My name is Brian and my wife Alicia was diagnosed with CSS in September, 2007. We have two wonderful children, a daughter who is five and a son who is three.
My wife started having symptoms of illness in December, 2006. It began with acute sinusitis, which lingered through the winter, the onset of asthma by springtime, and the development of ulcerative colitis in between. It was a frustrating time during those months, as we both struggled to understand what was happening to her once healthy body. Even more frustrating was the circle of medical information (and sometimes misinformation) we were receiving and the continued deterioration of her health. Although each doctor she saw was an expert in their field, their seemed to be a lack of the person who could tie it all together. We thought, what were the odds of a healthy person contracting three separate illnesses within a relatively short time frame, and not having any of the illnesses related? It seemed to be impossible, yet here we were, staring at three separate diagnoses. Yet, she had the determination and fortitude to not accept those answers, and she would probe the latest doctor in our lives, one I would call, Dr. Internet.
She would search through many websites, and call me over to bounce ideas off of. Many times I would answer, “I don’t think so, “or, “No way.” In fact, one time, I decided to let her rest, and I’d take the kids out with me. During her rest, she thought she’d watch the television, and a show called, “Mystery Diagnosis.” During this particular episode, the woman went untreated for a year, but was finally diagnosed with Wegener’s Granulomatosis. When I got home later that night, she told me what she watched, and recollected the similarities this woman had with her case. I thought, “Wow, I can’t believe how similar their cases are. But, it still seems unlikely.” As her health deteriorated, she continued to ask and search feverishly when she came across something called, Churg Strauss Syndrome. It seemed impossible, we were seeing some of the best doctors in the area, and none of them wanted to diagnose her with this. She decided to make an appointment herself with Dr. Gary Hoffman at the Cleveland Clinic for three months out.
It was obvious how her health would improve and then decline as her medication levels went up and down. She asked me if she thought she had it. After reading about it, and watching her, I said, “I think you might. How soon is your appointment again?” It was a tough few months; the doctors prescribed her with steroids, and would try to taper her off despite ongoing symptoms. Some insisted that she should also see a counselor. But as the tapering went on, she would feel worse and worse and her symptoms would reappear. Until we really got to the bottom of this, we had to stick together as a family. I would try to give her as much rest as our kids would allow. One thing I learned is that no matter how you or your spouse feels, kids don’t slow down. They are always going at 100 mph.
In September, 2007, she traveled to the Cleveland Clinic, and met with Dr. Hoffman. She had come prepared, with all of her notes, test results, and information in a binder. Within a matter of a few hours, Dr. Hoffman informed her that, in his opinion, she was suffering from CSS. When she called to tell me, I had both a sense of sadness and relief. Sadness that my wife was ill, but relief in the fact that at least we know what it is we are up against. You can’t solve a problem until you know what the problem is you are trying to solve.
Since the diagnosis, my wife has been under Dr. Hoffman’s care, and her overall health is improving. Initially, I didn’t know how we were going to cope. But what I have found is that my role has continued to be the same, just trying to fill in and help her in any way I can. There are challenges each day; it is not easy, but I know we’ll make it through this. Although this experience has been life changing for us all, and some days are better than others, it has challenged me to be the best husband and father I can be.