Nancy the Great!

Nancy, such a common name for such an uncommon woman. I have my disease to thank for placing Nancy in my life. Alone, in pain and looking for help I turned to an online support group. It was here I met my long time friend “C.” “C” and I got to know each other after he threatened to boot me off the group for joking around with a few folks, something against the rules. (Not so much against the rules, but i was doing it in the wrong way)

Long story short, he and I became friends. When he founded the FMS Community I jumped on his train to help however I could. I became a moderator on the support group and began to work with both “C” and Nancy. Egad, was that really eighteen years ago?

No slacker herself, Nancy, a former financial whiz from Boston, stricken with her own chronic pain founded a 501(3) non-profit org. called the “CSSA.” She was president, treasurer, researcher and public relations. She and a small group of others collected donations, networked with medical professionals and published¬† a newsletter mailed to subscribers, all while dealing with her own health and family issues and…keeping up with her job as moderator for the Fibom-L online support list. She is also a talented photographer with work in quite a few collections, I am lucky enough to have one of her framed works.

I watched with cautious eyes when I realized she was caring on a “flirtation” with my pal “C.” Not out of jealousy as I am in a long-term, stable relationship, but out of concern, not wanting my friend to be hurt by a conniving woman! Worry quickly morphed from respect for a strong woman to love for a dear friend. Her and “C” met in person and never parted again. They not only joined in marriage, they blended the two organizations and we became one happy family, with Nancy handling the financial reins and legalities of maintaining a 501(3) non-profit standing.

Fast forward to 2012, my strong, intelligent, compassionate friend who wielded her computer and cell phones like weapons as she cut a swath through research, misconceptions, myths and lack of support for very real, very painful conditions, can’t even turn on her own computer.

Diagnosed with Stage 3 dementia at a young age she can’t remember how to use her computer or dial a phone. Her short-term memory is sketchy and her health is failing.

I am angry, PISSED that the universe has handed her one more blow. It’s as if taking away her health and striking her down with chronic pain wasn’t enough. The fates that be weren’t happy until they took her mind too!

I am grieving for “C.” He was a thriving musician, disc jockey and printer before chronic pain and other conditions took control of his life. He is a caring, open-minded, generous and intelligent man who had lived alone for far too long before he found Nancy. Now he struggles with her comfort and his own feelings of loss and anger.


Those who can approach their doctor and mention the term Fibromyalgia without getting laughed out of the office as the doctor tells you it is all in your head can thank Nancy. In our day nobody believed our pain was real. We were fed anti-depressants and told to lose weight and exercise more. Hell, I was 120lbs soaking wet with a highly physical job, and they STILL told me to lose weight and exercise, and maybe see a shrink.

Nancy fought day and night, shelling out thousands of personal dollars to find answers. She offered support and information to those floundering in a sea of medical professionals that thought of us as a joke. She met and worked with researchers on the cutting edge of progress. She formed friendships with medical professionals and authors who suffered from chronic, unexplained pain and fatigue who wanted to find answers. She worked with Devin Starlanyl and others, keeping up with research and funneling that knowledge to us via CSSA.

This is a personal blow for me, but I want every person who can now talk to their doctor about FM, CMP, IBS, Sjogrens and other conditions without feeling like a mental case to give credit, and thanks to this hard-working, generous, genius of a woman.

It is time to let her rest and be taken care of, but dammit, if I have anything to say about it she will be thought of as a champion, a loyal friend and dominant force in the fight against an uneducated system that refused to look for answers until public outcry backed them into a corner. Nancy stood at the front of that mob, using her phone and computers like an electronic megaphone.

I thank you and I love you Nancy. My world is better because you are in it.

c2012 Jane Kohler


The Perfect Morning

Gentle sunlight lightly tapped at my eyelids, pulling me from my slumber. Rolling onto my back I stretched the longest stretch possible, reveling in the feeling of my limbs coming alive. Wiggling my jaw back and forth I realized that for once I had not tried to grind my teeth to dust as I slept, my jaw and temples felt pretty darn good!

Sitting up in one quick move I grinned like a fool when I realized that for once, my neck and shoulders were not holding me hostage, forcing me to move and stretch before raising my head from the pillow. Instead, I swung my legs over the edge of the bed, looking forward to all I would do with my day. My feet didn’t wince when called on to hold my weight. My hips didn’t scream through the days first twenty steps. My hands, no longer numb, gripped the door knob, flinging open the door so I could greet the day.

