Posted in Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Faith, Gastroparesis, Invisible Illnesses, Life Lessons, My Life, Normalcy, Physically Disabled, Rare Diseases

I’M NOT BROKEN!

Some days, all I want to do is scream out for the whole world to hear, “I’m not broken and I don’t need you to fix me!” I’ve looked my wheelchair over from top to bottom and I’ve checked myself from head to toe for signs indicating or requesting that every person who sees me out of my house stop me and act like it’s their personal mission to heal me. Before I go on, I would like to say, I don’t have a problem with prayer. I’m a Christian and I believe in the power of prayer. However I’m sick of people preying on the disabled.

I was at Kroger the other day, minding my own business, trying to quickly pick up some low-fat, low-fiber, protein packed food. The foods I rely on for protein are not available for purchase anywhere in my small town. I have to travel at least 45 minutes to the nearest Kroger or Wal-Mart, just to buy tofu. I asked about tofu one day at a local grocery store and had to explain what it as because the store employees didn’t even know what it was.

So, I was at Kroger. I’d just passed through the fresh produce section and entered the area where the soy products, such as tofu, were located. An older looking gentleman stopped me and asked a simple question, “What are you doing in that?” He was referring to my wheelchair. I wanted to scream, but I was taught as a child to respect my elders and to be kind to everyone. I thought to myself, “Isn’t is obvious?” Given he was a complete stranger, he received the short sweet version…I have complex regional pain syndrome and it causes pain and weakness in my leg. The man went on to tell me he had a back surgery and it had saved his life. Then he went on to tell me everything I needed to do to get better. The only part of his plan that stuck with me was “massage.” Just the thought of someone touching my leg makes me hurt. I thanked him for his advice, although I don’t really think I was thankful, and went on shopping, thinking I’d probably never see this man again. I was wrong. During that very same shopping trip, every time he passed the aisle I was shopping in he stopped to talk. Although I know it’s a rude behavior, I’ve become pretty good at ignoring people like that. When I pretended to be so interested in rice noodles that I didn’t hear him, he started talking to my mom. He asked her if she was with me. At one point, he passed the end of the aisle I was shopping also in and commented, “She’s not been healed yet.” I suppose he was expecting a Kroger miracle.

On the way home, mom and I discussed what had happened to us at Kroger. I kept asking, why do people ask “What a person is doing in a wheelchair?” To me, it’s obvious that the person has mobility issues and is using the wheelchair to get from point A to point B. For some reason, although wheelchairs, walkers, and canes come in all different sizes, people think they are daily living aids for old people, not the young. I jokingly told mom that I should have told that man I was just sitting in that wheelchair because I thought wheelchairs were sexy and I wanted to see how many creepy old men I could attract. Of course I’ll probably never really say that in public, because I would be too embarrassed, but come on, what did he think I was using a wheelchair for. They aren’t cheap and you don’t just choose to use one because it’s the latest fashion statement. Maybe I was using that wheelchair to try to get a suntan inside the Kroger store or to walk my invisible dog or to imagine I was deep in the ocean in a submarine. I’ve always heard there’s no such thing as a stupid question, but sometimes I feel like giving sarcastically stupid answers.

Like I said, I am a Christian. I do believe God has healing powers, but I don’t believe in picking out only the obviously disabled to pray for or prey on. If you see me in the store and want to pray for me, go for it. No one is going to stop you. You don’t have to know my name or what’s wrong with me in order to pray.  When you pray for that girl in the wheelchair, God is all-knowing and He is going to know who you are praying for. God wants us to pray for the sick and injured, but He also wants us to pray for the healthy. If your going to pray for me, I ask that you also pray for yourself and every other shopper in the store. Everyone needs prayer.

I haven’t yelled at any one yet, but I can’t make any promises not to yell in the future. When you see someone in a wheelchair, please accept that we are just like you. We have feelings just like you. We came to the store to shop, just like you. Just because we are rolling around on wheels instead of walking on two legs doesn’t really make us any different. Many of us have been in a wheelchair for years and we are tired of the million and one people who are always offering advice on what we should be doing different. I realize you may think you are helping by offering the solution that worked for your dear aunt’s coworker’s bother’s friend or by praying for healing, but drawing attention to every disabled person you meet in life is just that, drawing attention to our differences. Our bodies may work or look a little different from the majority of the population, but deep inside we are just the same as everyone else. We are trying to live our lives to the fullest. Our physical appearance and abilities may be different, but we wish to be treated with dignity and respect the same as anyone else. If you aren’t going to stop everyone that looks healthy and able-bodied, why stop me?

