What People Don’t Understand: Living with an Autoimmune Disease

30 minutes. A lot can be accomplished in 30 minutes. You could take a shower, read some of that book you never get around to reading, watch an almost full episode of your favorite show on Netflix (Parks and Rec. if you’re me), go for a quick jog, call your friend, whip up a batch of cookies, catch up on the stats from last night’s game, and the list goes on. So believe me when I say spending 30 minutes determined to open a can of tomatoes “can” be quite frustrating–to say the least. So frustrating and debilitating that when I pulled out the cans of tomatoes required for my recipe, I literally started the task with a pep talk. It went a little something like this:

“Okay you cans of tomatoes, listen up. I need you and you need me. You want out of that can and I want you in this oh so delicious soup. Please, don’t be difficult like the can of corn I tried to open the other day. Be better than the corn.”

Yet there I stood–30 minutes later–with a handheld can opener in one hand and a large knife in the other. The recipe required three cans of tomatoes and I had opened two. At this point my determination had turned into indignation. Beads of sweat glistened along my forehead, chunks of tomatoes were splattered across my face and along the wall, tomato juices clung to my frizzy curls, all I could see was red. I laughed at the ridiculousness of the situation and then cried for the same reason. I kicked the cabinet below me and slammed the can against the countertop. I walked out of the kitchen and into the hall–took a moment, took a breathe. I prayed. I screamed.

Opening a can of tomatoes is no joke.

And that’s what people don’t understand. When it comes to being the culprit of Rheumatoid Arthritis or any autoimmune disease affecting the functions of the joints, meeting the demands of the simple tasks performed as we go throughout our daily routines becomes seemingly impossible and requires a greater deal of energy and attention. Living life, to the most basic degree, becomes a diurnal hurdle.

People hardly ever give notice to the execution of the daily chores life requires them to fulfill. They are known only as minuscule, monotonous undertakings completed yesterday, today, and eventually tomorrow. Don’t believe me? When was the last time you actually took the time to stop and think about your hand turning the key to start your car? Or the way you hold the pen or pencil you use? What about buttoning your blouse? Tying your shoe? Placing the hair tie around your ponytail? Holding the razor to shave your legs or you beard? Pulling your pants up after you go to the bathroom? Twisting a door knob? Shaking someone’s hand? Putting your shoes on your feet? Using your arm to prop up your head? Unscrewing the cap off of a water bottle? Washing your hair? Opening a window? Getting the itch right behind your shoulder? Walking down those stairs you walk down everyday? Lifting the lid off of a container? Unbuckling the straps of a car seat for a small child? Removing your wedding ring before you wash your hands? Opening a can of tomatoes?

We–the victims of swollen hands, fat toes, popping knees, shoulders that carry around invisible 50 pound backpacks, and other torments from joint inflammation–think about these things EVERYDAY. We fear them. We despise them. We wish they would go away. Behind every shoe we tie, hand we shake, etc. there lies pain and with that pain, the utmost amount of vexation.

Autoimmune diseases are real. Thousands of people face them every minute of everyday. According to cdc.gov, an estimated 52.5 million adults in the United States were told by a doctor that they have some form of arthritis, rheumatoid arthritis, gout, lupus, or fibromyalgia. An even staggering statistic, an estimated 294,000 children under age 18 have some form of arthritis or rheumatic condition; this represents approximately 1 in every 250 children in the U.S.

So, to my readers out there experiencing similar physical tribulations, I understand what you’re going through. I hear your silent cries. Hang in there. Remember, everything has purpose and the Lord loves you. You can always draw on him for strength.

And to my readers blessed with bodies free from inflammation and a broken immune system, next time you meet someone who says their hands hurt them or run into a friend you know with arthritis or a similar condition, I hope you will stop and think about what they may be feeling. I hope you will hug them and remind them how much you care about them. You may not know exactly what we are experiencing, but sympathizing can still speak wonders. There is no cure for arthritis in its many forms, rheumatoid arthritis, gout, lupus, or fibromyalgia. However, I believe and am convinced love cures just about anything and everything. Please, be grateful for the body God has blessed you with. Take advantage of your mobility! After all, the last time you opened a can was probably done with little effort and scarcely any thought and that, ladies and gents, is a blessing in and of itself. ❤

With love,

Kelsey With Some Jo

Dropping Desks: From West to East Coast

Ever since I moved to New York City regular phone calls to my parents are something I look forward to. Often times we find ourselves scanning through the flood of experiences and happenings that make up our everyday lives. During a recent phone call with my dad, he shared a light hearted comment made by a friend of his regarding New York City and its customs. The comment was this, “New York will beat you down and then drop a desk on you.”

This statement got me thinking. February will mark the six month I will have called New York City (Brooklyn to be exact) home. I thought of the transition from west coast to east coast, the expenses of living in the big apple, and everything else that has come along with my transition. I asked myself, “Has New York beat me down and dropped a desk on me?” Well the answer came immediately…heck yeah it has. But as I started listing off the evidence of this claim I soon made a beautiful discovery. Being beat down and having a desk dropped on you can be a blessing in disguise, and for me that’s exactly what it was.

