Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Inspiration, Life Lessons, Rare Diseases, Strength

Broken

Yes but no one whats a broken crayon

I saw this quote on Pinterest a few days ago and as a person living with a rare and several chronic illnesses, it made me stop and think about life.

When you buy a box of crayons, you expect unbroken crayons with those perfect little crayon points. You don’t expect a box full of pieces of crayons. As a matter of fact, most people throw away broken crayons. I hadn’t really thought about it until I saw the quote, but broken crayons do still color, so why do they get thrown away?

Living with multiple chronic illnesses, I can relate to the broken crayon that still colors. Due to illnesses beyond my control, my body is “broken.” I have pain and weakness in my legs and feet and am unable to walk. My stomach doesn’t empty, which makes eating difficult. It also adds to my weakness and causes me to be tired. Sometimes, I feel like people treat me like the broken crayon. Maybe I’ve got it all wrong, but it seems to me as though I get left out of things and I’m sure it’s because people think I’m “not able” or “don’t feel like it.” Maybe they are afraid to ask out of fear of hurting me.

Sometimes I feel like I, like the crayon, have been thrown out because I’m broken. However, like the crayon is still able to color, I still have purpose and am useful. I may not be able to run marathons or win pie eating contests, but there are lots of things I can do and am good at. My ears work fine and I’m a good listener. While I may be physically weak, I’m spiritually strong and am willing to be a shoulder for others to lean on. I may spend most of my days in bed because I simply do not have enough energy to get up, but I can talk on the phone and send emails. I can also inspire others going though similar situations by blogging about my experiences. When my carpal tunnel and neck pain cooperate, I can knit, paint, and do crafts. I may not currently be physically capable of working, but I still have purpose.

Being disabled doesn’t make me useless, it just points my life in a different direction and gives me a new purpose.  Small chunks of broken crayon are often disposed of because they are difficult to color with. However, I have melted broken crayons before and used cardboard and plastic molds to form them into new crayons. Instead of putting them in the trash, I made new, often larger, multi-colored crayons. Just like crayons broken into little pieces can make coloring a little more difficult, CRPS and gastroparesis have made my life more difficult. Many of the activities I did before CRPS (hiking, playing volleyball, etc.) are no longer possible. With gastroparesis, I can no longer eat many of the foods I once enjoyed. Just like I took the broken pieces of crayons, melted them. and molded them onto new crayons with new purpose, I’ve had to take my broken life and put the pieces together in a new way to find purpose. I’ve had to find ways to adapt. I’ve learned new things, found new hobbies, and adapted to my new life. I miss my old life before CRPS and gastroparesis, when things seemed easier and life seemed less complicated, but I’ve come to accept my new life and continually look for things I can do to make life better, both for me and others.

If you are struggling with a new medical diagnosis or changing abilities because your chronic illness is getting progressively worse, I encourage you to keep fighting. Don’t give up. As chronic illness warriors, we must stand tall and stick together. Talk to others fighting the same fight. There’s strength in numbers. You may feel broken, but know that broken crayons still color. No matter how broken your life may seem, you are very important. You are loved. Your life still has purpose.

 

Here are a few more broken quotes I came across that I liked..

King David committed adultery & murder - he sinned big, but repented bigger - he is a model of what real repentance looks like - he wrote Psalm 51 as an agonized cry to God for forgiveness - God not only forgave him but called David "a man after His own heart" Like & Repin thx. Follow Noelito Flow instagram http://www.instagram.com/noelitoflow

Beautifully Broken Quotes | Broken clouds pour rain, Broken soil sets as fields, Broken crop yield ...

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Life Lessons, My Life, Rare Diseases, Thankfulness

Lost and Found

As you my followers know, I keep asking myself why I am sharing my story.  I’ve been blogging since September and haven’t even told anyone who knows me about my blog.  I was surprised when complete strangers started following my blog.   I found myself questioning whether or not this was a good idea.  I’ve been scared and tempted to stop writing, but there is an inner voice within me that won’t let me stop.  It tells me to keep going.

I realized today what it is all about.  Today, through a video on the Mighty, I found a fellow warrior.  This young lady has CRPS, writes for The Mighty, and also has a WordPress blog #SIMPLYSABRINA.  I share this because her writing titled “2017: Acceptance” put what I’ve been feeling in words I couldn’t come up with.  Sharing my story on this blog has helped me accept my circumstances and has set me free.  Writing this blog has allowed me to open up and be me.  I’m learning to accept my life as it is and embrace my differences.  I’m learning that I don’t have to meet the expectations of others.  There may not be a cure for CRPS and gastroparesis, but through sharing my story, I’m finding emotional healing.  I feel free to be me.

Thanks Sabrina for helping this lost writer find her way!  Supporting each other…that’s what it’s all about.

Posted in #MyMightyMonth, Center for Courageous Kids, Courage, Faith, Life Lessons, My Life

Day 3 of 30

January 4…Wow, this is more difficult than I imagined it would be.  Some of these prompts cause you to stop and think about what’s truly important in life.  I debated on whether I should share today’s writing, but decided to go ahead.  So here it is.

Personal Prompt:  Write a letter to you future self.

Dear older me:

I couldn’t resist using that as my greeting.  If you remember your younger self, you know that we used to listen to K-Love a lot on the radio and their was a song about someone writing to the younger them and it started out “dear younger me.”

I’ve had a difficult day today, but looking back you may or may not remember it.  The important thing is that with God’s help, we made it through today. The road may not be easy, but with God all things are possible.

