Wednesday, July 23, 2014

This is your life… are you who you want to be?

Avid reader, I must confess, I've lost my mojo. Not sure what my deal is, but for someone whose career did a 180 (or came to a complete halt, as the case may be), I am BUSY. Like, CrAZy busy. I'm not complaining, but I look at my (kick ass) planner and just wonder how any of this would be even possible if I were working full time.

It's been a whirlwind of amazing opportunity after amazing opportunity, and somewhere in between there have been SOOO many doctor's appointments, sometimes 2 in one day. I'm exhausted, but still managing to keep on truckin.

You may recall in early June, I participated in a roundtable event, Medical Marketing and Media Leadership Exchange: How can pharma think more like a patient? as the patient voice at the table, bringing perspective and opinions on what I feel pharma is both excelling in and lacking on to be better "patient centric."

The event was hosted by Artcraft Health, and a few weeks ago they reached out and asked me to SPEAK AT THEIR ANNUAL COMPANY MEETING. Yeah, you read that right. The girl with tampons up her nose and who drops f-bombs entirely more than any one person should, was asked to be a guest speaker.

Mind. Blown.

I won't get into the road rage induced anxiety caused by the TWO (separate accidents) over turned tractor trailers I encountered on my 80 mile drive up (and I left two and a half hours early!), or the fact that I wore heels much too high for someone with osteoporosis in her hips and spine (beauty is pain, people!), but rather about my talk. They wanted to know about ME, my experiences and journey, if you will, as a patient. The good, the bad, the ugly. And goodness we know there is a lot of ugly!

This is what I refer to as, "no shame in my game."
See also: ugly.

I was upset I arrived late, but, the show must go on and the meeting was in progress by the time I finally got there. Before I knew it, I was introduced by Marc, the Executive VP and General Manager, and all eyes were on me.

As I said, my talk was about ME. Sometimes, it even blows my mind that I have spent my entire life as a patient, so there was a lot of ground to cover - twenty-nine thirty-two years, to be exact. I have no recollection if I spoke too fast, not loud enough, or if I stuttered every other word (lupus brain!), but every sentence or two, I would look up and meet the eyes of someone, and I was shocked to discover everyone was engrossed in my words. Listening intently on what I had to say, and I can't express how empowering it was for me. 

I said my last sentence, and one by one, they stood on their feet and clapped. A standing ovation. For me. And I'm almost certain there wasn't someone behind me (were you, Shuana?) holding up a cue card that said "APPLAUSE."

Again, I was floored. I wasn't sure if I was supposed to bow, curtsey, or do my best Kate Middleton wave. Instead, I sat there like a deer in headlights, a big grin on my face and blushing profusely!

There was time for questions and answers, and I expected maybe one question. Well, color me stunned, there must have been at least 10 questions. Insightful questions that could have only been asked if one truly listened to what I had to say. I think my favorite question asked was how I keep track of everything, to which I laughed and replied, "I have no idea."

Jokes aside, I have a very good planner and an OCD method of recording any new symptoms and/or questions for my physicians, all 9 of them and counting. That said, it gets rather daunting.

A woman about my age raised her hand and told me her best friend was recently diagnosed lupus, and has spent a lot of time extremely ill and in and out of the hospital. She asked if she could pass along my blog to her friend.

And that right there made it all worth it, to be able to reach that one person in my same situation. This shitty disease has taken away so much from me, so many experiences, and has rewritten every single chapter in my adult life. Am I bitter? Of course, to a point, yes, I'm human. I don't ever think anyone has it "sooooo much easier," but, I get green around the edges when I see someone enjoying all the things in life that I wanted for myself. But there's no point to dwell, because I can't change anything.

So, I find myself making light of all of this. To make jokes (hello, tampons up the nose.. are funny), to empower, to educate, to have a hand in making changes, to inspire, to share my story to anyone crazy enough to listen, and to show that is all doesn't have to be so bad.

To everyone at Artcraft Health, thank you for allowing me to be a part of your meeting, I consider it a huge honor, and I hope I was able to bring insight on how to better reach the patient. Marc, thank you for being so incredibly welcoming. Shauna, thank you for having the confidence in me to get up and do this. And the chocolate, where can I get that chocolate? Katie and Lynn, I'm certain you had a hand in this. Thank you.

