The Big Craple Incident: How My Rare Disease Canceled My Travel Plans

A special trip to New York City was a little over 24 hours away.

I was going to honor one of my favorite humans, Georgia Arnold, for her contributions to the healthcare sphere which have been vast and worthy of their own space. So shout out for the visionary work Georgia provided as the executive director of the MTV Staying Alive Foundation for 25 years. (Full disclosure: I served on the Board of Directors and appeared in one of their World AIDS Day specials way back when [insert space echo] in the year 2000! So I've had an in-front-of-camera and front-row seat to the magic.

Needless to say, my partner Gwenn and I love Georgia.

An unexpected bleed

The day before we were supposed to travel, I had an unexpected bleed. Basically, I noticed some blood in my stool. Not a ton, but for someone with a bleeding disorder, any amount is, of course, a cause for concern.

I contacted my incredible healthcare team and gave them the info. An aggressive and reasonable plan was laid out: 3 days of treating myself at home with 1 injection of clotting factor. To put this in perspective, I've only had a handful of instances that required more than a one-and-done treatment in my adult life.

After the 3 days of treating, it would be a wait-and-see operation. I told my healthcare team the following, "InspecTurd Gadget (that's me!) is on the case." I try to prescribe as many laughs as I can to the wonderful people who chose a career in helping out us rare diseases.

An easy decision to cancel our trip

Thankfully, each day of treatment improved the situation to great effect. After the first treatment, I noticed a significant improvement. But unfortunately, based on the timing, we made the easy decision to cancel our trip before my first treatment.

With a rare disease, I've learned that it's important not to roll the dice. Sure, I could have treated "on the road." But, if I'd gone to New York City, I would have taken all of my medication on hand. Which was barely enough for, you guessed it, 3 treatments!

How much medication I keep on hand

Since I have moderate hemophilia, I treat "a la carte." That means, depending on mishaps, how much I treat myself can vary wildly from one year to the next. I keep my medication refrigerated. But it expires after a year or so. At some point, it was deemed that too much of my medication was expiring, so I only get prescribed enough to get through one of these multi-treatment situations. The plus side is that the specialty pharmacy I rely on is very attentive and can overnight product if necessary.

As much as I wanted to go, I stayed put

Still, the way that whole system is set up and not knowing how severe the bleed was, I was apprehensive about taking a trip. The thought of getting in touch with a hematologist or clinic in New York City or having to get medication shipped to a hotel felt daunting. Basically, it would have been a pain in the ass. The one upside of the situation was that I wasn't in any physical discomfort, so adding a degree of difficulty to things seemed like a mistake.

I was supposed to say a few kind words about Georgia and my experiences with MTV Staying Alive. Georgia and the Staying Alive team were, of course, wonderfully awesome upon hearing about my dramatic change in plans.

"Can we do anything to help?" they asked.

(You've done enough, my goodness. There, more flowers for you!)

With a single-minded purpose, I stayed put. As much as I wanted to be at the event, I'm old enough to know myself and know that the only thing I'd have been able to think about during the trip was the bleed. My rare disease had a great opportunity to visit the big apple, but it acted up and lost that privilege.

Sometimes my medical reality just sucks

Emotionally, I handled it all quite well. At first.

It was pretty clear that the bleed was a random one-act play, but when pictures from the event started getting posted online, I got so bummed. But instead of retreating from the emotion by self-shaming or refocusing on the positives, I allowed myself to really feel it. I can't explain how much that helped.

As much as I joke and laugh about my medical reality, I think it's just as important to truly acknowledge how much it sucks sometimes. In real time. Our rare diseases can disrupt our lives at the most inconvenient times. No matter how on top of things we are, one accident or lab result can shift things dramatically.

When something like my "gut punch" happens, the best course, in my opinion, is to respect the parameters of the best and worst-case scenarios at hand.

What about you? How do you handle life's "gut punches"? Have you ever had to unexpectedly change plans because of your rare disease? Tell us more in the comments below.

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