I was able to come back home yesterday :)
It is a joyous occasion. 40 days in the hospital, the setting that no matter how many times you've been admitted or for however long...it is never Home. This I see as a blessing; to be back in a place that is mine. This is my couch, my bed is in the next room over. The bathroom is themed in rubber duckies, and I can finally find a sense of security.
There was some progress. But I did not reach any of my goals. This doesn't mean I didn't have the needed support. It just simply means that sometimes, no matter how HARD you fight...there isn't much that you can do. This doesn't mean all Hope is lost. All it means is that you must conform to yet another new normal.
I left unwell and came home unwell. Sometimes you have to push through -- by yourself -- the limits others have surrounded you with. The term "never" should not be taken to heart, yet you MUST have a plan for pulling through to the other side. Otherwise, you will be left at an unmarked fork in the road.
Neither of them lead in the right direction. But there is always the option of blazing an unbeaten path.
Since I have grown so ill once more, all that I can do is FIGHT this downward slope. In a place where nothing makes sense, perhaps even the laws of gravity do not apply here. And maybe, everything will end up being alright.
I wanted to explore the topic of hating the things that could make you well. My wheelchair sits in front of me. The presence of it sends me into a fit. I want to find a blunt object and destroy it. I want nothing to do with it. I hate that my small wheelchair has outgrown me. That my specs have changed so much that I have to fork out $2, 100 for a new one. A so specialised chair that it is designed for a younger child. I may post a picture when it is delivered...or I may not. However, without this piece of equipment, I would be 100% bed bound and immobile until the end. So while looking at it disgusts me...I also love it. And this new chair will be much easier for me to use. Incase anyone is curious, I will be getting a Colours Little Dipper chair in lime green (plus a whole bunch of new specs: most importantly, anti tippers and brakes that are easier for me to use).
When I came home, my pain meds were screwed up (and still are now). My body feels as though it is breaking. And it is making my feeds impossible once more. I stare at it. I hate is with every fiber in my being. Even before my pain was at levels leaving me shrieking from the intensity, I still hated it. Many times I beg to try oral intake, and every time I fail. Yet this small device makes it so when the pain is a bit better, I will be able to receive sustenance. There are feelings of defeat, yet an overwhelming thankfulness. Because I am still alive -- I am surviving. And when I can increase my rate back up to deliver my required 2500 + kcal/day I will truly be able to thrive once more.
Because I am officially failure to thrive (FTT) once more. The diagnosis qualifies for extra services that I would never be able to obtain without it. The ring of the word "failure" reverberates through my body, and I can feel my heart sink to the floor. But once we put in these extra services, I know it will give me the ability to truly achieve wellness. REAL, TRUE WELLNESS. Seven days a week care, up to 24 hours a day. The doctors will come to my home. Clergy, counseling, physical therapy will come to my home. Fluids and IV pain medications will be available for me...at home. Blood draws...all of it. At home. I will never have to be rehospitalized again except for a very few things (x-rays, MRI's, CT scans, raging infections, uncontrollable seizures...). Less stress. And a fighting chance.
They have set parameters on my lifespan. Let's just say that it isn't very long. But I will never except these confines. I know in my heart that it isn't true for me as long as I can find medical professionals who are willing to accept me...who will help me.
I hate being sick. I hate hearing over and over: I am too ill. I am a liability. It terrifies me that my treating physicians will give me all the pain management that I request. That they can't say "no", because things are shutting down. My hair falls off in clumps, my very bones hurt, my airway closes and my first PFT is so bad that we are going to put in an exception request for a Bi Pap.
Yet it is such a gift.
"What the hell are you talking about?"
I may have said this before, but I used to be a VERY selfish person. I took everything for granted. I always just assumed that the next dawn would come and that I would be able to witness it every single morning. I just EXPECTED that things would be handed to me...including trying to recruit others to save me. That reaching out to help others was only something I could do when I was healthy again. That in order for me to get well, I had to focus on myself and no one else.
But as the decline has grown so rapid, I know the only thing that truly helps me -- helps me as ME, DANIELLE NICOLE PETERSON, and NOT my autonomic failure, NOT my failing liver and kidneys, NOT MY ILLNESS -- is pouring myself into others. Working to genuinely HELP others, because I care about and LOVE THEM, and participating in giving my best and my determination -- my drive to no longer be silent whilst others are desperately trying to search for their own battle cry -- THAT is what helps me. I would never have cared about anything outside myself IF IT WEREN'T FOR THIS LEVEL OF ILLNESS. I want to be reliable and trustworthy. I want to make a difference in the lives of other people. Never do I wish to abandon others as I have experienced personally. As I work on myself, and see others in need, my desire is to be a person who can perhaps supply them with just that glimmer of Possibility and pray that with time, support, and patience, that a sapling of Hope will begin to establish itself and grow.
No one is exempt from difficult and tragic events. At some point, ALL OF US will face something -- a treatment, a diagnosis, the paint you just bought that in no way resembled the swatch -- that we truly hate. But once it rolls around in our heads for awhile, and after becoming used to the scheme that makes up for our circumstances for the time being...bitternes evaporates. And in its place we find peace, acceptance, and even love toward the things that still strongly dislike. Contrary to popular to popular belief, love and hate can exist side by side.
But I beg of you: please promise you will not fall into the pit of indifference. Once we no longer care, once we give up and never attempt to pick up the pieces any longer...that is when the fight has ended within you.
Don't quit. Not even at the end. Don't lose hope. It may be all that you'll have in the end.
All of us are loved.
Pay it forward