 

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Posted in #MyMightyMonth, Faith, Knitting and Crafting

Crafty Love

Personal Prompt: Name one thing you love that you don’t have time to do any more. Come up with a plan to try and incorporate that activity back into your life.

Blank Paint Easel

I love doing crafts… from knitting to sewing to painting to paper crafts.  I love crafts.  However, I’ve not made time to paint in weeks.  I’ve just not felt up to doing much of anything.

I really enjoy watching how to paint videos and learning by creating a new painting.  While scrolling through movies on Netflix the other day, I noticed they now have painting lessons on Netflix.  I guess I need to pick a project, gather my materials, and get back to painting.

Creative prompt: You can have dinner with any famous person (living or deceased). Who do you dine with and why?

If I could have dinner with anyone, I would want to have dinner with Jesus in the human form.  I’m a little iffy about saying that because I know when He comes back it’s going to be to take His people home and I know there are a lot of people who are lost out in sin.  So, maybe I could climb in that time machine I didn’t use the other day and go back and visit Him during the time He lived here on Earth.  I can’t imagine how amazing it would be to see the blind get sight, the deaf get hearing, the lame be able to walk, or the dead come back to life.  I can’t eat, so I would watch Him feast on fish and I would just admire His greatness.

 

Graphic from mycutegraphics.com

Posted in #MyMightyMonth, Faith, My Life

A Multi-Million Dollar Personality

Hey, did you know they have that save button over there for a purpose?  I had this post finished and ready to post, when the webpage stopped responding and had to reload.  I hadn’t saved it, so now I get to start again.

Personal Prompt: How would you describe yourself?  Ask a friend or family member how they would describe you and compare notes.

detective-notepad-and-pencilI’ve been trying to think of a list of words to describe myself and I’m having trouble coming up with a list because I don’t want to sound conceited or full of myself.  That may cause one to think I’m self-conscious or unsure of myself.  Those two words probably describe all of us at some point in our lives, but they don’t really tell you anything about a person’s true character.  I see myself as kind, caring, educated, compassionate, loving, full of life, and a lover of nature.

Other people tell me I’m trustworthy, supportive, helpful, faithful, and spiritual.  Sometimes I wonder where these descriptions come from.  I do try to be trustworthy.  I try to always tell the truth and if I say I’m going to do something I try to keep my word.  Sometimes my health gets in my way and it may take weeks to complete what may seem to be a simple task or request, but I always try to do what I say I will do.  Being supportive and helpful seem to go hand in hand.  While I often find myself needing more help than what I can offer, I do help others to the best of my ability.  I’m the type person who doesn’t have to be center stage.  I’m happy on the side lines cheering you on.  I’m there to celebrate your victories, but also there when you need a shoulder to cry on.  Faithful and spiritual… I’m not ashamed to stand up and say I believe in God and that I’m a Christian.  Being a Christian doesn’t mean I’m perfect.  I make mistakes the same as the rest of the world.  I know I fall short.  I could spend more time reading and studying my Bible, but I am trying to live my life right.

handicapped-symbolSome people would describe me as disabled, handicapped, or confined to a wheelchair.  While those words do describe my inability to walk or work, they don’t really describe me.  It doesn’t bother me if that’s the only words you can find to describe me, but be warned, when you describe me that way, what I hear you saying is that you don’t know the real me!

