Children of the World in Harmony

Our family was able to share in an amazing experience this week. Nearly 350 students from eight nations gathered at Bay View in Petoskey, MI to celebrate the Children of the World in Harmony Festival. My daughters' summer choir, the Bay View Choristers, were invited to participate in the event and it proved to be an unforgettable experience for our families. When we arrived at the first rehearsal, we were met by a wonderful blend of excited voices in a variety of languages and universal smiles. The Hong Kong group giggled as they exitted a van and the Mexican kids chatted excitedly as they entered the church. My six year old looked up at me and smiled as she picked up a few words she had learned in her Spanish class last year. We were treated to choirs that had traveled from Mongolia, China, Mexico, the U.S., Canada, the Czech Republic and Vietnam and the eight hours of rehearsals on Thursday through Saturday were an amazing experience. The choirs all joined together for the last last three pieces of the grand finale concert Saturday evening. My girls loved learning Siyahamba, a South African fold song arranged by Donald C. Moore (ASCAP), the beautiful Da Hai A Gu Xiang (Oh Great Sea My Homeland), a Chinese piece by Wang Li Ping and Yang Hong Nian, and Let There Be Peace on Earth by Jill Jackson and Sy Miller, arranged by John Brimhall. The only disappointment was that the Kenyan choir was turned away at the airport in Nairobi, so were unable to participate. I can only imagine the tears they shared. We missed them dearly and the festival was dedicated in their honor. Music is a universal language and seeing so many children enjoying the company of each other gives hope that there may someday truly be peace on Earth.

Hope!

"Never deprive someone of hope. It may be all they have." unknown

We are huge fans of children's hospitals as they have made a tremendous impact in the quality of life of our daughter. This is one of the most amazing projects I've ever seen! Annette, of Wool Creations and a Natural Kids member, has created Hope who has been traveling the world, visiting children and spreading her own hope along the way. I hope you will visit the amazing blog of her travels.

After one year of traveling around the world, Hope, her passport, her suitcase with clothing and her journal will be raffled off as a set with 100% of the proceeds donated to the Shriners Children Hospitals http://www.shrinershq.org/Hospitals/Main/ . Annette is offering raffle tickets on www.Hyenacart.com/woolcreations and a winner will be drawn from all entries. If you love what she's doing, please spread the word and hope, along with it!

In memory of Jane

Months ago, when I saw my first cancer drop box, I turned the car around and took a picture to send to Jane with a note to drop her tumors off at the nearest box. If only it had been that easy.

Tonight, I write with a heavy heart. A dear friend and non-smoker lost her battle with lung cancer this morning. She was so full of life and so wanted to live. She fought both the cancer cells in her body and the stigma of the disease with courage and dignity. She was an inspiration to all.

We had hoped for a dinner date and a walk on the beach when I returned home. Sources of inspiration to both Jane and I when times were difficult. Sadly, as my friend Julie said today, "That walk will need to wait a long time, now."

Julie and I will walk on Wednesday, cherishing our memories of the dear friend who reminded us to cherish each moment, to make a difference in this world, to remember we're stronger than we think, and to live life to the very fullest, learning it's precious lessons in even the most difficult of times.

Letting Joy Win

We have wonderful news! I am finishing my i.v. treatment at nearly the same time as our youngest and we will be able to return home in a few weeks. It has been January since I have been home. A long time to be away.

We've adopted a rescue Border Collie. My daughter has waited forever for a dog so you can imagine her excitement. My emotions oscillate between the joy I feel about reuniting our family and fear of going off the i.v. antibiotics. This is my second picc line. I lost a lot of ground when I switched to oral antibiotics the first time. I am pushing down the fear we'll lose the ground we've worked so hard to gain and letting joy win out.

We all have much healing still to do, but it took years to get to this point, so it is not a surprise it will take time. I will be bringing home a six year old who is feeling really good for the first time in her life! She skips, bounces and sings everywhere we go! Now, that is something to celebrate! It is time to heal on the shores of Lake Michigan. Sounds pretty great!

If you are interested in learning more about Lyme disease, there is a fabulous award winning documentary called Under Our Skin coming to theaters this summer. It is also a selection on NetFlix. Hues of nature is donating half of all proceeds, excluding shipping to Turn the Corner Foundation, a nonprofit active in the battle against Lyme disease in hopes of helping other families like ours.

Wishing you many blessings!

Spring has finally arrived!

The last few months have been a blur as we continue down the road to better health. We have much to celebrate as the spring flowers return and we welcome a new foal where we're staying! The girls have made remarkable progress! There are no words to capture the joy we feel, as we watch their joy in healing! From a nightmare, three miracles are blooming. Our family is still separated, as our youngest and I continue picc lines and i.v. antibiotic therapies, but the distance is lessened by Skype and a web cam!

