Monday, November 22, 2010

The Power of Caring

Recently, I have found comfort in cranial-sacral massage and acupuncture. As I lie on the table, soft music playing in the background, the experience for me is quite spiritual. I have been sick for so long, I feel as though my body has come to know that as its natural rhythm. During each session, I feel my body is gently wakened to a balanced state. I am reminded of how it should be. I am at peace, my breathing easier and I often sleep deeply after a session. In the few days that follow, I feel a boost in energy. I imagine medications working more effectively. It is not permanent. I schedule two sessions a month.

For those of you who have not experienced acupuncture, the needles are tiny and many pokes are nearly painless. A few are bothersome, but the sensation disappears within minutes as endorphins, the body's natural pain killers, flood the area. Once the needles are in place, I rest. The needles are removed and my session concludes with a cranial-sacral massage; the gentlest massage of the cranial region at the base of the skull and the sacral area of the spine.

Our youngest has experienced three sessions of cranial-sacral massage without acupuncture. Each time, she has fallen into a deep sleep during the session, breathing as easily as I've ever seen her. She feels disoriented when waking, though the time has decreased with each session and it no longer frightens her. Her last session, she ran ahead of me to her appointment, in the door before I. It helps that we place ourselves in the hands of one of the most caring and gentle women I've met when we walk through the door. The visits have been a blessing, but became even more precious when our daughter noticed I was struggling with a headache a few days ago.

"Mom, would you like a caring massage?"

She gently took my head in her hands. My heart melted. Last night her older sister was hurting. Her solution? Another caring massage, remembering each soothing detail as she administered comfort. Her sister went off to bed with a smile on her face. We all did.

This Thanksgiving, our family is grateful for the gift of caring shared by so many who have touched our lives. When it comes to Lyme disease, it often takes courage to care, and to those who have the courage to make a difference in the lives of others, we are especially grateful! Wishing you and your family a blessed holiday!

Sunday, October 3, 2010

A Vacation

The idea came as we were returning home from another round of appointments. Some of our symptoms were weighing heavily on my mind, but with each passing mile, I was calmed by the golds, oranges, pinks and reds that paint the roadsides in a northern Michigan fall. Grammy and friends had enjoyed a color tour earlier in the week. Were we up to a similar trip?

For the past eight years, our road trips have been reserved for appointments. As a casualty of our seemingly endless medical sagas, I realized our daughters had never been to Tahquamenon Falls, a few hours north. The girls are pros at travel and I bounced the idea off my husband because he would need to help with driving. Falling leaves prompted our decision and he spent extra time on homework yesterday, making the idea reality. This morning we headed north. Even our Border Collie was excited at the prospect of a sunny day spent together.

The girls' enthusiasm when crossing the Mackinaw bridge bubbled over, making us both smile. We stretched our legs at the Cut River Bridge, and our youngest exclaimed, "I've never gone across a bridge where it wasn't to go to an appointment! Today, it is like a real vacation because I can just have fun!"

Bless her heart. Miles passed as we sang songs from GLEE, soothing a few rocky moments.

Today we took a vacation. A vacation from school, demands of home, and Lyme. We thrilled in the gorgeous colors of fall and the wonders of the Upper Peninsula. For my husband, it brought back fond memories of a biological sampling trip years ago. For me, memories of trips to Michigan Tech. For our daughters, our mini vacation provided the wonder of possibility. Special memories were created for all of us!

It felt so good to capture a bit of the magic of living, the joy reflected in our faces. What a blessing to have traveled this far in our healing so we could enjoy today! Never has the importance of living in the moment been more clear to me. Wishing you a wonderful magical fall and sending you our very best!

Thursday, September 30, 2010

A Birthday

Thirteen years ago today, I woke to contractions. I was 34.5 weeks pregnant and scheduled for a hospital visit and pre-registration later that morning. We met my ob-gyn at her office beforehand. I still remember her words, "What do you think?"

"I think we're going to have a baby, today."

