Posted in #CRPS, #Gastroparesis, #RSD, Courage, Faith, Family, Invisible Illnesses, Uncategorized

April Showers Bring May Flowers

Note: This was written the last week of April, but didn’t get posted until May.

I’ve always heard people make comments about March coming in like a lion and going out like a lamb and April showers bringing May flowers. As April draws to an end, I look back on a month full of storms, not showers. I’m not referring to the weather. Instead, I’m referring to my life and the journey I have taken this month.

April came in on a Sunday. April Fool’s Day and Easter both fell on the same day. Not feeling well, I didn’t make it to church services that Sunday. Monday morning, April 2, I woke up early. I was feeling a little better so, I decided to work on a pair of socks I was knitting as I followed along with a  knit a-long sponsored by Red Heart Yarn. I knitted the same round of stitches several times and had to take them out because I made a mistake. A little voice in my head was telling me to put the knitting away and go check on my parents. I continued knitting, but just kept making the same mistake. So I laid the knitting aside, got on my power mobility scooter, strapped my wheelchair on behind, and went over to my sister’s newly purchased house.

I knew my parents were in the basement pressure washing the walls and there was nothing I could do down there, but I thought maybe there was something I could do to help. Upon arrival, only seconds later because my sister had bought the house next door to us, I transferred back to my wheelchair, rolled up the ramp, and went inside. Mom came up the stairs to see if I was the person she was hearing upstairs. She was pretty sure she was hearing my wheelchair and my dog Pepper. She told me that Dad was a little dizzy, so they were taking a break. I really didn’t think much about Dad being dizzy because he has an inner ear disease that throws him off-balance. I asked if there was anything I could do to help out and she asked me to clean a few things on the ground level of the house. I had been there about 20 minutes when I noticed a dark area on the bedroom floor where a register had previously been used to heat the house using a coal furnace. I knew my sister was wanting to restore the hardwood floor, so I decided to see if the black stuff would come off. I set down to clean with a small hand-held steam cleaner. Little did I know what was going on around me.

My dog, Pepper, curled up  next to where I was sitting on the floor. He laid there for just a few seconds and then started acting strange. He began to run around inside the house. He was running in and out of the empty rooms barking a low bark like something was wrong. I thought I better check things out. As I used my arms to raise my body off the floor and get back into my wheelchair, I felt a little dizzy and began smelling gas fumes. Certain odors, such as gasoline, perfumes, and cologne make me dizzy and cause me to have migraines. I decided I better go home before the smell of cleaning supplies mingled with gasoline made me sick. I also realized that if I was smelling gas fumes upstairs, there were probably gas fumes downstairs. So, I rolled to the door that opens to a flight of steps leading down to the basement. I was planning to tell Mom I was going home and that they probably needed to get some fresh air.

I opened the door and the smell of gasoline was so strong it nearly took my breath. I yelled, “Mom.” I listened and did not get a response. I proceeded to yell “Mom” several more times. I still wasn’t getting an answer. I knew my parents were supposed to be downstairs and each time I didn’t get an answer, I became a bit more concerned. Finally I saw Dad appear at the bottom of the steps. I told him I was just letting them know I was going to go home because I couldn’t handle the gas fumes. At least that is what I had thought I was going to do.

Dad informed me that mom was sick and laying on the ground in the back yard just outside the basement door. I thought they had probably breathed too many gas fumes and needed to go rest and get fresh air. I rolled out to the driveway, transferred to my mobility scooter and started around the house to check on mom. Before I was far enough around the house to see them, I heard Mom ask Dad how long she had been “out there on the ground.” That concerned me. When I came around the back corner of the house, I quickly realized things were worse than I had anticipated. Mom and Dad were both feeling ill. There color wasn’t good, they were short of breath, and they weren’t making a lot of sense. I knew we had to get home and get fresh air. At this point, I was still thinking gasoline fumes mingled with Clorox had probably caused some kind of reaction and was setting up chemical pneumonia.