Love you all!
Linking up with Kathy, SHauna, Candra and Liz

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Wednesday, July 9, 2014

And all these little things...

What day is it? Hump Daaaaaaaay!

Never gets old.

Yes, I'm using a lyrics from a One Direction song today… yipes. But, my newest adorable musical ginger crush, Ed Sheeran, wrote this particular song, which is how I justified the use of this these lyrics.

Now that that's all cleared up.

So, days have been going by in blur, and I forgot to promote the hell out of the fact that I'm co-hosting a linkup today. I suck. The oh so lovely Candra from Camo and Lipstick (seriously love that) asked me to join her today. Canda is who I expect I'd be if I lived down south, a fine mix of girly-girl and rough and tumble. Doesn't mind getting dirty, but wears red lipstick doing it. My kind of gal.

She came up with this idea for a Wednesday link-up called "The Little Things Wednesday"

"The Little Things Wednesday" taking a horrible situation and looking on the bright side. Woke up late, salt in your coffee, favorite skirt ripped, seems like a horrible day but then someone smiles at you on your way to work and suddenly you remember it's the little things that matter most. Link up with us and share some of your little things this week.

When Candra asked if I wanted to co-host, I knew I had to jump on board. 

I'm going to start with the obvious. When I was diagnosed with lupus, it rocked my world, and changed every single aspect of my life. Lupus took my career, my ability to have children, put a huge dent in my brand new marriage, destroyed friendships…I could go on and on. But, without lupus and all the terrible things that have come with it, it led me to starting this blog (with a TON of convincing from Brie, of course). This blog has helped me learn more about myself, more about lupus, has connected me to SO many amazing people, and blog friends have turned into REAL LIFE friends (that's you Steph & Gwen Coco!!). This blog of mine is leading me to opportunities and open doors that I never thought possible (thanks WEGO Health!), and I can't wait to see what it continues to lead to.

Yes, lupus fucking sucks. If I had it my way, this shit would be gone. But, every now and then, you have to take a step back and realize, it's not all so bad.

Love you all!

Now grab the button and link up, bitches!!

Camo & Lipstick

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Tuesday, July 8, 2014

Oh you know I did it, it's over, and I feel fine...

I did it. I fucking did it!

21 days without sugar. No Oreo's, no ice cream, no pasta, no bread, no salad dressing, no fruit, no water ice, no Starbucks mocha choca latta ya-yas. Only the healthiest of foods have passed through these lips in the past 21 days. I managed to get through this without causing bodily harm to myself, an innocent bystander, or offering up any kind of "favors" for some Cheetos.


I went into this without tooooo much planning. Yes, I bought the 21 Day Sugar Detox book by Diane Sanfilippo, read it, and soaked up the sugar-free knowledge. But, I'm not much of a meal planner to begin with, and I wanted to see if I could stick to it without having to change how I normally choose meals and cook. I only did the prep work for breakfast because that was my breakfast for an entire week.

Basically, over the 21 days, I perused the detox book and Pinterest for recipes that sounded delicious to me.

