This is the hilarity of a condition with no real treatment and no cure: the concept of symptom management. Of formulating your whole life to fit the beck and call of the random times where the body is won't to just flipping you the bird in its own course of wiping your name and your legacy of the face of the earth.
Someone needs to hear your story...
There is a reason all of us are here. I am not even going to begin to try to understand what anyone else's pupose in this life is. The fact of the matter is that daily, for a very lony time, I have witnessed people connecting, caring, going beyond their own comfort zone to make a difference despite their challenges.
I have also seen people bow to their prognosis. And run with it. Finding the first spade they can to start digging their own grave.
But maybe that was their legacy.
Like I said. I cannot even begin to pretend to understand...but I can sure feel that sting when ones I love throw in the towel and wait for the reaper to carry them home.
In honor of the ones I have lost, the ones who are still to grace my life with their story, and the ones still holding my hand:
This is Gastroparesis/Chronic Intestinal Pseudo Obstruction/Digestive Tract Paralysis (DTP) month. This blog is now over a year old. And in this last year I have come so close to losing my life just to find it again in the most surprising of places.
I have a beautiful diffenbachaea in my room that I have named Henrieta. She is a bit over two years in my charge, and sits facing the window. She has the best care offered, basking in the setting sun.
Yet waning in the winter months as the rays grow weaker. She was reduced to nothing more than a stump by December and well...here she is standing.
In September I was handed a walker due to muscle wasting. In January I wasn't expected to return home.
I did. I came home 100% wheelchair bound. I was threatened with the loss of my independence by means of medical guardianship since I had refused forms of treatment that I knew would harm me.
And I came home anyway as my own person.
Less than two weeks later I was admitted on emergent basis to a critical care hospital that takes very few Medicaid patients that aren't terminal. It was here that I reconnected to the rhythm of my heart to the beat of a musical note, in efforts to walk on my own. Forty some odd days later I came home again...
In a wheelchair.
I was put on TPN to save my life and after four codes and things I cannot recall, except being awake to watch my diligent and caring surgeon remove my external and implanted central lines, the strongest antibiotic in the world to treat severe bactremia that has left staph forever dormant in my system.
I came home again.
All to say...this was their idea of treatment. And it didn't work.
Since May, I had a solid three weeks successful oral intake. Using tools learned at aforementioned critical care hospital I now walk most of the time. I have only been in hospital once and only for eight days.
In the last year I have been willing to take failure and mold it into success. Over and over. I have been willing to say "Help", and receive it without shame. I have been able to share with you this season, the victories, the defeats, the bitter and all gradients of flavors of this crazy life with a chronic illness.
In symptom management, the doctor usually is willing to give anything asked for within reason. And that is what my treatment is right now.
But my team is as hard headed as me. They have helped me up when I many have well been content to sit on the ground and curl in the fetal position...
In symptom management we think of comfort in times of duress. The decline is inevitable...
Someone needs to hear what you have to say...
Right now we are working on something different. I'm not going into detail as I am so cautious. But do know that there is a reason for thriving anyway.
I should not be here. I should have been gone long ago. I should not be able to stand to walk to the door or give my brother a hug. I should not have brain energy to experience joy unmeasured as a fair haired little girl crawled up on my couch next to me to draw something for me with markers on construction paper as a talkative young boy asked questions as he gingerly places a hand on the IV pole in my living room...
"...will you be coming back on top?"
I will. In what form I know not. And I cannot even begin to pretend that I know...
But no matter what, and in this life of mine, I will use my voice. As much as in the last year I may have been contented to lie down even if the moments were short lived, I am committed to living up to the theme for the rest of my life.
To be Thriving Anyway.
Someone needs to hear what I have to say.
Someone needs to hear you too.
In loving memory of Shea, a sister in the battle against DTP
In honor of Grady Carl, my kindred spirit and with me always
Dedicated to Philip Nicolas Peterson, who shares my life and my story.