Posted in Center for Courageous Kids, My Life, Thankfulness, Volunteering with Pain

CCK How do you feel?

I just returned home last night from a week-long trip to a camp for children with chronic illnesses. The Center for Courageous Kids  is a medical camp in Scottsville, KY for children who cannot attend regular summer camps because of their health issues.

I must admit, five days at camp left me exhausted and in horrible pain, but it was worth it. I met a lot of amazing families. From the children living in pain…to the parents who brought them to camp…to the siblings who support them everyday in their fight against pain…to the amazing volunteers and CCK staff who make camp possible…I felt honored to spend the week with all of them.

I am so thankful CCK allowed me to volunteer as a counselor. I couldn’t be a camp counselor at any other camp because of my CRPS and gastroparesis. However, CCK has their camp and program areas designed to be totally wheelchair accessible and the camp has daily “siesta” time to go back to your room to get some rest. Without that mid-day rest time, I wouldn’t have survived the day.

Meals at the camp are served buffet style three times a day in the dining hall for campers, their families (during family retreats), and camp counselors and staff. The camp chef works with campers and their families to meet specific dietary needs when it comes to sensitive stomachs and food allergies. Each dish has a sign attached to it which lists ingredients that campers and their families may be allergic to. Snacks, such as toast, sun butter, fruit, juice, Gatorade, milk, and water are available around the clock for those who need a little snack to keep them going.

It was an amazing week at camp. Each day the children rotated between program areas horseback riding, playing music, crafting, cooking, beautifying, wood working, bowling, playing arcade games, swimming, playing in the gym, shooting bow and arrow, fishing, and boating. They also had the opportunity to participate in all camp activities such as messy games, movie night, and a stage day talent show.

I haven’t been in a canoe or boat since being diagnosed with CRPS when I was fifteen years old…22years ago. I was a bit nervous about climbing on the boat and going out on the water, but everything turned out good. My first boating experience at camp, a camper asked me to go out in a canoe with her. I had never been in a canoe before. When her dad volunteered to go with us, it was a relief for me. I knew with my pain, canoeing was going to be difficult and painful. I also knew that I didn’t know how to guide a canoe. I didn’t want to get lost at sea (LOL we were at a small camp lake, more the size of a pond) and have to be rescued by the coast guard… also known as the camp life guards. My second experience was in a pedal boat. With CRPS in my leg, I knew peddling was something I couldn’t do. I rode in the back with the camper and we let his mom and my sister pedal. Getting into and out of the boats was difficult with my limited mobility, but with the help of the program staff, I managed.

With my picc line, swimming wasn’t an option for me, so when the blue lodge had swimming as an option, I chose to volunteer in one of the other program areas where the blue lodge was allowed to go. During swimming I often ended up in woodworking and beauty shop. In the beauty shop, children not only enjoyed getting their own hair styled and sprayed with various colors of hair spray, their nails painted, and make-up applied, they also enjoyed doing the hair, nails, and make-up for adult family members and camp counselors. My sister also volunteered at camp. She returned from the pool one evening to find my dark brown hair had turned yellow and my fingernails had been painted to match. In the woodshop, I helped sand wood, located supplies, and complimented the children’s wood burning and painting skills.

For me, messy games was probably the most painful part of camp. Messy games were basically a food fight. Campers and counselors visited stations where they used shaving cream, ice cream, oatmeal pudding, etc. to see who could get the messiest. If I ever go back to volunteer again, I’ll probably sit out of messy games. The textures of the messy stuff running down my leg sent my CRPS pain into overdrive. The green lodge may have won messy games, but the blue lodge kids were named the rootin’-est, tootin’-est messy game players. I was a blue lodge counselor. Go Blue!

The theme for our week at camp was “Home on the Range.” One night we were served a themed dinner. The buffet table was transformed into a covered wagon and the room was decorated with cactus, bandannas, and western gear. Adults and children came dressed in their western gear as well. I must admit dinner was a bit scary that night. I was held at gunpoint just before dinner by a rough cowboy (one of the CCK courageous campers). We had cactus juice to drink (lime Gatorade) and cow pies (brownies), and hay stacks (rice crispy treats) for dessert.

The week ended with a camp wide viewing of a slide show they had created using photos and videos of things the children had been doing at camp. We watched the video, had lunch, and departed. We, the counselors, formed a line and cheered at the camper and their families left camp. With goodbyes, hope to see you next years, and with tears in their eyes, the campers headed back home.

