As many of you know, today is Rare Disease Day! There are approximately 7,000 rare diseases with no cures and very limited treatment options. 1 in 10 people are living with a rare disease, making that around 30 million people! We really are not so rare after all!
The last day of February is a day dedicated to raising awareness for rare diseases as well as giving individuals a chance to share their stories as to how living with a rare disease affects them and their families.
Of course I am one of the rare ones but unfortunately I was not able to make it to a Rare Disease Day event today so figured I would share my story again on a day that has come to mean so much to me!
My life has definitely not been easy. For me, living rare means chronic pain, pure exhaustion, biopsies, I’ve had a thoracotomy, eight stents in my chest, six eye surgeries, two back surgeries, female issue surgeries, never ending tests, scans, lab work, countless doctor appointments and a ridiculous amount of angioplasty procedures…all of which I will continue to go through on a routine basis for the rest of my life because there is no cure for Fibrosing Mediastinitis. I will always have symptoms…some days feeling symptom free…and other days those symptoms will keep me in bed all day.
But, in the midst of all of the testing and recovering and pain and fatigue…I have also found hope. Living rare also means trusting in God, developing more meaningful relationships with my loved ones, enjoying the little things, appreciating the many blessings in every day life that so many tend to overlook.
Living rare has in fact taught me how to live life…how to live in the moment and it has opened my eyes to what truly is important!!
And of course I can’t share my story without mentioning my husband who has been by my side through it all. I met Tim 10 days after I got my first set of stents. One doctor finally had helped me and told me to go live my life after so many other doctors had told me to make arrangements for my one daughter at the time because I was dying. Meeting Tim at that moment was not a coincidence.
I could not have gotten through the last several years without him. No matter what we have faced he has always been able to make me laugh through it all. So glad to be pushing through this crazy life with him…together!💕
So for Rare Disease Day, if you have 9 minutes to spare😜…I have attached a link for you to get a more intimate look into our rare, yet beautiful life. #godisgood #fightforacure