Mom stood up and began to stagger home. Dad said he had to get the pressure washer out of the basement so the gas fumes would clear out. I sat in the driveway on my power mobility scooter not sure if I should follow mom or stay with dad. I sat on the end of the driveway, so I could see mom walk home. I waited and dad never came back to the front of the house. In that moment, all I could think was, “Why isn’t he coming?” I rode my scooter back around the house and found Dad laying over a pile of concrete blocks vomiting up jet black gunk. I knew time was ticking and I had to get help. I didn’t have a phone without going home, but how was I going to take Dad with me. I’m in a wheelchair and can barely get myself up and down. While quickly playing it out in my head how to get Dad home, I also realized I didn’t even know how mom was. Thankfully Dad raised up, looked at me with white foam around his mouth, and said, “I’m sick.” He denies ever laying on the blocks and vomiting black, so he must have been unconscious when I first found him. Dad was alert and able to walk home, although I honestly don’t know how.

I left my wheelchair on my sister’s car port and drove my power mobility scooter home as Dad walked. We arrived to find Mom was in the bathroom vomiting jet black stuff as well. Mom had enough sense to know she needed medical attention, so she had called 911 on her cell phone. She had given them her information, but due to poor cell signal had lost the call and wasn’t able to answer when they called back. I was on the way to get the phone when mom yelled to say I needed to call 911 and get help. That was my plan anyway. Living with CRPS and gastroparesis, pain and weakness make it difficult for me to get around. In order to check on Mom, I was going to have to get off my mobility scooter and slide down the hall on my backside. I knew she was in the bathroom and sick. I also knew she wasn’t answering every time I yelled to check on her. At this point my adrenaline must have kicked into overdrive or I went into shock one. I was able to stay calm even though I thought I was watching my parents die.

I called 911 and my uncle, mom’s brother, answered the call. While I felt horrible having to tell him I needed an ambulance for his sister, it was a relief to hear a familiar voice. As I gave him the details and checked on mom and dad, I realized they were falling asleep and I couldn’t keep them awake. I’m no medical specialist, but I knew that was not a good sign. During this conversation, the words carbon monoxide poison came up. Yes, the situation was much more serious than I had realized. My uncle, from 911 dispatch, told me I needed to get my parents outside to fresh air. I’m a small disabled woman. I do good to get myself in and out of the wheelchair. They were both falling asleep and I knew I couldn’t move them. So, I did the next best thing I could think of. I opened every outside door so the outside air would circulate in.

911 now had all the info they needed and we hung up. I couldn’t stand the thought of sitting there, thinking my parents were dying, alone. I immediately called my aunt and with a shaky voice asked her to come quick because my parents had been poisoned. I didn’t realize I had been too. My uncle working at the police department called me back on the non emergency line and asked me to call my uncle who lives nearby to come to us. So I quickly had two other family members there with Mom, Dad, and me.

The ambulance arrived only minutes later and took Mom and Dad to the hospital. Family insisted I had to be checked also because I had been in the house 20-30 minutes myself. I said I would, but I needed to make some phone calls first. Priority number one was to let my sister know Mom and Dad had gotten carbon monoxide poisoned cleaning her basement. I needed her to hear the news from me before it came through the small town grapevine. Whoever said word gets around in a small town knew what they were saying. I knew she worked next door to the hospital and I wanted to call her before someone else informed her an ambulance had just arrived at ER with our parents. So, I called her. My next two calls were my other two siblings. They both work for the school system. School had been canceled that day, so they had planned on coming up that afternoon to work at my sister’s house. I didn’t want them to show up and wonder what had happened to all of us. My last call was to ask my aunt, a former veterinary assistant, if my dog needed any treatment. Yes, I was more concerned about my dog than I was myself. He’s my knight in shining armor. If he hadn’t alerted me that something was wrong, we wouldn’t have gotten out and got help as soon as we did. She said since he was running around acting fine he would be okay without any treatment. If she had said he needed treatment, I would have taken him with me to the hospital. Someone could have picked him up there and transported him to the vet.

Having made connection with my siblings and knowing my faithful unofficial service dog was okay, I agreed to go to ER. My wheelchair was still sitting at my sister’s house and my mobility scooter is difficult to load, so my uncle, who had come to check on us, went to get my wheelchair. I was surprised when I went to ER that the doctor came into triage and checked me out. He already knew the situation because he was also treating Mom and Dad.

To make a long story a little shorter, we all had carbon monoxide poison and had to spend six hours in ER wearing oxygen masks. Mom and Dad had moderate carbon monoxide poison and I had mild. Thankfully they were able to blow off the carbon monoxide with oxygen and we were released to go home that same evening.