We've loved a glimpse into the White House through the lens of Pete Souza. Pete has uploaded many images to commemorate the first 100 days of the Obama administration.

Hues of nature has undergone a change. I am again making a few fairies with 50% of the proceeds donated to Turn the Corner Foundation, a not-for-profit foundation fighting Lyme disease.

Thank you so much for your wonderful support of hues of nature and our family as we travel this road together! Wishing you a spring filled with so many blessings!

Family Time

It has been a crazy few days with many doctors' appointments, tests and procedures, but it has been wonderful to have our family together.

Our friends sent a wonderful Bee's Wax Candle Rolling kit from Magic Cabin and the girls really enjoyed making candles together. They scored a sheet of wax in a right triangular shape to make a tapered candle. They laid a wick along the long side and rolled the wax around the wick. They are beautifully dyed and smell delightfully of bee's wax. A treat for the senses. Thanks Smiths!

Settling In

As I continue my treatment, I've gained some company. Mikayla and I are in Detroit for six weeks while she undergoes i.v. antibiotic therapy for Lyme, as well. She began treatment on Tuesday and is settling in. She gets tired, too, so we've been napping together. In addition to a nurse's cap, I've added a teacher's cap as we try to stay as caught up as possible. Playing the oboe was a bit of a challenge with a sore arm, but we were creative problem solvers and devised a method that helped. We will know on Wednesday if Olivia will be joining us. I have started a website at www.caringbridge.org. The girls' website is named, "mikaylaandolivia". Sending our best.

Our little trooper!

Our little trooper did fantastic with her lymph node biopsy, yesterday. She was very excited to have the bump in her neck removed. It was often sore. The wonderful staff, the surgical ward's dvd player and the hospital's gift of a purple bear made the morning pass smoothly. She was slow to wake from anesthesia and they let her sleep so Mom and Dad were able to enjoy the inaugural events at noon and catch a few glimpses of Pete, to boot!

As the morning progressed, I began having flu-like issues so it was a long trip home, but as our little trooper said the night before when I asked her to put her coat on to go to the restroom so she wouldn't get sick, "Mommmmm, how can you GET sick if you're ALREADY sick."

She has a point. : )

Catching Up

I hope this finds everyone enjoying a wonderful New Year! The sun is shining for the first time in days and it is beautiful! My appointment with my opthamologist went very well. My corneas are clear! Another positive sign! I have added an antiviral component to my antibiotic treatment and true to form, I am feeling worse, as expected, and will continue to feel worse for several weeks before I begin to improve. Exhausted, with joint pain and headaches, comes close to summing it up, but the girls are in school, the house is quiet, and when I need to sleep, I do. Several vitamin supplements have been added to my healing regimen.

I'm gathering strength for round two. Lyme disease can be transmitted through the placenta during pregnancy, and it has. The light at the end of the tunnel? The joys of a healthy family. Enjoy life's blessings!

Breaking news!!!!

Pete Souza, has just been named the new White House photographer!!! Pete will be returning to the White House, having covered the second term of President Ronald Reagan. To read more, please visit http://nppa.org. We are so thrilled!!!! Congratulations, Pete!!!!!!

Our best for 2009!

We're settling in for another winter storm and we're enjoying the holidays very much!

I saw my optometrist today. The corneal scarring is limited to the left eye, does not block my vision and is now faint. Hopefully, by the end of my treatment, it will be gone forever. Muscle weakness responsible for my incidences of double vision, difficulty changing focus and queasiness will also, hopefully, improve with time. He was so happy that we finally have some answers for my health! Me, too! : )

Sending our best for a wonderful 2009!

Thank you!

This morning a friend of mine "kidnapped" me for what I would soon learn was "Kim Day." My friends had been planning a day to spoil me. Our first stop was the hair salon for a much needed cut and style. I was pampered with a pedicure, which felt glorious on my itchy skin, then on to some delicious soup at one of my favorite restaurants, Julienne Tomatoes and shopping at a local sports store where I was treated to new exercise pants and shoes for physical therapy, a wonderfully cozy jacket that is perfect for warding off my occasional chills, and the cutest pair of boots to safely walk around outside in. When I tried to learn who to thank, I was just told that a lot of people were a part of it. So I am sending my love and a huge thank you for the wonderful welcome home present many of you sent my way! Again, wishing you your best holiday ever!

I'm Home!

My picc line came out today. Hooray! It feels great to have it out and to finally be home! My youngest kept asking me if I would be home for Christmas? The answer is yes. Wishing you a wonderful holidays!

The Perfect Storm

In 2005, rheumatologists believed I had Lupus because my ANA was so high. The treatment severely compromised my immune system with three drugs, CellCept, Plaquenil and Prednisone. My condition did not improve. It grew worse.

