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!
Tuesday, June 25, 2013
Wednesday, June 12, 2013
Violation by Genetics
Long time no see!! Things are definitely crazy in our family this summer. From softball to home improvement projects. We are currently guests in Chad's parents' home while work is being done in our home. Hence, my time to write =).
About "violation"... I'm aware that's a pretty broad topic but for this post, the word "violation", will be in regard to our own bodies. I find myself feeling violated by gas prices, cost of living, medical professionals, etc. Recently I've even felt violated by my own genetic make up, both as a neutropenic and as a parent of a neutropenic. Don't get me wrong, Mileigh and I are doing well. GCSF is working and we live a "normal" life, for lack of a better word. That said, the violation is still felt from within.
Our busy schedules and active lifestyle often comes with a heavy price. At the end of the day my body is revolting. During our nadir that revolt is extreme. The sun sets and girls are bathed and tucked in and I finally find my tub. When the softball games are called and the dirt is washed off and all is quiet, this body screams. The soreness and tiredness is more than a "good hurt" after a workout. It's a hurt that just can't go any more. So, I fall into bed long after my sweet husband has slipped into his dreams and my girls have said their prayers. I find a place of stillness and pray myself to sleep.
Mileigh is often that child whose second wind comes with a vengeance. I've grown to love that about her. It's a familiar place that I have just recently put my finger on. We've called her "Sassafras" since she was small and I've always said she'd need that sassiness one day. There are many nights that Mileigh crashes. She goes until there is nothing left and she passes out. You'd think that would be a peaceful and restful place but it's short lived. She reminds me of an infant who has been over stimulated and become over tired. The sleep is interrupted. She cries out for me and I know all too well why. She is too tired to fully rest, she is too tired to sleep soundly, and she is too tired to escape the aches of fatigue. This, my friend, is Cyclic Neutropenia at it's finest. This, is violation by genetics.
Our natural instinct is to remove ourselves by any method possible in the event of being violated. How do you remove yourself from your own body? It's not possible. It's a constant internal struggle and the end result is complete exhaustion. I can't prevent these invasions. I can't take away the feelings of being violated. I couldn't for Joeli, I can't for Mileigh, and I can't for myself. I can however deal with these invasions by structuring our lives, resting when we need rest, and being sensitive to what our bodies say we need.
I fully believe that one day there will be a final defeat for Neutropenia in all it's genetic forms. It's important to share what we know, who we know, and what we live for this purpose. Be heard. Take action when your genetics begin their violation. Listen to your bodies.
Thank you for supporting my family and I. Thank you for sharing Joeli's Song! Thank you for making her be heard.
About "violation"... I'm aware that's a pretty broad topic but for this post, the word "violation", will be in regard to our own bodies. I find myself feeling violated by gas prices, cost of living, medical professionals, etc. Recently I've even felt violated by my own genetic make up, both as a neutropenic and as a parent of a neutropenic. Don't get me wrong, Mileigh and I are doing well. GCSF is working and we live a "normal" life, for lack of a better word. That said, the violation is still felt from within.
Our busy schedules and active lifestyle often comes with a heavy price. At the end of the day my body is revolting. During our nadir that revolt is extreme. The sun sets and girls are bathed and tucked in and I finally find my tub. When the softball games are called and the dirt is washed off and all is quiet, this body screams. The soreness and tiredness is more than a "good hurt" after a workout. It's a hurt that just can't go any more. So, I fall into bed long after my sweet husband has slipped into his dreams and my girls have said their prayers. I find a place of stillness and pray myself to sleep.
Mileigh is often that child whose second wind comes with a vengeance. I've grown to love that about her. It's a familiar place that I have just recently put my finger on. We've called her "Sassafras" since she was small and I've always said she'd need that sassiness one day. There are many nights that Mileigh crashes. She goes until there is nothing left and she passes out. You'd think that would be a peaceful and restful place but it's short lived. She reminds me of an infant who has been over stimulated and become over tired. The sleep is interrupted. She cries out for me and I know all too well why. She is too tired to fully rest, she is too tired to sleep soundly, and she is too tired to escape the aches of fatigue. This, my friend, is Cyclic Neutropenia at it's finest. This, is violation by genetics.
Our natural instinct is to remove ourselves by any method possible in the event of being violated. How do you remove yourself from your own body? It's not possible. It's a constant internal struggle and the end result is complete exhaustion. I can't prevent these invasions. I can't take away the feelings of being violated. I couldn't for Joeli, I can't for Mileigh, and I can't for myself. I can however deal with these invasions by structuring our lives, resting when we need rest, and being sensitive to what our bodies say we need.
I fully believe that one day there will be a final defeat for Neutropenia in all it's genetic forms. It's important to share what we know, who we know, and what we live for this purpose. Be heard. Take action when your genetics begin their violation. Listen to your bodies.
Thank you for supporting my family and I. Thank you for sharing Joeli's Song! Thank you for making her be heard.
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