Creative prompt: You bought a lottery ticket and won $10 million. How will you spend your money?

dollar-signAfter paying my bills and buying groceries, my bank account is empty.  Therefore, I must admit that if I had ten million dollars to spend, I would start out being a little selfish.  I would begin by buying a piece of land and building myself a house.  I truly appreciate my parents allowing me to live under their roof, but a place to call my own would be nice.  Next, I would buy a wheelchair accessible van.  I can’t drive, but my mom could use a new vehicle.  She drives me everywhere I need to go.  Last, I would buy myself a new mobility scooter.  The one I currently own doesn’t run.  It needs batteries and a wheel.  If I purchased a new one, I would get one with four wheels and shocks.  I mainly use mine outside.  I’ve turned my three-wheeled one over several times and ended up getting hurt.  I think shocks would make my ride a little more smooth and less painful.  If I bought a new one, I could fix up the old one and donate it to someone who needs one for indoor use, but can’t afford it.

Dollar Sign.pngAfter buying what I would want, I would still have a whole lot of money left.  I would donate it to churches and charities.  I would start by donating to the church congregations I attend.  Then I would donate to charities that take care of orphans and sick children.  I admire places like the Center for Courageous Kids and Potter Children’s Home and Family Ministries, and would love to be able to help them out.  I would also donate to medical research.

If you are hoping for your part of my multi-million, don’t hold your breath.  I don’t play Owl Thank Youthe lottery.  However, if you have ten million dollars collecting dust I accept gifts.  No matter how much money you have, I encourage you to help others by donating to a non-profit or charity.  If ten million people donated just one dollar each that would be… you can do the math!  So, if you take my advice and make a donation, thank-you!

All graphics except dollar sign and handicapped logo are from mycutegraphics.com

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 Christmas, Faith, Family, My Life

Christmas Memories

I remember as a child going to bed early on Christmas Eve.  We always waited until Christmas Day to open our gifts and somehow going to bed early was supposed to make Christmas arrive sooner.  I can remember the excitement of wondering what I would get each year.  Sometimes our gifts were store-bought, while other times we received things mom and dad had made special for us.  My three siblings and I would get up at two and three o’clock in the morning.  We would wake our parents up, talk about the birth of Jesus, and open gifts in the middle of the night.  We realized Christmas probably wasn’t the day Jesus was actually born, but we chose to celebrate His birth on that day.

Around six or seven mom would cook breakfast.  When I say breakfast, I’m not talking a small breakfast.  We had biscuits, gravy, eggs, hash browns, ham, bacon, sausage, apples, and homemade jams and jellies.  We would gather together around the family table, say a prayer of thanks, and enjoy time together as a family.

Tonight, it’s Christmas Eve.  I’m in no big hurry to go to bed.  As an adult, Christmas just doesn’t seem to have the excitement and magic it had when I was a child.  Instead of the big homemade breakfast I enjoyed as a child, I’ll be having a bottle of Ensure Clear for breakfast.  Then I’ll head off to church with my family.  After church I’ll probably come home and watch movies.  Now that two of my siblings are married and have families of their own, we don’t gather to celebrate the Christmas holiday until New Year’s Day.  Even then, I won’t be able to enjoy the meal because of my gastroparesis.

However, I refuse to let not eating and being in pain get me down.  There’s more to family than eating together.  Holidays have become commercialized and focused on gifts and food.  Everyone is so focused on gifts and food that they get stressed out and miss the important thing… family time together.  I think it’s time we stand up against the big box store commercialization of holidays and take our families back.  We won’t all be here forever and it’s important that we make time to visit…to talk and laugh.  We need to enjoy the little moments and not let them just pass us by.

This year, I may not be able to eat, but at least I get to be with my family.  Whether they decide to watch a movie, play a board game, sing Christmas carols, or something else, I’ll be there enjoying the time I have with my family.  Instead of focusing on what we get for a gift or what we are going to eat, let’s try to focus on love and not take our families for granted… not just this one day a year, but the whole year through.  Instead of worrying about who got what, let’s focus on making memories that will stay with us forever.

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

Lessons Learned

I truly believe everything in life happens for a purpose.  It’s all a part of a bigger plan.  We may not understand everything that happens to us in life, but everything happens for a purpose and sometimes, the most important thing is what we learn from the situation.

When I was diagnosed with CRPS/RSD, I was only fifteen years old and I can’t find words to describe how I felt.  As a fifteen year old I was just a kid.  I didn’t understand what was going on or why I had gotten this disease.  It seemed as one day I was a normal teenager hanging out with friends and having fun and then I woke up in pain and my friends all disappeared.  I was different and the teenagers I thought were my friends no longer had time for me.