I hope you still go to church and trust in God.  I’m sure you’ve been through a lot, but I know He has been there for you.  No matter how difficult things may get, don’t give up and don’t lose faith.  There are going to be people who don’t like you, but that’s okay.  Just be yourself and do what is right and everything will be okay.

With Love,

A younger you

Creative Prompt: Write a letter to someone you admire.

Dear people I met at CCK:

You may not see yourselves as heroes or someone to be admired, but I do. Each of you will forever have a special place in my heart.

To the CEO and staff, you gave my niece and nephew a weekend of fun, with me their aunt with a disability, that we will never forget.  Who would have known that a weekend at a camp designed for children with disabilities would have been so much fun.  I admire what you have made available for children living with chronic illnesses.  Ms. Betty had a big dream when she built the Center for Courageous Kids and her dream has brought lots of smiles to children and adults alike.  A camp that accommodates the special needs of children with chronic illnesses was a great idea.

To the children we met, you are truly amazing. Although your lives may be difficult, your happiness and smiles bring joy to others.  Your courage gives me the strength to keep fighting.  You inspire me to be the best I can be.

To the parents of the children, you deserve the worlds greatest honors. Your love for your children is evident in the way you care for them and make time in your schedule to spend a fun-filled weekend with them at camp. You give of yourself and time to make their lives more enjoyable.

To each of you, I say thanks.  Thanks for being an inspiration. Thanks for letting me be a part of your life.

DR

 

Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Gastroparesis, Invisible Illnesses, Life Lessons, My Life

A Love/Hate Relationship

Have you ever thought you really hated something only to realize you actually love it?  I know people who wouldn’t even taste certain foods as a child, but have found them to be their favorite foods as an adult.  Well, my love/hate story has nothing at all to do with food.

The relationship started when I was a teenager.  I was diagnosed with Reflex Sympathetic Dystrophy.  While many of my so-called friends no longer had time for me,  a new friend came along.  Everywhere I went this new friend came along.  This friend was very supportive, but I didn’t want this friend.  You see, this new friend was a set of wooden crutches.  The pain was so bad and my right leg became so weak, that I couldn’t walk on it.

love-hate

Looking back, I realize that as much as I hated those wooden crutches, they carried me everywhere I went.  They helped me finish high school and start college.  As much as I hated them, they were always there when I needed them.

dscn4842I walked with crutches on an as needed basis for about six years.  Then my RSD got to the point that I was needing them all the time.  Wooden crutches became a thing of the past and I began walking with shiny silver-colored aluminum crutches.  For the next ten to twelve years, I had to have new crutches every two years because the hole that adjusts the crutches to my height would wear out from use.  Several pairs of old crutches now stand next to our washing machine…just in case someone else needs them.  They will work fine for anyone who isn’t the same height as me.  I gathered them together for a group photo…yes I believe I’ve had a little too much time on my hands.

dscn4845After about twelve years, moving became complicated.  My new-found friend was still willing to go with me and provide that much-needed support, but my legs didn’t want to cooperate.  That was when I realized I didn’t hate my crutches.  When my way of getting from point A to point B became a black aluminum wheelchair, I realized I didn’t hate my crutches as much as I once thought I did.

I spent all those years hating crutches and wishing I could get rid of them.  Now I’m wishing I could walk on them again.  I’m trying to build my leg strength so I can walk again.  Currently I can walk about six feet with a shiny, silver-colored, aluminum walker.  Six feet may sound like a short distance to everyone else, but for me it feels like running a marathon.

dscn4846dscn4847Each time I walk that short distance and collapse into a chair, I remind myself that we all crawled before we walked.  It will just take time.  With my gastroparesis and malnourishment, it’s probably going to take longer than I want it too, but I believe it will happen someday.  No matter what life throws at me, I refuse to lose hope.

By the way, if you noticed the small blue dog bone hanging on the wheelchair…that’s my doggie bags.  I’ve heard people I know refer to the take out containers at restaurants as doggie bags.  Those of us living with gastroparesis need doggie bags any time we eat.  Trash cans and commodes aren’t always readily available.  Those small rolls of bags they make for disposing of baby diapers or doggie doo are just the right size to carry with me when I am out.  I can cap them over my mouth, vomit in them, tie them up,  and dump them in the nearest trash can.  When I bought the dispenser, I had two choices…a dog bone or a fire hydrant.  As for the walker bag, it’s a one of a kind.  I made it using plastic canvas and yarn, both from the craft section at Wal-Mart.

Note:  After posting this, I thought of something I had recently read.  As I looked back at my Love/Hate image… yes I created that… I thought about an article I had read recently at TheMighty about asking personal questions about people’s disabilities.  I appreciate the writer’s openness and honesty.  The writer explained that someone had asked about her being to young to use a walker.  The writer of the article said the “Fantasy-Me boldly said, “You’re too old to be asking rude questions.””  There have been times in life I would have probably said that if it had crossed my mind. While I made the crutches different sizes in my image to create letters, after finishing it, I was reminded that mobility devices come in all shapes and sizes.  Chronic illnesses do not discriminate based on age.  Crutches, canes, walkers, and wheelchairs come in all sizes because they are for all ages.    For those of us who need them, they are simply tools or modes of transportation.  At 16, my classmates got cars… I got crutches… at least I could get from point A to point B on my own.  No, I’ve not always liked my mobility aids, but I’m learning to accept them and love them for what they do for me.

 

All photos/images are from my personal collection and are not to be used without permission.