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 Chronic Illness, Complex Regional Pain Syndrome / Reflex Sympathetic Dystrophy, Gastroparesis, Inspiration, Invisible Illnesses, Rare Diseases

Humor on a bad day…

The  past couple of days have been rough with my complex regional pain syndrome and gastroparesis. I’ve been more nauseated. I’ve vomited more than common. I’ve been in lots of pain. I’m exhausted. I’m not looking for pity… just stating the facts. When faced with these not so good days… which I’m forced to deal with on a weekly basis, I have to make a choice… do I lay in bed and cry because I feel miserable or do I find something to do to keep my mind busy. I’m not ashamed to admit that there are days I cry because I don’t feel like doing anything else. Some days I just sleep because I don’t have the energy to do anything else. However, some days I don’t feel like getting out of bed so I spend the day in bed with my tablet searching for inspiration. It never fails that Pinterest has something I’ve never seen before that brings a smile to my face.

Living with gastroparesis, I’m constantly having to defend my choice not to eat when I’m at church dinners, family picnics, and other outings where food is the main attraction. I know that if I eat certain foods, that more than likely I’m going to vomit. Many times, people want to know why I am not eating. I explain gastroparesis in as simple terms as possible and with as little detail as possible. While people are eating isn’t the best time to explain that I vomit nonstop when I eat the wrong foods or wrong amounts. While they are eating isn’t the best time for me to eat and vomit either. That makes for an award situation. However, some people persist and want to know more. So, I’ve grown tired of making the situation seem less complicated than it is. For a long time I blew my gastroparesis off as no bog deal, even though I knew it was. Now, when people persist, I give the details. They don’t usually ask twice. 😀 So, I explain it’s not that I don’t want to eat. When I eat fatty foods, fresh fruits and vegetables, meats, and food high in fiber, I vomit. Then I usually get a look of pity, which I completely despise, and am asked, “So what do you eat?” I found this picture on Pinterest today and while it may be referring to a gluten-free diet, I feel it portrays my gastroparesis diet perfectly. I don’t know from one day to the next what I can eat. A food that may be safe today may make me sick tomorrow. That is how my life works and I’ve adapted. I carry a roll of trash bags at all times because I never know what the day is going to hold.

#Hashimoto's #Autoimmune_Disease — Living Naturally Autoimmune

This next sign really made me smile. I was diagnosed with complex regional pain syndrome when I was fifteen years old.  I started having issues with gastroparesis in my early twenties, but wasn’t diagnosed until I was in my thirties. Many times, I’ve been told I’m too young to have the problems I’m having. For those who have told me that… this sign is for you. Unfortunately chronic illness does not discriminate based on age.

At 41 the doctor said you have the neck of a 70 year old! True story. Chronic pain doesn't end. I'm 55 and still disabled.
For those of you out there that are also facing chronic illness this one’s for you. While many people don’t understand what we are going through, we have to stick together and
hang in there. On bad days we need to reach out to each other and help each other along. On good days, we need to educate the world and bring awareness to invisible, rare, and chronic illnesses.
Chronic Illness - ones that aren't known by everyone or at all.