Back in 1989 I was quite the healthy woman. I had developed some allergies but other than that I was fine. I did aerobics several times a week, went out dancing all night on a regular basis, had many boyfriends and was having a blast. I had been sober for around 7 years and was having more fun not drinking than I would ever have imagined.
I met my future husband in April of 1990 and we were married six months later and I wasn’t even pregnant!
I bought a treadmill in 1991. I used it for a few weeks but noticed that by the end of my workout I would start coughing like crazy and couldn’t catch my breath. I finally went to the doctor and was diagnosed with exercise induced asthma. That was the start of my journey that I never wanted to take. The asthma quickly progressed to the acute stage. I was put on inhalers, prednisone and various other meds to control it.
Fast forward to after we adopted my our sweet little boy, Benjamin. I had struggled with blocked sinuses for a few years but it quickly took over my life. I could not breath from my nose ever. It was difficult to eat because of this, difficult to talk on the phone because I was so nasally all if the time. I was put on nose sprays, increased prednisone, pain meds because of the sinus pain etc. It was at this point that I discovered that I was also allergic to aspirin and ibuprofen. An ambulance ride to the hospital after taking aspirin convinced my doctors of that.
I was a mess. My GP and ENT could not understand why my symptoms were getting worse. My marriage was starting to suffer and I felt like I was a terrible mom because I was so sick all of the time that I could not function. I was at my wits end trying to convince my doctors just how awful I felt.
In 1999I had a bit of a reprieve. My asthma seemed to be under control and I was learning to live as a “mouth breather”. We had the opportunity to adopt a beautiful little baby girl so we jumped on it.
Soon after we brought her home, the migraines started. I became incapacitated a couple days out of each month. It was horrible.
Finally my ENT decided that I should get sinus surgery to see if it would help. He found many polyps and removed them. I felt much better afterwards for about a year, even though the asthma was back full force.
Around 2003, I started experiencing extreme pains in my shoulders and legs. My arms started tingling and my fingers and toes started going numb on me. My GP was fed up with me at this point. He suggested that I see a psychiatrist because I was so depressed. Who the heck wouldn’t be depressed with all this going on? My body was falling apart while I was trying to raise two kids and keep my husband happy? I finally decided to go to a rheumatologist. After doing a work up she suggested that either I had Wegener’s or Churg Strauss Syndrome. She was leaning towards the later. I was scarred to death. Reading about CSS online made me believe that I only had a few years to live. She put me on methotrexate and increased prednisone to try to get it under control. It did for awhile.
Since that time I was positively diagnosed with CSS. I have been on every immunosuppressant and bio drug that they have. Everything would work for a short time and then I’d go down hill again.
My husband filed for divorce earlier this year mainly because of what this disease has done to me. He was never willing to accept that I truly had a chronic illness. He was always waiting for me to get better and sadly I don’t think that will ever happen.
The good news is is that my sister took over monitoring my healthcare. I moved in with her and gave her power of attorney over all of my medical. She found a wonderful doctor in Boston who knows so much about CSS. He put me on Cytoxan last August. I was on 40 mg if prednisone at the time and had been on that much and more for about a year prior to that.
I am so happy to say that it is helping so much. I am now down to 13.5 mg of prednisone and slowly tapering. My energy levels have increased dramatically and I have not had an asthma attack for about six months. I am not cured but for the first time in many years, I have some hope. My life is not what I planned (who’s ever is?), but I am alive and starting to kick again! I am aware that it could all go south with another flare but I have learned to take what I can get and try to enjoy each day that I can get out of bed. I even rode a horse last week, one of my passions that was taken from me because of CSS.
My last thought is that the blessing in all of this is that it has brought me closer to God than I would ever have been if I had had a healthy life. I continue to grow in my faith. The other blessing is that I have met so many wonderful people that are struggling just like me. People with CSS are all over the world and I am so grateful to all of them for their strength, support and humor through it all.
I would not wish this disease on anyone. I am grateful that at least I live in a time where there are treatments that can extend our lives much longer than expected than even 30 years ago. Awareness is the key. Doctors need to learn so much more about our disease and other rare autoimmune syndromes than they know now. It could save so many who are going through the beginning stages. God bless.