Multiple Sclerosis, Melanoma and More

By Terry Crawford Palardy

Multiple Sclerosis, an Enigma was the first volume of the story of my unexpected diagnosis of RRMS (relapsing remitting multiple sclerosis) and the nightly injections that contributed to the end of my career. Told in first person point of view, the stories quickly engaged readers who had experienced their own unexpected disappointments in life.
Multiple Sclerosis, Melanoma and More is part 2 of that story. When, in the first book, I stopped the prescribed treatment after taking early retirement, or what we might call "medical retirement," things began to improve in my health and so in my outlook on life. But within a year, it was suggested that I see a dermatologist, and malignant melanoma was diagnosed. The fears and self-doubt and depression returned with a vengeance. But the strength that I had found with my husband's help was again there to be found. Readers of the first book wanted to know more about our life and our goal of reaching "happily ever after." This book follows me through another year of medical misunderstandings, misperceptions, and mishaps. It will not be the final word ... there will be more ahead.

• Language: English
• Publisher: Terry Crawford Palardy
• Release date: Jul 18, 2013
• ISBN: 9781301556885

Terry Crawford Palardy

Retired public school teacher, 30 years, Andover MAPast Columnist, Phi Kappa Phi Forum 2000 - 2006Current Sole Proprietor, Terry's Thoughts and Threads, Quilters' Quarters

Book preview

Prologue

Reminiscing: Adventures of an Author.

Multiple Sclerosis, an Enigma was a memoir: part journal and part love story. The tale of a woman diagnosed unexpectedly with a complicated answer to a simple question, the book generated quite a following within a small segment of Facebook posters. I'd written it, chapter by chapter, at FanStory, receiving almost immediate feedback (which any teacher can validate as incredibly important to developing writers) and encouragement to keep writing, and to tell more.

When the story reached the present date, I then crafted it into a credible book. It was self-published at CreateSpace.com, where I had dabbled in creating books by gathering up years of my poems and putting them into print. The manuscript, now in Word Document form, was ready for paperback printing. I had a lot of fun creating my cover with CreateSpace's software and images. When readers started to ask for a Kindle version, I had the book formatted for e-book publishing through a Smashwords.com link, for very little money (less than forty dollars.) It seemed as though a whole new world known as the web opened its arms and welcomed me in.

Composing here at FanStory while watching the television news, or while talking with my husband, un-rushed and without a deadline slowly brought back my ability to multi-task. Fielding and incorporating suggestions made by all of the reader-writers there at the site helped me to focus in on what I really wanted the story to tell.

Receiving my proof copy from CreateSpace - a real paperback book with my title and name on the cover and my story within its pages - was a thrill. Reading that proof and finding countless typographical errors, word omissions and paragraph format errors was humbling, but knowing that all I would have to do (find them in the Word Document, fix them and resubmit the book's interior) was, in fact, quite easy and without expense ~ and that was liberating. Truthfully, I did that four times, each time ordering another proof for the minimal print-on-demand price of about three dollars. It was far less than an editor might have cost.

When I was satisfied with the proof, I once again hit submit, and then publish. Within 24 hours there it was, on the Amazon page, with my name, and my set price. On another Amazon page was my biography as the author, with the list of my previous self-published books. But this one ~ Multiple Sclerosis, an Enigma ~was my story: the story of a diagnosis that led only to more problems rather than to a solution. The story of my career's end, the loss of my classroom, and my partners, and my identity as a teacher; it was right there in my book, available to any who wanted to read it, share it, question it, and to identify with it.

While I was working at FanStory.com, another woman with Multiple Sclerosis was re-arranging her own life, following the same diagnosis and facing the same changes this diagnosis brings to people. She was creating an on-line radio station, using telephone connections to have readers interview authors of books about disabilities. Within a few weeks and a few emails back and forth, I suddenly had a web page home for my book. I did a two hour interview which was aired live, recorded, and then formatted as a 'permalink' audio file that later readers could listen to at will. I posted that link on my blog where readers of my book reviews could tune in and, maybe, want to buy my book.