When I was diagnosed with gastroparesis in my thirties, I realized life really hasn’t changed much.  I was diagnosed with another chronic illness that is poorly understood and I didn’t know why I ended up with it.

Both diseases have taught me many lessons.  Some of those lessons have been good and made my life better, while other lessons I’ve learned haven’t been good and need to be changed so that my life will be better.  I’ll briefly mention some of those lessons here and then elaborate on each lesson.  I would have to say that the most important and valuable lesson I’ve learned is to not take life for granted.  Another valuable lesson is to never lose hope or give up.  A lesson I learned that wasn’t so good and I need to change is hiding behind my smile and not being honest.

Don’t take things for granted… I’d like to be able to say I don’t take things for granted, but let’s face it… we all take things for granted… our family… our friends… our health… our jobs… etc.  As a teenager and young adult, I often complained about being on crutches and looked forward to the day I wouldn’t need them.  Today, I’m in a wheelchair and look forward to the day I will be strong enough to walk with a walker or crutches again.  However, I am trying to keep in mind how blessed I am to be able to get in my wheelchair and go places because there are many people in the world who are Belfast and can’t go anywhere.  I’m trying to not take my mobility for granted.

Never give up… never lose hope… each day I have to remind myself not to give up or lose hope.  There are days that I’m so depressed that I don’t think things will ever get better.  However I remind myself that with God nothing is impossible.  Tomorrow may bring healing or a great medical break through.  We none know what tomorrow holds.

Fake smiles and okay… Over the years, I’ve learned to smile through the pain and tell people I’m okay… even when I’m not.  With invisible illnesses, it’s often easier to smile and say I’m okay than to be honest and deal with disbelief and people who know how to fix everything.  I don’t like to think of myself as fake or a liar, so I’m working on unlearning this behavior.  I’m trying to be more honest with people.  However, I’ve found it’s easier to be honest with people who seem sincere and really want to know how I feel.  If someone asks how I am, but seems rushed and uncaring, they still get the smile and “I’m okay.”

There’s several other things I’ve learned, but I’ll save them for a later post.

Posted in #CRPSORANGEDAY, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Faith, Gastroparesis, My Life

Orange Day

I emailed almost every contact on my email account asking them to support CRPS/RSD awareness by wearing orange today or posting something about it on their social network account.  This blog is where I’m sharing my story, so I thought this is where I should share my #CRPSORANGEDAY photo.  So, here it is.

crpsorangeday-jpg

The orange wig is something I created when I went to a costume party dressed as a Cabbage Patch Kid.  My dog Pepper is wearing a knitted baby sized pumpkin hat.  He didn’t like wearing it, but we managed to get the photo.

I’m so thankful for the support my family and friends are showing.  I’m also thankful for my doctors and physical therapist, who believe in me and are trying to help me get better.  CRPS/ RSD and gastroparesis have changed my life… but I haven’t given up hope.  I know that I can do all things through Christ who gives me strength and with His help, I can overcome the obstacles of life.

If you or someone you know are fighting a chronic illness…don’t give up.  Stick together and continue to fight.  One person might be weak alone, but TOGETHER WE ARE STRONG!

Posted in Faith, My Life

Forever, Faith, Family

Before going on with my journey with Reflex Sympathetic Dystrophy, which seems like a never ending journey, I would like to take a moment to reflect on my faith and family.  I grew up living a mile from my grandfather, who was a Church of Christ preacher.  From the time I was just a few days old, I’ve always been close with my family and have always been active in the church congregations we have attended.

I spent a lot a time with both my birth family and my church family.  Sundays were always a day to spend with God and family.  I can remember many Sundays where we would all go to church as a family and then gather at my grandparents house for food, fun, and fellowship.

When I became a Christian, I had no idea that I would be diagnosed with Reflex Sympathetic Dystrophy (RSD), which later became known as Complex Regional Pain Syndrome (CRPS), approximately a year and a half later.  Faith and family is what brought me through those trying days of high school.  Faith and family are what have molded me into the person I am today.  I know everything happens for a purpose.  I don’t know why I ended up with RSD/CRPS or gastroparesis, but I know God is in control of my life and I trust Him to lead me where I need to go.