Day 1- I GOT THIS SHIT! No huge cravings, stuck to recipes and snack suggestions. EASY PEASY.
Day 2- OOOOOH YEAH!  Again, stuck to it without any issues. Had my daily green apple, almonds and carrots for snacks. Drank a ton of water and was peeing every 3 seconds (which isn't far off from my normal emptying my bladder of every 5 seconds).
Day 3- Miserable, headaches, angry, crying. I could not control my emotions. I NEED A COOKIE!!! Colleen suggested I eat something carb-y. I ate some brown rice, and I felt a little better.
Day 4- Virtual Advocacy conference at Bristol-Myers Squibb. Pre-conference snacks were veggies (damn, those crackers looked yummy) and post-conference cocktail hour, more veggies, olives and seltzer. I had almonds in my bag, and I literally stood on the complete opposite end of the room from the dessert table.
Days 7, 8, 9- Why yes, it's a genius idea to go away for a few days while unable to partake in deliciousness. Went to ShopRite before I left and stocked up on more almonds, carrots, sunflower seeds, pistachios, and green apples. Somehow, someway, I survived. I made it through a pit-stop at McDonalds while PJ delightfully ate a Happy Meal, I watched Steve drink many a craft beer as I chugged seltzer… the hotel we stayed at even tested me, as they handed us 2 GIANT, WARM, DELICIOUS chocolate chip cookies when we checked in. That's right about when I lost it. I stuck my nose in that bag, and sniffed like my life depended on it. I made it through 2 hotel buffet breakfasts (a delicacy in my book) watching my loved ones chow down on waffles, french toast, potatoes (boil em, mash em, stick 'em in a stew!), and Fruit Loops. Day 2 is when I licked one of PJ's Fruit Loops. And you know what? I would do it again.
Day 13- On the beach with friends watching them all throw back cold beer after cold beer. Mmmmmmm, water! We went to a bar for dinner, and I ordered seltzer and a salad. Let's not talk about how amazing the beer list was (definitely now a favorite spot in Wildwood, good choice Fitzie!).
Days 17 & 18- Is this fucking over yet?!?!?!?!!?!??!
Day 19- July 4th. Steve and I go to the local Amish Market to get filets to grill for dinner. As I walk in, I am bombarded with the intoxicating aroma of fresh donuts. Some of these donuts are covered in chocolate, jimmies, and the winner, FRUITY FREAKING PEBBLES. Yes my friends, somehow the Amish know that covering a donut in sugary, fruity, crunchy deliciousness of every 80's kid's daily breakfast will sure to be a crowd pleaser in 2014. Must. Get. Passed. Donuts. Success!!!!
That night during fireworks, I broke down and drank a beer. Enter guilty feelings. Poured out half (sorry beer gods).
Day 20- Almost there!!
Day 21- I DID IT!!!!!!! I REALLY REALLY REALLY DID IT!!!!!!!!!!!!!

Note: DO NOT type "Swingers gif" into Google as it may cause permanent damage to your retinas. I learned the hard way...

So, how do I feel? First and foremost, I'm damn impressed with myself that I was able to do this. Toot toot, mofos. I think the biggest thing I noticed right away was absence of huge plummets in my blood sugar. Usually about 2-3 times a day I would get shaky, sweaty and bitchy, run to the kitchen and shove anything sugary down my throat and chase that with orange juice. Chugged straight from the bottle. Cause I'm a classy gal like that! But, it did not happen once over the 21 days.

My clothes began to fit better, I was less bloated and puffy all over. Jeans I couldn't get over my ass on day 1, easily slid over my bum on day 6. I didn't look like I was squeezing my body into sausage casing, and I didn't have to unbutton my pants after a meal. Some of my minimal-prednisone-dose clothes started to fit!!!!!!!

The physical cravings were tough. In the early days I literally felt like I was withdrawing from one of my medications. Again, I was emotional, bad headaches, and all I could think about was sugar. As the days passed, the physical cravings subsided and became more emotional. I got some bad news, I wanted a cookie to cope. I saw everyone drinking beer, I wanted to join in on the fun. Friday night pizza turned into Friday night Veggetti.

I didn't notice a huge difference in my lupus symptoms. I've read many articles of those with SLE who claim they "cured" their lupus by clean eating, cutting out gluten, sugar, etc… Some say they were able to stop taking ALL their meds. I can't help but wonder what their degree of disease activity was before the changes in diet, I would have to assume mild with no major organ involvement. Mine has become more severe over the years, and as you know, I've had multiple major organ involvement. I did not go into this thinking cutting out sugar would make any of my lupus symptoms go away, and while I don't doubt those who make those claims did indeed feel better, I'm curious if they really do have true systemic lupus. At any rate, in my experience, no huge changes in joint pain or skin rashes.

Going into this I had already lost 25 pounds of prednisone weight and weighed in at 130lbs at the start.

Day 1, 130lbs
I'm not sure if I'm more horrified with my belly or at how disgusting the bathroom mirror looks.

Day 21, 125lbs
Look at that headless, sexy bitch in the bikini!!
Absolutely no photoshop, picmonkey, airbrush, nothing!! (not that I know how to do that anyway, plus I totally would have blurred out the stretch marks at the tops of my thighs!) 

Surprisingly, this non-modest gal felt a little funny posting these pics, but, I wanted to show you the difference. I'm 5 lbs lighter, and a lost a TON of bloat. I've noticed a HUGE change in my confidence, my mood, and overall I'm happier.

