May CSS awareness personal story by T.R.
The Month of May is International Vasculitis Awareness Month. For this reason there will be at least one post per week about Churg Strauss Syndrome (CSS) and Vasculitis Awareness. Please read and share T.R’s story about her diagnosis process and her struggle to find a treatment plan that allows her to return to a ‘semi-normal’ life. and controls her CSS symptoms. T.R – is a ‘pen name’ used at this time.
In November 2007, I started having worsening asthma, and was diagnosed with a sinus infection. Between November 2007 and December 2008, I went through 14 rounds of antibiotics, and kept being told by my GP and an ENT that I had chronic sinusitis. I was coughing up green junk every day and my sinuses were still inflamed. I was having asthma attacks every week, chest pain, and I was starting to see stars and have vertigo if I sneezed. My breathing was labored despite an active lifestyle. Getting out of bed was a chore.
I had begun to despair I would never breathe normally again. I began to see increasingly more distinguished and expensive doctors. My pain grew unbearable and the little bag of tissues I constantly carried around with me became a monthly bill.
I was then sent to an immunologist who started to put all of the pieces of the puzzle together. Finally, I was given a diagnosis – Churg Strauss Syndrome. It was serious – a very rare disease with no cure. Churg-Strauss Syndrome is a systemic vasculitis that causes damage to the lungs, nose, sinuses, skin, joints, nerves, intestinal tract, heart, and kidneys.
In the beginning I felt a deep anger towards God. How could he let this happen to me? Eventually that anger turned to fear. I remember after my diagnosis cowering on the floorboard of my car in a random neighborhood, feeling so lost and small.
I was sent to a local specialist who began me on a daily regimen of the beast, Prednisone, a bitter foe and dear friend. My medicine cabinet which previously consisted of Eucalyptus oil and band-aids was taken over by oral chemotherapy medicine and an army of drugs to help me manage the effects of the medicine regimen. I lost touch with my own body. Its cues were now too complex for me to treat at home. I couldn’t tell if a sore throat was a little tickle or the beginning stages of pneumonia. My job became to rest. Turn over all of my responsibilities and focus on the difficult work of reaching remission.
I had joked every day for years that I wished I could slow down and nap, but I always knew
it wasn’t true. I thrived on usefulness. Running circles around others mentally and physically felt like a calling. I soared at it. I volunteered 40+ hours a week, mothered my children, and still found time for hobbies. My self-worth had wrapped itself like a pernicious vine around the god of productivity. It was all stripped away. I had to find and accept a new normal. Me plus disease.
Some people with CSS respond well to treatment, but that hasn’t been the case for my body. I’ve tried pretty much every treatment available and seen no improvement in all these years. I am eagerly looking forward to new medical discoveries that may shed more light on Churg-Strauss syndrome and new treatment options that may become available. I have found so much encouragement and support in the CSS community and strongly encourage others with CSS to seek out a support community for themselves and their caretakers (links to other social network groups for CSS and Vasculitis).
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