It's been a while... I'm a pretty good talker once the heat of the fire dies down some but when the flames are roaring it's a different story for me. I'm on of those "head down, one foot in front of the other" kind of people, till it's safe to look up again. I don't speak much of my own health outside of me being Cyclic. I don't want to get hung up there or for it to ever be about that. The reason I write and the reason I talk is for her song to be heard and to use that voice to fight for Mileigh and other neutropenic children everywhere. It's an outlet for me to refer back to when a fight is required.
That's all fine and good but this post will include some of my personal struggles that have occurred recently. In 2012 I was admitted for neutropenic episodes several times with an average inpatient time of one week. That's enough of looking at four walls to make anyone nuts! I despise being admitted into the hospital. It's been nearly one year since my last admission...PRAISE THE LORD! However, a couple of weeks ago I was one fever degree away from the confining lines of intravenous antibiotics and increased G-CSF. I haven't felt "right", for lack of a better word, in a while. Life and it's daily demands have always been a struggle at times. It's always required a certain degree of pushing through. Typically I feel better once I've completed whatever it was that required that push, be it a spin class, a softball game, or even the laundry on some days. Lately however, the push is nearly impossible and I do not feel better after. Tasks are left incomplete and I'm left exhausted. I don't even like typing this to be honest right now. It sparks a feeling of defeat in me like no other.
I was able to avoid the admission a couple of weeks ago with monitored counts and daily IV infusions for several days. I stayed in constant contact with my physician and he was truly a Godsend. I appreciate his respect for Neutropenia. I also appreciate his respect for me as an educated patient who knows my body. His first response was admit and air on the side of caution. I, again, despise these admissions and my temp was hovering in the "low grade" category. We talked and came up with a treatment plan that worked for both of us...I could stay home as long as I agreed to daily IV medication, rest, and constant contact with him. It worked great and I was able to allow my body to respond at home and the fever never spiked. AMEN, AMEN, AMEN! While I'm here...I do not in any way refuse admission when it's absolutely necessary. It's a fine line we, as neutropenics, walk in regard to admission. Hospitals are germy places and precautions are serious so, for us, when it's possible to treat at home we do.
Anyhow...I write this post to just put me out there a little more. Neutropenia, regardless of source, is painful and exhausting. The struggle to live a somewhat normal life often gets put aside because it isn't the point. The point is to make it and to truly live. The struggle never goes away. I choose not to focus on the struggle most of the time because it's just part of life...we all have one and I don't owe the struggle the majority of my time.
This post finds itself nearly a month after my last one. In that time I may have struggled with my health but I've also been blessed to be in contact with people who have truly encouraged me. Encouraged me in my writing, my fight, my parenting, etc... I appreciate you. I'm not sure where this road is leading and I'm uncertain of what's next for Joeli's Song but I am absolutely certain that no matter the struggle, her song will be forever heard. Thank you for blessing me! Be Blessed!
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