Plinky: What was the best thing of your day, yesterday?

  • Yesterday…all my troubles seemed so far away.
  • It’s The Little Things In Life
    lavender I bought a small lavender plant at the giant grocery store. It was sitting outside with its brothers and sisters. Some were larger with strands lifting straight to the sky. The one I bought was not the tiniest, but it was a small plant that seemed to look at me with a wink and smile. I bought THAT lavender plant and yesterday, all by myself, dug a small hole and planted it in my front yard. It seemed so appreciative to have been selected and after it was replanted I took the special pink watering can and sprayed the roots, to make the ground wet and mushy and muddy-fresh. I had dirt under my fingernails, the sunshine on my back and it felt wonderful.
    Gardening is not a great big deal for most people, but for people with Fibromyalgia and chronic pain, it felt like I had just won the Olympics. I didn’t ask my husband or son for help, I tried to do it on my own. And indeed, in my very own small world, I got the gold medal.
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The Sum Of Me

Henri Matisse, The Dance I, 1909, Museum of Mo...

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I am part of an internet group of dear friends who also have Fibromyalgia, a chronic pain disease. We generally talk about the effects of this leech, this parasitic illness and how it makes us feel and how it affects our lives. It is what brings us together; and we truly care about one another. Imagine, a group of people who you have never met yet you trust them, seek out their advice. These people really do know how your pain feels.

We could discuss things we used to do but cannot do now. For me, I would talk about gardening and how I used to have a big vegetable garden many years ago when bending down to my knees and getting up was no problem. I would reminisce about the bright green English peas that grew, the fiery red cherry tomatoes that bathed in the sunlight, two kinds of lettuce and thick, orange carrots. I could also talk about the three miles I used walk in under an hour with my work friends each day, outside, around a blue-green reservoir. Maybe I would confess I was a size eight for about two minutes and twenty years ago while I was struggling with infertility issues and the deep, emotional pain of that process. “If I couldn’t have children, I was going to be skinny” was my mantra as I made myself march outside.

The summer before I was diagnosed with Fibromyalgia, and my children were at camp, I would take the train to New York City and relish being surrounded by people from all over the world, hearing them speak, watching the beautiful, colorful outfits that so many people donned in shades of rose, green, yellow, blue, shades of white and grey. Perhaps I would see a Broadway show for half price, go to a museum, or back to the Village and try to recognize it after many years. Going in to the city was like having an international picnic without even leaving the gleaming Grand Central Station.  I didn’t worry back then about getting to the city and how much walking I would have to do and whether I had to take a cab because I was so tired and drained that I couldn’t put one burning, aching, painful foot in front of the other.

Many blogs I read are about chronic pain and diseases, and I wonder at their brilliance. It’s a dilemna for me because while I do write about my chronic illness or two, I write about everything else in my life.  Am I doing myself a disservice? It could be. I write about food, depression, fun, family, television, friends, travel, grief, cheesecake, chocolate etc.  It’s a mix and mash-up of a blog, like a patchwork quilt with different patterns and colors. Do I need to define myself more clearly?  I may have just answered my own question. I am all things, not just one.

I am a patient, a parent, a friend, wife, mother, teacher and student. I love many things: reading books with beautiful covers, writing, taking photographs of children or benches or boats. I love to watch red cardinals and yellow finches at my bird feeder and butterflies winking by me. I love to eat good food, I am sweet on sweets, I dislike alcohol; coffee, orange juice, chocolate milk or Diet Coke are my beverages of choice, I drink them all at different times.

I could choose to pick one subject to write about but, it would not be my true self, of that I am sure. I am all over the place with emotions and experiences, flying, sometimes crawling, like red, yellow, blue and black kites sailing in the gusty wind, all tangled together, or in peaceful harmony, sometimes independently flying free. I am a person, with many  facets. I am as many pieces of my puzzle as I want. It’s my puzzle, I need to make the pieces fit,  for me.

True Friendship and Chocolate Cake

Two Rainbows at Dusk in Denmark.

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I’ve gotten notes from friends far away saying “I don’t want to read  that you are in pain” when they read SOME of my blog posts. When words strike an already high-wired nerve, I have to respond. I am a woman with Fibromyalglia; Fibromyalgia does not define me. It is part of my life and it has taken a long time for me to accept it but I do. You should too. It is only a part of my life just like food and television and good friendships and my amazing family. I write about all these things.

When I am in pain, I write out my feelings which, I think, everyone in the chronic pain community understands. To the people who read my blog and don’t share a chronic illness, let me explain: when I write these things down, I am trying to heal a little piece of myself. I do not write them for sympathy or for you to feel bad. I write about all my feelings, all the different parts of my life: like having teenagers or hiding orange cupcakes in my room or my sweet, aging dog. I’m sorry if you are feeling uncomfortable about my pain and I’m sure you wish I had less of it but that is not something I can control.

When something funny happens or I fall in love with a cooking show about “Desserts” or “Chocolate” or a delicious/horrendous meal that I have had, I write about that too. A new, dear friend I met on Facebook wrote: “you sure do like to talk about food” as we discussed dinner and I made her describe the chicken and dumplings she made in great detail (hint: buy Bisquik.) I complain about the boring lentil soup I have made and she tells me which spices to add. We both have chronic, autoimmune illnesses but we don’t focus on that. Our chronic diseases are a given. Life goes on and we with it.

I see photos of her beautiful garden with red, ripe delicious tomatoes stretching towards the sun and  bright yellow ears of corn I want to bite into. I see her huge, beaming sunflowers on the side of her house and I am in awe of nature and it’s beauty and my friend’s talent. I taunt her with my (as she calls it “disgusting”) food combinations; pizza with jelly, tuna salad sandwich combined with peanut butter and jelly ( I only did that once) and all things edible. I tease her about her “texture” issues with food, anything “squishy” is unacceptable! Once in a while I will interject a questionable squishy food into a totally unrelated conversation: “raisinettes?” “shrimp?” and she understands what I mean and we laugh.

My evenings are brighter after we talk. This is a friend that has been more protective of me and more supportive than the “best friend” I had for thirty-five years. This is a friend I have made without meeting and if I never meet her, we will still be friends. It begs to ask the question: how do you define friendship? It’s given me a lot to think about. Friendships on Facebook with a common interest are special, we bond about something we have in common and in most cases (except one horrible group I was in) without judgment. Period. We don’t care about how much money people have or what religion they are or if they have a job.  Be wary of a group that say they support everybody with pain and yet they discriminate and cause extreme pain to others who might not “fit in” to their exclusive or religious group. In the other wonderful chronic pain groups, we don’t emphasize anything except friendship and empathy, nothing else matters (if you need suggestions, write me.)

See me, please, as a whole person and if you feel uncomfortable about the days I blog about pain, please don’t tell me not to write about them; you could just say you are sorry that I am in pain and that you are thinking good thoughts for me. Our illnesses are part of our lives, but most of us try not to let them define us. It’s what we have to do.

Dedicated to Katie