I was going to paint, hike, cook, clean and visit people I hadn’t seen for years. I couldn’t wait to embrace the day and make up for time lost to CMP and FMS. I had WON and I was gonna make the most of it!

Then the alarm went off. I blindly slapped at the alarm with a numb arm and winced in pain as I tried to pull my head from the pillow. It seems so unfair that I can live the life I want while sleeping, but when I awaken my tortured body rules my life! I don’t want disability payments. I don’t want to stay home and not make a difference. This sucks and I am DAMN MAD that this disease, this pain is ruling my life!

Acupuncture, physical therapy, water therapy, cognitive therapy, stretching, herbs, vitamins, inversion tables, raw foods, fiber and countless other strategies have not improved my life or lessened the pain. I am sick and tired of being “SICK AND TIRED!”

I sigh, knowing that the recent rash of people addicted to prescription pain killers has doctors running into the shadows. The chance of my doctor giving me any measure of pain control is slim to none. We need help, we need relief, we need to function, make a living, raise our children, be a good spouse, help others and just live our lives.

Who is going to step up and help those stuck in the cracks, the chronic pain patients who are not dying, but they may as well be at times?

c2012 Jane Kohler

Lessons From Grandpa

My grandpa was a unique man, given the times he lived in. He grew up without airplanes, T.V. and supermarkets. He was surrounded by people who all thought, and looked like him, yet he never let that form his core being.

Despite his sheltered upbringing, he never shied away from those of different beliefs, color or race. He was shunned by the majority of his family for embracing people of color, differing religions and social standing. He fell in and out of marriages as he discovered his wives were not as open-minded, or caring as he. Three marriages in all.

My mom, his second born, tried hard to make her marriage work, but my father’s change of religion drove a wedge between them. My mom and grandpa became each others rock, clinging to each other through every storm. I was lucky enough to spend large amounts of time with my grandpa, who in many ways, had replaced my father.

My grandpa ran the largest greenhouse in the country during WWII. (No, I was not alive during WWII, my time in the greenhouse came much later.)¬† I grew up in that greenhouse, working the conveyor belts, making baskets and tending to the many greenhouse cats kept to keep the rodents at bay. When the work day was done, grandpa and I would often walk by the river or find a nice patch of ground for a picnic. It was during these down times that he filled my head with much of what would become “me.” Things that just seemed right, common sense thoughts that riled others.

He was the voice of reason, common sense and peace in my life, a voice that plays in my head whenever I face a new dilemma.

Things I learned from my grandpa?

* Don’t let stereotypes sway your judgement when meeting new people. He told me every person he worked with was just like him. They had families, they loved, they slept, ate,¬† celebrated, supported each other and felt loss, just like I did. He said they worry over sick kids, homework and mourn their dead, just like us, they just do it with different colored skin. He also told me he had learned a lot of great things from people from different cultures and if I was smart, I would keep my ears open and learn as well.

* He told me religion is very sacred to each person and that I must respect each person’s belief. He encouraged me to learn about multiple religions and pick the one that felt right for me or embrace them all. He often told me, as we sat at the river bank, that any place can be sacred, if we look for the beauty and be thankful for it. He told me that sitting at the edge of the river, marveling at nature, the local creatures and trees in the forest could be as powerful as any church. If I appreciated, and thanked “my” god for this world I was doing ok.

He said no matter my beliefs, the important thing was to “do unto others.” Treat people with kindness, understanding and a lack of judgement as we never knew what burden people are dealing with when we encounter them. He told me to help those in need, care for those in trouble and never feel like I was better than anyone else just because my life was going well at the time…it could change at the drop of a hat.

* He taught me to never hate my father for letting his convictions get in the way of his family life. He told me my father was following a path he believed in, but he loved me and would be there if needed A.S.A.P. He convinced me to keep my father in my life, to be patient and understanding. It was trying at times, but today my dad and I are closer than ever.

