Today is a very special day for me, because 21 years ago today I was diagnosed with an extremely rare life-threatening disease, Fibrosing Mediastinitis (aka Mediastinal Fibrosis). At the time of diagnosis, fewer than 300 people had ever been diagnosed with FM/MF. I will never forget the post-surgery conference when the surgeon said, "The bad news is you don't have cancer - if it was cancer there would be hope. With this disease there isn't any hope because everyone dies from it, usually in their 30's or 40's."
Hello?? I was 36 & he was telling me I had no hope? That just doesn't work for me! At a follow-up meeting I asked the pulmonologist what I could do. His response, "Nita, go home & get your affairs in order." Although he was telling me I was going to die soon, when I asked for further information on the disease he said there had been very little written in medical journals & what he could find was written in "medicalese" that patients wouldn't understand, so he didn't think it was necessary for me to have it. What's a patient to do? Get a second opinion!
Determined not to let one man dictate whether or not I would survive, I contacted the top ten medical centers in the U.S. asking for referrals. I was referred to the leading authority on the disease, James E. Loyd, Pulmonary & Critical Care Medicine, Vanderbilt University Medical Center, Nashville, TN.
Jim gave me hope & told me that he had one patient who had battled the disease for 20+ years & was still doing well. Sure, others had lost the battle, but the majority of his patients were still breathing! Although there is currently no treatment for my disease, Jim confirmed my belief that as long as there is breath there is hope.
The LO features my VUMC heroes: Drs. James Loyd & Tom Doyle. Together they made a tremendous impact on my life & I will forever be grateful to them. The LO was created by the extremely talented Jan Ring for a Scrap My Pics challenge I held October 2008. I am blessed that Jan has become a member of my new Creative Team. Isn't the page marvelous? She did the incredible WordArt using Elements. Here's what Jan had to say about the layout:
"Nita’s story is one of courage and survival. I used excerpts from her full story in the layout. The strands of the story represent the fibres, and the hard to interpret, chaotic arrangement of them represents the disease itself."
CREDITS: Deep Purple Dreams (paper & edging) - Digi-Scrap Princess / Nita, Fall Flurry 2 (flourish) - Sandy Collins
I don't know what the future holds, but I do know that I will not go out quietly. We all have something to survive, whether it is my friend & fellow-designer Nancy who has survived breast cancer, my Mother, a 28-yr. colon cancer survivor, or my friend who survived a near-fatal auto accident. Perhaps you aren't fighting a serious disease, but with the current economic status, you may be trying to survive cutbacks & layoffs. When faced with a crisis, it's OK to cry & want to give up. It happens to all of us. Allow yourself an occasional "woe-is-me" day, then shake off the despair & go back into survival mode.
We may lose all our possessions, but after we get over grieving period, we realize they are only "things" & believe it or not, we can survive without them. Really we can! I know, because after 21 years of medical expenses, losing my IT career due to chronic illnesses & a failed marriage, I have nothing left. Nothing except the things that matter most - my dignity, family, friends & life. We sometimes feel that if we lose our careers, we lose our identity. NOT TRUE! When you face death, you won't care about your career or all the things you've collected during your lifetime. You are defined by what's inside & that's something that can't be bought.
As long as there is breath, there is hope. None of us know what tomorrow holds for us, but there is always today.
Live, love, be happy & don't forget to breathe!
Hugs from The Princess