Since that day, a lot of people have told me how thankful they are that I went to check on Mom and Dad that day and that I stayed calm and got the help we needed. The doctor says another ten minutes and Mom and Dad would not have been alive. I know there are a lot of non-believers in the world, but I truly believe that was God making me think I needed to go check on Mom and Dad. I’m so thankful I listened and still have my parents here with me.

As we continued through April, the storm continued. Mom and I had a flat on the interstate going 70 miles per hour. The tire might have been shredded and had to be replaced, but God was watching over us again. We didn’t wreck and no one was hurt. I also dropped a half-gallon bottle of juice, which landed on my foot and broke my toe. The month wrapped up with another trip to ER and news that I must have some tests done in May because something isn’t right with my colon.

So, I’ve also heard said when it rains it pours. The April storms have passed and I’m looking for calmer days in May.

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Posted in #CRPS, #Gastroparesis, #RSD, Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Courage, Faith, Gastroparesis, Happiness, Invisible Illnesses, Life Lessons, Strength, Thankfulness

True Freedom

Growing up in a Christian home, the person I have become has been heavily influenced by both my faith and my family. From the time I was a young child, I can always remember being told that I should always tell the truth…that Satan is the one who leads us to lie…and that one lie leads to another lie and eventually the lie gets so big that you get caught lying because you can’t remember all the lies you have previously told.

Due to my immune system not functioning well, I’ve not been able to attend church as much as I would like to due to illnesses. When you are home and sick in bed, you have a lot of time to think and I must admit I’ve done a lot of thinking about John chapter eight verse thirty-two and the truth.

John chapter 8 verse 32

First let me give a little background information to help put my story into perspective. A couple of weeks ago I was feeling okay-ish (if okay-ish is even a word), so I decided to go to church. With it being flu season and the flu outbreak reaching epidemic proportions I chose to decline all hand shakes and hugs. I must admit, it felt a little odd refusing to shake hands and hug people I have known all my life, but it was for my own good. I have been advised by medical personnel to not be out around groups of people unless absolutely necessary. After being home for a couple of weeks, it was absolutely necessary I break free from the walls of my house. Just being out with people was putting me at a higher risk of getting sick, I didn’t need to chance getting deathly ill because someone was sick and didn’t know it yet. So, I politely explained I have a weakened immune system and asked for no bodily contact. Thankfully everyone understood and cooperated with me. They all know how sick I have been the past few years and that my body isn’t fighting off illnesses right now. I hadn’t been to church in a few weeks, so although they couldn’t get hugs and handshakes, I think everyone in the building came by to say hello and find out how I was doing. It’s nice to know people care.

This is when things got a little interesting. Someone came by and asked how I was doing and I answered with a smile and my usual answer, “I’m okay.” Now I must admit this phrase coming out of my mouth could mean almost anything. Okay might mean that my pain is a two on the zero to ten pain scale and everything seems to be going good today or it might mean that I slept two hours last night in fifteen minute intervals, I’ve already vomited ten times this morning, my pain is an eight on the zero to ten scale, and it’s only eleven in the morning. Many of us with chronic health conditions have learned that sometimes it is easier to smile and say we are okay than to explain how we really feel. There’s a few people in my life that have realized this and they ask what “okay” means.

To be completely honest, I wasn’t really sure how I was doing physically that Sunday morning. I didn’t feel any worse than normal, but I had been staying really tired, most likely because my heart was beating a little too fast (which it is still doing). Although I had a gut feeling that my test results would be normal, I wouldn’t get the results from my echocardiogram and blood cultures for three more days. By the way, I was right. The test results were normal. We have no idea why my heart is beating fast part of the time.

So, I had just been asked how I was doing and answered that I was okay. This is when someone else spoke up and said, “You lied.” I must admit that comment caught me a little off guard at first. I don’t get called a liar very often. While I don’t really feel like I’m telling a lie by stating I’m okay even when my health says I’m not, it was time for the service to start so I quickly justified my answer by telling the other person I was sure he does the same thing. The other person also lives with chronic health issue, so I’m sure he understood my answer.

Over the past few weeks, I’ve thought a lot about truth verses lies. While I don’t think anyone involved in the previous conversation really thought I was lying, it made me stop and think about how many times we answer questions with what we consider to be an honest answer, but if the other person really knew how we felt they would call us a liar. Two people don’t always perceive things the same way.

