My asthma symptoms began long before I started having Churg Strauss related symptoms, but there is a correlation since the number one criteria for diagnosing Churg Strauss is asthma.
I can’t remember exactly how old I was, maybe around 10 or 12, when I realized something wasn’t right. On more than one occasion I was having a hard time breathing. I also don’t really remember the experience, but I do know what an asthma attack feels like now, and I can only imagine how scary it was to my young self. My doctor decided to give me an allergy test and the result was that I was highly allergic to dogs. We put two and two together and realized that I was having asthma attacks after I visited my Aunt, who happened to have a dog! I didn’t always have this allergy though, because when I was born there was already a chihuahua in our house and I remember her being around until I was at least 8 years old (She HATED me! I can only guess that I must have tortured her when I was a toddler…poor thing.) We also had a rescue dog for a short period of time after that, but had to get rid of her because she ate the house! Literally, she ate the shingles off the side of the house when she went outside. I was sad because my Mom brought her to the pound without telling me, and I never got to say goodbye! 😦
From what I understand, allergies can change throughout a person’s lifetime. What I don’t understand is why no one tells you that you can become allergic to more and more things, but you don’t lose the allergies you already have. At least that’s my experience. Throughout the years I have had multiple allergy tests and every time the list of positive allergies gets longer and longer, never shorter! Over the years my asthma continued to get worse, and became a daily occurrence. Allergy tests pointed to trees, grasses, dust, mold, etc. Things that are in the air, all the time, EVERYWHERE! In my introduction of autoimmune diseases post I mentioned that an allergic reaction is the immune system’s overreaction to stuff in the body. Since this stuff that I am allergic to is in the air and I breathe it in all the time, and so does everyone else…why is my immune system getting all worked up about it? That is the big question. There has got to be something going on here.
When it got to the point that my daily “preventative” medication was no longer preventing my attacks, I decided to see a pulmonologist thinking that since he specializes in lungs and breathing, he would be the best person to see. I was so wrong! After years of being prescribed prednisone, I came to a breaking point. Every appointment with him was less than 5 minutes and he never asked questions or ordered tests. He would listen to my lungs, ask me to take deep breaths (which I could not do), then he would give me a month long taper of prednisone. If you do not know what prednisone is or why that is bad, read this http://sideeffectz.com/prednisonesideeffects I really had no clue about this stuff. I had been prescribed much smaller doses from other doctors for two weeks at the most, and I knew that it was not something that should be taken long term. I also knew that it made me feel better within 24 hours and made my asthma attacks disappear. I loved it! For a couple of years I only went to see him two or three times a year when my asthma would get out of control, but about 5 years ago it became more and more frequent and I really started to think something was just not right. During the year leading up to my Churg Strauss diagnosis, I think I was on month long prednisone tapers every 2-3 months…which is not good. At the time I didn’t really know that and I was just happy to be able to breathe. I also didn’t realize that over time the increasing doses of prednisone were causing side effects such as weight gain, nervousness, and more. I had no clue that it could (and most likely had) cause bone loss, or most importantly that it lowered my immune system, leaving me vulnerable to infection. I was under the impression that it only decreased inflammation, thus opening my airways. Well, since I have allergic asthma and the inflammation is a result of the immune system’s overreaction, it only makes sense that suppressing the immune systems helps.
About 6 months before my Churg Strauss diagnosis, I started to develop an odd symptom, which I thought was related to my asthma and allergies. Every time I would sneeze or yawn, I would immediately feel like I couldn’t breathe, I’d get an intense feeling of blood rushing to my head (to the point where all I could hear was the muffled sound of my heart beating), and I would just feel like I was going to pass out! It started mildly, and over the course of a month or so it got so intense that I was scared out of my mind to sneeze, especially if I was driving and alone. I have to admit that even though I was scared, I thought I was crazy and I was afraid to talk to my doctors about it. About the same time my asthma started to act up again and I went to my pulmonologist. I asked him about my weird symptom, and I can’t remember exactly what he said, but I just remember that he made it sound like he had never heard of anything like that and that I was crazy. He didn’t ask questions, didn’t make any suggestions, just (GUESS WHAT?) wrote a prescription for a month of prednisone. I asked why my asthma was so bad and if there was anything else he could do besides the prednisone (because I started to have concerns about the side effects), and he said no. I immediately started crying! I was mad, I was scared, I felt alone, and that this professional who I was paying to keep me healthy just didn’t care and wanted me out of his office ASAP! My reaction was to cry…I wish I had gotten mad, but that’s just not who I am. He proceeds to not show any emotion and tells me that I should see my primary care doctor and that I might be depressed and need to go on some medication. NO!!! What I needed was a caring doctor that gave a shit about his patients and making them healthy! I don’t need another prescription. I am not depressed. I am scared, frustrated, and at that point I was DONE! At least with him.
I found an allergy and asthma doctor that was rated #1 in RI Monthly magazine, and made an appointment with him. Meanwhile, I took that month of prednisone from the pulmonologists and my weird symptoms when away. After my first appointment with this new doctor, I was thoroughly impressed. He had a laptop and was typing away the entire time we talked, taking notes about everything. YES, we actually had a conversation. He asked me all kinds of questions and answered my questions, and discussed my health and he gave me his opinions, etc. I thought, this is what a doctor’s appointment is supposed to be like!
The timing of things throughout 2009 are kind of a blur to me, but I think I met with this new doctor at least a couple of times before my Churg Strauss diagnosis. It was actually thanks to him that I was diagnosed, so I know that he saved my life! Unlike most people, I was lucky to have a doctor that realized my strange, and seemingly unrelated, symptoms needed a little more investigating. I 100% believe that if I was still seeing that pulmonologist, that I would have been sick for years and possibly suffered life threatening and long term damage to my body. I truly know how lucky I am, and I know it was the right move for me to switch doctors. I just happened to find the right one, and I really believe that something led me to him. So, I encourage everyone out there to seek out doctors that you are only 100% comfortable with, and that you know are putting your care (not a paycheck) first. If you even think for a second that they are overlooking things, rushing you during appointments, or even if you just have a bad feeling about them, find a new doctor!
Shortly after I started going to this new doctor, I also started having other symptoms that led up to my diagnosis. I will cover those in the next couple of posts. Once I have my introduction to Churg Strauss and my related experiences covered, stay tuned for my health and wellness information…the real reason I started this blog. I just wanted to give some background information first so you know where I stand and in case you or anyone else you know can relate.