Not Fair

I originally started writing this post at 2 AM this morning, just after having a complete meltdown in front of my beloved night nurse (Melissa Rasnake, I love you forever, and pray you never leave). Let's back this story up, and start from the top.

I am returning to my home away from home, PA Vent Camp, this Friday, for a fun-filled weekend with my second family. I zip line, make things (because crafting is its own kind of therapy), hang out with some of the best friends I'll ever have in this life in the coolest tree house ever made, get into a little mischief, and, for two days, just be me. Two days of not worrying about nursing schedules, if everyone is on the same page regarding meds, and if my round-the-clock care team is running like a well-oiled machine. Whoever said patients have it easy was obviously never a patient. People ask, "What do you do for a living?" I work on staying healthy, and it is a full-time job. Do I micromanage sometimes? Sure, but only because my life matters to me. So yeah, it's only two days, but those two days are pretty sweet.

In order to attend camp, in addition to filling out an exhaustive application (Side note: great idea! Next year, why don't we just send in samples of blood? I'm just saying, something to think about...), we have to see our doctor and have them fill out a form that basically clears us health-wise for camp. I arranged to see my doctor yesterday to get my form filled out, so I am officially CAMP BOUND!!! All sunshine and rainbows, until my doctor asks me if I want a DNR. For all you normal people, a DNR is a DO NOT RESUSCITATE medical order, and if you have one and code, doctors will not implement life-saving measures to bring you back from the brink (or entrance) of death. This is a very personal decision, and one that a 34-year-old woman should not have to make, but it was on the form, and so it had to be discussed. My doctor tried to help me see all aspects of the decision, and my mother rightly expressed her concern about my getting chest compressions because my bones are so brittle. I expressed that I do not want a DNR, and that was the end of it. We went home, I settled in, but I couldn't stop thinking about that conversation. I finally started conducting research - because that's what I do - and slowly began to fall deeper down the rabbit hole. I don't want a DNR, but do I really want to go through chest compressions? My heart is healthy, but my lungs are so weak. If I have broken ribs. Could my respiratory system fail? Or will I be in such agony that I'm ready to go? I researched modified resuscitation directives (yes, they are a documentation of which emergency resuscitation measures you want to have and which ones you don't want), but what if basic chest compressions could be the difference between death and ten or more years of life?

I do not quit. I was born a fighter, and I'll die one. One thing that no one will ever be able to say about me is, "She gave up." I am not perfect, and I fail God daily, but I love my life and, more than anyone, cherish the precious gift that life is. Life is hard, but God is so good, and life is beautiful. I will fight for this gift until God calls me Home to be with Him. I have died and come back on more than one occasion, and none of those times required chest compressions, thank God. When I am meant to leave this world and enter into eternity, no amount of CPR or emergency interventions will stop what God is going to do, but that also doesn't mean I'm just going to lie down and die when my life takes an instant turn in the wrong direction.

I'm 34 years old, and thanks to God leading me to the healing powers of herbal medicine, I am the healthiest I've been in years. I'm much more active in my community, and I feel great. I shouldn't have to think about things like DNRs and how I want to go when I go. It's not fair. But, then again, most things in this world aren't. My earthly struggles only make Heaven sweeter. It's a rainy Wednesday here in Cecil County, MD. Most people don't like the rain, but without rain, we'd never have flowers (or HERBS! 😉). Take the good with the bad and trust God to carry us the rest of the way.

Until next time.

🤍