Executive Decision: Get on the Boat

When it comes to new/unusual treatments, I’ve had the door shut in my face many, many times.


Like enough times to know at this point that there is literally nothing in this world that I will NOT try to get if I think it can improve my quality of life. But first I’ll get these thrown in my lap:

  • You can’t do that alone.
  • You can’t do that at home.
  • You can’t, you don’t have the medical experience.
  • You can’t because the pharmacy won’t prescribe it.
  • You can’t because I don’t feel comfortable prescribing it.
  • You can’t because it’s too complicated.
  • You can’t because I don’t know how to make it happen.

The boat is here. The boat is going to the life with the least painkillers and the most functioning GI system. Everybody get on the damn boat.

It’s a whole new world out there. If I’ve learned anything from the rare community it’s that there is legitimately no substance in the known universe that would not have patients and parents flying to the moon to retrieve, if it meant one healthier day.

Need an example? Take the Hempel Family.  Their daughters have Neimann Pick Type C.  Their parents didn’t let hell or high water keep them from getting the FDA to approve their treatment of a sugar compound called Cyclodextrin.

With this recent flare I’ve been trying to get a hold of a medication called Bentyl. If you’re in the IBD community on any level–you’ve probably heard of it. It’s a small anti-sposmadic medication usually taken orally.

This medication was prescribed to me WAY back when. I’m talking ten years ago. I’m talking pre-desipramene, pre-diagnosis, way back at a time where I was still only wearing black and praying for my braces to come off.

And it never worked.

I tried it on and off for years, but never, not even once, did it ever have any effect on me.

Until earlier this year, when I got an injection of it in my thigh during a particularly bad episode in the emergency room.

And wouldn’t you know it? THAT actually worked. (We’ve had some kind of ongoing theory about my GI system not metabolizing medications–as they seem to go a lot smoother when injected.) Fast forward to this flare and I’m feeling better. Taking the Bentyl shot two days in a row I think helped a lot. The first shot was in the ER, the second had to be done at the infusion center after a torrent of paperwork and phone calls.




I’ll be able to crawl out of the black hole of this flare up, but I’m frustrated running into walls with my insurance company, local pharmacies and the infusion center. I finally found something that works and I don’t have at-home access to it. My goal is always to avoid the ER for what are now just every-day “emergencies.”

I’ve been competent enough to give myself saline, take care of my port, and take two other IM shots as needed. So why not this one too? Can’t understand why everyone else has a melt down because we need to do something new/different. There is no such thing as “it can’t be done,” everything can be done. You don’t have to try harder or be better– you just have to think outside the box.

I’m really not reinventing the wheel here. It’s all right here in front of us.You’ve got a capable patient, a syringe, and medication that can prevent chronic, excruciating pain without dangerous side-effects. Sometimes protocol has to change to benefit patients in need.

So can insurance companies, pharmacists, law makers–please just take a deep breath and get your ass on the boat. I’m not going to wait around for people to decide whether or not it’s okay for me to feel better. Ain’t nobody got time for that.

I’ve got books to write. I’ve got weddings to plan. I’ve got a lot more interesting things on my agenda then to sit around at an infusion center for four hours every other day to get the fundamental right of not being in agony all day.

I understand that there are always going to be things. Little things. Small things. Exhausting things. Frustrating things. But whatever gets thrown into the equation–it has to come out to a better quality of life. If you’re going to have a crappy quality of life–what’s the point?

Maybe it’s asking too much to get convenient, non-time-consuming, affordable and effective treatment.

But it’s not like I’ve ever asked for anything less.

So why should I start now?







  • I hate that doctors, pharmacies, and other people have to make this so difficult, like we don’t already have enough difficulties in our lives. Especially if you already give yourself two separate injections, why won’t they give you this one? Sorry, I’m just a little frustrated for you and all the difficulties that those of us with chronic illness have to suffer through just to have a “normal” life.

    Love, Jenn