The week was amazing and I’m so thankful that I was able to be a part of creating this magical moment for those courageous kids. Living with chronic pain and slow motility, I kind of understand what these children face in life. Chronic pain conditions are invisible illnesses because pain cannot be seen. The majority of people living without chronic pain don’t understand that although we look like nothing is wrong with us, we are in pain all the time. Many of us live in communities or go to school where we are the only person we know with out condition. We often feel alone and isolated. Camp allows these children a week-long experience where they get to be with other people who are like them and understand them.

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The above picture was borrowed from the camp Facebook page. The Center for Courageous Kids is a non-profit medical camp and can only continue to offer this amazing camp experience for these children with support from others. If you, my blog followers, readers, and fellow pain warriors would like to “push to open” the Center for Courageous Kids and help these courageous kids continue to have a place where they can go and be surrounded by people who understand and support them, you can make donations to the Center for Courageous Kids by following these links to visit their website or Facebook page.

This post wouldn’t be complete without recognizing TCAPP, RSDSA, The U.S. Pain Foundation, Rock Out to Knock out RSD, and Cash Express. These groups helped sponsor the pediatric pain camp at CCK. Again I’m thankful for a camp like CCK, volunteers who work tirelessly to make the camp a success, and the families who  come out and have a great camp experience.

I end, leaving you with the camp cheer.

CCK, how do you feel?

We feel so good, Uh, we feel so good! Uh

clap clap…clap clap clap… clap clap…clap clap clap… clap clap clap… clap clap clap

Woo clap uh

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Posted in Dogs, Thankfulness

Lucky

I’ve been trying to decide since Sunday, May 7, whether or not to share on my blog that my dog, Lucky, died that day. While Lucky wasn’t a registered service animal, she was my at home canine helper. For the past eleven years, she has been more of an emotional support dog than I can begin to explain. I am so thankful to have had Lucky for those eleven years. She protected me and took care of me.  After debating with myself all week, I finally decided to share this post of pictures.

The above pictures of Lucky were taken when she was just a few weeks old. Lucky was born, along with four other pups, February 28, 2006. Lucky’s mother refused to accept the runt and left her cold and stiff to die. I came to the rescue and saved Lucky from an untimely death. How can anyone not fall in love with such a cute pup? Eleven years and twenty something pounds heavier, she still thought she had to sleep with her head on my chest.

As you can see from these pictures Lucky was spoiled rotten. She had her own box of toys to play with and was allowed to sleep in the bed. She was a smart dog and could bring the toy requested. She knew the difference in a ball, a rope, and a squeaky toy. She didn’t sleep curled up at the foot of the bed like most dogs. Instead, she stretched out like a person and slept under the covers with her head on a pillow.

After four years in the house, Lucky chose to move outside. I would let her out to play and she didn’t want to come back in. I didn’t want to leave her outside, but she kept begging. So, we bought her a kennel and dog house. She loved it out there, but still liked to come back in and live in the house during cold winter and hot summer days.

Lucky liked hanging out with me. One winter I found her watching the weather. I’m not sure if she was wondering if the snow was going to be over soon or if she had a crush on the weather man. She liked to go wherever I went, even if it was just going for a ride on the stationary bike.

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Posted in #MyMightyMonth, Blogging, Thankfulness

Thank-you

Last night was a really long night.  I wasn’t able to sleep due to health issues.  Today’s post may seem a little short and boring.  It’s just that I’ve run out of energy.

Personal Prompt: Write a thank you letter to yourself. Discuss a time when you treated yourself with care.

Dear self,

Thanks for taking the time to do this blog and complete this thirty-day journaling.  By taking the time to do this, you are helping us to get to know ourselves and accept where we are in life.  I hope this blog continues to be something we focus on, even when the thirty day challenge is over.  Just being able to be yourself and not feel intimidated by your disabilities has been great.

With love,

You

Creative Prompt: You have been casted go be on a reality TV show, which show would you want to be on and why?

Okay, I must admit I had to Google reality TV because I wasn’t exactly sure what all fell into that category.  I ended up getting a very long list of TV shows, but didn’t really find one I was interested in being on.  I kind of like just being me and living my simply complicated life.

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 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!