A Weekend in LaLa Land

A Weekend in LaLa Land

Hey Ya’ll!

Hope your week is off to a great start! Thought I’d update you on some real life events:

We went jet-setting for a weekend…

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…to the City of Angels!

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We hiked to the Griffith Observatory after a quick breakfast at Roosevelt Cafe where they served copious amounts of avocado slices with my spinach and mushroom omelette, and not skimping on the extra avocado is my love language.

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Here I am modeling in unnatural poses at iconic tourist locations in an attempt to make Zack as uncomfortable as possible in public.

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The switchbacks on the trail were NO JOKE, and we got a decent little workout in during our short hike. California is beautiful.

What possessed us to go to L.A. just for the weekend?

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Football.

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at the Texas Exes tailgate at Exposition Park

The last time our Longhorns competed against the USC Trojans, we were the underdogs for the 2005 Nation Championship at the Rose Bowl. We were the underdogs for this game too, but we lost…

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…but it was by one field goal in double-overtime. In case you don’t keep up with football, all you need to know is that my Longhorns have been sucking it uppppp for far too long, so I was quite pleased that we kept up with a top 5 ranked team. Hit me right in the feels.

That night we went for a live show at The Comedy Store on Sunset Blvd (where Robin Williams, Dave Chappelle, Steve Martin, and more got their starts!). Entry was free with minimum purchase of two drinks, so I ordered two hot and fresh out ‘the kitchen chocolate chip cookies and a water, naturally, because I’m seven years old. HILARIOUS. Crude and witty, my favorite combinations. I want to return to at least a dozen more shows.

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Then back to our quaint little bnb before a late brunch and a plane home the next day.

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Once we returned home reality set in and I had to continue fighting with my doctor’s office and the infusion center to get me scheduled for an infusion.

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Sometimes managing a chronic disease feels like a part-time job…Jaxon agrees.

After returning from L.A. I was about a week past-due for my infusion. I had been sending emails and making calls the week leading up to our trip whenever time at work allowed, but I had no luck getting anyone motivated to send a doctor’s order to my infusion center.

Basically my infusion center discontinued my drug, Remicade. “We no longer carry that drug because it is too expensive.” But no one bothered to let me know BEFORE my infusion, so I had to find out once I actually arrived to get infused and there was no order written for the new drug.

So after enough back and forth communication to make me lose my mind, I showed up to my doctor’s office with an order. “I’m not leaving this office until he signs this order.” All he needed to do was fill it out. DONE!

…But he didn’t fill it out correctly. To make a long story short it took nearly two weeks after my scheduled infusion time to get everything sorted, but finally I GOT INFUSED!

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I have fought for over five years to reach remission. I’m finally here, and I’ll be damned if I begin having symptoms again because of a flawed healthcare system and people who won’t do their jobs. Being your own health advocate requires that you raise hell from time to time as if your life depends on it…because it does, friends. It really does.

But I must give a shoutout to my infusion nurse. She was a heaven-sent angel.

The rest of this weekend was spent napping (because infusions = the best naps evahhh), getting pizza (because infusion days always call for pizza)…

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…and (sour) beer…

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… and more football at quaint neighborhood bars

(if you’ve never visited OKC, you should. It’s tremendously underrated).

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Hope everyone has a great week. Hang in there and keep fighting, all my fellow IBD and/or chronic disease warriors! You life is worth it.

🙂

Stacey

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R E M I S S I O N

Monday was the best day I’ve had in a long time.

“Are we allowed to use the ‘R-word’? Are you saying I’m in remission?”
“Yes. You can say that you’re in remission! Be proud of our hard work.” <- my doc.