* He taught me to be tolerant of sudden change. When my uncle, his sixth child joined the National Guard during the Vietnam war, he left a clean-shaven youth working on a teaching degree. The same uncle returned home four years later with long hair that framed his face and fell down his back. When my uncle entered the house for his home-coming dinner he was met by his mother, aunts, cousins and a bevy of other family that jumped on his long hair. After an hour or so of badgering my grandpa stood up and told them all to “go to hell!” He said “my son left here a caring man trying to do the right thing, and the same man returned to us! His appearance doesn’t change who he is.” I realized he is right. You can have long hair, tattoos or piercing, but none of that changes who you are. He was the voice of reason in uncertain times, and he molded me in many ways.

* He taught me to appreciate nature, embrace all people, beliefs and to search for reasons for someones behavior before having a knee jerk reaction. He encouraged me to learn something from everyone I met and to fill my life with great people.

* He hit me with the hard reality that not everyone who meets me, would like me. A hard pill to swallow, but I understand it now that I have met people who I didn’t like, but couldn’t quite put my finger on a reason why.

* He told me that the whole world was a temple if I embraced it. He said if I found a brick and mortar building to worship at I should embrace it. If not, revel in my fellow humans, honor nature, help others and promote goodness while battling evil.

I embraced his teachings. I don’t see people with labels stapled to their foreheads, I see them as people working, paying the bills, raising kids and cleaning the toilet.

I sowed my oats. I sneaked out of the house, drank, partied, had sex, but I kept returning to the life his words formed. He laid the groundwork for living a life full of people, tolerance and acceptance, I am just thankful that I was smart enough to listen to his lesson so I could incorporate them into my own life.

Thank you Grandpa for giving me the tools I needed to break way from the small minds in my hometown. Thank you for making me feel special and empowered. My hope is that I am embedding these same values in my kids.

c2012 Jane Kohler


Rats! My Bad Day Melted Away.

I had one of those days we can all relate to. The alarm malfunctioned causing a late start for everyone in the house. Then came the stress of meeting our schedule while half-asleep. The front tire on my truck was low, making the hurried trip a white-knuckle experience. After that nothing went right. Spilled drinks, dogs throwing up on the floor, broken cups, spilled soup, lost shoes etc. Nothing about the morning was pleasant.

Then I finally got an hour to myself. The minute I entered my art studio the day changed. My four fancy rats, who have the run of the room during the day ran over looking for a chin scratch and cuddling. I plunked down on my chair with a soda and they climbed my legs to assemble on my lap. They took turns pushing and shoving for a coveted massage. The youngest, just three months old climbed up to his favorite perch, the back of my neck near my ear as the others licked my hands, nose and lips.

In between the love-ins there was a lot of posturing for position and play. I plied them all with carrots, yogurt covered fruit and hay then watched as they tended to the serious business of grooming themselves and each other before settling into nap time.

I felt the stress of the morning melt away, I even surprised myself with an occasional chuckle. One of the greatest stress-relieving techniques are my rats. They are not everyone’s cup of tea, but I love my boys. If you don’t like brightly colored, affectionate, clean and highly trainable rats, I suggest you find a pet, any pet that can take you out of yourself. Relax, let the outside world go and be the whole world to your tiny friend. They give more than they take.

c2012 Jane Kohler

Blowing Bubbles

I exhaled, producing shimmering bubbles that rode my breath to the sky. I gazed in wonder as they twirled in the sunshine, their surfaces glistening with color. Now and then I tried to catch one, only to have it dissipate as it made contact with my trembling finger.

I knew not why the bubbles came, what they meant or what their destination was, I only knew that the bubbles were welcome. Each one took a small part of my pain as it left my body. Sensation returned to my limbs and the rest of my body sagged in relief as they drifted out of sight. Pain slowly slipped from my neck and all points south as a wave of relief washed over my soul.

Left with a sense of wonderment, I asked how a few bubbles could take all the pain my medications and doctors were unable to tame. I was not to get an answer. Instead I went for a walk, made a phone call to get my job back and found my family to share my good news. I was CURED! No more pain, no more sleepless nights, missed work or canceled plans. I couldn’t believe the answer had been so simple. I needed to share this secret with others like me.

Then the alarm sounded and I groaned as I forced an arm to find the button to silence it. Ah…at least I was pain-free and functional for a short time, even if it was in my dream. I hope this dream will come true someday so everyone living with FM, CMP, CFS, IBS, Chrones and more can return to their productive life. It was nice while it lasted.

I did decide I need to blow more bubbles and relax a bit more. Don’t give up, help just may us some day.