Posted in Chronic Illness, Creativity, Family, Gastroparesis, Invisible Illnesses, My Life

Life Happens

I clicked on my blog and realized it has been a month since I last posted. My last story was a sad one, but the month since then has been even harder and sadder. With a close relative having a brain bleed and a good friend suddenly passing from this life, it has been a stressful few weeks. I’m surviving though and I’m thankful for my tight-knit family and friends. We’ve supported each other through it all. God brought us to it and He is going to see us through it.

I did have some fun this past month though. My niece and I made a birthday cake for her sixth birthday. We made a Candy Land cake. We got the idea from Cookies, Cupcakes, and Cardio. I thought it turned out cute and it was very easy to make. Thanks Cookies, Cupcakes, and Cardio for the great YouTube video. We baked a sheet cake, put a layer of butter cream frosting on it, and topped it with candies. We followed the YouTube video, but my niece wanted us to add the people from the game board (Grandma Nut, King Candy, Mr. Plum, Queen Frosting, etc.), so we copied, laminated, and attached them to popsicle sticks to put them on the cake. We also made edible gingerbread man playing pieces by molding airheads candy  using the actual plastic playing pieces from the game.  We pressed the airheads on the playing pieces, cut away the excess candy, and peeled it loose. We ended up having to stick toothpicks in the playing pieces to hold them up because the airheads drooped when they got hot. If I had found a way to mold them out of the Wilton candy melts, they would have held up better, but I was short on time and didn’t get that figured out.  Everyone loved the cake and my niece is already trying to pick out her birthday cake for May 2018. LOL

IMG_0201

Today I took some time for myself and did some browsing on Pinterest. Self-care is important and I enjoy browsing Pinterest for decorating ideas, inspirational quotes, etc. I can’t afford to buy a lot of things, but I can make a lot of cheap decorations for my house. I must admit that the following sign made me stop and chuckle. Those of you living with chronic invisible illnesses can probably appreciate it.  I hope no one takes the sign as me being rude or disrespectful. I promise I didn’t have any specific person in mind when I saw it. I don’t consider any of my friends stupid. I just saw it and found it funny because I often hear people talking about how good I look even though my big weight loss was caused by gastroparesis starving me. Being sick doesn’t necessarily make us look bad.

May anyone with a chronic illness get a good giggle out of this

 

I’ll try to post more in the upcoming days about what life has been like the past few months with CRPS and Gastroparesis.

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, My Life, Random Acts of Kindness

#Selfie Kindness

Note: I apologize in advance for the length of this post. I don’t normally write this much. This post is not intended to offend anyone. Sometimes life gets tough and we all just need to vent a little. When life gives me lemons, I try to make lemonade, but when the sugar bowl is empty lemons tend to be a little sour. Sometimes we all need to vent. I’ve been told it’s not healthy to bottle it all up inside.

Personal prompt: What is the kindest thing you can do for yourself? Make a list of ways you can accomplish this.

The way I see it, there are four kinds of people in the world: the person who doesn’t care about anyone including their self; the person who cares about their self, but no one else; the person who cares about everyone else, but not their self; and the person who cares about everyone including their self.

As selfish as it may sound, the kindest thing I could do for myself would be to take better care of myself. As cliché as it may sound, you can’t help others until you’ve helped yourself.

The first step I need to take in order to take better care of myself is learning to say no. It’s okay to say no if you don’t feel like doing something or you know it’s something that will make you sick. I need to learn to say no when I’m not feeling well and someone wants me to do something as well as when I know eating something is going to make me vomit. When something that looks and smells good is sitting in front of you and someone asks what did you think about my new recipe, it’s hard to say no.  However, for my own well being, I need to learn to say no.

Second, I need to learn to ask questions.  When eating at a restaurant or someone’s house, it’s impossible to know what ingredients were used without asking.  There have been times that I’ve eaten foods I thought were safe and ended up in the bathroom vomiting. Later I found out there was an ingredient used that my stomach doesn’t tolerate. If I had asked questions, I would have known it was going to make me sick.

