“Hello! I’m Denise. My major diagnoses include CVID, Hypersomnia, Asthma, Inappropriate Sinus Tachycardia, cardiac valve issues and numerous orthopedic concerns. As a writer I’ve contributed to magazines such as Shameless (Canada) and the Saturday Evening Post, as well as 18 titles in the Chicken Soup for the Soul series, among others. I’ve danced since I was small and still try to do so on my good days.
Some of my conditions, like Asthma, were diagnosed quickly. Others, not so much. I had frequent infections from very early childhood. I still wasn’t diagnosed with Primary Immune Deficiency until I was in my 30’s and had been pushed beyond my ability to compensate with being sick all the time.
It’s sometimes assumed that illness is linear: the doctor gives you a pill and hurrah, you’re all better. The truth is, if there’s no cure, the goal becomes stability. For me that takes considerable effort: going for treatments, taking meds, committing to ongoing physical and speech therapy and showing up for checkpoint testing. It’s often one step forward, two steps back.I’m often frustrated that I can’t do all that I would like, and I miss what I was able to accomplish in the past. I still cherish the good days and try to roll with everything that happens. Sometimes I’m successful; sometimes I have a good cry.
I’ve also been angry that I wasn’t diagnosed with CVID far sooner – if I had been, I might have avoided some complications. I’ve tried to channel that sentiment into Primary Immunodeficiency advocacy and awareness as much as I can. This isn’t the road I thought I’d end up on, but I’m doing my best to make the journey worthwhile. https://denisenox.wordpress.com/”
