I have always been a big proponent of calling a ‘spade a spade’ and telling it like it is. I don’t want things sugar coated or watered down to make them sound nicer or less scary. Give it to me straight or not at all. This belief was reinforced during my last doctor’s visit. I had been having one of those days… you know, those days that guy Murphy had in mind when he wrote up his laws. Yeah those days. Everything that could have gone wrong did and a 4 pm doctor appointment didn’t promise to turn the day around. After twisting my shoulder into a pretzel and having me touch my toes (for which I needed a crane to return to a vertical position), the term got flung at me like an out of control curve ball: degenerative disc disease.
My first reaction was a very loud, very unladylike snort. Of course…why not add another disease/syndrome/illness/ailment du jour to the long laundry list of my medical chart? I mean, after all, when you have two or three under your belt, the diagnosis are like eating those first few fresh baked cookies… you’re already screwed so why not eat the whole pan? After the snort, I began to get a little peeved… degenerative disc disease, it sounded so sterile and colorless. What exactly was it? What are discs and what do they have to do with past generations of my family tree? I walked out of there still scratching my head until I was able to Google the condition in my car.
Degenerative disc disease = A break down of the discs in the spine that causes gradual deterioration and is a condition that can be painful and can greatly affect the quality of one’s life.
I prefer something a little more straightforward in description, like Pancake Spine = Depreciation of the squishy things wedged in your spine and is a condition that will occasionally shoot a lightning bolt from the base of your skull down to your butt crack.
The new definition (let’s call it a Stephanition) keeps it real, is to the point and lets you know straight up what you can expect. Living with chronic illness is anything but mainstream and routine, so I propose that we change all offensive medical terminology to more appropriate terms that save us from wasting spoons on search engines and monotonous explanations to healthy people. I have listed few of my personal favorites below along with their original name and definition. As you can see, the Stephanitions are clearly the better choice.
We have forgotten how to laugh.
There. I said it. Not that I can blame a single one of us. Let’s face it, when you wake up, throw your leg off the bed and hear it echo in the room like a creaking door in a 1950’s horror flick, the giggle factor isn’t really at an all time high. I don’t think any of us can say that we even crack half a smile until at least a quarter past noon and a third of a way through that third cup of coff….uhhhh, I mean apple juice. (in case any non-specific rheumatologists that may or may not live in the southeastern part of North Carolina that may or may not have recently reamed me up and down for excessive caffeine usage are paying attention….I most definitely do not abuse the java bean. And I most definitely do NOT have my fingers crossed behind my back, either.)
1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.
2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.
3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.
4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.
5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)
6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.
7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.
8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)
9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.
10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
I thought I’d share the go-to super-easy, super-customizable recipe that I’ve been using for every meal that I’m not eating Thanksgiving leftovers lately lol.
- a few tortillas (you can cook extra to microwave later if you’re looking to save even more spoons)
- butter, oil, or spray oil
- customize with beans, meat, veggies, sauces, etc
- preheat oven to 400 degrees
- cover a cookie sheet with foil (so there are no dishes!)
- place a tortilla on the pan
- add cheese and toppings
- cover with another tortilla
- brush with butter or oil, or spray with oil
- bake for about five minutes on each side
These are so nice because they can be different every time I make them, so they don’t get too boring. Also, since they’re oven baked I don’t have to stand at the stove or worry about them cooking unevenly.
Please don’t forget to eat during the end of the semester, my fellow student buddies! You need your fuel! :)
I am not my Crohn’s. I am much more than that, in spite of Crohn’s, because of Crohn’s, and with Crohn’s. But I am NOT my illness.
Spoonie Life Hack
Everyone loves to spruce up their living space, whether it’s the living room, kitchen, or maybe even bedroom! This beautiful craft has 3 simple steps, and it looks so good! Do it in whatever color is your favorite!
1. Buy canvas and wooden letters.
2. Arrange letters/words to your desire
3. Glue (whether super glue or hot glue, whichever is your preference. I used hot glue) letters to canvas
4. Spray paint all one color.
Done! See how easy that was? I use it in decorating all over my house, in different colors!
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