Rare Disease Day: Now I’m Rare poster
Today is Leap Year Day, and it’s also Rare Disease Day. Since we have an extra day this year, why not raise awareness for infants, children, teens, young adults, and adult-adults with misunderstood, incurable, difficult to treat illnesses around the world? Thanks all.
I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 15 years living with chronic pain,
patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on.
Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)
I love this!!
I’m so glad! There are so many kids with rare diseases internationally on the rare diseases website I just wanted to do some small thing for them. Hugs friend xo