A year and a half ago, I began to question Lyme disease. The symptoms matched. I dug through my bloodwork and of 40 tests, I had never had a positive Lupus test. The protein in my spinal fluid was elevated in three spinal taps with a small number of white blood cells in each. I had a red lacy rash on my skin. I was to later learn I had human parvovirus and Epstein-Barr virus in my system.

My ANA continued to climb. I developed a nasty respiratory infection, made worse by my compromised immune system. Two antibiotic treatments resulted in a normal ANA for the first time in years. I came across a study in the Journal of Rheumatology written by a pediatric rheumatologist who warned rheumatologists to beware of patients with human parvovirus and Lyme disease. Their bloodwork presents as systemic Lupus. A plausible explanation for my ANA.

Though my symptoms were atypical for Lupus, doctors were hesitant to look for other explanations. I had two negative Lyme tests, but later learned that it would have been virtually impossible, due to my compromised immune system, to have a positive Lyme test.

Fortunately, I met an infectious disease specialist who understood the disease. I have been responding well to treatment and no longer take any medications that compromise my immune system. My bloodwork from last week yielded a positive Lyme test!!!

There is a flaw in the treatment of Lupus and Lyme. If the assumption of Lupus is made before ruling out Lyme disease, the treatment of one compromises both the doctor's ability to diagnose, as well as the patient's ability to fight the disease. It is the making of a perfect storm.

An Amazing Repair

The nerves in my right arm are beginning to function again and as a result, muscle is returning to parts of my right hand! The change is quite striking! I can hardly wait to see my physical therapists. I know they'll be as thrilled as I am. I continue to gain more control of my legs, as well.

My weekly appointment went very well. Symptoms continue to be consistant with my diagnosis and my physician is very pleased with my progress. Now that the Lyme has been knocked down, we did extra bloodwork today, to survey viruses and co-infections. This will give my doctor an excellent idea of what is needed for my next phase of treatment.

Hopefully, my picc line will be able to come out in ten days and I will be ready to begin my next phase.

Wishing you a wonderful week!

Better Days

We have the most wonderful friends and family in the world! Thank you!!! Your gifts, when times are so hard for everyone, are so very much appreciated. I can't even begin to find the words that express our endless gratitude and love for all of you! Your gifts will help with gas, medical bills, food, a donation to the The Lyme Disease Foundation and Santa. Thank you!!!

This song by The Goo Goo dolls has long been on my mind.

"And you ask me what I want this year
and I'll try to make it kind and clear
just a chance that maybe we'll find better days."

As my dream for better days becomes more and more a reality, we are so very grateful for all of you this holiday season!

Two weeks to go

I am 2/3 of the way through the i.v. therapy! Though I will continue oral antibiotics for several months, the progress I have made in my first month is very exciting. I woke up today feeling like I am getting a second chance at life. Each day, there is a little more improvement.

The face that looks back at me in the morning looks more and more like my old self. The swelling on the left side of my face, part of my existence for two years, is subsiding. The deep circles under my eyes are not as dark and some of my color is returning. If the lesions on my cornea are caused by Lyme disease, there is a good chance they'll disappear with treatment. Just one more symptom that confirms the urgency of my current treatment. My thinking is clearer.

My walking is improving. It was becoming very difficult to walk fluidly. I was losing control of the function of my legs. I am so excited to tell you that I am walking so much smoother, now. Strangers no longer look at me with a concerned look, wondering if they should offer help or cross to the other side of the street, when I go to the post office. : ) Those darn doors are still pretty heavy to open, but in time...

My headaches, which I've had non-stop since 2005 seem to be abating!

Words can not express my deep sense of gratitude for the care I am receiving.

Thanks for the visit!

It was so wonderful to see my family this weekend! They were the best medicine of all and so content to hang with me as I healed. Thanks so much for the hugs and TLC!

"I won!"

'I won!" said our youngest after breaking the wishbone.

Wishing you a wonderful Thanksgiving! It has been quite a week and I am very grateful to be back at our friends' home for the holidays. My husband, daughters and mother-in-law came today and it is wonderful.

On Monday evening, I developed severe abdominal pain and spent the evening in the emergency room at Beaumont. I learned quickly that I had developed acute cholicystitis, a thickening of the gall bladder, and that I also had gall stones. By 6:00am, I was transferred to a room and Tuesday evening I had laproscopic surgery to remove my gall bladder. I was able to come home yesterday evening. A little extra healing this week, but so nice to have family, the best medicine of all.

A special thank you to my physician and surgeon and the wonderful nurses who took care me this week!

Wishing you a blessed Thanksgiving!

Sending Hugs

Sending much love and a warm hug your way! My family and I are so blessed by your friendship, kind words and prayers. Wishing you a wonderful holidays with many blessings! We have so much to be thankful for. Topping the list is you!