For years I've been tossed around as a neutropenic patient. I have found physicians here and there who tolerated the rareness of Cyclic Neutropenia and all that the condition entailed. I have been in situations with physicians where I thought they were truly interested in my condition only to be let down years later when that interest was desperately needed for appropriate treatment. As long as my health was maintained and severe infections were kept at bay all was well.
Over the last couple of years I've run into several severe infections that required hospital admissions, picc lines, empirical intravenous antibiotics, and pain medication. For the most part things were handled well but I felt like that child who just couldn't be satisfied. I needed communication on my condition and due to the treatment and the doses I also required major pain control. As a result of these needs, I was left feeling like I was causing a problem and becoming a patient who required too much. That's a terrible feeling when you rely on these health care professionals to continue a healthy lifestyle. I'd love to be a "normal", healthy person who didn't require additional medical attention. The fact is, I'm not "normal"...not by today's medical professionals and I DO require more medical attention and interest than most.
After years of advocating, talking nurses through my assessments, schooling hematologists on my condition, and teaching neutropenic precautions in the midst of febrile neutropenic episodes, I was done. DONE. I didn't just NEED a physician who cared enough to learn about what I had, I DESERVED one! We all do. I have no problem having an educated conversation with a health care professional and explaining what I know and have learned about my own body and condition. Matter of fact, I welcome it. I welcome anyone who will listen. I do not, however, have time for those who work in the health care profession and think they know it all and that I'm just a cocky patient/mom who thinks I know it all. Every now and then if we all take the time to listen to someone else, we might just learn something. Maybe that we don't know all there is to know after all and that it doesn't take a medical degree for someone to understand their own condition that they live with on a daily basis.
I have fought to be heard my whole life. Many of those fights were won easily and others not so much. For those of you who know me personally, you know I don't mind making myself heard when it truly matters. I have found that unfortunately some do not care how passionate you are about your or your child's care. In those instances, I've learned to recognize them for what they are and move on. Some folks will never hear. They're too busy focusing on the next words coming out of their own mouths that they'll never process what's just come out of mine.
All of this to say KEEP FIGHTING!!!! It's worth it! After 30 years of fighting to be heard I finally have a physician who is truly interested in Cyclic Neutropenia and so much more...ME! He's concerned with how I feel and understanding where my counts are at and bone pain and everything else that goes along with the different forms of Neutropenia. I've only seen him twice so far so we haven't addressed a Neutropenic admission together yet or an infection but to prepare for that he chose to give me his personal number so that if I'm not taken seriously in an emergency room once again, I'll have back up. It was a small gesture on his part...one he probably hasn't even thought about again. It was HUGE for me. In thirty years as a patient and as a mother of a patient this is a first for me. Proves to me that this long and tiring fight has been worth it.
I could easily get lost in the "what ifs"...I refuse! What matters is that I'm still fighting and living and making a difference.
Fighting for the care you deserve is a FIGHT WORTH FIGHTING! Don't give up!
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