Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

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Fear of the Future

Children dream about  the future with anticipation. Instinctively they push their way through childhood, all too quickly. As adults we obsessively plan wishfully dreaming about a bright tomorrow, and we prepare pushing forward. The future. A blank slate. Endless possibilities.

For many spoonies the future is associated with fear. The luxury of dreaming of the future (in an aspect) has evaporated. Fear flows through every thought associated with the future. Mainly because our health is so unpredictable. When I first became ill I struggled a lot with my emotions. I tend to be more of a type A personality. I tend to be an overachiever, expecting too much from myself. Even growing up I worried excessively. Insecurity feed my worried mind. I have learned to focus on the present, today has enough of its own worries and problems. At times I avoid thinking of the future. There have been times that my anxieties associated with the future dictated my life making me extremely emotional and disrupting my sleep. Questions like how am I going to survive if I have a terrible flare and I’m living alone? How will I keep up with everything living on a college campus? Will I be able to work full time? Can I really have a normal life? If your around my age, I am sure similar questions have flooded your mind. I am sharing this to let you know that your not alone. Fear of the future with an illness, in my option, is completely normal. We battle a lot daily and it is difficult to balance it all. It is hard to attempt to plan a normal life.

This fall I will be going away to school. I am excited about this new chapter in my life but like most people I am nervous as well. Most times our fears are irrational and never occur. I worry about my academics, the translation to campus, my health, making friends, and balancing everything. I attempt to avoid obsessing over it. Fear is normal. I have every reason to be worried, but worrying isn’t going to help me.Stress negatively impacts chronic illness. Anxiety isn’t always in our control.  I know determination will assist me in the transition. I am fearful but God is in control. I know this is the next step for me.

Birthday

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My parents and I all have our Birthdays in January. What’s even more unique is my mom and I share a birthday, which is today January 28th. The first six years of my life I was an only child. I adore being a big sister, but I am grateful for the years I spent as an only child. I believe those years allowed me to develop a special bond with each of my parents. “You love your parents, but as you get to know them you fall in love with them.” I believe this quote is absolutely true. As a child, our parents are heros. As teenagers, we drift away from our parents. We are so consumed with our lives, we don’t take enough time to get to know our parents and cherish the small amount of time God lends them to us. I cherish the time I have with my parents.

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My mom and I have always been close. She is the reason I am who I am today. I couldn’t ask for a better mother. God has truly blessed me. She has been with me for every appointment, ER trip, urgent care trip, every test, and every surgery. She’s the one who calms me down when Prednisone makes me crazy or when I’m just overwhelmed with everything. She is a huge encouragement and the source of strength. I am blessed that she introduced me to the Lord and raise me in a church. I am blessed that my mother encouraged and allowed me to go on missions trips and retreats. She always encourages me to lean on the Lord and to find strength in him.

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I wish I could remember all the wonderful moments we shared together as I was growing up however my illnesses have impaired my memory. I cherish the few things I remember, the stories I am told of these moments, the home videos and countless pictures I have.

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I know my illness is extremely difficult for my mother, which is heartbreaking for me. She is an admirable woman. I can only strive to be half as amazing, compassionate, and loving as she is. The strength she has always leaves me in awe. She has overcome and given so much in her life. I God every day that He blessed me with my mother. Thank you is not enough for everything she has done for me. HAPPY BIRTHDAY MOM!

Today, at 2:14 pm I turn 21 years old. I did not think I would see this day. There were many times I wondered if I would wake up in the morning or if the Lord would send his angles to carry me to his arms. I’m only 21, but I have fought for my life a number of times. There are a thousand reasons I should not be alive, but for whatever reason the Lord has allowed me to still be here. 

 Most people cannot wait for their 21st birthday, however I am not most people.As my birthday approached I began to dread it. Another year has passed, making me yet another year older. 21. I have never been a fan of getting older. For as long as I can remember I wanted to stay in toy land, to stay a child. For me growing up was something I dreaded and feared. Until recently I never understood why. Now I am beginning to understand this bazaar fear. The fear is rooted entangled with pain. I began have chronic pain around six years old. Continuously I have associated getting older with more chronic pain as well as my health becoming more complex.

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Though I’m not thrilled to be 21, I am grateful to be alive and to have another year. Today is a day to celebrate everything I have overcome, being alive, and what I have accomplished. While I was 20 I began my Facebook page, this blog, survived my Reclast experience, achieved a 4.0 GPA, and other various small accomplishments. I look forward with hope to what will unfold during my time as a 21 year old. I hope to achieve at least a 3.8 GPA, get my kidney stones to stop, stabilize my health, grow my blog, become closer to God, and be able to go away to college in the fall.

 “For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.”

Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart.”

I hope you have a terrific day, thank you for stopping by! Sending lots of spoons, hugs, and prayers ❤