Happy Mother's Day

It is Mother's Day and I woke to wonderful gifts from my daughters, a book and a beautiful mobile of ribbon, Shrink Art, beads and fabric flower petals. The gift of creativity is very much intact. My best gift is the progress we've made in our fights against Lyme.

Lyme disease is tough. The fatigue, joint pain, headaches, cognitive and neurological challenges wear you down. For a mother with Lyme, the challenge can be especially emotional if you're not able to do all you would like. From reading to playing, cleaning to cooking dinner, all have taken a hit at one time or another; most daily. And for those of us who have passed this disease unknowingly to our children in utero, it can be especially heart wrenching as we watch our children face the challenges of this disease on their own. From their tenuous beginnings as preemies, to their own daily physical, cognitive and emotional challenges, it breaks our hearts. I know. Both of our daughters have been fighting this disease since before they were born. It is all they've ever known.

A doctor once said, "We would never wish something like this on a child, but kids that endure grow to be pretty special adults."

We have seen this in our daughters' perseverance, compassion and zest for life. Just last week, our youngest strapped on her roller blades and helmet, grabbed a bag of dog treats and our Border Collie's harness, tossed a treat down the hall and held on for the ride of her life! As we rescued the dog, we applauded her tenacity, her love of life.

And so today, we celebrate all of the amazing women who have touched our lives and the lives of our children. Our inspirations each and every day! Wishing you much love and joy this Mother's Day!

Finding a Balance

We live on a hill and are blessed with windy days. This week we took great pleasure in watching our kite dance in the breeze. Sometimes, it would take a dive and crash to the ground. At some point, the kite became my analogy for living with Lyme disease.

I want to dance in the wind, to soar with the clouds. At times I've crashed. I am striving for the balance to keep me flying. The balance that will keep me home.

I have been quietly rejoining life; reconnecting with family and friends, slowly finding the house, continuing our treatments. I enjoy daily saunas and aquatic therapy three days a week. I am seeing small improvements in strength and balance. I nap when my body asks. Sleep finally seems restorative. Unfortunately, the numbness has returned to the left side of my face and tingling/numbness in my left arm. Frustrating, but my Lyme titers were negative for the first time in a year. It's possible the symptoms are stemming from HV6.

Last week I was asked to introduce myself to a roomful of people and I stumbled. Of all times to experience brain fog... Beyond my name and where I lived, I drew a blank. How do I identify myself these days? Retired science teacher? Not really retired. I should have explained my connection to Gary Williams, whom the award is named after, but that came to me moments later, when it was too late. It bothered me for the rest of the day; the same day the IDSA stood by it's original guidelines that Lyme disease is difficult to catch and easy to treat. So disappointing to those whose lives have been turned upside down by this disease.

I woke to a message of gratitude and prayer written by a friend and former student, David Crambell. I was deeply touched and with his permission, I share his prayer with you.

"Father please hear our prayer. Sometimes in life we encounter obstacles that we cannot move without you, so we ask for help, and part of the time we feel you guiding us and helping us past the obstacle, but other times we feel like we are left alone to do the work ourselves, and it is in these times we are the most aware of your presence, for only a good and just God would allow his children the true knowledge of self that we all so possess. Thank You, Lord for watching over us and helping us help ourselves."

May we continue to face our obstacles with grace and education. Our best to you!

Another Side of Lyme

It feels so good to be home. The warm water of pool therapy is fabulous, as is the FIR infrared sauna. I am loving the sauna! What a great addition to my wellness! The trick is not to overdo. To listen to my body. When I forget, my husband gently reminds me. Sometimes though, life makes rest impossible. We have had a crazy week. Our oldest daughter fell and broke her elbow on Saturday. As if that wasn't enough, our youngest started running a fever Saturday night, asthma flaring. The fight was on.

Whenever she gets sick, she gets really sick. This was the sickest she's been this winter, including H1N1, though the Tamiflu helped weather that storm. Fevers spiked to 104.8°F several nights and twice during the day Wednesday. Her asthma flared, prompting a new inhaler and treatments every 2-3 hours. On Wednesday we added a decongestant, an additional antibiotic and alternated Tylenol with Motrin. Her fever broke early Thursday morning. Now we're reigning in the asthma. I think we will escape prednisone, a drug we really want to avoid with the Lyme disease.

Respiratory infections have been a challenge since birth. When she was little, we would cringe if anyone sneezed or coughed in a room, knowing that within hours we would be nebulizing. When she was 18 months, we nearly lost her to RSV when she stopped breathing at home. Her elementary school has been wonderful about taking precautions to lesson her chance of infection. She is a great sick kid, going with the flow. She always has been, but in her letter to her teacher last night, she wrote, "I miss the class. It is not fun missing all the fun."