Third, I need to train myself to eat small meals made with gastroparesis safe foods several times a day.  I’ve been told that people with gastroparesis need to eat six small meals a day instead of three regular meals.  My problem is remembering to eat. I’ve gone so long without eating much because of my gastroparesis that I don’t get hungry and sometimes I forget to eat.  I’ve been working on reminding myself to eat and I’m getting better at it.

Last, I need to learn to pace. I’ve been reading a lot lately about chronic illness and pacing. I must admit, I’m not good at it. I don’t have a lot of good days where I feel like doing things, so when I do, I try to get as many chores done as possible.  Then I crash for several days. I’m learning that if I do a little every day, even when I don’t feel like it, I don’t suffer as bad as when I try to do it all in one day.

Creative Prompt: Design a restaurant. What kind of food does it serve, where is it located, etc.?

I’m not sure what direction the writer of this prompt intended for it to go, but I know where I’m taking it.

Living with complex regional pain syndrome and gastroparesis, going to a restaurant isn’t always a pleasant experience.  I realize the designers of restaurants try to maximize space so that they can serve the most customers. Most sit down restaurants have booths or tables.  Having used a wheelchair for several years, I realize most of these restaurants were not designed to accommodate people in wheelchairs. I’m usually asked to sit in an aisle because the tables are too close to each other to allow a wheelchair between them. Other times, I’ve been asked to sit between the table my family is sitting at and the one next to it.  The first scenario puts me in the line of traffic where I’m constantly having to move so people can get through and constantly being bumped by people passing. My wheelchair is not only bumped by other customers, but I also get bumped by the waiters and waitresses carrying food to the tables. The second puts me in a location where I hear as much of what is going on at the neighbors table as I do my own.  Both situations are awkward, not only for me as the person in the wheelchair but also the people bumping into my wheelchair, the people asking to be excused, and the people  whose space is being cramped because I’ve been asked to sit between two tables. I might mention, sitting between two tables means I have to eat off a table beside me instead of in front of me. I’m left wondering what kind of loss it would be to remove a couple of tables and make more space?

If I were designing a restaurant, I would make sure each table had space around it to accommodate people requiring more space. Some restaurants have a “handicapped” accessible table, but if there is more than one person in a wheelchair, only one can sit there. I would solve this problem by making sure all tables were accommodating. I don’t know anyone who would complain about having more space between them and the table next to them.  Why not accommodate everyone?

My next concern would be restrooms. If a restaurant is only going to offer one handicapped stall, they need to ban employees who aren’t handicapped from using it. It doesn’t bother me that people who aren’t in wheelchairs use the stall. If it’s the only stall empty and you’ve got to go, by all means, use it, that’s what it’s there for. My problem is when people use the handicapped stall as their telephone booth, especially employees on break. Personally, I think common courtesy would be to take care of business as quickly as possible no matter what stall you are in so that the next person can use the restroom.  Restrooms were created for one purpose and it wasn’t to make phone calls, send text messages, or play games.  On several occasions I’ve had to wait to use the restroom and I could hear the person in there talking or texting on their phone… when they finally came out, it was a restaurant employee who couldn’t seem to apologize enough. I suppose if I had wanted to cause problems, I could have complained to the manager, but that’s not the type person I am. On one occasion I was at a restaurant and started feeling sick at my stomach. I excused myself from the table and went to the restroom. I was gone so long my mom came to check on me because she thought something might be wrong. I was trying to figure out how to squeeze my wheelchair into a regular stall. Sometimes I can focus on my breathing and it helps. This time it wasn’t working. I told mom, “I’m trying real hard not to vomit in the floor.”  She grabbed the trashcan and told me to use it. About that time the handicapped stall door opened and out walked a waitress. She knew I was sick. She had heard me say I was about to vomit. She apologized. Then, she got to listen to me vomit while she washed her hands. I hope the two regular sized stalls were occupied when she went in because if I had vomited in the floor like I thought I was going to, she would have had to explain to the manager why she was In that stall when the other two were empty.

