Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity? The stay-cation is a daily event. How do you slip in some fun without overdoing it? Where do you find the stamina and the money? Our money goes to bills, organic food and supplements. Health first!
In 2012 my acromegaly broke through the medication. I had had surgery five years earlier and until, four years later, I was well maintained. It took dose changes, at three month intervals, to decide this isn’t working. I agreed it was time for radiation. 6 weeks of daily treatments that started in September of 2012.
Radiating your pituitary is not something to take lightly but I already knew the answer and it was time to begin…
In my life of illness I’ve met some very generous alternative therapists and aestheticians. They’ve helped with pricing and gifting on massage, rolfing, acupuncture, laser hair removal and facials but this one was out of the blue. A fellow client and friend sent me a short message.
“You have a free weekend at the cabin waiting for you when you’re up for it.” From our South Eastern Coastal home in North Carolina to the farthest most Western part of North Carolina in the Blue Ridge Mountains was an 8 Hour drive. The year after radiation was hellish on my immune system and pain level. An 8 Hour drive for a weekend didn’t have recovery time built in. We didn’t use our weekend. So when the next summer rolled around I received a message… “your weekend is now a free week.” Holy cow! Really?!
Summer 2014 we moved. My husband sold his gym and found a corporate job near my doctors. The monthly, 3 1/2 hour drive, hotel stays and doctors’ appointments for nine years got really, really old. Our move to Central-ish North Carolina got us closer to the cabin.
In August 2014 we took our first trip to Murphy, North Carolina to stay at the Bumblebee Hideaway! It was an amazing blessing gifted to us. A cozy cabin in the mountains. We found a wonderful, quiet, practically our very own mountain lake, and boat rental on Lake Hiwassee.
To me and Paul this is heaven on earth. All is right with the world, no stress, no illness — just bliss.
We have since been back two more times. Once this summer and once this past weekend. We’ll be planning another trip soon!
Cindy and Ken gave us so many gifts wrapped in one. Their kindness and generosity will always be felt. We had a safe and cozy place to stay which is incredibly important when you’re chronically ill. It was a gift and no added tax. It was a vacation with exploration-all things life with rare disease and chronic illness steals away all too quickly. They gave us memories and joy. I could go on but I think you understand my grateful heart.
~Kara LaFrance
