I have sat down to write this post many times over the last couple weeks. Scribbles to sentences to pages but inevitably they have all ended up in my (now overflowing) trashcan. Considering that there is no recycling in our complex, you can see why this bothers me.
Since August I have been dealing with the ramifications and complications stemming from what is known as refractory (unresponsive) celiac disease, or RCD. Odd blood work numbers in May led to the diagnosis, which led to the discovery of abnormal tissue growth in the lining of my digestive system. I went on a slew of medications this past fall to try and bring down the inflammation in the tissue and to limit any further abnormal tissue growth. For a while it seemed to be working, then it wasn't, then it was again. The unknown seesaw known as the human body.
Early last week I took my last round of immunosuppressants and steroids – designed to do everything mentioned earlier and push the RCD into a dormant state by essentially resetting my immune system. However, during the appointments that followed a new mass was discovered during a series of routine scans. I went in for an endoscopic mucosal resection on Friday and on Monday I sat down with the doctors to go over what was found and what my options would be moving forward.
They had not been able to remove all of the abnormal tissue growth and although they wanted to try another round of medications, or another surgery I chose to take a step back and see what happens. RCD can go into dormancy just as quickly as it flares up and my hope is that it has been beaten into submission for the time being. I will be undergoing periodic tests to ensure it has truly been mitigated but for now I am done tearing my body apart – physically and chemically.
This is not without some concern, but I have my reasons. Ever since we began decreasing the doses of medications I have been feeling better. Running, cycling, pilates, the list of things that I can enjoy once more goes on. My mood is better; I’m happier and significantly less depressed. Right now, being able to enjoy getting up every morning is amazing. I have a new found appreciation for sleeping through the night.
I struggled with this post for the longest time because I did not want to sugar coat it, but neither did I want to paint an unrealistically dark picture. In the end this is something I will always have to be mindful of with my health, but it does not and will not affect my every day life. Long term it just means adjusting to a new normal.
Thanks to everyone for your kinds words, prayers, thoughts, lucky pigs and support. Being so far away from home made for more time alone in a hospital than I could ever keep track of but I hope you know that you all made a world of difference. I hope you never find yourself needing that same support, but if you do know that I will be there.
Here is to never speaking of RCD on this blog again.