I know it’s to save space, but what would it hurt to make all stalls accessible instead of just one? If I designed a restaurant, all bathroom stalls would be accessible stalls.

Now that I think of it why do tables and stalls have to be different for people in wheelchairs? Why can’t places just be accommodating for everyone? I don’t know anyone who would complain about their bathroom stall being more spacious or there being more room between them and the people at the next table or booth.  I’m sure waiters and waitresses wouldn’t complain about having more space to get through when carrying heavy trays loaded with food and drinks to the tables.  I’m sure people would complain if restaurants started putting in special tables and restroom stalls, for politicians only, or doctors, or lawyers, etc. People would probably boycott in the name of discrimination. The Americans with Disabilities Act passed a long time ago, but people with disabilities are still discriminated against in public and it’s legal.  Interesting.

Enough on that. I think I’ve made my point. I would name my restaurant Accessible Eatery. Not only would I design the building to be spacious and provide equal accommodations to everyone, I would also design the menu to be accommodating.  I would have a large kitchen divided into two sections. One section would be used for prepping, preparing, and plating regular meals, while the other section would be used for prepping, preparing, and plating major allergen free meals. Just because a person can’t eat certain foods doesn’t mean he or she should have to just sit and watch everyone else. I would have a diverse menu that offered choices to accommodate not only people with food allergies, but also people with dietary restrictions. Most restaurants offer something with lower fat, lower salt, and lower sugar, but usually it’s like the accessible table and restroom stall, there’s only one option available.

Now that I’ve said all of that, do I think this restaurant will ever exist? Probably not. We live in a money hungry world where everyone is out to make the most money, regardless of who they have to walk all over to get it. In reality, it would probably take billions of dollars to build and run a restaurant like I just described.  So, while I would love to see a chain of “Accessible Eateries” popping up across America and around the world, I doubt it’s going to happen.

However, if you are reading this post and you or someone you know works in a nice sit down restaurant either seating customers or waiting tables, please take into account that people in wheelchairs are paying for their meals the same as every other person who walks through that door on two legs. We want to enjoy a  pleasant meal with our families and friends the same as everyone else.  Please seat us in an area where we aren’t going to have to move or be bumped every couple of minutes. I’m not asking you to redo the building or provide me any special treatment. All I’m asking for is a little common courtesy. Is that too much to ask?

 

 

 

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, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Invisible Illnesses, My Life, Rare Diseases

Day 6 of 30

January 7

Personal Prompt: Write a letter to your illness or condition.

Dear CRPS and Gastroparesis:

Challenge accepted!

CRPS / RSD Awareness  also   Crohns and Colitis Awareness♥ my son has Crohns disease, anyone ever wanna chat Im Misa Blessed Lopez-Coleman on facebookYou may feel like you’ve won a few battles, but with the help of my God, my family, my church friends, and my doctors, I’m going to win the war.

You may have robbed me of many nights of sleep, but I didn’t give up.  Even with your many symptoms leading to sleepless night and tiredness, I’ve pressed onward and upward reaching toward my goal.  Your tiring attributes may make life more challenging, but I’m ready to fight back.

You may feel like you’ve stacked the deck against me by bringing pain, swelling, nausea, vomiting, and dehydration, but I’m here to let you know that it is going to take more than that to tear me down.  These symptoms that you so love may slow me down, but they will not stop me from living life and loving it.

CRPSYou’ve taken my ability to walk, but I just see that as another challenge.  I know with God all things are possible and  I will walk again someday.  Whether it’s here, leaping for joy, or later strolling down streets of gold, I’m going to walk.  I also realize that without me and the many others putting up with you, you would not exist.  We may not need you, but you need us.  When we win this battle you lose everything.

