Soup for the Soul

 
It started when  Northern Michigan Recipes: Six Soups for Comfort from MyNorth appeared in my e-mail with an accompanying message from my husband, "Yummmmmm!"

He's right. Soup is perfect in January, yet because I'm healing from consecutive knee surgeries, I still think twice before venturing out. Winter and crutches are a tricky mix, but  a bright blue sky and sunshine on glittering snow were the boost I needed to head to our local food co-op.

I love our co-op. It's perfect for me; small with just four aisles, great organic produce and kind employees. I run into friends and never find myself at the back of the store, zapped of energy, wondering who hid the kryptonite and how in the world I will make it back home?

In the first aisle, a young man noticed a grocery list by the spices and asked if it might belong to me? Two small miracles;  I had brought a list and I still had it. As I was checking out, a cashier came over to ask if I might have dropped my list? Surely a special place for this was the second time I had been asked if the list was mine? After declining a kind offer to carry my groceries to the car, I left the store warmed by these simple acts of kindness.

I carefully made my way along the sidewalk, still smiling, passing an elderly man who smiled back. He stopped and asked , "May I help you with your bags?"

I hesitated, unsure if it was any safer for him to attempt the task, but there was something special in the way he asked and I accepted. Blessings would come with my acceptance.

He helped me to my car and my small bag of fingerling potatoes triggered a summer memory. He told of a visit with a friend who sent him home with fresh garden vegetables. Tucked among the corn and zucchinis were fingerlings. He marveled at those delicate potatoes and for a moment we shared an appreciation for life's simple pleasures.

We said good by.

He surprised me yet again when he began pushing my cart into the store.

"Thank you for your kindness!" I called.

He waved, smiled, and with a twinkle in his eye, left me with these words, "We're supposed to love one another."

On Saturday, January 19, 2013 the U.S. celebrates the National Day of Service in honor of Dr. Martin Luther King, Jr.. I suspect my new friend celebrates it every day.

In gratitude.

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!!

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.

Shreds

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!

It's a new day, day 101. The sun is out and the snow is fresh and beautiful. I've finished my last infusion. My nurse will be here shortly to remove my picc line. It feels a bit like being in a life boat and losing your paddles. I'm not worried about having my line pulled. It's painless. It's just that in the past, I've slipped on oral antibiotics before. That leaves one a bit nervous. This was my third picc line. Hopefully, it will be my last.

How do you know when it has been long enough? The double vision has subsided, my liver enzymes need a break and I've been away from my family for a long time. It's enough.

So tomorrow, I am heading home to begin the next phase of this journey. For those of you who know my girls, please keep it a surprise. They will be so excited! I'm looking forward to trying the "toaster" my husband ordered. Yes, I know, it looks like a gimmick from the fifties, but I was intrigued by Ashley's January post about FAR Infrared Saunas and am hopeful my our new sauna will provide an added edge toward healing. My husband has already fallen in love with it. I can't wait to return to the pool at physical therapy and now that I'm thinking of water, three cheers for showers where you can get both arms wet! Heavenly! Home. I can hardly wait! It's going to be a good day!

Flaws

I see two problems with diagnosing a patient with Lupus before accurately ruling out Lyme disease. First, the treatment of Lupus by design compromises the immune system, which in a Lyme patient cripples its ability to fight the Lyme bacteria. Symptoms worsen, sometimes resulting in irreversible damage. Second, the drugs that compromise the patient's immune system make it virtually impossible to have a positive Lyme test. This is huge because so many physicians rely on a positive test for diagnosis. In my own case, two early negative Lyme tests were irrelevant because of the immunosupressive drugs I was taking. Four weeks into my IV antibiotic therapy, after all immunosupressants were removed from my system, I tested positive for Lyme disease. If I had not found a doctor who understood this, that test and diagnosis would never have come.

According to Stricker et. al in Future Microbiology:

“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”

Perhaps this is why, a year after I began treatment for Lyme disease, my ELISA and Western Blot IgM values are still positive for Lyme disease and climb when symptoms worsen.

If you are interested in reading more about the chronic Lyme controversy, Kris Newby wrote an insightful blog for Under Our Skin Chronic Lyme, Real or Imaginary which included the above quote. I pray for a day when science will trump financial gain.