I have written this post at least five times—each version very different from the others—and never found the right tone as my own life did the roller-coaster thing that happens when you get a shocking diagnosis.
Today, however, I’m launching on in. Sometimes you just have to do that—not worry if you’ve said exactly what you meant. If I don’t say anything, it will be even more inaccurate than if I misstate a thought. Love unspoken sounds like indifference, a friend once told me. Some of you already know about this. Others are in the dark. It’s time to give an update, long overdue.
It all started with Welcome to Medicare. It was August 8—about six months after I actually turned sixty-five. It took that long because I had to wait to get an appointment, and I had also dragged my feet because I expected a clean bill of health and a happy farewell till next year. The doctor prescribed some routine blood work and a bone density scan to establish a baseline for subsequent years.
The next visit changed my future. Immune system was low. Osteoporosis was severe. More lab tests and more visits brought the need for me to see a rheumatologist to see if I did, indeed, have scleroderma.
My friend Dan Worley was alarmed. By the time I returned home, he had looked it up on the internet. “You don’t want this disease,” he said with some force, telling me some of the details. I wasn’t worried. I was sure I didn’t have it. No bumps on my skin. No joint pains. No trouble digesting. A little shortness of breath, but that was from anxiety. Some annoying, persistent fatigue, but that was from ten years of caregiving and the grief of losing my husband and my father less than two years before. A little difficulty swallowing, but my dad had the same problem. He said he had a narrow throat. I figured I had inherited it from him. And sometimes my fingertips went white and numb in the cold, but three years ago when I went to ER in a panic, the young doctor told me it was a syndrome called Raynaud’s. She said to warm my fingers under hot water and not to worry; it was harmless and meant nothing.
On November 18, Dr. Hoefling sweetly and gently, but thoroughly descimated my cavalier confidence that I had been misdiagnosed. Raynaud’s, difficulty swallowing, shortness of breath, fatigue—they were all part of the systemic version of scleroderma. He ordered tests: one for pulmonary function, an echo gram for the heart, and eleven pages of lab tests to be taken one week before our next visit. He told me the tests would establish a baseline so he could monitor the progress and speed of the disease, which had no treatment and was incurable, and to see him in two months.
On November 20, I took the hour-long pulmonary function test. It did not go well. And now I’m supposed to wait two months to find out how bad the disease has gotten? I don’t think so!
My original doctor had left for another job, so I went to see Eileen, a PA (Physician’s Assistant) who understood my plight and referred me to Dr. Tony, a lung specialist. More waiting. I wouldn’t be able to see him till 2013. Nobody seemed in a hurry. Maybe that’s because it was the holiday season and everyone was on Christmas vacation. Or maybe the lack of urgency reflected the incurable nature of the disease, or that it can be very slow moving. All tests, all visits, were simply to monitor, gauge speed, predict time left and what kind of quality of life I could expect–professional help preparing me for the inevitable, inexorable, suffocating death.
Don’t think for a minute the long intervals between doctor visits were spent chewing my nails or blithely doing business as usual. Dan wouldn’t let me resume life that way. He kept confronting me with the seriousness of the disease and exploring avenues of healing until I abandoned my denial, and, with the help of friends and family, began praying for guidance for a solution. Dan was relentless, worrying, stressing, researching, reading things to me. Finally, we agreed that Gerson Therapy, a form of healing by concentrated nutrition and detoxification, was the best protocol. It is a lot of work, an everyday two-year commitment, and it meant hours of labor a day, but he told me he wanted to do it. He said, “If someone told me, ‘You can save your friend’s life, but you’ll have to do two years of hard labor,’ I would say yes, and this isn’t going to be hard labor.” It was a big commitment for me too, but by then I was alarmed enough about having a disease that could suddenly bolt, turn my organs solid, and tighten my hands and face. We started full-on Gerson Therapy on December 1st.
On January 8, Dr. Tony told me the pulmonary function test showed my lung function was down by 40%. He ordered a CT scan of my lungs. Since I was already there at the hospital complex, I had the lab tests done the same day.
One week later, I had the CT scan. The day after that, I sat nervously in Dr. Hofeling’s exam room awaiting the results of all the tests that had been done over the past two months. I was braced for bad news.
This is the bottom line of what Dr. Hoefling said, “Whatever you’re doing, keep doing it.”
The CT scan came back with absolutely no evidence of scleroderma scarring (or any other damage) in my lungs. No sign even of the pleurisy and pneumonia that nearly took my life in the late 1980s, or the bronchitis that used to flatten me off and on throughout my life. In fact, all of my organs were normal in function. I still had scleroderma, but very few symptoms. Dr. Hoefling said he thought I would have only a mild case, but to keep a watch on my fingertips, which could develop sores that would not heal.
How could that be?
Between the pulmonary function test and the CT scan were many expressions of concern and prayers from loving friends and family, and the Sunday before the scan, my pastor invited us to come for healing blessing. He anointed me with oil and prayed.
Dear Ones, every time I saw a doctor over the past few months (and there were a lot of trips thereof), I got bad news—shockingly horrible bad news. On January 16, 2013, I fully expected to get the worst. Instead, I got the news that my lungs were clear, my organs were clear, and I was clear to go on with my life.
Dan and I are still doing Gerson, because, as I said, I still have scleroderma and need to protect myself, or better yet, get rid of it and the osteoporosis altogether, but we both feel released to think in terms of living instead of teetering on the brink of a vicious, downhill slide. How does that manifest in real life? I’m writing again. Eternal River, Volume III is flowing from my fingers with new insight and joy. I’m painting shirts with happy, innovative designs. Yesterday I did three shirts and a tote. I’m making jewelry again—ten pieces since I got the news just over a week ago. And I have ideas for posts to inspire and encourage you as you face your own troubling diagnoses and disrupted futures. I have so many things to do and share.
Dan’s release from worry manifests in his energetic return to mixing my album. He’s working on his own projects as well, even though there is so little time between all the prep for my Gerson Therapy. It’s astounding what you can do with a few minutes when your heart and mind are free.
Today is my birthday. I am 66 years old. It makes me think of Route 66. People used to cruise it for the ride, not just so they could get somewhere fast. I’m learning to do that in my life, and I must say that I am grateful for the scleroderma that jolted me out of my driven, headlong rush to whatever, never stopping to savor the day, listen to my body, or appreciate another sweet, new breath.
I have much to tell you. I expect to post a lot this year.
Carolyn, Hedy & Hope