"Let's Take Action" by Elena Goodrow

It can be difficult to determine when it’s time to take action. If we are racing towards disaster, when do we try to slam on the brakes and when do we let the airbag do it’s job?

The past two years I have had an assortment of health issues. As the months go by, more unusual symptoms pop up with seemingly no explanations. My care team has employed a “wait and see” plan. Wait, see if the symptoms change, and then see what happens next. This strategy is certainly what my insurance prefers. They don’t want to pay for tests and scans they deem unnecessary, So, at what point are they finally necessary?

I’ve had so many GI problems I started a spreadsheet to keep track. I’ll spare you the gory details… you don’t want to know. The main idea is that I have had stomach pain that doesn’t go away. I tried several types of diets, switched enzymes, changes dosages, changed antacids, cut out all sorts of inflammatory foods, and still no changes. My CF team finally decided to refer me to a GI specialist. That decision took longer than I preferred, but I choose to look ahead to the future rather then dwell on the past.

Meanwhile, the pain only got worse. I get these painful episodes of stomach pain that result in being unable to stand up without assistance. For a year, I got these episodes around once a week. Then, it become once a day. Then, multiple times a day. Then, the pain never stopped.

The “wait and see” method wasn’t cutting it anymore. I needed to do something,

So, I packed a bag and decided it was time to go the emergency department. The closest reputable hospital is about an hour away from where I live. Did I want to go to the ER amidst the “super flu” that is taking over the country? Of course not. But it was time to take action.

I was extremely fortunate to have a fantastic experience at this ER. All of the providers took my symptoms very seriously, they were knowledgeable about CF (rare in my rural town), and were so kind. I got a CT scan, which came back clear. So that was good, but still no answers. They gave me medicine to help with the pain, loaded me up with fluids, and discussed treatment plans. I did get a fun souvenir… some gnarly bruises and rashes from the IV they gave me (thanks to my extremely sensitive skin that hates adhesive).

Since that ER trip, I saw the GI specialist which was also a great experience! They LOVED my symptoms spreadsheet, I appreciated their enthusiasm. They were glad I had already tried so many things to fix my pain, because it makes it easier for them to justify driving full speed ahead. They ordered several tests, an MRI, scheduled an upper endoscopy, and a colonoscopy.

It’s been a long process of advocating for myself and searching for answers. I’m hopeful this next chapter will bring solutions to my pain. It’s unfortunate that advocation is so crucial in the medical world. As people living with CF, we all know that we must fight for what we need. We need to trust our gut on when it is time to take action. And above all, we need to care our ourselves and others.

If anyone has a story they want to share, or wants to connect with others in this community, always feel free to reach out to me. 💜