February 29th is Rare Disease Day
There are 300 million people worldwide who have a Rare Disease. Currently there are 6 thousand of them. I live with a rare disease, in fact, two of them. I have subglottic stenosis (tracheal stenosis) and Wegeners (Granulomatatosis with Polygitiis).
I wasn’t sure what I was going to write for this article. I don’t like complaining and limiting myself to one perspective of living with a rare illness. How do I begin to share how my life has changed, how going to the doctor takes vigilance and constant advocating for myself so that I don’t end up with severe complications, or how lonely I feel living with something that medical doctors, friends, family, and even strangers I meet at the store cannot comprehend?
I’m constantly explaining why I live with a trach tube, or why I have to take chemo medications when I don’t have cancer, or why my throat keeps closing up and I require so many surgeries (148 as of now since 2009). If I let it, it would have caused me to become angry and even bitter towards others and the world. I have chosen to not live in that mindset. I have to admit there are times when it is difficult. Is it easy to accomplish this? No! Do I struggle with these feelings? Yes! Do I believe we all have a choice in how we handle it? Yes, I do! Here are some key things to keep in mind if you live with a rare illness or any illness at all:
- Forgiveness is paramount to the healing process. Forgiveness of yourself catapults you towards moving forward with making wellness a choice.
- Grieving is an ongoing process. Going through the grieving process of the life-altering changes that happens with illness will happen many times. There is no correct way or timeline for grieving that you can ask anyone else about. This is personal to you. Please allow yourself to grieve, because if you don’t you will halt healing and become bitter and angry. You may have to do this many, many times.
- Define your wellness. My illnesses are not curable. So how can I live well? Simply put, wellness is anything in daily life that helps you accomplish what your goals are. Everyone’s wellness goals will be different. For me, remembering to take my medications daily, drinking a gallon of water a day, laughing often, spend time with God every morning before I start my day, feed and brush my cat Nicholas, brush my own hair, and eating nutritiously and journaling are my wellness goals. I feel better when I reach these goals daily, when I don’t, I feel horrible.
- Movement, although, challenging it is important. I know this, I will admit that I struggle with moving my body especially when my throat is closing up. I aim to do better with this by following through. I just recently purchased a Home Track Leg Exerciser to aid me in my quest for movement. I can sit in my wheelchair while moving my legs and I hope it won’t affect my breathing that much. Find something to move your body with, there are many choices. I have started a list of things I want to try. My list includes drumming (yes there is an exercise class where you use drumming sticks and dance and drum as you go), hula hoop, and physical therapy.
- Have positive things in your life. Watch positive and encouraging things on TV, listen to music, listen to podcasts, read a book, and speak positively about yourself. It is hard to do these things when you are in pain or cannot breathe. I am a firm believer that finding small joys in your life makes healing faster. For me, my joys are snuggling with my cat, listening to podcasts on all kinds of subjects, writing research articles for Wellness Works NW, and reading great stories of strong men and women who live well. There are so many great things. I limit my news and zoom past negative political posts because they are dangerous to my health.
Wellness requires a plan; the who, what, when, where and how of making Wellness Lifestyle Choices. If you do not have a Wellness Plan I know a wonderful lady, Karen Clemenson, who will be happy to help you come up with a plan and work with you through the kinks so you can be successful.
Here are some links I would like to share with you:
- RareDiseaseDay.org
- What is Rare Disease? by Eurordis – Rare Disease Europe Staff
- Related Articles
Jamie Holloway lives in the Portland, Oregon area. Since October 2011 she has been sharing her Journey Toward Health and Wellness with Vasculitis through her blog at JamieChasesButterflies.com. As most of her articles will be about Men’s Health, Jamie intends to write her articles as though she was sharing important information with her brother, nephews and friends. We hope you are as inspired as we are with the raw candor Jamie uses in her writing. If you would like to help support Jamie’s writing efforts please Donate now.
