When I became sick years ago the more research I did on being chronically ill I learned a strange term for people like me. Zebra. "When you hear hoof prints think horses not zebras." This is a term taught to medical students. In medicine zebra is used as a term for rare diseases. Doctors are taught to look for the simplest answers, horses, but sometimes it goes much deeper, zebras. Sometimes it isn't all cut and dry. Sometimes it takes time, time to diagnose and time to treat illnesses. One size doesn't fit all in many cases. I'm pretty sure,at least from my experiences, that doctors do not like zebras. Doctors are taught to make us better and when that doesn't happen it has to be frustrating for them. I get it. I really do. But I'm sure that is why so many doctors see my history and want to bolt out of the room. Happily I can finally say that isn't happening anymore. I have an awesome team of specialist that are bringing back my faith in doctors. Don't get me wrong I have had a few good ones in the past, emphasis on few, but now I can say all of my doctors are top notch. Believe me I know a good doctor from a from a not so good Doctor. I truly believe my luck with doctors changed when I switched to the Spectrum Health System. I am thankful beyond words and I tell them how much I appreciate them working with this zebra every time I see them. Having a doctor believe you is half the battle when you are chronically ill, proof in my lung diagnosis.
Yesterday I went back to my pulmonologist for what was suppose to be a four month recheck and ended up being a two month recheck up because I finally broke down and called last Friday. I was tired of feeling like I wasn't getting any better and had a few new symptoms I needed to talk to him about. He wanted to see me because of my contacting him. I had another breathing test to compare it to the one I had last December. When I saw Dr. Koets after the test for the results I asked him if the test was worse and he said it hadn't changed from last time. In fact the numbers were exactly the same. Then he told me the chances of that happening are almost unheard of. I have been on treatment for four months and nothing has changed? We discussed the new symptoms, he checked me out, took his notes, and said with a smirk on his face, You are a tough case to figure out." I told him, "I know I am." In my head I was really thinking, 'He gets me!' I'm not sure but maybe some people would take offense to a comment but for me it brought validation. I live in a world where I know people think it can't be real that I am as sick as I am. Comments or smart remarks from people in the past about their doubts stay fresh in my head but the reality is they have no clue. Hearing a doctor say it like it is, for me, is like a dream come true. It helps me to feel a comfort in knowing he wants to help me. A simple comment like his helps the zebra mentality I have every time I go to the doctor bring me into the real world of being a horse like everyone else. If that makes any sense. The new line of defense for two weeks is prednisone. We are hoping this will open up my airways and help me breath better. If it works he said there are other inhalers we can add to my current treatment. If not we will go from there. I am hoping and praying this works. I'm sure he is too. This is the third round of steroids I have been on since February which kind of scares me but not breathing is much scarier and at this point I am willing to try anything. What is a zebra suppose to do? I trust my doctors fully and I will follow their treatments to a tee hoping for the relief I deserve. The best part about steroids is that it takes away most of my arthritis pain and gives me energy. Steroids aren't good for you but the benefits are wonderful for a chronic. I really wish they weren't so bad for you because they make life doable. I feel like I want to do things because less pain means less fatigue. I will enjoy the next two weeks of unexpected relief and go from there.
Round three on steroids begins. Let the games begin!