Monday, November 5, 2012


With the country so divided as tomorrow's elections approach, ugly emotions abound. Stress is probably one of the biggest "bad guys" for chronic illness. As many are looking forward to a wrap on this election, the truth is, the strong emotions that have surfaced will not simply disappear. I hope after Tuesday, we find the grace to remove physical reminders like yard signs and empty chairs that will only add salt to raw wounds as we try to move forward.

On this day of uncertainty, I remind myself of how fortunate I am. We live in a beautiful place, one that values community. Where Halloween feels like a neighborhood party. A town where we dance in the streets at the Holiday Open House and drop our own New Year's Eve ball at 9pm so all can enjoy. A place where "buying local" is a priority. We're blessed with vibrant independent booksellers and local businesses that support our community in countless ways. Food banks, soup kitchens and paper pantries help many through difficult days. We're blessed by local farmers who provide us with delicious fresh food and schools that foster excellence. We're blessed with excellent stewards of our environment. We appreciate one another. We're there for each other.

And we love our arts. A few of our family's local favorites...

The art of food 
Heritage tomatoes and apples, root vegetables, artisan cheeses, morels and chantrelles, farm fresh eggs and milk, maple syrup, lavender, honey...ah, the joys of eating simply are truly delicious! I have a deep appreciation for our local organic farmers, especially after becoming so sensitive to additives, preservatives, pesticides and finally gluten. You simply can not beat fresh food prepared simply! Catch Farm to Frame: Ripe Moments Through the Lens, a juried photographic exhibit at Crooked Tree that showcases the journey of our local foods from beautiful farms, to vibrant markets and finally to our tables.

The art of dance
Our beautiful Crooked Tree pre-professional dancers enchant us with their talent and dedication. What a joy to watch their beauty and grace! We celebrate their achievements as they fledge around the country; to Chicago, New York, and beyond and smile at the tiny tots in tutus who look up to them.

Vibrant children's and adult theater
Unforgettable performances keep us coming back again and again, making it easy to support our local schools and Little Traverse Civic Theater productions. There's always something special in the works. We're looking forward to  The Wizard of Oz  this weekend and LTCT bringing The Christmas Carol to life this holiday season!

The art of music
So much to celebrate: PHS Marching Northmen and beautiful concert bands, PHS Steel Drum Band, youth orchestras, the Great Lakes Chamber Orchestra, PHS choirs, Little Traverse Youth Choir, the Little Traverse Choral Society and the Northern MI Chorale. A special thanks to the many dedicated and talented performers, directors and teachers who make this so memorable!

Our home is at its best when filled with music. This fall I found the courage to join the Northern MI Chorale.  The joy of singing with a group of people ranging in age from 14 to the upper 80s was a blessing that far outweighed the physical challenges. My doctor was thrilled, citing current research supporting singing as good for your health. From improving memory and balance, to boosting your immune system and fighting stress. All great tools for someone fighting chronic illness. Recently, I suffered consecutive knee injuries, a real bummer. Singing helped lift me above this new pain and frustration. This weekend I sang in my first vocal concerts. So healing to be surrounded by beautiful voices and so poignant to hear the voices of our daughter and her friend soar in their duet, God Help the Outcasts. So very grateful for the opportunities that let us transcend disease.

Wishing you grace, strength of spirit, and blessings in the days ahead!

Thursday, October 25, 2012

The BEST DAY EVER!!!!!!!

Our girls. Our amazing girls! Their courage and perseverance inspiring! This past weekend our oldest daughter rose above the pain of complex regional pain syndrome in her right hand, with the help of her pain specialist and acupuncturist, to compete in her award winning marching band's final two competitions. Little Sis, who has been wrestling with neurological complications from the syrinxes in her spinal cord braved the trip to cheer her on.

There is no such thing as an easy day. Chronic Lyme brings a multitude of challenges and each case unique. One child with serious health issues is enough to turn your world upside down. Two almost overwhelming. This week my own health pushed me to the brink, yet when I picked up my daughter's iPad, a reminder she had left for herself splashed across the screen, "Today is the BEST DAY  EVER!!!!!!!!!!!!!!!!!"

It is the final rehearsal for Narnia tonight and she is a fairy. A reminder once again that you're most challenging days can still be your very best!!

I really needed that reminder today. My tower of cards has crashed yet again. A week and a half ago I injured my left knee. On Sunday, my right knee gave out under the additional strain. I have had multiple ACL reconstructions and meniscus repairs on the right knee in the past. I'm facing surgery again, likely multiple surgeries. I don't remember if I've ever written about hypermobility syndrome, mixed connective tissue disease and Lyme? It's a chicken-egg kind of thing. Does hypermobility and MCTD make you more susceptible to the effects of Lyme or does Lyme weaken your connective tissue? At this point in my life, the answer makes little difference. When my knee gave out on Sunday, our cantata rehearsal was just beginning. The pain excruciating. I couldn't move without screaming so I stayed in my chair. As the choir, most unaware of my predicament, stood and began singing, "Where hope was lost, a seed was found; a tender shoot, from barren ground," the tears, tucked deep inside, quietly spilled over. Today, they spilled again, but Lil Sis is right. It can still be the best day ever. It just takes extra effort to make it so!!