Shout out to all of the grave chronic pain/illness warriors out there ❤❤ <a class="pintag" href="/explore/Inspiration/" title="#Inspiration explore Pinterest">#Inspiration</a> <a class="pintag searchlink" data-query="%23ChronicIllnessQuotes" data-type="hashtag" href="/search/?q=%23ChronicIllnessQuotes&rs=hashtag" rel="nofollow" title="#ChronicIllnessQuotes search Pinterest">#ChronicIllnessQuotes</a>If anything, you’ve shown me how strong I truly am.  You may have taken away my ability to eat and walk; you may have given me pain, nausea, and vomiting, but you also showed me that when life becomes difficult, there’s nothing that my God and I cannot overcome.  You’ve taken a lot from me, but I’ve learned so much about myself because of you.

You have inspired me.  I’m sure you are surprised to hear that, but because of you I’m reaching out and trying to help myself and others.  I hope you aren’t disappointed that I refuse to be defeated.

As I said… challenge accepted… I’m not giving up…the battle is on!

With lots of love and gentle hugs,

A CRPS and Gastroparesis Warrior

 

 

 

Note: These images came from Pinterest.  If you own an image and want it removed, leave me a message and I’ll remove it. If you own the image and are willing to allow me to continue to use it, send me a message and I’ll update this post to give you credit.

I chose not to do the creative prompt today.  It was writing a five sentence story using ten random words someone else gave you.  It was an easy prompt, I just chose not to do it. Felt relief for 3 days after getting a nerve block... I cried when I realized that I couldn't remember the last time I felt relief. Endometriosis and Poly cystic ovarian syndrome are no joke!

I just received an email with next weeks topics.  I hope you are enjoying my journey.  I know I am.  I think this journey is intended for Facebook, Twitter, and other social media, but I’m not on any of those, so I’ll just continue to use this blog.

 

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 #MyMightyMonth, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Creativity, Gastroparesis, Invisible Illnesses, My Life

30 Day Journaling Challenge – Day 1

January 2 – The Mighty’s My Mighty Month 30 Day Journaling Challenge  is intended to promote self-care. Each day I’m provided with a personal prompt and a creative prompt.  Some days I may not feel like doing either, some days I may do one and not the other, and some days I may do both.  Sometimes I may write about something unrelated to the prompts.  It all depends on what is going on in my life and how I feel.

Personal prompt:  What are some things you want to improve in the new year?

ensureThere are two major things I hope to improve in 2017, my mobility and my motility.  Right now, my complex regional pain syndrome is keeping me from being able to walk and my gastroparesis is keeping me from being able to eat.  My main source of nutrition right now is Ensure Clear.  I’m currently waiting for insurance approval for a lead wire revision on my gastric stimulator.  After that procedure, they will turn the stimulator back on and try to program it to where it makes my stomach empty better.  Once my stomach is emptying netter I will be able to tolerate more food and have more energy.  Then I will be able to return to doing physical therapy and hopefully gain back enough strength in my legs to walk with crutches or a walker.

Creative prompt:  Come up with the pitch for a television show. (What’s it about?  Who stars in it?  Where does it take place?)

If I were to make a movie, I would want it to bring awareness to the challenges people with chronic and invisible diseases face on a daily basis.  In order for the movie to be more realistic and believable, I would want the stars to be people who actually have the diseases and their family and friends.  I imagine a reality show where the camera person follows people with chronic illnesses as they go about their daily lives.  Obviously the show would take place wherever the person lived and traveled.

Living with a chronic or invisible disease changes not only the way a person feels, but also how they go about doing things.  I would want the show to be open and honest so that those watching the show realize the effect these diseases have on us physically, mentally, and emotionally.  Filming would have to take place moths ahead of schedule to make the show more interesting.  I wouldn’t expect anyone to watch thirty to forty-five minutes of days that we don’t feel like getting out of bed.

This gives me an idea.  Over the next few months, I may start making short videos and posting them to YouTube.  If I do, you my reader’s will be the first to know, so stay tuned!

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 College, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Invisible Illnesses, My Life, Rare Diseases, Thankfulness

Normalcy – Thanks for seeing beyond my disability

Normalcy is defined by Webster as “the state or fact of being normal.” After being diagnosed with Complex Regional Pain Syndrome also known as Reflex Sympathetic Dystrophy, my life was far from normal.  At sixteen, while my classmates were getting learner permits and driver licenses, I was being diagnosed with a rare chronic disease and getting lumbar nerve blocks and epidurals.  While my classmates were anticipating their senior trip, I was preparing to have surgery.  When everyone else was worrying about not making it to class on time because of the long walk across campus, I was attempting it on crutches.

