My name is Jodi Danielson, I’m 55 years old & I am diagnosed with idiopathic neutropenia for 28 years now. Let me just say it’s been a roller coaster of a journey, probably more downs then ups. Never felt supported by or taken seriously by my physicians. The main reason for my concern originally was the chronic fatigue which continues to be a huge factor in my life. I was told to “take care of myself,” or “you’ve lived this long like this, it’s probably your normal.” I felt defeated, like life was passing me by & I know I wasn’t living life to it’s fullest . My counts continued to be severely low, I’m considered chronic or severely neutropenic. Besides the chronic fatigue, there is mouth sores, bruising easily, feeling sickly or worn down & gum disease!
My Oncologist/hematologists first told me about neupogen but didn’t recommend it for the longest, her fear was it converted to cancer. Although I respected her thoughts, I felt it wasn’t even given the opportunity to trial it? It wasn’t until a periodontist, of all people told me she wrote a thesis paper on neutropenia & gum disease she convinced my specialist to immediately get my ANC elevated. I truly feel this saved me from a life of misery & suffering. My protocol now is when my ANC are below 1000 I take an injection. It seems to work for me because now I can at least feel somewhat stronger which I’ll take any day of time because it beats living life in poor quality. As much I don’t like the side effects & how this condition can affect all aspects of your life, I know I can’t survive without it. I must admit, I’m fairly predictable, it’s almost always guaranteed I will need it every two weeks! When my counts are elevated I feel so much better, it’s night & day. So I encourage anyone to enjoy the small but good days.
Being proactive with your doctor is crucial, demand being heard or believed. As far as family, it’s hard for anyone to grasp how your feeling & all they can do is support you during the ups & downs, support is necessary. I work part time, I stay as active as my mind/body allows it. I check my counts every 2 weeks & when it’s time for an injection, I pre-medicate for days prior to lessen the side effects.
Never give up on yourself, be easy on yourself & find solace in your life.
We sound like a very unique condition, take it seriously & listen to your body. It’s not easy being sickly all the time so staying strong mentally is key.