Multiple Sclerosis didn't end because my book ended. It didn't go away because I ignored it in favor of beginning my new career as an author. The answer and resolution to the problems that MS brought into my life remained undefined and unresolved. MS came with no known cause, and so no known cure. That alone would seem enough. But fate wasn't through with me yet. There was more in store for me, health-wise. That is the story that I'll tell in this sequel. Multiple Sclerosis, Melanoma and More is the next book, but I doubt it will be the last.

Chapter 1

Bethesda, 2012

Rick and I entered the enormous building called #10 by the security guard; he gave us walking directions to it from the security garage. We'd seen the large brick building in the distance as we waited for the gate guards to check our vehicle before allowing us into the garage. Everything must be checked so thoroughly now, with the threats of terrorism that hang like a cloud over our world. We were now seeing the building from the inside, bottom up. We entered an elevator, rose to the ground level floor, and stepped out into a glass atrium that was as bright or brighter than the sunny day beyond the windows. After the long ride yesterday, through rain and some thunder, this seemed to bode well for the visit.

It was my third such visit to Bethesda. Two years ago, I was still working, and stinging from both the diagnosis of RRMS (relapsing remitting multiple sclerosis) and its nasty evening treatment injections. I had responded to a request for volunteers: a new study was being initiated by a neurologist at the National Institutes of Health in Bethesda, MD. This study would look for early biomarkers in people who either had Parkinson's Disease themselves, or had an immediate family member with the condition. I fit that bill, but had my doubts: I worried that they might not accept me because of the MS diagnosis, or because I was over age 55. I filled out the questionnaire and hit 'submit' at the bottom. They answered within a few weeks, affirmatively, and I joined the study.

I would travel to Bethesda every eighteen months, and stay a week in the hospital at NIH. Nurse practitioners, doctors, and tech assistants would very politely explain each test before beginning. I began to think of those weeks as my private respite; after dealing with MS treatments, all self-administered and never witnessed by a concerned doctor or nurse, I felt pampered, and appreciated, and compassionately cared for. It restored my faith in medicine, almost.

You're going to be a guinea pig for them? Why? asked a friend at school.

I explained my belief that the tremors and headaches and weakness and stumbling that led to my RRMS diagnosis could also be early Parkinsonism. I reminded her that I knew what to expect from Parkinson's Disease, having shepherded both my parents through different versions of PD in the previous decade. No one in my family had ever experienced RRMS, so I had no established path to follow with that diagnosis. I still doubted it, and wanted to be seen by experts who knew Parkinson's, believing that they would be open to the possibility that what I really had was PD, a condition they could deal with, rather than MS, the condition that no one seemed to want to deal with once the diagnosis was finished.

Aren't you afraid of having all those tests, those experiments? she continued.

Afraid of those tests? ... I had been afraid of one test that my neurologist had insisted I must have before he could definitively diagnose me. I told him I didn't have what he was looking for with that test ... vasculitis ... a disease that involved blockages of the blood vessels in the brain. I was overweight during that diagnostic year: fifty pounds overweight, and on high blood pressure medication. I'd allowed that to happen to me through the years of caring for my parents, eating fast food on the run, sleeping only every other night as I shared overnight care with my sister through the weekdays. Physically, I was run down, overweight and out of shape. But having seen my parents through their final years, I was now no longer a daughter. I was determined to be the best mother, wife and teacher I could be.

I didn't need to be the best patient. I told the neurologist I didn't need that test ... it wouldn't show any blockages. It was a frightening, invasive test, snaking first a minute cable from my groin through my veins up to my brain, then fitting a catheter over the cable and working that up to the brain, then injecting a dye into that catheter, then withdrawing the cable and catheter, all the while with me awake and holding my breath when told to hold my breath, praying that they didn't nick anything on the way up or down.

The neurologist said he needed proof, and my belief was not scientific proof. When a friend