Note: While I am posting this on Mom’s behalf, she wrote it. No one can tell her story as well as she can.
The future for me is to hopefully get on one of the only drugs that has shown to slow the progression of this disease. It has been used in other countries for several years, but is still not approved here. The FDA has said it will be, but they have said that for two years.** It’s only being used here in studies for “compassionate use”. If you go to Canada, it is several thousand dollars a month. There are other ways to get the medication that fall into sort of a gray area for the FDA, but that’s all I’m going to say about it. I’m willing to do anything I can to slow the progression of my disease.There are also some supplements many doctors and clinics suggest may help. I am using three of them which my insurance does not cover.
There is so much more I could talk about, but now I want to say something about family and friends. NO ONE gets this far or continues on without both. My daughter set up the GoFundMe site for donations. Friends and family have been so generous and I thank you all!
I have to thank my husband of forty years for always having my back and this long journey has been no different. He is still impatient with hospitals and sitting around as most men seem to be, but I can’t fault him for that one bit. He really is my friend, the love of my life and super dependable. Everyone who meets him loves him and he is a fantastic father. I think sometimes my family would keep him over me. Thanks honey for a wonderful life so far and I know you think the words to a Cat Stevens song was written for us, “I’m lookin’ for a hard headed woman, one who’ll make me do my best….” Well, you know the rest.
My fantastic adult kids and their spouses, you have always made me proud and never let me down. You are kind and generous and loving and smart and resilient. The moments you hate the way the world works is almost always because an underdog is being treated so unfairly, or because stupidity has reared its ugly head again. So since song lyrics keep appearing I will just say, “You are my sunshine, my only sunshine…” keep singing you know it goes.
Mom and dad, you are the best parents on the planet. Words will never express how I feel. Mom, I am doing that thing people do where you take two fingers to my eyes the point to your eyes. I call it the “Eye Connection” and you know what I mean. We do not need words. We just get each other, even if it hurts sometimes.
Sisters, I am stuck in the middle with you… isn’t that a song too? When it counts the most we lock arms and nobody gets by us. I don’t need to say anymore because sister language is only understood by sisters and we always have something to say.
Friends and what I call my other kids, this is for you. I thank you all for so many memories and all the ones still to be. I have made it a point in my life to befriend only kind people and hope only kind people would befriend me. I like that we are different, yet the same and that what I just said you understand. We are all just a bit crazy.
Hey BFF (and you know who you are) fact of life: After Monday and Tuesday even the calendar says WTF, and we have said that a lot.
One final thought, as I carry on with an uncertain future, knowing this disease will probably be my fate since now I can no longer cliff dive. Winston Churchill once said, “I am ready to meet my maker. Whether my maker is prepared for the ordeal of meeting me is another matter.”
**Esbriet/Pirfenidone and another drug for the treatment of Pulmonary Fibrosis were approved by the FDA on October 15, 2014 after this was written but prior to it being published.