January CSS Awareness Post
My name is Karen and I have Churg-Strauss Syndrome (CSS) or Eosinophilic Granulomatosis.
It is a rare autoimmune condition that unfortunately has no cure. Every month those of us with CSS try to raise awareness for the disease in honor of our dear friend Kevin, who passed in 2014 and others who have fought and lost the battle with this horrific disease.
This is my story. I have battled illness my entire life. I was always sick. Every year since I was three I have had pneumonia at least 4 or 5 times a year along with numerous bouts of bronchitis and tons of sinus infections. Doctors just chalked that up to someone having a weak immune system.
Fast forward to 2006 when this first picture was taken. I was in the prime of my life. I was earning an Associate’s Degree at the time I was thinking about studying Biology. I was climbing down into underground caves (such as the one in the photo) to collect water samples and everything seemed fantastic! Then WHAM! The fatigue hit like I ran into a brick wall. Suddenly, I couldn’t stay awake. I was falling asleep during class and even during finals. Doctors chalked it up to me “doing too much” or “being involved in too much.” They sent me for a sleep study just in case. They found nothing. So, my husband and I just let it go and moved on with our lives.
Fast forward to 2008 when the picture was taken.
I was in the Anthropology/Archaeology Program (I found my academic true love!) at a large university and completed field school at Cahokia Mounds in Illinois. I was on my way to studying history the way I wanted, through Archaeology. I was excited but not feeling great. I graduated at the end of the year and started applying to graduate schools. It was too much. Instead, I got my teaching certification and began teaching elementary kids science, math, and reading. I was bought in as a science guru and helped out in other areas. It was part-time but even that seemed to be too much.
I was diagnosed with asthma my first year. My second year in I started vomiting. Not just a little bit but a lot. Enough that everyone was noticing. My students, the other teachers, and even the principal all started making comments. They moved me to a vestibule (because I really had no area) with a restroom.
Then, I started falling asleep at the wheel of my car. I would be driving home and would have to pull over to parking lots because the fatigue would be so overwhelming. A couple of times I woke up with my car on the side of the road.
I started losing my balance, my memory, and my muscles in my legs were hurting so bad. Then my hands, arms, and back starting hurting too. I went in for test after test. Hospital stay after hospital stay until finally, my first rheumatologist, my pulmonologist, and my ear nose and throat doctor after tons of testing and loads of discussions came to the conclusion that it was in fact CSS.
This year ended with another trip to the hospital and me with several blood clots. Many people in our CSS support group spent time in the hospital the past year, too. We take many medications so we can live our lives. Some of us can work, some of us cannot.
Every one of us fights this disease with everything we got. Some days it’s all we can do to get out of bed. CSS doesn’t just change our lives it changes our families lives. There is no cure for the disease but we don’t let it rule our lives.
I am currently in graduate school getting a masters degree and will eventually get my PhD and many others with the disease are doing wonderful and beautiful things. This disease may torture our bodies but it cannot steal our spirit.
Please help us spread awareness so we can all get the help we need and help us honor Kevin’s memory by reading my story and other stories about CSS every month and sharing them.
For more information about CSS please visit: CSS Association Web Pages
For more general CSS information and links to other useful CSS information return to Main CSS Info Page
by karen in wonderland with no comments yet.