Hopefully, she'll rejoin the fun Monday. Another storm weathered as we bid winter and this infection good bye. Sending you all our best!

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!

Just one

"Do you have any questions? You may ask anything."

During the fall of 2008, just moments after learning I had Lyme disease and several co-infections, I was reeling with emotion. Relief to finally have an accurate diagnosis, anger it had taken so long, validation of various symptoms and anomalies in blood work, frustration that the Lupus treatment had worsened symptoms, sadness about being away from my family for treatment, anxiousness to feel better, and a pit in my stomach at the possibility our daughters also had the disease.

"Where should we take them?"

Their symptoms? Daily headaches, joint pains, severe asthma, severe sleep apnea, fatigue, insomnia, frequent respiratory, ear and urinary tract infections. Our oldest was losing ground cognitively. Our youngest had been born with severe intrauterine growth retardation, resulting from a problem with the placenta. Entering this world at 2 pounds 9 ounces, she had been fighting with a compromised immune system since birth. She was born with a rare eye defect known as primary hyperplastic persistent vitreous that had resulted in the removal of a stalk of blood vessels and then her lens in her right eye. She had worn a contact in her right eye since three months old, contact and bifocals since 5 yrs. By the age of two her growth had nearly stopped and she began nightly growth hormone injections. Lymph nodes in her neck were enlarged. She had severe sensitivity to environmental allergens that would trigger rages and horrible headaches. Autistic-like behaviors included flapping her hands like a bird. Sometimes we would get frozen in the grocery store, I with milk bottle suspended in mid-air because she would know that it had to go in one perfect place in the cart to avoid becoming very agitated, but she was unable to tell me where to put it down. Her drawings often a flurry of black scribbles.

We were fortunate my doctor had pediatric experience. Our oldest tested positive for Lyme disease, Hashimoto's thyroiditis, HV6, CMV and Epstein-Barr. She began immediate treatment. I remembered a time a few years earlier when her platelets dropped and she was evaluated for autoimmune diseases. The specialist took me quietly aside and told me it was not unusual for a child to assimilate the symptoms of a chronically ill parent. Ironically, her symptoms mirrored my own because we shared the same disease and viruses.

Our youngest joined our "picc team" three weeks later. Fortunately, my husband did not have the disease. It hasn't been an easy road for any of us, but the girls have come so far in their treatments, it warms our hearts and gives us much to celebrate. I'm improving, too, just at a slower rate. Chris and the girls have been so supportive during my third and hopefully final picc line as we continue to strive for a healthy family; a dream shifting to reality with each passing day.

The Peace of Healing

As I begin my last infusion of the day, I am listening to Pandora internet radio. The music is comforting my soul and I don't feel as far from family. Kenny G brings memories of Chicago Christmases.

I think this is the slowest I've ever taken life. I am at peace knowing I am doing the best I can to give my body it's best chance to fight this disease. My liver enzymes were better this week and my picc site looks great. I am exhausted from the treatments, but I am not fighting it. Just sleeping and setting alarms when needed. A bit of knitting here and there. I don't think I'll be home for Christmas, but it will still be special because of the gift of the chance to beat this disease.

The hardest part of treatment isn't the fatigue or physical pain of the herx reactions. It is letting go of the regret of lost moments. Kids grow so fast. Chris called on Skype so I could see the new haircut our 12 year old gave him. She did a nice job! I smile knowing that when the going gets tough, my family will be able to handle just about anything.

Rosemary scents the room, a tiny "tree" from my daughters. It makes me smile.

Wishing you peace this holiday season.

Better Days to Come

My Lyme numbers are now in the danger zone as I wrestle with double vision, nasty headaches, tenderness in various bones in my skull, difficulty walking along with other neurological issues and finding the wrong word slipping into my sentences several times a day. Today I received a new picc line and the first infusions of antibiotics, while I rolled a skein of beautiful yarn into a ball, a gift from a dear friend. I love the color and softness and look forward to creating something special. As I neared the end, the tangles I never seem to avoid became more challenging, but I really loved the yarn and didn't want to lose any so I kept working to untangle each snarl. Finally, almost magically, I was at the end, which you see pictured above in my lap and the analogy to my fight with this disease did not escape me. There is no simple fix when you have neurological Lyme. I'm still working on the snarls and though I miss my family dearly, I know that each infusion brings hope of better days to come.

The girls cheered when they saw my first infusion tonight on Skype. Three infusions down. There are some Borrelia that are in for some serious trouble tonight.