Friday, October 12, 2012

A Day in Life of Me

A guest post by my daughter.

This is me when I got my new iPad!
I am ten. I love to write, bake, and sing. I have a one year old scaly spiky friend. Her name is Rubye. She is a bearded dragon. Now you may think I spelled her name wrong, but I didn't. You see, Ruby is a common name, but I thought that since that was a common name I would make it an uncommon spelling. I love Rubye because she is really curious and fun to play with.

Marley is a great dog, too! He always knows when something is wrong and sometimes when Mom tries to hug me, he jumps between us and lies on me and pushes Mom away. It's really funny and it always makes us laugh! He always finds me when I am sad or hurting. He gives me a Marley hug and curls up with me. He always makes me feel better. He also likes it when I read him stories, especially ones where the character's name is Marley and he is a dog. Rubye likes stories, too! I am so glad I have a pet patrol in my room!

Lately, I have been feeling pretty icky. Sometimes I have to stay home from school for part of the day because I am hurting. Sometimes I am so tired, I can't wake up. When I do, I feel worse than in my dreams. We are planning to make a chart of my body so I can circle where I am hurting. Today, even my teeth hurt. I have been wearing my neck brace because it is helping me not hurt as much. I have a shunt and have had surgery on my brain. I have two syrinxes in my spinal cord that make my body hurt or feel funny. Sometimes I have a sharp pain that feels like lightening in my back. It is pretty scary. Some days I wish I could meet another kid like me.

My big sister is having some big problems, too. Sometimes I wish I could have a way to go back in time. I would tell the doctors that we had Lyme disease from the start and maybe they could have found a cure for us sooner.

Lyme is not stopping me from doing what I love to do most. Yesterday I started to write a book. A lot of the kids in my class want a copy when I'm done. It makes me feel good that people appreciate what I'm trying to do and also I can't wait until we bake cupcakes or when a birthday comes up. Finally, I have a couple groups I love to sing for and I love to be in plays. My music teacher is the director of some of my plays. We have a lot of fun! I love my friends!  I love it when my cousins are in my plays too!

I love my new iPad because I put a bunch of learning apps on it and it is helping me with learning. Even though I may have problems I don't let them stop me.

Tuesday, June 5, 2012


I've been wrestling with writing, missing the May deadline for a Lyme Awareness post. Yesterday our Border Collie cracked the writer's block.

A family of rabbits lives in our backyard, darting and hopping; very playful. Giving the illusion that Richard Adam's Watership Down's warren has sprung straight from the pages into our yard. Our Border Collie has a different take. To Marley, it is more like Cynthia Rylant's Mr. Putter & Tabby Feed the Fish.where Tabby, is driven crazy by goldfish. Yesterday, Marley flew into a frustrated frenzy, shredding every piece of bedding down to and including my side of the mattress. Fortunately, no quilts were damaged, but UGH! Suffice it to say, between medical expenses, student loan payments and life in general, new bedding and a mattress are not in the budget. So what to do beyond providing love and reassurance to one very remorseful BC who just happens to be draped over me as I write?

Well, there are two traits that come in handy if you're going to survive Lyme. You must be adaptable and a great problem solver. At bedtime, my husband carefully laid out the sheets, making sure the tears didn't overlap and fell quickly asleep. Sewing machine repairs could wait, but what to do with the rather large hole in the mattress on my side of the bed?

Wool roving? I replaced a piece of mattress, stuffed roving around it, then used a pad from a brace to hold it all in place. Good enough. Just as I drifted off to sleep, it hit me that the shreds of fabric were a simile for our lives.

Life as we once knew it in shreds or we're holding on by a shred? A bit of each I think. Dear ones facing cancer and congestive heart failure. Shared grief from recent losses. On the Lyme front, our nine year old is adjusting to life with a shunt and the remaining syrinxes in her spinal cord. Painting, singing and writing bring much joy. She has loved rejoining her classmates at school. Our 14 year old recently developed complex regional pain syndrome after a knee injury. So painful and debilitating! Music remains her solace and inspiration. As one world opens up a bit, the other shrinks. The ebb and flow of chronic illness.

A friend recently asked if I was keeping my head above water? I laughed, "Nose and lips."

Daily antibiotic infusions keep me afloat. Infusions to knock down mastoiditis, a stubborn bone infection left over from my Lupus days. I tire easily. A sense of humor, though sorely tested, hangs tough, but please pardon me if I laugh too loudly. The sense of humor is a bit strained and the left ear still messed up, but as our youngest says, "Welcome to my world."

Who can argue with that?

Yes, blankets are torn and our lives in disrepair, but shining moments keep us moving forward and our spirits alive. So here is my May service announcement in June. As the tick populations grow and spread and scientists warn of a perfect Lyme storm brewing, please learn what you can about Lyme disease. Not all ticks are infected with Lyme, but one that is can change your life forever. When I think of the havoc a tiny deer tick caused in our family's lives, it's humbling. Remember, a bull's eye rash is a definitive sign for Lyme, but it shows up in a small percentage of cases. Unfortunately, the tests for Lyme are often unreliable. Lyme disease should be a clinical diagnosis. A bull's eye rash or a summer "flu" are warning flags. Adequate treatment at the onset of infection can spare years of suffering later. Closing with best wishes from our family to yours!