My husband thought I should write about why I named my blog “Sarcoidosissoldier”. He thought it was both an interesting name because I do rise and fight every day but also a misleading name. When I asked him why he thought it was misleading he said, “because you don’t take orders from your disease.”
I’ve been thinking a lot about that. And, while I understand my husband’s point, which is that I try not to let my disease rule my life, there are in fact hours and sometimes days in which I do take orders from my sarcoidosis. Sometimes my body demands rest because of fatigue or pain or both and I can’t do a thing about it.
Other times my husband is exactly right. I stare down my disease without blinking and I win. I overcome whatever it is that tries to bring me down – pain, shortness of breath, fatigue, weakness. And, I use every weapon in my arsenal including inhalers, pain medication and naps to name a few.
So, I think I named my blog “Sarcoidosissoldier” because every day is a new battle. Sometimes it is just a skirmish that is easily overcome using the right fire power and just a little bit of patience.
Other times it is a sneak attack as I’ll wake up feeling fine but as morning turns to noon, I begin to fade. These are the battles that are hard to win, the ones I don’t see coming but if I can get myself to a better strategic position then there is always hope.
Then there are the all out battles royal. These are days of undeniable yet hard to describe aches, pains, fatigue and discomfort. This is when every weapon I have including sometimes calling the doctor are in order. I must rise and try to fight no matter how I feel. I will not surrender. I won’t wave the white flag. I push and push and push my way through the slog, the muck and the mire of this disease on these days.
Eventually, I do get to the other side and when I do and after the fight is over, I breath, quite literally, just a little easier. I have survived again. I continue to press on!
When you live with a chronic and unpredictable health condition, you do become a soldier, fighting for your life, trying to maintain some kind of normalcy. It is a constant struggle just to stay ahead of your disease and its a crusade to wear you down.
The fighting and battles are well worth the effort because life is too precious to give in and I am not willing to let go of whatever normal I am still able to maintain.
So, yes I am a soldier. It serves me well to be a warrior.
I am a solider and my enemy is my disease.