Rhabdomyosarcoma

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    Jenna Combs

    Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy: How I Live With Chronic Pain

    Being labeled as “disabled” really changed my world. It gave me a new perspective I never thought I would have at just 22 years old. I have never accepted my pain as my life. I still can’t, even almost eight years later. Putting into words how I am disabled because of chronic pain wrecks the most delicate part of my life: my heart. I was just 5 years old when my parent’s world stopped turning, because I had been diagnosed with rhabdomyosarcoma. I have seen the worlds of others stop turning, but I never thought my world would cease. I have what is most commonly known as complex regional pain syndrome (CRPS) from my waist down, although when I was diagnosed, it was in the time when some doctors only knew it by reflex sympathetic dystrophy (RSD). Telling people that I had something that would never be gone, or never be better enough for me to remain active, is one of the hardest things I have to do, every single day. The curiosity of others can really darken my days, even though most people ask out of kindness. When people ask, I just have to pretend I am fine. There’s a mask I wear each day. Sometimes the pain is so severe my mask is unable to hide my pain. Getting married to the love of my life in 2015 was a complete joy. It was the moment in my life when my world started turning again. I knew I had a man who I could be honest with, which is sometimes better than any medication I have to take. He never makes me feel bad because I have to rest, or have to take extra Tylenol to make it through. He builds me up, loves me through my pain, and most important on my list, he loves me wholly even with my RSD. Getting married at 28 was a blessing, by far. I waited to find a man who would love all of me. My RSD loves to get in the way of my life, even to this day. I try to fight it, to keep winning over my pain, but with each day, it gets harder and harder. Most days while the kids are at school and my husband is at work, I am home crying or staying as still as possible to try to get rid of the pain. On the days I feel “good,” I am home cleaning or doing laundry. The problem with RSD is that when you have a low pain day, you can function higher than you normally can. On those days I overdo it. On those days, it is without fail that I set myself back another 10 steps. It means another three days of sleeping with extra meds while the house is quiet, another Epsom salt bath (sometimes four in a single day), or another day of not being able to breathe because of the astronomical pain. Along with RSD, I deal with severe anxiety and depression. No one told me at age 22 that I would get diagnosed with anxiety and depression along with RSD. Each day, my world can either turn normally, slowly, or not at all. Each day I wake up covered with darkness until I know how my world will turn. Each day I struggle with chronic pain, severe anxiety, and depression. Each day I struggle to call this my life. Each day I pray my world will at least turn a little, because when my world stops turning, my heart suffers the most. There are many pieces of advice out on the internet, and people with chronic pain will give you all kinds of advice. I’ve even had a pain management doctor give me advice. The thing I learned is that some of the advice works for me, and some of it doesn’t. Being able to try new things, or knowing that some advice won’t fit my life is critical. No one will know your body better than you do! It is imperative to know what there is to try, but to also use your own body as a guide! We all have chronic pain; however, each body reacts differently. Coping with chronic pain, even seven-and-a-half years later, is a daily task. Some days are easier, but some days are extremely hard. I’ve found that I hold tightly to the things that make me feel better. I have two dogs that always know when my pain is high, so they stay extra close and cuddle with me. I’ve found that coloring keeps my mind occupied and can help redirect my mind from focusing on the pain. I have a wonderful husband who knows there are things I need to do each day, sometimes when I’m home alone.  Coping is harder some days than others, but it also keeps me going. I don’t take my life day by day. I have to take my life minute by minute. I keep telling myself that if I just made it through that last minute, I can make it through another minute. There’s a lot of minutes each day, but I know I need to break it down so I can manage to cope. When I lost my ability to dance two years ago, I thought my world ended. However, just recently, I have learned other things I can physically do to help me stay as active as possible. There is no end in sight with chronic pain, but I choose to stay strong, focus on the things I can do, and find what works for me. I have lost a lot with chronic pain, but I have gained a lot because of it. I challenge each person I know to be kind to strangers, because you never know what that person sees, feels or faces. The monsters I face make my world a completely different place than I ever imagined my world would be at 29 years old. If we all grow together in life, we can make sure the worlds of all will keep turning, no matter what we all face. I just want our worlds to turn each day. The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    How I Became a Top Model With 2 Ostomy Bags

