Sick...ick!

Many of us have been ill this winter with colds, the flu, or stomach upset. I, however, have been fighting a complete flare up of gastroparesis - the paralysis of my digestive system. This is not a fun disease. It's maddening!

While I've managed it for nearly six years now with diet, medication for digestive motility, and laxatives (yeah, it ain't pretty), this latest bout came out of the blue - smacked me again in the back side of my head. I never expect it or see warning signs.

None of us with auto-immune disease are clairvoyant; that is, we can never predict when something is going to go awry in our bodies. So we get frustrated and isolated in our pain and distress. We triage ourselves to address the worst ailment first. When I had cancer, that came first and the diagnosis at the same time of Lupus came second even though it caused a lot of complications with my cancer treatment.

"I'm a professional patient," I tell the doctors and nurses in the emergency rooms that I frequent. I tell them what I need (pain meds, please!), what tests need to be run (xrays and/or CT scan), and then I'm given the option to be admitted or not. I usually choose not. This time around, perhaps I should have stayed.

Instead I took the treatments home (didn't work), made numerous calls to my gastroenterologist in New York City (because the local docs say my condition is beyond their area of expertise), adjusted meds and diet, and I am coasting along until invasive testing on Friday the 13th. Harrumph. I'm not superstitious, but really?

I know this is just one more hurdle to hurdle; one more setback from which I will recover. Nevertheless, there is always fear. Chronically ill folks live with fear all their lives - the not knowing is the worst of all. But, somehow, we overcome.

Glory Days

Glory is fleeting because there is always hard work left to be done. While my book won an impressive award as a Next Generation Indie Book Awards Finalist and I was feted and celebrated over several days last week at Book Expo America including a gala reception at The Harvard Club and a one-hour autographing session in the Headline Books booth, I am still reeling from all the events and experiences.

And I'm pretty sure trekking around Manhattan and the Jacob Javits Center carrying loads of books and materials threw me into a Lupus flare. On the eighth hour of the second day, I knelt down to re-arrange my bag and literally could not rise up! I took a deep breath and prayed my knees would do it just one more time. They did and I knew it was time for me to leave. Taxi!

The brightest spot came when one potential publisher read my book overnight and invited me back to her booth the following day. She gave me constructive criticism and I agreed with everything she had to say. So I will be revising and re-writing for awhile to finish this journey I began almost five years ago. I believe I will have a real publisher when I finish the work and I am highly impressed with her brand.

Other 'publishers' wanted me to pay for upfront costs such as reformatting, printing and marketing. There is no such thing as an advance anymore unless you are a well-known figure of some celebrity or established author. I politely declined their 'offers.'

It's a slippery road from writing a story that many have said is important and worthwhile for a large population of readers and I will persevere. As my prospective publisher said, I'm "this close" to a fine, finished product. She held her fingers one inch apart.

There were many other highlights including enjoying lunch with a costumed pirate one day at a shared table and learning that his day job is as caretaker of a now-deceased famous author's home on a beach in New Jersey. I met with a lovely British publisher who was eminently professional and kind even though he regretfully told me my book would not fit into his line. And on day two, I was privileged to sit with a publisher of military books. We had a fascinating conversation; one which ended with him describing his passion to me - spending time in one of eight abandoned beach cottages somewhere in Cape Cod. He won the yearly lottery to enjoy his week in September with no electricity or creature comforts and he was thrilled and animated as he spoke of it. I was enthralled.

I reconnected with an old work colleague who has authored several best-selling books and one that was made into a movie. It was wonderful to see Lorenzo Carcaterra and congratulate him on his successes. I was also happy to meet and chat with Steven "Stevie D." Dupin, a Los Angeles-based comedian and writer whose book also debuted at this year's BEA. Since it's one about fighting cancer and winning the war, we traded books and stories and he is an extremely likable Kentucky-born husband and father.

I shared a one cab with a publisher's representative who gave me a lead. I walked miles to visit each exhibitor's booth that I had pre-selected from the more than 1000 exhibitors there. I was handed free books that just added to my already-cumbersome load. Although I feel that I found 'the one,' I will be following up with many more over the next couple of weeks.

It was an amazing experience and one I will treasure forever. I'm 'this close' and yet it still seems so far away. Thank you to all who have supported my journey running backwards through cancer, Lupus and chronic illness. And please remember to learn about The ACE Study and how we can educate physicians how to interrupt disease in adults who have been maltreated as children. It's my mission and I'm sticking to it.