November CSS Awareness Post
Living Life…Always being curious. In the beginnings by Andy
I was born in 1952. The year after that Drs. Churg and Strauss described the disease at
Mt Sinai Hospital in NY. It was called as Churg-Strauss Syndrome (CSS), renamed EGPA
I was diagnosed in 1985. I live in the Chicago metro area.
My medical team formed around my CSS began with my Allergist/Immunologist and a fantastic person, doctor and diagnostician. I am alive today because he has been my guide my internist since the 1980’s.. When I came to him, I was having trouble breathing, my left arm was losing mobility and left foot felt like I was walking on needles. I believe he suspected almost from the start what was happening. He ordered a series of tests (by way of elimination) and introduced me to a rheumatologist who had done his residency at the Northwestern University’s Feinberg School of Medicine and fellowship in Rheumatology. He had worked with many CSS patients. We went through the process then of focusing in on both Vasculitis and more specifically CSS. I had a few hospital stays as well as various tests through surgery. So I had my sinus repaired and biopsies taken; I had a kidney biopsy, I refused a lung biopsy but had numerous CT, MRIs and X-rays and saw lesions on my lungs. There were no definitive blood tests at the time nor definitions for the stages to help qualify CSS. This also included onto the asthma problems. When they diagnosed my CSS, which was a matter of weeks from when I came in complain, I was put on the only treatment plan for CSS – prednisone. It worked.
The skeptic that I am, one Saturday we reached out to NIH to get a second opinion. It is truly a very small world because the doctor who picked up the phone call was none other than Anthony Fauchi, the Director of the National Institute of Allergy and Infectious Diseases. (He went on to do all the foundational research for NIH on HIV/Aids and further is directly involved in the current EBOLA crisis). He told us to send my records and he would review the diagnosis. NIH confirmed my diagnosis and then NIH lost my records all. It was a lesson learned – I could call a doctor and get an answer through persistence and patience and that I should keep my own records and never give out originals.
Between then and now, I have had a number of flares, a number of near death experiences. In many ways my health has been very closely monitored and controlled in the best ways we can. Since 1985 I have had 12 surgeries. Many of these have been aggravated by the CSS. We have recognized that the weak parts of my body are my eyes, lungs, heart and abdomen and have had surgeries in all these areas. CSS sped up the processes of deterioration in these areas but was not the direct cause. Many of these issues such as the mitral valve repair were hereditary and was a condition all of my family had (brothers, Mom and Dad). I am the only one who had the valve fail. It was repaired by an amazing heart surgeon from Milwaukee.
My medical team over the years has grown and shrunk depending on my state of health or need. Currently I have 10 doctors with varying specialties. They are the best of the best and I am the center of my cyclone – so I am the keeper of information, the communicator and connector for most of them. They often know each other and work together. I have learned to live proactively with my healthcare and often connect the dots to each doctor when we meet. I have tapered to “zero” from prednisone 5 times and am on a taper now. Each time I have been free and clear for at least a year, surgeries more than CSS have pushed me back to the big “P”. My doctors are amazing and I am honored to have been able to put such an incredible team together. Patience and persistence got me there and could work for you too.
Why do I tell you this?
With the help of many others and good social/psych support I have gone through the process of denial, acceptance and transformation. For many years that I denied that I had CSS. I struggled inside to accept it because the outside world I seemed like a healthy adult. Even today my doctors tease me that I am the healthiest sick person they know. My wife reminded me of this denial.
Not many people in my life connect the dots of all the different kinds of care I received. I didn’t talk too much about it. Part of the reason was because of experiences such as applying for life insurance and was rejected because CSS was a form of AIDS. CSS is in fact a syndrome (defined by a combination of symptoms) and is considered both Vasculitis and Auto-immune disease (not HIV/AIDS). But the insurance companies were positive (remember the 80’s) that I had AIDS. Silly them – no life insurance for me.
Amidst all of my experiences, I have had a vibrant career in sales and marketing .When I reached my 50’s and after heart surgery, I decided to change directions and see what else I could do in the world. I moved into the Arts and have been working to help artists find opportunities to grow and thrive since then. This is a work in progress. For me, the Arts – the ability to discover and create constantly – and CSS which has become part of my path of understanding and transformation are similar in my living with eyes wide open and finding connection between people, ideas, learning that facilitate constant change and growth. My family – my wife, daughters and six grandchildren have been my inspiration and support. They have been patient with constant struggles, moodiness and silliness. They are my rock and reason.
You have heard me say that I work hard to make sure that CSS and my health do not define me. I live that belief. So I continue on my road of discovery (a life long journey) and will share these discoveries wherever I can to benefit those who come into my life. This leads me to acknowledge and appreciate Kevin and Amy Ballard Selig In the short time I knew of Kevin and his struggle with CSS and his courage and Amy’s caretaking and informing us (CSS friends) with his struggle, I learned how we as people came together in the best ways we could to support Kevin and Amy. Amy even in her sadness has used that energy and continued with us after Kevin’s passing. She has taught us to celebrate life, to honor Kevin and hold him close to our lives through our combined memories and our different threads of experience together. Through that simple touch and connection, Kevin will live for generations and truly change how we live in this world and the future. In many ways each of us brings that gift to this group as we become present in one another lives.
So in the simplest way I can say it…
Live Life, be present and don’t fear the struggles.
Within each of us are many gifts that we can share through our journeys in all the good and difficult things we face every day.
by karen in wonderland with no comments yet.