Chronic Lyme Disease Summit 2

Encouragement from others

It was my sweetie, Gil, who encouraged me to publish my collection of essays by creating a personal web site http://www.k2k9.com . Gil had come across some stuff I'd written many years ago, and had suggested that I start publishing some of it. At the time, I was also participating in some online groups about dog behavior, and I felt I was spending too much time doing that, and it had become almost like "work" instead of fun. The idea was borne, and we played around with the idea of k2k9.com as the web site's name. The domain was available, and so began my journalism journey.

Similarly, a few days ago, Joan, a wonderful lady whom I've known for many years, had been surfing k2k9.com and read my essay Walking Wounded (http://www.k2k9.com/song/walkingwounded.cfm) Joan is a nurse, and knows about fibromyalgia. She sent me an email saying she had read my essay, and thought I might be well-suited to start an online support group for fibromyalgia sufferers.

Little did Joan know, that very morning, I had decided to "take a break from" the various online fibro/pain/fatigue groups that I belong to because, once again, I felt it was becoming a negative experience for me, rather than a positive one.

A few hours later, a new idea came to me, thanks to Joan's encouragement! I already have a blog on blogspot.com http://k2k9.blogspot.com, and have often needed to express myself on the topic of my chronic condition, but felt that the k2k9 blogspot was not the place do to so. The k2k9 blog is for sharing my daily dog escapades, photos of my family, and of course my beautiful grandson, Ben. Time and again, I had thought it inappropriate to post information about fibromyalgia and chronic fatigue on the k2k9 blog. But why not create a second blog, devoted exclusively to fibro and fatigue?! Without hesitation, I did just that.

Interestingly, during my search for a template, I found one called "harbor". The ocean is a big part of my life, and a place where I gain strength and spirituality. I happen to live near a well-known lighthouse when I vacation on Cape Cod. The lighthouse is also a symbol of strength and spirituality for me. Its presence reinforces those attributes and makes me feel grounded and safe, while literally providing a light at the end of the tunnel. Whenever I cruise up Ocean View Drive at the end of my journey to the Cape, I see the lighthouse and breathe a sigh of relief: "I am home."



When I chose the "harbor" template for this blog, I didn't really notice the lighthouse, I just liked the colors -- or lack thereof. It was only after I wrote and posted my "Welcome" message that I saw the faded lighthouse in the upper left corner, and the tiny lighthouse at the beginning of each posting. There are no coincidences, I always say. This was meant to be.


I tend to be a natural leader. I've always excelled at school and work, being promoted quickly, and leading others by my example. I observe how people at my workplace will follow my lead, on both negative topics and positive. I can really get people riled up if I want to, and I like taking charge. But I'm also a behind-the-scenes kinda gal. I prefer to be like the Wizard of Oz, running the show, making it look easy, seamless, effortless and invisible. Much like how I hide the fact that I have this debilitating condition. And so, I get frustrated on the online groups, having to follow others' rules, having to be so cautious, risking misunderstandings and disagreements. It's happened to me countless times on the groups. I go just one step too far, and create controversy in my wake. I've quit and returned to the groups over these incidents, more times than I care to remember.

Having my own blog, where I run the show, is the solution. This doesn't mean that I will abandon the groups where I have received so much help, information and support. The members of these groups are compassionate and kind, and even though we are strangers, some have also become like friends. I wouldn't turn my back on that. But my energy is more precious than ever, and my time is somewhat ill-spent dwelling on the symptoms and commiserating -- which is what I feel I have been doing.

I'm feeling a need to move forward, to live my life anyway, despite the fact that I'm in pain, uncomfortable and exhausted. Lifestyle changes have been forced upon me by Mother Nature. It is important to spend less time in negativity, and more time reinventing my life to accommodate this insidious, invisible, and annoying malady. When we watch movies, Gil always insists on "uplifting" ones. If the movie is not uplifting, he wants nothing to do with it. Life should be the same, shouldn't it?

The same day that Joan mentioned my leading an online support group, one of my employees (and a good friend), Kathi, came to visit me in my office at the end of the day. Kathi happened to be the person who set me up with my new physician, a woman she'd been seeing for several years, and whom she highly recommended. My colleague remarked that she had noticed an incredible transformation in me since my most recent doctor's appointment last week, and she wanted me to know that she noticed. I explained that, thanks to her, I had found a doctor who a) believes me; b) took time to explain my symptoms and their cause; c) validated my condition; d) never suggested for a second that I am depressed or mentally ill; and e) provided the correct dosages of medication for my specific case. My friend and I talked for a while, and once again I felt encouraged by her support.

It is encouragement from others that has led me on this avocational adventure of creativity, recovery, research and exploration... and I am truly grateful to them for their support.

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