For a long time, I did lie about how I felt. I bravely put on that fake smile and said I was “okay” even when deep inside I knew I wasn’t. Like others living with chronic illness, I felt like that was my only option. I somehow convinced myself that I was protecting others by keeping my struggles to myself. I thought I was keeping others from worrying about me. Only since starting this blog, have I really opened up and started telling people how I really feel. Some might see sharing your struggles as a sign of weakness, but I’ve realized it isn’t. Overall people seem pleased to find out how I am really doing. I have encountered a few people who didn’t really want the truth, but that’s their problem not mine. I’ve come to the conclusion that if you don’t really want to know something you shouldn’t ask.

You might be reading this and wondering where in the world I’m headed with this story. I’m getting there. I share this story to encourage others fighting health issues, whether it be physical or mental, to open up and share how you really feel.

Just today (okay I just realized it’s one in the morning so it was really yesterday) someone was asking me questions about my CRPS and whether I feel it’s better, worse, or about the same today as it was three years ago or twenty years ago. I told the person from my perspective it’s progressively getting worse. Then the person commented he couldn’t imagine what it’s like. I quickly stated, “Oh, you get used to it.” I immediately felt myself crawling back into my shell. The room went quiet and I heard a voice in my head screaming, “Liar!”

At this point, I had a choice to make, I could leave the conversation and let the physical therapist think CRPS and gastroparesis was something you just get used to, or I could stand up for myself and every other person living with chronic illnesses. The choice was mine. Was I going to be brave and share the truth, knowing that the only way to be honest was to share my struggles and reveal my weaknesses, or was I going to allow myself to continue to crawl back into my comfy shell where I felt safe?

Admitting my weaknesses isn’t easy. In a matter of milliseconds my thoughts went everywhere. I thought of everything I’ve been through with my health, the people I’ve met at doctors offices from around the world, and the pediatric pain warriors I met at camp. Deep inside I knew this was more than just a chance to stand up for myself, I was defending every person out there who feels like they have to hide their true feelings behind that fake smile to protect everyone else. At that point, there was no doubt in my mind. I knew what I had to do. After a short pause I said, “No, you don’t really get used to it. You just learn to adapt.” I then explained how it’s easier, twenty years later, as an adult, to deal with the pain and the unknown future than it was when I was fifteen. I explained how difficult it was a month before my sixteenth birthday to be diagnosed with a rare chronic pain disease for which I was told a cure wasn’t known.  This is the first time I have discussed with anyone outside my immediate family how difficult it was to watch my classmates get excited about getting driver’s permits while I just wanted to walk. I had written it for others to read on my blog, but never said it aloud. Don’t let anyone convince you that typing something for someone to read in another room is no different from saying it for someone sitting in front of you to hear. Typing and saying something are two totally different things.

No, you never get used to the pain and everything else that goes along with CRPS and gastroparesis, but you can adapt and learn to live with it.  Does accepting my current state of health mean I’ve given up? Absolutely NOT! Each new day brings something new. I’ve realized that tomorrow will be whatever it is. Whether day break brings healing or struggles, I know I’m ready for it.

Okay to admit your not okay

Yes, my health conditions do cause me to experience pain, fatigue, nausea, vomiting, etc., and make life a little more challenging and unpredictable at times. I’ve realized it’s okay to admit I’m not okay. I’m the only one who knows how I really feel and I don’t have to protect everyone else by hiding it. However, I have also realized my attitude, not a medical diagnosis, determines how I am doing.

So am I okay? Yes and no. It depends on what you are actually asking and from whose perspective you are looking at it. Sometimes my brain says I’m fine, while my body is screaming help me.

I'm Fine

There is one thing I’m sure of honesty is always the best policy. If can’t let down your guard and openly share how you feel for your own good, think about those who are following you. Let’s build bridges to make the way easier for those behind us. It’s amazing how good it feels to be able to honestly say, no my life isn’t perfect…no I won’t ever get used to living with chronic pain…no this isn’t the life I imagined I would be living…but I’m going to make host out of it anyway. Yes, the truth does set you free.

 

Note: All images came from pinterest. If you own an image and either want credits added or don’t want me to use it, please contact me.

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?

 

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/