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After nearly five years since my diagnosis with Inflammatory Bowel Disease, my medical chart has added a new word to its history: REMISSION

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A brief recap:
Late September 2012: began noticing symptoms (x rated version: bloody stools 30x daily and through the night, fatigue, sudden weight loss, nausea)
October 2012: Diagnosis “Moderate to Severe Ulcerative Colitis”; began Remicade IV treatments immediately
April 2013: hospitalization (“holistic approach” without meds didn’t work- oops)
May 2014: Mega-flare
June 2014: diagnosis changed to “Crohn’s disease” after 2nd colonoscopy
July 2015: Ran first half-marathon while fundraising for cures to Crohn’s and ulcerative colitis with the Crohn’s and Colitis Foundation of America; still not in remission
August 2016: Concerns that Remicade infusions are losing efficacy; increase frequency of infusions
December 2016: New medical center, new doctor, new state, new meds
February 2017: Diagnosis is confirmed to original dx after 3rd (or 4th?) colonoscopy and biopsies, “Moderate to Severe Ulcerative Colitis”
May 2017: Reached clinical REMISSION

…what does that mean?

My labs are normal, showing no signs of active disease, meaning that my inflammatory markers are all within normal range. Also my micronutrients are all within normal ranges. I have zero symptoms in a day. ZERO. And then I wake up the next day after sleeping completely through, and I have zero symptoms again, and it keeps happening.

There’s no guarantee how long remission will last, since there’s no medical cure for Crohn’s disease or ulcerative colitis. My doctor is enthusiastic to work with me though, and he thinks there’s hope in the future for me to eventually live life without my IV infusion with a 50% chance of relapse. I actually like those odds, and I’ve NEVER heard a doctor reference my life without infusions, so this made me cry happy tears…and I’m not a happy tears kinda girl. However, weaning my body off of the infusion will take months, potentially even years because it’s a slow balancing act: increase the time between infusions, check blood, remain on oral medications, check symptoms, lower dosage of oral meds, check blood, etc.

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The goal now is to stay in remission and eventually get into “deep remission”. To me it sounds like I’m currently in remission with training wheels, but I gotta ride like a pro before I can be set free. More patience and hard work, and I am completely up for it!

In order to appreciate a milestone of this magnitude, I’m gonna be nostalgic for a hot second. Lessons I’ve learned from Crohn’s/ulcerative colitis/whatever the heck my diagnosis was when I learned these lessons:

1. Vulnerability is your friend. Vulnerability leads to empathy. Be vulnerable, because it creates a genuine connection with people that you can learn from, be encouraged by, or befriend. You can still keep your dignity and humility AND manage to be vulnerable too- don’t worry :).
I can connect with people on really weird, strange, close levels now because of my new-found empathy powers…and sometimes that freaks me out. But it’s cool, too.

2. Disease is a lens to view the world. NO WAY could I see the world in the way that I am able to see it now had I never been diagnosed. I’m able to feel the importance of time. Time is vital. Time is not on our side, but we can make the most of it…because it’s a gift. Truly. Sound cliche? I don’t care.

3. Humor is your greatest weapon. Whether I’m shitting my pants in traffic, dealing with a bad report, debilitated by fatigue, or having the greatest day of my life…humor. Always, always a good reason to laugh, usually at my own expense, and that makes my day. It’ll make yours too, if you let it.

4. Strength isn’t something that comes by osmosis. Life is tough- no, really. Life. Is. Tough. But one day you’ll look back thinking, “How did I survive that? How did I make it through?” You got stronger. While you were driving that struggle bus, you were gaining character, muscles, emotional fortitude, and badassery. You couldn’t feel it, but you were resilient. And now your resilience has made you strong. Way to take those trials like a champ! Find joy in trials, because you’re gonna find strength.

5. Kindness. Be slower to judge. You don’t know what people are enduring. We’ve all been through some small version of hell at some point, and some people handle that with more grace than others. Be kind to yourself, also. Rest, breathe, relax, sleep in if you need to, but don’t beat yourself up. You’re a work in progress, and you deserve a little kindness; we all do.

Oh- and celebrate every little accomplishment along your way. The best is yet to come!

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^ How I celebrate/deal/rationalize/breathe

Thank you all for celebrating this milestone with me!!!

-Stacey