The story of my diagnosis seems so long ago. It happened about a week before Thanksgiving in 2009. I had an appointment with my new asthma doctor. I had seen him at least once, and I think this was my second or third visit. I know that I was going to see him because my asthma was acting up again (bad) and I wanted some answers. After years of dealing with a doctor that just didn’t seem to care and only seemed capable of prescribing prednisone, I was looking forward to hearing what this doctor had to say. When he asked questions (which every doctor should do) it opened the door for me to talk about my recent ordeal of odd symptoms. I didn’t think any of them had to do with my allergies, or that he would even care about them, but he asked the right questions and I felt comfortable enough with him to talk about it. I told him about everything that I wrote about in my previous posts, the increasing frequency and intensity of my asthma, the high white blood cell count on three different tests, the odd almost-passing-out-after-sneezing (or yawning), the joint and muscle pains, the rash, the abdominal pain, and any other little thing I could think about.
Something in the room changed. He didn’t ask me anymore questions, he didn’t talk about my asthma (the reason I was there in the first place), he just looked at me with concern and I almost started crying right then and there…even though he hadn’t said anything. I knew. I just knew that something wasn’t right and that I should be concerned. I don’t recall exactly what he said, but it was something along the line of, I think you have something else going on here that is more than just asthma. He wanted to discuss this with a colleague of his and he asked if that was ok with me. Yes, it was ok. I just wanted to know what was wrong with me. It felt like forever for him to come back and I could hear him talking to people outside the office, and then I heard him on the phone with another doctor. I was sitting in this tiny room all by myself and I was scared. I felt so alone and so far away from everything and everyone. I knew something was wrong. When he came back he said that the other doctor agreed with him and they both suspected that I was suffering from sarcoidosis, or some other autoimmune disease. I don’t remember if he mentioned Churg Strauss. I’m surprised I even remember what he said at all. He told me that he wanted me to go to the ER right away and that his colleague worked at a hospital and I could go there and been seen by him. It sounded like that was the best thing to do, since he had already been briefed on my situation and I just wanted answers ASAP.
The hospital visit is a little blurry, but I remember waiting forever to get into a room. I thought that since the doctor was expecting me that I would get in and get a room quickly. WRONG! I was already told that would be staying the night, but it ended up being about 7 days. The first day I had a bunch of blood tests, some kind of lung scan, and I don’t remember what else. At first they thought I had pneumonia in addition to the reason I was there, but it ended up that I didn’t. At some point the doctor came in and said something about an autoimmune disease called Churg Strauss Syndrome. I didn’t really comprehend what he was telling me, and I was too in shock to really ask questions or figure out what that meant, but I do remember crying. I ended up going online to look up information about Churg Strauss, and then I lost it! It sounded like from this point on I was going to suffer miserably and die!
The entire time I was in the hospital I was scared out of my mind and just didn’t think I was going to be myself again…or if I was even going to live. I kept having panic attacks and I felt entirely too alone. After about a week, I was sent home with not very much information, and no real direction for where to go from that point on. I don’ think the doctor really even explained very much to me. Another example of what a bad doctor is! I did some research online and found a Vasculitis Center in Boston with a doctor that had other patients with Churg Strauss. I made an appointment there and have been going ever since. The doctors there are fantastic and a prime example of what a REALLY good doctor is and what every doctor should be.
Scary and dark times followed me over the next couple of years after diagnosis. Up until about six months ago I was still not in a good place, but since then I have found a new confidence, a new purpose, and a new outlook. I will go over my struggles following diagnosis a bit more in depth in other posts. My goal now is to see if it’s possible to go into remission, stay off of the scary drugs, stay out of the hospital, and move on with my life. I want to be happy. I want to be healthy. I want to start a family. I want to live life! I can’t do any of that if I sit around feeling sorry for myself and not doing anything. This blog will be my way of chronicling my journey as I try to live my life the best I can. Hopefully it will allow me to connect with people with similar stories, or inspire others, or just give you a good read. I am going to cover health issues (physical and mental), nutrition, and many other things. I hope you will continue to read. I hope you will share this with others. And I hope to hear from you! Please make comments and send me emails!