[Descriptions of photos in the slideshow will be given below]
With some of my free time now that I am no longer stressed over finals, I’ve been working on putting together photos for insight into my every day life. Between medicine, mobility aids, ostomy supplies, feeding tube supplies, sensory overloads, etc. This is just the start. It’s based off of the Spoon Theory by Christine Miserandino, and how she related energy to spoons. So essentially I’m saying “these are things that take energy for me” but it sounds far more artsy to call it the “Spoonless Project” with that metaphor of spoons = energy.
The first two photos are of me in blue socks that have medical paraphernalia on the socks, and pills all over the floor with their bottles. Socks have become one of the things I trade a lot with my spoonie friends online through care packages. They are cute and make a great gift because you can never have too many socks, plus they can be so personalized which make them great little gifts for someone. The pills consist of tramadol for pain, zofran for nausea, prednisone for Crohn’s, and potassium supplements for my low potassium.
The third photo is of me holding a syringe and pushing liquid through my NJ tube. Since I have a hard time keeping oral meds down, I typically crush them in a pill crusher and add water and then put it down the tube like that. It takes a bit more effort but the pros are 1) I don’t have to worry about throwing it up and not getting it in my system 2) no nasty pill taste.
The fourth photo is my mini backpack with my pump sticking out. It takes a bit of effort every morning to set up my pump and hook up, plus the constant battle of trying to up the speed of my feeds so I get enough in versus if it’s too fast I get sick. And making sure I get enough water in me so I don’t get pancreatitis like I did last time.
The fifth photo is just my pump sitting outside by my mini backpack. I decorated my backpack to make it a bit more personalized. Between some star wars pins and patches, a few sassy pins and my Scottish thistle pin, they are just a few things that make my backpack stand out and represent me.
The sixth photo is of all the stuff for my feedings: my feeding bag and tube, pump, and bottles of formula. The setup for every morning.
The seventh photo is all of my ostomy supplies for every time I have to change my ostomy. Scissors to cut the wafer, Cavilon barrier wipes and adhesive remover wipes, barrier spray and ostomy powder, the wafer in it’s packaging, the eakin seal, and the actual ostomy bag. Every 4-5 days I change everything out, a tedious process that requires patience and energy. Which more times than not, I lack both.
The eighth photo is me in an ostomy cover I made out of geometric gem fabric. Because if I am gonna have an ostomy, I’m gonna rock it and own it. I am not ashamed of my ostomy. It has helped immensely physically, and the covers help me feel better about it emotionally.
The ninth photo is an arial photo of me holding my cane in my left hand. Admittedly I use my cane in my right hand since my left hip and knees tend to hurt me the most (probably doesn’t help that I sleep on my left more often), but I needed my right hand to hold the camera. Just supposed to give people a look through my eyes of walking with a cane.
The tenth photo is my new cane which is metallic purple with flowers, laying on hardwood floors with my boots. I wear the same black boots everyday, they give me some support in my ankles since I have a bad habit of wanting to stand with my ankles bent and in odd angles. I called the photo “Cute and Cripple” because cripple has been a slur used in the past that lots of people in the disabled community have been reclaiming, even starting a movement called “Cripple Punk” which says you don’t have to have a positive attitude, you don’t owe the world a smile for being disabled, you can just be yourself. Since my cane is bubbly and cute, it made sense to me.
The eleventh photo is my leather bound journal being held open by a ornate looking red bird paper weight, it has a sharpie pen lying on the one page and the words “Overwhelmed” wrote on the next with my communication jewelry necklace on the panel for “I am overwhelmed, I need space.” My therapist and I have been working on identifying and expressing feelings in journaling clearly since I struggle saying how I feel and identifying how I feel so often my emotions don’t get portrayed correctly or I just come off aggravated because I don’t know how to express myself. I have a really hard time letting people know I’m overwhelmed until it’s too late and I freak out, so this was sort of my reflection photography on identifying being overwhelmed.
The twelfth photo is a black and white photo of my old cane and boots against the door. It was supposed to represent the steps of leaving the house, getting on my shoes, and grabbing my cane. Simple photo.
I plan on adding more photos as I go, expanding on different things, maybe even finding some of my old photos I have of my injections from Cimzia and other things I took photos of in the past but don’t know where there are exactly except for on another SD card and I have so many SD cards filled to the brim with photos that it’s hard to figure out exactly which one has the photos when each one has 2000+ photos on it, mostly amtgard photos admittedly, but never the less. The start of my project.