My son had been born 9 weeks prematurely. Doctors tried to stop the contractions without success. This doctor was hopeful my contractions would stop. She sent us to pre-registration at the hospital, asking them to check me again at the end of the visit.

We were given a quick tour by a very nervous receptionist. My water broke at the end of the visit and we were quickly moved into the room we had just toured. I was going to have another preemie.

There were several complications during the birth, the most dangerous being the umbilical chord was wrapped around our daughter's neck not once, but twice. Each contraction would be bring a slowing heartbeat. Enter high doses of Pitocin and I dilated from 3 cm to 10 cm in 20 minutes, avoiding a C-section by minutes. Our daughter arrived, weighing just 4 pounds 4 ounces, tiny and blue. Yet, like Kate DiCamillo's tiny mouse, Despereaux, she was "born with eyes open." My husband and I will never forget when she turned her tiny head to look directly at him the first time she heard his voice outside of the womb. The bond formed at that moment was a bond that will last a lifetime.

She was unable to maintain her own body temperature and her heart rate was of concern. She was rushed to the neonatal intensive care unit, her home for her first week. Doctors discovered a reflux that affected both breathing and heart rate and she would go home with a monitor that weighed nearly as much as she. It would be her guardian for the first year of her life.

The reason for my premature births remained a mystery. I did not drink or smoke. I ate well and exercised. I was not severely under or overweight. I was told that if we chose to have a third child, it would be a preemie. The doctor was right. Nearly five years later, our youngest entered the world, at almost the same age as her sister, weighing just 2.5 pounds. It would be many more years before we would learn the reason for the premature births. I was fighting a chronic bacterial infection. I had Lyme disease.

It has been well documented in scientific literature that the Lyme bacteria, Borrelia burgdorferi, can cause miscarriages, premature births and still births. Transplacental transmission has also been documented and we are convinced both of our daughters have been fighting this disease since birth. I would love to see Lyme tests for mothers and infants after unexplained premature births, though I wish we had a better test, knowing that the current test would potentially miss many.

On this day, we celebrate our daughter, a beautiful young woman, who brings so much joy to those who know her. We give heartfelt thanks to the fabulous doctor who saved her life at birth and to the fabulous doctor who has given her a new lease on life as she continues to fight Lyme and its co-infections. We are blessed beyond words.

Saturday, June 19, 2010

A Bit of Mourning

Tonight I can't sleep. It is warm and humid and Borrelia do not like heat. Our youngest has awakened several times, anxious and in pain. Though she's finally sleeping, I've given up for the moment and here you find me. At the computer at 4am. Perhaps I'll sleep better in a bit.

Each time I sit down to the computer, I face the evidence my life has changed. In high school, I was blessed with an English teacher who taught me to write well. With Lyme, what once took minutes can take hours. I read and reread because of multiple errors; errors I never made before.

My girls want to learn to play piano. Our teacher encourages parents to take lessons first so they can help their child during the week at home. This week I took my second piano lesson and teared up. I don't know how to explain it other than the piano acted as a magnifying glass to the weaknesses that have developed in my body. The muscles in my hands and arms were screaming their fatigue. I felt there was a wrestling match taking place between my brain and the rest of my body. The piano teacher was patient and kind as I tried to explain my emotions. I learned if I look at my hands as I play, my brain has an easier time communicating with the rest of my body. I sense piano could become a form of physical therapy in my healing. It also raises the question should I look at myself as I walk? I may try this in a safe place in our home as my legs occasionally have a mind of their own.

To face Lyme, it often takes superhuman strength, both physically and emotionally. Perhaps tonight I needed to mourn for a bit the person I used to be, as I feel the need for sleep returning. Sweet dreams and bless you for sharing this journey.

Sunday, May 9, 2010

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!

Tuesday, April 27, 2010

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!

Friday, March 12, 2010

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!

Thursday, February 25, 2010

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!

Thursday, February 4, 2010

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.