Last week, Mark from the CCFA support group sent out a call for panel members for a CCFA education event for nurses. I wasn’t sure whether I should participate, because, what should I say. Yes, I have a blog where I tell the whole wide world about Verena and the Crohn’s and yet, it’s not the same- I can rethink my words, I can re-write, edit, and work on blog posts. And still, I felt I needed to put my money where my mouth was. So, I signed up and went. Corey, another member from the group joined us and unfortunately, the third person who wanted to come was stuck in traffic and couldn’t make it. Kathleen Newbould Waite from the CCFA Northwest chapter lead the session.
There were about 25-30 people in attendance, all nurses specializing in IBD. Kathleen, a nurse and Crohn’s patient led the session, and moderated with questions. I am trying to re-create them here.
First, Cory and I introduced ourselves, both of us have Crohn’s. His was diagnosed within the last ten years, and mine in 1984. We spoke about the medications we’re on (entyvio and remicade) and how we are faring with them (fairly well).
Kathleen’s next question was whether we had had any problems at work, or needed accommodations. We both replied that we have had understanding employers, who value the work we do, and hence are willing to work with us.
Next, we were asked about our support network-which was for both of us, our family. I mentioned that both my grandfather and my uncle have ankylosing spondylitis, and that I have had role models there on how to lead a happy, fulfilling life, Crohn’s or not.
A big question was insurance, how to pay for our (expensive) meds and how nurses can support patients there. Cory did say that it has been a financial strain, but that the nurses have been amazing when enrolling in the patient support programs that Humira, Remicade and all the other biological producers have. While I currently have great insurance, this wasn’t always the case. As a graduate student, I had awful insurance, and doctors and nurses at the Student Health Center did what they could, but they were overworked, and frankly, out of their depth. I was on payment plans, and when one day my insurance didn’t want to pay for the Humira anymore, I was on my own. Navigating the health system, the insurance system on top of finishing grad school was an absolute challenge. Here is where I think the CCFA is asked- if I had had a contact person on campus, or even in the city of Davis, I would have been grateful. Once you have proper insurance and are at a gastroenterologist, you’re set. Nurses are the silent heroes, working in the background, talking to insurances, working with patient assistance programs. I can’t thank them enough.
Corey and I for the most part had similar experiences- we talked about how hard it is to remember your meds, yes, even a grown-up, functional person, difficulties staying hydrated (so hard, yet so important).
We both stressed, that nurses, even though they are often overlooked, had an impact on us. I shared how when I was 18, I chatted with a nurse, I had trepidation about going to university, where would I go, where would I live? And she just said “oh, I am not worried, you Crohn’s people are all so ambitious.” It’s small words like these that stick with you.
I can’t thank the attendees enough. They were so kind- not only had they spent their Saturday learning more about Crohn’s, several of them thanked Corey and I for speaking. Thanks to Kathleen and her great moderation. I am glad to be a part of the CCFA.