Then I got a Pride mobility scooter.  Although many classmates thought it was cool and wanted to play on it, life still wasn’t normal.  While others were parking on ramps because it was the closest place to the dorm door to park while unloading their belongings, I sat in the cold snow and rain because the only ramp to the dorm had a car parked on it.  On one occasion a campus police officer was a gentleman and waited to hold the door open as I exited the building.  When I rolled down the front deck, I came around the corner and there on the ramp set… yes he had just held the door for me and now I would to have to sit ten minutes waiting for him to come back and move his police cruiser off the ramp.  When I would call campus security to complain about a car on a ramp, they would come out, run the tags, call the owner of the car to tell them it needed to be moved, and wait with me until the person came to move the car.  Sometimes the officer would have to call more than once.  When the person would finally come to move their car, the officers usually laughed and joked with the person and warned them not to park there in the future, but since tickets were never written, no one seemed to take the warning seriously. A few times, more than one officer reported and I heard them talking between them about not being able to write a ticket because they didn’t have a ticket book or that the spot wasn’t painted to indicate it was a handicapped ramp. I wondered why an officer would report to the scene of an illegally parked car without a ticket book and why wait for the driver to come move the car if you are going to make jokes and make the ordeal seem insignificant.  It all seemed a little strange to me.

You would think going to class would be normal for all students, but my professors couldn’t even allow me to be normal student. I’ll never forget the first day of math class when the professor said with excitement, “I’ve never had a handicapped student before!” How was I supposed to respond to that? “Oh, I became disabled just so an idiot like yourself could feel rewarded having taught a handicapped student.” No, I didn’t really say that.  Instead I just smiled and overlooked it that time. After I decided to major in education, I had to take a class on including students with differences in the classroom without drawing attention to them.  I learned a lot in that class. The very first day, the professor pointed out that we all have lots of differences and that everyone has a disability of some sort…some are just more visible than others.  However,  for every disability, regardless of what it was, the professor used my name for the student in her example.  I can assure you I didn’t just imagine this.  When the professor wasn’t in the classroom, classmates commented that they had noticed the professor always used my name in her examples.  I must admit, that while I found my math professor’s comment slightly offensive, I was highly offended by the professor that was supposed to be teaching me how to include all students in class without drawing attention to their differences.  She certainly did not make me feel equal to the other students in class.

Then came the day that I was normal for a brief moment.  After ten years, I don’t remember her name, but I’ll never forget what she did.  I lived on the bottom floor of my dorm in a handicapped accessible room.  This classmate lived somewhere in the same building on a higher floor.  We often “walked” together to our science class.  Our class was on the fourth floor of the science building and as we approached the door one day, she looked over and asked if I was going to take the stairs or the elevator. I looked over at her thinking she was just being funny and realized she was asking that question seriously.  I couldn’t believe what was happening.   I felt as though my eyes and ears were deceiving me. There I sat on my three-wheeled Pride mobility scooter and I was being asked if I was going to take the stairs.  She was able to look past my disability, overlook the fact that I was using a mobility scooter, and ask me the same question she probably asked other classmates all the time.  Thankfully, she had a sense of humor because  I replied, “I think I’ll take the steps today.”  Then I patted the front of my scooter and asked, as seriously as I could, “How do you think this will do on the steps?”  She said, “I’m so sorry.  I forgot!”  I explained no apology was necessary and told her how good it felt to be treated with kindness and seen as a person not a person with a disability.  We both laughed as we entered the building and climbed on the elevator.  I may not remember her name, but I’ll never forget the day she saw and treated me as an equal…the same way she would see/ treat any other classmate.  She was able to overlook my physical disability/differences.  For that brief, unexpected moment of normalcy I will always be grateful!