    At the age of 2.5 years old, I developed a rare form of vaginal cancer called rhabdomyosarcoma. Doctors thought I would not live to celebrate my third birthday. Since the age of 3 years old, I have had a permanent colostomy and urostomy, which aids my bladder and bowel functions and causes me to wear ostomy bags. I spent all my childhood and most of my adolescent years at Memorial Sloan Kettering Cancer Center in New York fighting this disease and all that came after, especially my ostomy bags. My life was a journey of unexpected turns. One day I was walking in the mall, and a gentlemen came to me with a brochure about taking modeling classes. He asked if I would be interested in attending an open house. It was so memorable to me because this was a person who knew nothing about my medical background, but saw my beauty. Jearlean modeling. As I was reading the brochure I said, “There is no way I can do this with an ostomy bag.” I thought about it and I attended the open house. I listened very attentively, but I still wondered, can I do this? Will they understand? Will I be scared? How will I explain my ostomy bags? How will I model with ostomy bags? Well, I stepped out on faith and begin classes to learn how to be a model. Yes, I was scared in the beginning. I worked hard, paid attention and practiced. The more I attended my modeling classes, the more it became a passion for me. My confidence began to soar, and my skills as a runway model grew beyond my expectations. My instructors were now ready for me to participate in runway shows. Again, how will I explain my ostomy bags? Jearlean modeling. At this point I had to get up the courage to explain everything to my modeling director, including my ostomy bags. To my surprise, he understood and told me my talents were beyond my ostomy bags. He explained I had to look beyond my circumstances and see the inner beauty and confidence. I advanced in class and was on my way to a modeling career. I still had to be cautious of what I was wearing because of my bags. Well, I found my trick to keep those bags tight to my body: a girdle, which keeps them firmly in place. Since I was doing fashion shows and interacting with designers, I knew I had to explain why I was not able to wear certain garments, such as two-piece bathing suits or any garments revealing my midriff. Well, here was my test. Would they understand? They did. They loved my runway walk. Not only did I become a top runway model in my state, but a top editorial print model as well. We cannot predict what life will bring us. But more importantly, we cannot allow situations or circumstances to dictate our future. I am living a full and vibrant life. Jearlean modeling. The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    The Epiphany That Helped Me When My Son Was Treated for Cancer

    One day during the 14 months that our teenage son, Thomas, was being treated for a recurrence of Rhabdomyosarcoma, a very rare and aggressive pediatric cancer, I had an epiphany. It was an epiphany on the struggle to stay in the present in order to enjoy the richness that each moment of life brings, even when the present is supremely difficult. The thought I had was, living in the present is not for the weak. It is not for the weak because it is scary and hard to do when the present itself is sad, traumatizing and painful. Living in the present, in the Now, requires patience, courage and fortitude. In life, goodness and peace may come, but sometimes heart-wrenching difficulties come as well. That is life. The reality is, we only have the now, this one second, and then the next, and the next, etc. One second into the future does not exist until it exists… up until then, it is not our reality. The past is full of memories, but it is not our reality either. We can learn from the past and take the good from the past, but the past is not our reality. Reality is right. This. Second. A nd that is how I somehow managed to survive and love every second I had fighting to save Thomas. I could only do that when I stayed in each precise moment. I still had to prepare and plan for the future, but emotionally I had to force myself to stay in the present and try, try, try to detach myself from the sadness of the past and the worries of the future. Focusing on the love in each moment as much as possible is how my husband and I strived to keep our family intact. We are not perfect at this skill… and it is a skill; it must be practiced. It is a skill I still must continually work on. But I truly believe in it, believe in the value of it, believe in the peace that it brings and believe in how completely enriching it is to really be present. It is not about forcing yourself to be giddy and joyful in every moment. That is not the point. The point is that I believe many of the darkest moments of the present offer a kernel of goodness, of insight, of the Divine . When taken cumulatively, I believe those golden nuggets of successive “moments in the now” add up to a beautiful, wonderful and blessed life well and truly lived. The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here .

    Taylor Swift Donated $50,000 to Backup Dancer's Nephew Who Has Cancer

    Taylor Swift is at it again. After one of her backup dancers, Kim “Toshi” Davidson, shared a photo on Instagram of his 13-month-old nephew who has cancer, Swift swooped in and donated $50,000 to little Ayden’s GoFundMe page. Via Instagram Beneath the generous donation, which she made on October 1, Swift wrote the following. “Baby Ayden, I’m lucky enough to perform with your uncle Toshi on tour. All of us are praying for you and your mama and sending so much love your way. Love, Taylor.” Davidson posted a picture of Swift’s donation to Instagram along with a message of thanks. Via Instagram “So I get off the plane in Toronto and this is the first thing I see… Taylor Swift is an angel and my family and I can’t thank her enough. She is such an incredible human being. This will help Lil Toshi in this time of need. Let’s pray for him to beat this. This unexpected gift is truly a blessing.” Via Instagram This isn’t the first time the superstar has done something this generous. In July Swift donated $50,000 to a sick fan who missed her show. In fact, Swift has donated so much money on GoFundMe that the site had to increase its donation limit, according to GoFundMe CEO Rob Solomon. Swift has given more than any other donor in GoFundMe history.