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. (You’re welcome!)

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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.Β 

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.

πŸ™‚

Stacey


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