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
2 thoughts on “Living Life Rare”
Thank you for sharing your thoughts!!! I am a 42 yr old guy with a wife and 3 kids, the youngest being 3 yrs old and I was recently diagnosed with FM after a biopsy in February. Since then I’ve had a 2nd biopsy and the next step is going to Mayo Clinic on April 16th.
I started a new job last week and had to fight really hard to make it through each day with all of the training meetings and tours of departments. After an exhausting week, yesterday (Saturday) was one of those days that you mention. It was 6pm before I had the energy to get out of bed. And if it wasn’t for my wife pushing me, I probably would not have moved all day.
Sleep less nights are a norm for me over the past few months. My symptoms became concerning enough for me to do something back in late October and early November and it’s been a roller coaster since then. Tonight I needed more perspective and needed to hear from someone who can relate to the pain, fatigue, exhaustion and anxiety of not knowing what the future holds.
Reading this and watching the video brought me to tears. I pray everyday for the same 3 things repeatedly. First is giving thanks for everything and everyone that has had a positive impact on my life. I thank God for all he has blessed me with. Second is that I ask that he continue to look over all of my family and friends. I need to add for those that are suffering too now that I think about it. The last thing I do is ask that I have the energy and strength to be productive for my family and to be a better husband to my wife. The last part is the hardest to see come to fruition.
I hope that God will continue to bless you and your family and I thank you for your strength and courage to share your experiences so that it can help someone like me who is just starting the fight.
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Hi Greg! Thank you for your kind words! It definitely is hard to share my story, especially the bad days but I do want others to know they are not alone. This journey has been extremely difficult but if we can just hold on to that hope that someday it will be better, then that hope can get us through some of the darker days! Thank you for sharing part of your story as well and I am sorry that you have been diagnosed with fm. I go to Iowa city for all of my appointments but I have heard wonderful things about Mayo so you are in good hands and I will be praying you get some encouraging news at your appointment! If you are on Facebook there are a few support groups for people with FM. They are full of knowledge and support and the people have very inspiring stories! Take care and good luck at Mayo!