The Beat Down

Traffic lights, one way streets, street sweeping, parking meters, fire hydrants, parallel parking, people, more people–oh and did I say PEOPLE? Whenever you watch movies or shows based in NYC you see loads of people walking the streets, riding the subway, and out and about. I guess I thought because of how many people commute, owning two cars in a city like this wouldn’t be that big of a deal. WRONG. My first beat down came with the unprecedented shower of orange tickets waiting happily under my windshield wipers.

Parking a car in New York City =Nightmare. Parking two cars in New York City=Death.

The list of restrictions for parking went on and on: Metered Parking here, No Parking there (only during certain times of the day of course), no parking within a fifteen feet radius of a fire hydrant (FIRE HYDRANTS ARE EVERYWHERE), Tow Away Zone, and my personal favorite, No Standing Anytime–the worst sign invented. It basically is saying your car is a person and cannot “stand” anytime where this sign is present. Oh you didn’t know cars could stand? Well prepare to be mind blown because they can. Yeah let’s just say I paid roughly $500 in parking tickets within my first month of living here. Matter of fact, I recall one day in particular being ticketed $115 twice in one day (like I said before, FIRE HYDRANTS ARE EVERYWHERE).

The Desk Drop

The beat down was a drop in the bucket compared to the desk drop. Job complications resulted in a delay of pay upon my move to the concrete jungle. My living expenses had tripled from that of my small town in Utah, to that of Brooklyn, New York–a city housing a large portion of the world’s wealthiest people.

Needless to say, paying for day to day living expenses proved challenging. Money was tighter than ever before and food turned into a sore topic. Oatmeal soon became my best friend. If I wanted a snack, I ate oatmeal. When dinner time rolled around, I ate oatmeal. Let’s just say my stomach became well acquainted with a warm bowl of mushy oats. (Not to complain, I love oatmeal still to this day!)

Out of options, I felt forced to seek assistance from welfare services for food.

As I helped the workers load my trunk with food I noticed a large bag over-flowing with fruit. I love fruit, but there is too much here. It will go bad. Someone else could eat this–could need this. I thought to myself. I waved down the lady checking off the list of items being carried to the car. I explained to her my predicament with taking so much fruit and asked her to take some back. She refused to do so and with a smirk replied in a thick New York accent, “If it’s on the list, you take it.”

I don’t know what it was about this moment. Maybe it was watching the food get loaded into the car–food I did not pay for, did not earn. Maybe it was the wave of home sickness which washed over me after hearing her speak. Maybe it was just one of those  emotionally imbalanced days. Either way, whatever it was, it unhinged me and as soon as I closed my car door tears flooded down my cheeks. I sobbed and sniveled the whole way home. I hated New York.

The Blessing in Disguise

I will admit, after all this there were moments I questioned the soundness in my decision to move to New York City. God inspired me to move here, but the chain of events which followed my submission to His will seemed incoherent to the loving, gracious nature I believed Him to possess. Why would He send me here if He knew all this would happen? It just didn’t make sense. In some ways, I felt cheated.

The blessing in disguise started with the beat down–a crucial component. The comment my dad’s friend made about New York City said the individual would first be beaten down and then a desk would be dropped on them. Hence, the desk being dropped wouldn’t have been nearly as traumatic without the beat down. The beat down had to happen. I could see how at first glance this doesn’t seem like a blessing in disguise, but that leads me to my next point.

Often times in my life I will experience heartache and then soon after experience something far worse. This can be likened to the desk being dropped. Why does this happen? IF GOD IS REAL, why would he allow for us–metaphorically speaking–to be beaten down and then for a desk to be dropped on our pained, bruised bodies shortly thereafter? WHY? The answer…Familiarity breeds complacency, complacency hinders growth, growth brings us closer to God, and a closeness to God brings us joy. God is all good. God is love. AND HE DOESN’T PUT US THROUGH PAIN.

The attack of the devil in this world is what causes us to suffer, and our lineage that goes all the way back to the natural man of Adam & Eve. However, Christ also dwells inside each of our spirits. God doesn’t give us pain, but He pulls us closer to Him amidst our suffering through the grace and mercy of what Jesus Christ suffered for you and me.

Stepping outside familiarity shows God we want to learn. Following His will shows Him we want Him to be the teacher. If you want God to be your teacher, move and push (Pray Until Something Happens). When you move and push, you will find the desire to know Him grow within you. This desire is not placed their on your own merit, but it is the Holy Spirit of Jesus Christ working in you. THIS is what leads to God. And God will show us how to grow.

 “I have said, Ye are gods; and all of you are children of the most High.” – Psalms 82:6

My tribulations in New York City forced me to grow. I prayed without ceasing. I found the patience to endure. I counted my blessings. I loved fiercely. I focused more on those around me, less on myself. I smiled when I wanted to cry. New York’s beat down and dropped desk brought me closer to God and to my deepest, truest self–found only in the Spirit of Jesus Christ. I learned to be happy without all the extra “stuff” or without things going just the way I wanted. I learned to love Jesus and see Him as the source for my joy.

May God bless you–whoever you are.

With love,

Kelsey With Some Jo

P.S. I ended up eating all the fruit The Bishops Storehouse gave us. It’s okay to accept help from people sometimes. It takes someone with courage to do so! Don’t let shame or self-pity keep you from allowing others to serve you. They are furthering their relationship with God by so doing. ❤