled with beautiful furnishings, and plenty of friends for whom we played the part of the happy couple. To the outsider, seemingly perfect. Yet behind closed doors, we lived separate lives, and it became too burdensome to keep up with appearances. Don’t get me wrong, there was an abundant amount of love; love was never the issue. I adore him, and he, me.  But, as life often does, it veered so far from the path we originally paved that eventually we found each other going in opposite directions. We faced more hardships in our first few years of marriage than most couples do in a lifetime, and sometimes I can’t help but wonder how we made it this long.

I grew more dismayed  this week as I watched friends post the “1st Day” pics of their children on all the social media. I don’t know why I continue to be shocked that it hurts as much as it did when the incisions from my surgery were still fresh, but the pain has yet to subside. It’s the most peculiar feeling, joy for my friends, green-eyed jealousy and a side of grief. 35 is far from old, but with all of my health issues, it feels like the opportunity to become a mother is slipping further and further away.

Marla, your pity party table for 1 is ready.

Hopefully I get the hot waiter.

One of my favorite Sam quotes from the entire series

OK, two Sex & The City references in one post is my limit.

In other news, I have a busy few months ahead of me. The patient advocacy train is just about to leave the station, full speed ahead.

I was offered an ePatient scholarship to Stanford Medicine X, a conference that is a catalyst for new ideas about the future of medicine and healthcare. Stanford MedX is Everyone Included™  a disruptive force in health care that combines unique expertise from all stakeholders to drive innovation and change through openness and experimentation. It’s a model that encourages everyone to be health care rebels in an attempt to transform health care for the better. Its’ goal is to bring together the most innovative and and engaging minds in academia and industry to engage bold new ideas about the future of medicine and the role technology will play in improving health.

Innovative and engaging aren’t the first adjectives that come to mind when describing myself, but since Stanford has offered to foot the bill, then innovative and engaging I will be. I’ve been accepted into the Everyone Included Precision Medicine & Research Track, where myself and 5 others will explore how personalized data influences healthcare decision making and issues surrounding data collection and dissemination.

Precision what?

Precision Medicine is an approach to disease prevention and treatment based on based on people’s individual differences in environment, genes, and lifestyle. Basically, medicine that’s tailor made for you.

National Institute of Health Precision Medicine Initiative Cohort Program

In my past life where I was only mere classes away from becoming a Pediatric Nurse Practitioner, I grew extremely passionate about transitioning adolescents and young adults with chronic illnesses to adult healthcare. More specifically, transitioning those with congenital heart defects to adult care. Do what you know.

My own transition as a patient from CHOP cardiology to Penn cardiology was mediocre, at best. My first exercise cardiac stress test at Penn was in a room that had no doubt once been a storage closet. I remember running huffing and puffing on the treadmill thinking there had to be a way to prepare patients for this- from going from the bright lights and familiar happy faces at CHOP, to the grown-up world.

Professionally, I joined a Transition to Adulthood group at CHOP comprised of nurses, MD’s, social workers etc., to collaborate and develop formal transition programs for CHOP patients who would eventually grow up, have to “cross the street” and begin being treated at the big, scary adult hospital. I worked with my patients, the sickle-cell population when I was an Apheresis nurse, and the congenital heart defect population when I worked in the Cardiac ICU, teaching them about their specific disease process and medications, and advising them that one day, as long as there were no developmental or cognitive delays to keep them from, they would be in charge of their healthcare.

When I applied to Stanford MedX, I pitched the idea of how Precision Medicine will be beneficial to adolescents/young adults as they make their transition to adult health care. After the conference, I’m expected to author a working paper on personalized data influencing health care decision making, to be published on November 1st (!!!!!).

I was asked to speak at The Patient’s Voice conference, a seminar designed to bring patients, researchers and drug makers together for a discussion on how to make clinical-research more friendly. There I will be sharing my patient story and participating in a panel.

There’s more which will have to come in a later post. Sorry for the abrupt end.

Love you all <3

Comments

  1. Holli says:

    I wish I was there to give you a hug. Divorce sucks but you both deserve to be happy.
    Lots of stuff happening in your world girkie- take care of YOU!! Xoxoxo

  2. This is like the perfect fit for you. What a great opportunity, and I assume your new job is good with your continuing advocacy.

    Always here to talk if you need to.

  3. Jennie K says:

    Love and hugs to you, with everything you are Currently going through in your personal life. Professionally, you’re one of the most amazing and inspiring people I have ever had the privilege to know. The type of work you are doing is simply wonderful. I’m not at all surprised you were selected by Stanford and you really deserve it! Congratulations on your scholarship! It’s another step to more amazing things, and I’m happy for you

  4. Whitney says:

    Wow I feel like I’ve been really really out of the loop.

    I’m so sorry for what you’re going through personally. Hugs.

    I’m also excited for you being back and work and for this opportunity. It sounds REALLY cool!

  5. Linda Sheridan says:

    Just reading this blog now-10-10-2016!
    Pity party, my ass. Wtf. You are a Sainte! Your soul took on a lot and you are doing the best you can. I believe we write our charts on the other side and come here to perfect our souls. You really picked some doozies. Continued Goddess speed. What wonderful things you are doing for so many! You are brilliant! Streamlighting lights and love and Angels and magic to you always. ✨💖😇🦄☮️🍀 Peace and luck, too. Love. Steph’s. Momma.

  6. Kelli Gray says:

    Just popping in from Alaska again. I’m afraid I haven’t been online much for quite some time so I missed some pretty big things it seems. I’m sorry and not sorry to hear of your big ‘D’. What I mean is… I just want you to be happy, safe and appreciated and if your “soon to be ex” can’t handle it or doesn’t support you like he should, then poo on him. Sometime the weight of a relationship is heavier than we realize until it’s over. You deserve the best sweetpea God has a way of closing doors but opening windows you didn’t even realize you needed. This Stanford scholarship is awesome! Good job! It must be exciting to sit on the edge of an interesting new path, especially knowing your ability, training, and experience. It sounds like a great fit for you. Big hugs and prayers up for you. Now, back to reading more👍🏼😊 of your writing.

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