Hanging Out in Limbo

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Waiting for experts to weigh in on my situation is like hanging out in limbo – I have no new treatment plan and I don’t know what the future holds

In the last health update I did, I was stuck in limbo and I’m still there. But April 5th is looming in the distance, getting closer and closer.

Upcoming UCSF Medical Center Appointment

What’s April 5th? It’s the day I go to UCSF Medical Center to get the opinion of a GI expert whose research specializes in fertility and new medications. Because Remicade failed on the ulcerative colitis end, my GI doctor wants to switch to a new medication, Entyvio. In her mind, there is nothing more Remicade can do for me.

Unfortunately, Entyvio does not treat my sacroiliitis and other biologics can’t be used in conjunction with it. I’m in a bind and my doctor is hoping that another opinion might open some doors for me.

So while I’ve been waiting to find out the next path to take, I’ve been super busy cooking, baking, and blogging. As always, this blog serves as an outlet for me. In a flurry of creative energy, I’m able to forget about being stuck, I’m able to rediscover my love of food and overcome my fear of it, and I get to say “Fuck You Ulcerative Colitis.”

But here is the glorious contradiction, the bitter irony, the double dilemma. The very things that allow me to say “Fuck You” to ulcerative colitis, that feeds my dreams and aspirations, that gives me hope I can create a job for myself that is flexible to my ulcerative colitis, are the absolute worst for my sacroiliitis.

Sacroiliitis and the specter of pain

Photography and cooking require a lot of time spent on your feet. And I can’t help but remember the time I had an internship at the Cal Academy of Sciences in the Anthropology department.

I was responsible for taking pictures of ethnographic artifacts and doing work in Photoshop on them. My back had been acting up. This was before I knew what was actually wrong with it. I was kneeling, taking a photograph, and in so much pain.

I paused for a moment and felt my molars grinding together because I was concentrating so hard on how to get up off the floor. My mentor asked if I was okay and I answered with a high-pitched, overly happy “aha!” As soon as she left the room I sobbed as I got up.

Choosing which disease I’ll live with

My nightmare is that I’ll have to choose one of my diseases to live with. Pick your poison. Would you rather live your life close to a toilet and be afraid of food or would you rather be immobilized and unable to walk? I flip flop on my answer a lot but I truly believe I’m more afraid of my sacroiliitis.

I’ve felt such freedom not having to worry about it. But the threat of its reappearance in my life is making me take stock of all the activities I love to do. In my imagination I see a red marker striking out almost all of them.

That’s where I am right now. Just waiting and distracting myself by creating recipes, testing them, taking photos, and trying to learn how to do everything better. You’ll be seeing some of the end products soon!

Read about the verdict in Part XI – How Losing My Colon is a Transformation and Not a Loss

My Whole UC Story

You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:

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