I plan on sticking with the dinners, because they are delicious. Steve enjoyed them, and actually liked zucchini "spaghetti" and cucumber "noodles." If I want a cookie, I will damn well eat a cookie. I'll drink a beer. I'll partake in pizza. I just don't have to gobble allll the cookies, beer and pizza!

So, the moral of the story is, if I can do this, ANYONE can!!!! Any questions, I'd be happy to ask. I'm hardly an expert, but again, I got through it!

Love you all!!! <3

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Monday, July 7, 2014

There's a hole in my heart that can only be filled by you...

Holidays are hard. I'm not talking about the stress that comes with the holidays, or at least, not in my case. As my sister Brie would say, holidays make me feel "ALL THE FEELINGS!"

Holidays remind me of the hole in my heart. No, not the literal holes, as they were patched up by the cardiothoracic surgical stylings of Bill Norwood, MD. I'm referring to the void I feel of not having kids. Holidays emphasize that void, and make my heart ache in a way I can't explain.

8 months out from my tubal ligation and I thought it would be easier to see the Facebook posts, the Instagrams of 'Baby's 1st 4th of July!' pictures, family photos at the beach, a parade or kids riding their decorated bicycles. Steve and I watched fireworks with Brie and her in-laws, who I love spending time with. They are a giant, crazy family, and no exaggeration, there were at least 25 kids. I looked around everyone sitting in the middle of the cul-de-sac joyfully watching the fireworks, and became extremely upset that I didn't have a child of my own snuggling in my lap, decked out in glow sticks.

I've gotten the hang of putting a lid on my emotions before they ever get to the surface, but there is something about holidays that allows ALL THE FEELINGS to boil over. Obviously the simple answer is to be a hermit for a few days, avoiding everyone, social media and all reminders of children in their I LOVE THE USA garb at all costs. Because… duh. Why should I be a rain on anyone's parade?

Yeah, that will never happen. I love holidays and the family/friend time that comes with them, and I'm certain avoiding everyone would make me feel worse. I'm beginning to learn, that as much as I hoped it would, some days are never going to be easier. In the last year, it was a constant, 24/7/365 pang, watching those around me have their first, second, even third child. Now, days pass between the bad days, which I'm grateful for, I'm quickly learning that I may just have to embrace the remorse and deal with it as it comes.

I've been getting very restless in our giant house lately, talking to Steve about selling the house and moving to the city. It's been set off by the "Look how much my kid has grown!"first and last day of school comparison pictures. Despite all the "you live in that huge house and don't have kids?!" questions and glares, I don't owe an explanation to anyone. We pay our mortgage on time, we pay taxes, and we aren't mooching off the government. I've said it before, but as long as I'm paying for it, what's it to you if my lipsticks have their own bedroom? But, we pay a ridiculous amount of money in taxes, which, when we thought we'd have kids to send to school, wasn't an issue. Now all I think about is how we could better use/save that money, instead of spending it on taxes that will never benefit us.

When we had our house built, it was the first part of our plan to start a family and Steve and I were so proud to do it on our own. Yet, in matter of months, dreams were shattered and chapters rewritten. When at first I was so into meeting all my neighbors, going to Ladies Nights, and trying to make friends, I soon found myself becoming a recluse. I couldn't face them, I didn't want to be in houses that looked exactly like mine but filled with toys, see decorated bedrooms and think of the identical room in my own home that remained empty with painter's white walls. I felt like I had nothing in common and diddly squat to contribute to any conversation.

Ugh, just writing this makes me feel whiny and annoying. I know none of my neighbors saw me as a childless mongrel, but that's how I felt (feel). The girl (me) who always says whatever the fuck is on her mind becomes a stuttering idiot around them, and for awhile it was just easier to avoid my neighborhood at all costs. The ironic thing is, my behavior sounds childish, yet, it was how I had to deal. I'm so jealous of the couples who can put themselves in the middle of all that, and not be outwardly affected. Why can't I?

And now it's July 7th, and all the 'woe is me I'll never be pregnant' feelings are starting to dissipate. In this shitty hand, I do have MUCH to be grateful for, and right now I'm grateful that this grief is starting to not weigh me down so much. I think holidays will always be hard, and I have to remember I'm human and sometimes, I feel all the feelings.

God made Oreos & Dippin Dots for a reason…

Love you all <3

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