If I could go back and do something different with my life, I wouldn’t change a thing.  Due to my health issues I’ve met people and made friends that I probably would have never met without them.  While there are days I wish it would all just go away, I have come to appreciate my life just the way it is.  True joy comes from within and I’ve learned to accept myself just as I am.  For a long time, I refused pictures with my crutches in them.  Now I’m thinking about a wheelchair and picc line photo shoot.  I’ve realized God made us all the way we are for a purpose.  We should never be ashamed of who we are as long as we are living for God.

Girl Photographer

I’m hoping through this blog that my story, my daily struggles, and my triumphs might help someone else following along behind me on this same journey.

I’m thankful God blessed me with the family He did.  We might not be perfect, but we are His.

 

Graphic from: http://www.mycutegraphics.com/

 

Posted in Faith, My Life

School Days – Elementary and Middle

 

Before I begin to tell you about my school experience, there’s one earlier memory I must share.  The summer before I started school, my older brother carried chicken pox home with him at the end of the school year.  He was a loving older brother and passed them on to his three younger sisters.  It was quite an itchy summer in our house.

Books and Backpack

Seeing as I was born in late October, I was almost six years old when I started Kindergarten.  I attended Kindergarten Monday, Wednesday, and every other Friday.  I really don’t remember much about Kindergarten.  At the end of Kindergarten, I had to get glasses to help me see.

First grade is a little more memorable.  As a first grade student, I started school in one class and because my class was overcrowded, I was moved to another.  I knew the teacher in the new class, so being moved wasn’t a big deal.  I guess first grade is where most of my memories really start.  If I remember correctly, I had my first experience with death as a first grader.  I don’t remember all the details, but a classmate died.  It was also during first grade that I had my first hospital stay that I remember.  I had been hospitalized as a one month old baby for dehydration, but I have no memory of that.  As a first grade student, I had what my teacher described as a seizure at school and my parents had to be called to take me to the hospital.   The doctor at the hospital admitted me because I was running a fever.  A few weeks later, I saw a neurologist who diagnosed me with migraine headaches, not seizures.

After first grade, elementary school was pretty much normal.  I went to a public elementary school and learned reading, math, science, social studies, art, music, and health.  It took a lot of hard work and dedication, but I went all the way through elementary school without getting anything below an A on my report card.  The school I attended elementary school at only went to fourth grade.

Owl Owl Supply Monitor

I finished elementary school and began middle school.  As a fifth grade student, I earned my first B on my report card.  I look back on it today and laugh about it, but as a fifth grade student it was a big deal.  The middle school I attended was fifth grade through eighth grade.  It was also a public school and I studied the same subjects I did in elementary school only on a more advanced level.  While my middle school report cards may not have looked as perfect as my elementary school ones (there was a B you know), I still worked hard and expected the best from myself.  During middle school, I won several certificates, medals, and trophies for academic achievements.

As an eighth grade student, I had a minor accident that caused me to miss several days of school.  I was playing ball in the front yard at home with my siblings when I fell and slid across our black top drive.  Although my knee was scratched pretty bad there was hardly any blood.  I cleaned it that night and went to bed.  I had experienced many scratches and bruises as a child playing sports with my siblings, cousins, and friends.  Little did I know that this fall might be a life changer.  The next morning I woke up with a very sore knee.  Overnight the scraped knee I thought I had thoroughly cleaned the night before had  become red and swollen and had yellow-green puss coming from it.  I saw my primary care doctor that day.  He treated the infection with antibiotics and asked me to stay home from school so the knee could be left open to drain without the risk of getting more germs in it.  I did everything just like the doctor ordered, my knee healed, and I was able to return to school.

New Year’s Day of my eighth grade year fell on a Sunday.  I made a life changing decision that day by becoming a Christian and dedicating my life to doing the will of God.

I graduated eighth grade and was ready to start high school.  I’ve always heard those are the best years of your life.  I’ll let you be the judge.

 

 

Graphics from: http://www.mycutegraphics.com/