I'm Not Drunk, It's Churg Strauss Syndrome

By Tricia O'Hare
March 2009

Like most of us, my pre CSS life seems idyllic. I was 56 years old, in a long term love relationship, had many friends and a busy social life. I worked out at the gym, did yoga and walked my dogs daily. I loved my body and my life and never gave a thought to my health which, with the exception of adult onset asthma was excellent. In early April 2007 my asthma became more severe than ever before. Later in April 2007 I had horribly painful ear aches, first in the left ear then the right, then the left again, at which point I went to an ear dr. Diagnosed with an ear infection, he gave me antibiotics. As that pain was going away, I developed a sinus infection, got laryngitis and lost my sense of smell. Since my ear infections hadn't totally healed, I now couldn't hear, talk or smell. I kind of thought it was funny, and assumed it would go away. I thought my severe stomach pains and blood in my stool were the result of so many antibiotics. But when my ankles and feet became so painful I thought I had somehow broken or sprained both, I began to think I must be a hypochondriac. I went to a podiatrist who x rayed my feet and ankles and found nothing wrong. My energy was basically gone and I could no longer go to the gym or walk with my dogs. I had lost about 25 pounds in a few months. I kept thinking this must all be in my head and I kept trying to live my life but my whole body had become so achy I couldn't sleep or continue daily activities. I took several baths daily to ease the severe achiness. On July 7, 2007 as I sat in the tub, I became aware I could not move my right arm. Thinking I was having a stroke, I called my son for help.

The rest is a bit of a fog; he called paramedics, and I was taken to emergency by ambulance. I was in the hospital for a week as they tried to find out what was wrong. Miraculously the doctors diagnosed Churg Strauss. My vasculitis had badly damaged my feet and hands, I had wrist drop in my right hand I was sent home with lots of meds and numbers for doctors, but no game plan. My poor son became my caretaker. When he realized I couldn't walk, use my hands or eat, that I was just sleeping, waiting and hoping to die, he did all the paperwork and footwork to get me into a rehab hospital. I was in the rehab for a month, where I was forced to eat and to relearn to walk. After that time, there was no more they could do and I was sent home, still unable to walk. I was blessed to have this wonderful son and many loving friends who brought me food and their company.

I spent 8 months between my bed and a wheelchair, dependent on others. My doctor doubted I'd ever walk or have full use of my hands again. My depression was so great I thought of suicide almost daily. My steroids were so high, my face and body were bloated beyond recognition, and the Cytoxan made my hair fall out. I'd been a model and very vain about my looks. Now they were gone along with my independence. People offered to take me out, but I felt too humiliated to let anyone see me. So I self imposed my isolation even more. My lifeline became the CSS board. So many sufferers had more internal damage, yet they were able to walk. They were getting out, living their lives, and I felt even more alone, I couldn't relate to their stories. Linda Browns son Kevin had the only story similar to mine. She kept my spirits up by assuring me that one day I would walk again as Kevin did. Thank God for her!

Gradually I practiced walking with a walker, then a cane. I began letting friends take (what I saw as) my hideous body out for small outings. I had to relearn to drive. Once I accomplished that, I felt my Independence begin to return, all so slowly. My rheumy let me stop the cytoxan and slowly lower the prednisone.

Churg Strauss will always be a part of my life, I have some heart damage, deal with the ups and downs of prednisone and MTX and I'm monitored closely. I found the most help on this site and often was able to help my rheumatologist find answers with the information given by css sufferers. My life will never be as it was, but I'm so grateful for the recovery I've made. 

I'm seeing many gifts this illness has offered. I've learned the importance of accepting help when its offered. I've learned to offer help, since none of us have any idea what personal challenges anyone else is going through. I've learned compassion, what a gift! The greatest gift is the close bond my son and I have formed. When he had to take on the parent role and care for me, a dysfunctional past was forgiven and a true love and caring was born. I've always been hyper and impatient. Now if I move too quickly, I fall down. So I'm learning to slow down, and with that has come appreciation for a lot of small things I used to miss as I zoomed past.

Today my hair is growing back, I have almost lost all the bloat and can wear many of my old clothes. I still have neuropathy but my hands usually work, and I can walk, well I hobble, slowly and probably walk like I'm drunk most of the time, but at least I'm walking! Churg Strauss is a part of my life, but no longer is it my identity.

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