Personal Stories - HockeyGirl

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Hockeygirl gave permission to post this here. She writes at Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.

I’ve regained my life in many ways thanks to the Cushing’s Help community. Without them I never would have got my diagnosis and treatment. I had my BLA (bilateral adrenalectomy) just over a year ago and since then I’ve gone back to school and I played ice hockey for the first time in 2.5 years last week. I still have issues living without my adrenal glands and my cushie/BLA buddies are there for me. They pick me up when I fall down and I do the same in return. We live in a world where doctors don’t understand us or our disease process so the only way to save our lives is for us to band together. It’s pretty sad when you actually wish for cancer because there’s more support and understanding connected to it. Cancer patients generally don’t have to fight for every single scrap of health care they get. Doctors fall at the feet of cancer patients and promise them the moon, Cushing’s patients languish for years pleading for help only to be told no. We’re just fat, crazy and lazy, which couldn’t be farther from the truth.

On the idea of getting patients into clinical trials, why not run ones we actually want to participate in? The lack of trials for Cushing’s/Addison’s disease is seriously appalling! There is one I’m dying to get into, but it’s only open to Swedes and Norwegians. That doesn’t do me any good. I”m pissed at the NIH for even listing it on clinicaltrials.gov. Why get my hopes up that I might have a chance at something even better when I’m not allowed in the trial?

Not to mention, endocrinology is stuck in the stone ages, they don’t want to move forward. Look how slowly insulin pumps have moved into the diabetic world. Now imagine how long it will take me to get one to replace my adrenal glands? Not very likely in my lifetime, if ever. Doctors need to shift from seeing patients eating, breathing and walking, and thinking they’re fine. They need to look up and see that we want more. We want lives. We want to be productive. We want a chance to really live, not just fight for survival every day. I’m not OK with status quo, I want more and I’m capable of it if I’m given the opportunity to make choices to advance my care. Listen to me, make me a partner in my health.