Until today, I didn’t really have a way to describe what I went through after diagnosis, but after I thought about it, the Wizard of Oz came to mind for some reason. This story may have a different meaning for you, but when I think about it today, I can relate it to my journey after being diagnosed with Churg Strauss. When Dorothy embarks on her journey down the yellow brick road, she hopes to find the Wizard that will tell her how to get back home to Kansas. Along the way she meets others that are in some way flawed, and want to join her on her journey to find the Wizard. They all feel lost and lonely in this land of OZ. Feeling sorry for themselves, they want to find this magical man that can fix all of their problems and make them “whole” again. This is how I felt.
I was lost, lonely, and I definitely felt sorry for myself. I thought, “Why me?” I tried to convince myself that I didn’t feel this way and that the “why me” attitude wasn’t going to do me any good, but I just couldn’t help it. I spent weeks crying, and trying to hide it from everyone. I wanted to be strong, and I thought I could be, but it just wasn’t there. My symptoms went away after taking high daily doses of prednisone, and to everyone else I looked perfectly healthy. That’s the thing with a lot of autoimmune diseases, when you are on medication that stops your symptoms, everyone thinks you are healthy. I met with a doctor at the Boston University Vasculitis Center. The outlook was good, but I was told that I have a serious and rare disease that needs proper care for the rest of my life. This was good and bad news at the same time. Based on stories I have read, I was far better off than some (if not most) others diagnosed with Churg Strauss, and far better off than other people with a number of other health issues. So why should I feel sorry for myself? I think that was one of the biggest struggles I dealt with, the guilt of feeling sorry for myself when I felt I had no reason to. For anyone that has not dealt with something like this, it’s not something that you can comprehend and it’s not right or fair for you to judge. Don’t say to someone; don’t feel sorry for yourself, think about all those other people that are much worse off than you are. I think that feeling sorry for yourself is a natural phase that you go through when you deal with something like this. It needs to be recognized and dealt with, so that you can get past it. You shouldn’t have to feel guilty that you feel sorry for yourself, that doesn’t help you either!
Something else that I have had a difficult time with is the “what ifs.” Never mind that I had struggled with this before having health issues, now I just had more fuel to feed the fire. I read stories from other people with Churg Strauss so that I would know what I was facing, and this just brought about a whole bunch of new things to worry about, and my “what if” list kept growing. What if I can’t have children, what if I do have children and get so sick that I am a burden to them, what if I get really sick and can never work again (as is the story for many with Churg Strauss), what if I get so sick that I suffer miserably but not sick enough that I die and lead a tortured life of agony! I can’t even think of all the “what ifs” that have gone through my head, but there have been many. Some of them have been legitimate things that I should worry about and prepare for, but others shouldn’t have even crossed my mind. Unfortunately some of these “what ifs” are directly related to the medication that makes it possible for me to live. I have been on prednisone and nothing else for my Churg Strauss. I am on other medications for my asthma, nasal allergies, and other issues, but as far as controlling my Churg Strauss, prednisone is the cure all. From what I know, everyone that has Churg Strauss is on prednisone, and some take it in conjunction with other medications (some that are typically given to cancer patients.) For now, I have decided to only take prednisone. I have my reasons for this, and I really want to cover this subject in depth, so I will save that for another post.
Through all of this, I have realized that there are just some things that I am going to have to accept, things I can’t change. There are also a lot of things that I CAN change. Just like Dorothy, the Tin Man, Scarecrow, and Cowardly Lion found out…there is no magical Wizard at the end of a yellow brick road that can make things all better. My journey is now focused on changing the things that I have control over, and accepting the things I don’t. It doesn’t promise to be easy, but it’s better than just giving up!
Photo credit: airdiogo