I found a FaceBook group called Let’s Chat About FMD a couple of weeks ago. I thought maybe it would be an informative group since there is not a tremendous amount of information on this disease and the symptoms are different for many people. I have said before that the disease that gets the most money gets the most research; well you can imagine that a disease that affects MOSTLY WOMEN and only around 2% of the population, there isn’t much of a push to research nor is it a priority with so few patients. I have, however, found out that I am not a hypochondriac, or totally mental, and that I am not dreaming that I feel the way I do. Some days I think that I am nothing but a complainer, a drain on the family dynamic, or that I am imagining that I hear the never ending WHOOSH sound in my ears that can drive me batty if I listen to it. It doesn’t even whoosh with my heartbeat, it has a WHOOSH all it’s own! I also know that it frustrates my family to hear the complaining so I really do try to shut up!! This forum makes the complaining alright!!
It has been a true help to find 1,400 other people across the world that have the same symptoms! I don’t feel as bad for feeling bad!! What a deal!! I feel like I am normal in an abnormal group! What a gift to find normality in the abnormal!! Twenty years ago I would be land locked in the middle of Kansas feeling like the only person in the world that has to deal with this stuff! For all of the complaints you hear about social media, there is a place for it and it has become a life line to the outside world…albeit a world of SCAD, dissections, migraines, high blood pressure, medication, surgeries, aneurysms, kidney failure, transplants, family pressures, health insurance issues, disability, inability, limitations and life. It is so comforting to know I am not alone. I am not alone!!! I appreciate so very much all of the stories and life events that form who we are and how we cope. Life is often a rough journey without the added bonus of the bus that came out of nowhere and leveled you. It is made bearable by friends, family and people who experience the same thing. I am forever thankful for my support system and now I am completely humbled by my brothers and sisters fighting this dumb disease that appears like a thief in the night who just won’t leave. It keeps returning to take something else! There is strength in numbers and I like the idea of having 1,400 people on the same side!! I have felt what you feel, I wake every morning wondering if today is the day or if I am just going to keep on keepin on! Some days the keepin on scares me and some days the end seems like a relief, but then I am bounced off my pity pot and most often times can find something to give thanks about!! That is my journey. One step forward and then the bungee cord snaps me back!
Here’s to a better 2019!! I would say, “here’s to health” but most of us have forgotten what that is!! Lol!!!
until then….stay focused on the breathing..