Posted on Dec 17, 2010 in Blog |

Dear Friends,

Each year, I start the process of writing this letter by reading what I wrote the previous year, returning me emotionally, mentally, and physically.  Sometimes, that’s a good thing; sometimes, it’s a painful memory.  I often shed a few tears thinking of what others and I have endured in the past year, not necessarily sad tears.  Just tears.  Often, it is accompanied with gratitude for my journey in the last twelve months.  This year is no different.

Businesses: 

Jeff signed a big remodeling contract in September for Home Equity Builders (www.hebinc.com).  Other remodeling jobs have been coming in throughout the year.  Our Handyman Division has been consistently busy throughout the year.  We are thankful to have survived the difficult economic times.

myNeighborsNetwork is now offering software licenses to anyone who would like a similar network in their communities.  We currently have interest for networks outside Baltimore, MD and Boston, MA.  Contact me at Sharon@myneighborsnetwork.com if you are interested.

Earlier this month I attended a luncheon in Richmond, VA hosted by the First Lady of Virginia honoring Neighbors Foundation (www.neighborsfoundation.org) for our efforts of sending care packages to military personnel serving in Afghanistan and Iraq.  Both Governor Bob McDonnell and former Governor Douglas Wilder gave inspiring, entertaining speeches in addition to First Lady Maureen McDonnell.

Neighbors Foundation is currently trying to raise $5000 to help with postage costs through the end of the year.  All donations are 100% tax deductible.  It costs $14.95 to send each care package.  No donation is too small.

Neighbors Foundation was also handed the reins for putting on the annual 4th of July Fireworks in Great Falls, VA this year.  Jeff had been chairing the committee for a number of years, but this year, Mike Kearney handed it all over to the foundation.  We had a very successful first year and are ecstatic to have the responsibility of continuing this favorite community holiday event.  I don’t know how Jeff survives each year, but he does an awesome job and the fireworks are always first class. Anyone who parties at our tent will attest to this.

Heather & Joey:

Heather continues working with me at myNeighborsNetwork.  She continues work on her degree at George Mason University.  She is also earning her yoga certification.  Her birthday in January will reach to a new decade, one she is not too happy about, but I remind her it is better than the alternative.  She usually glares at me when I say that.  She has become a vegan and weighs the same as she did in high school.  And I must say, she looks amazing.  The vegan diet agrees with her.

Joey is still enjoying the Simi Valley, California lifestyle. He came back for a quick visit in August.  Facebook allows us to keep up on his activities, including a few appearances on “The Price is Right.”

Hobbies: 

I have temporarily given up needlepoint and knitting.  Joint pain in my hands has forced me to choose between typing and needlework.  I am hoping once my Lyme treatment finishes up, the pain will subside and afford me both passions again.

Jeff continues his passion for fly-fishing.  He participated in the Healing Waters (www.projecthealingwaters.org) and Casting for Recovery (www.castingforrecovery.org) tournaments.

Jeff continues organic gardening, expanding his plantings even more.  He makes his own compost, gently reminding me to throw stuff in the compost pile instead of the trash can.  We have become even more firm believers in the importance of eating organic food.

Jeff’s latest hobby:  bees.  For a man who almost lost his leg two and a half years ago upon splitting open a yellow jackets’ nest, I do not understand his fondness for bees.   He ordered two hives this year and even let me decorate the outside of the boxes (that’s as close I get to these insects).  He hopes to harvest some honey in 2011.

Travels:

We didn’t travel much.  The blizzard in January-February kept us confined.  Thank goodness for our generator!  I attended David Hazard’s (www.itsyourlifebethere.com) writers’ retreat up in the Adirondacks (my first time up there) in late September.  Having finished my first book just a few weeks before, I spent the four-day respite outlining my book on Lyme disease.  We had a house on the point of Third Lake.  Exquisite.

This past Thanksgiving, we spent a week in Naples, Florida with Jeff’s family.  We slept, ate, read, visited, and Jeff fished.  He fished a lot.  We also watched the Harry Potter movie, a time honored family tradition.  Traveling is still physically tough on us.

Accomplishments: 

My book, Making a Pearl from the Grit of Life, was published in November.  Of course, I encourage you to purchase your copy at www.sharonrainey.com (there is also a link to Amazon on there).  And feel free to purchase a copy for a friend. The publication of this book is a realization of a lifelong dream.  For those of you know me well, yes, I admit and take responsibility for the sentence fragments in my book.  I have made peace with them.

David Hazard, my editorial director is more than the supreme beings of all editors.  He accompanied me on this tumultuous, emotional journey for the past three years, including when I had to drop the project temporarily during Lyme treatment.  He and Jeff are the only two humans who know the full depths this book took me to.  David is a friend for life.  He is also my editor for book #2, which I have already started.

This second book is about Bartonella and Lyme disease.  When I told our physician I was starting this book about my journey through this disease, without missing a beat, he offered to co-author the book with me.  We expect a September 2011 publication.  It has been a lot of fun to work on this project.  I have met some incredible Lyme warriors whose stories are inspiring ten times over.  I can’t wait until it comes together and is published!

Stephen:

Stephen’s senior year at Langley High School has been his best year academically; another testament to the power of healing.  The day before he started his senior year, he stated, “I have never felt like this before.  I guess this is what it’s like to feel ‘well.’”  Of course I cried.  We discovered his recurrent pneumonia was not a vestige of his birth defect, but rather, a symptom of Bartonella.  I gave him Bartonella in utero.  He has had it for 17 years.  My gratitude for his healing is not exaggerated.

Stephen is now looking at colleges for the next school year.  His first and second choices are both Virginia schools: Old Dominion University in Norfolk and Virginia Commonwealth University in Richmond.  His current goal is to become a Certified Art Therapist, which requires a Masters degree, available from the Eastern Virginia Medical School, also in Norfolk.  He is also considering the possibility of becoming a psychologist.  The art therapy program will allow him to combine his interests of psychology and photography.

He has continued his pet sitting business throughout the year thanks to repeat and referred clients.

Health: 

When I wrote last year’s letter, I had just received my diagnosis of Lyme disease, and co-infections of Bartonella and Babesia. I had no idea what we were in for nor the depth and breadth this disease would take our family.

Just after sending off last year’s Christmas letter, we received Stephen’s test results showing the highest titers our Lyme Literate Medical Doctor (LLMD) had seen. Stephen has three strains of Bartonella.  Jeff tested positive for a newly discovered strain of Bartonella in January. We are our physician’s fourth family to go into treatment at the same time.

Because of the severity of Stephen’s infection, we put my treatment on hold for a couple of months while we got Stephen’s treatment moving forward.  Having now endured what he went through before us, I am amazed he completed his junior year of high school.  Side effects of the treatment include extreme fatigue (as in, you literally cannot get out of bed for weeks), deep bone pain, and a constant exacerbation of symptoms of the original infection (called Herxheimer response or Herxing for short).

We have a remarkable physician whose treatment protocol is unique.  We are each on a long-term course of 2-3 oral antibiotics; long term course, meaning 12-18 months of daily doses of 2-3 antibiotics.  And, we are each healing.  I have made many friends in the past year, most of them with Lyme disease or Bartonella, Babesia, Erlichiosis, or any combination thereof.  Not everyone is healing.  To be able to say Jeff, Stephen, and I are healing is a significant statement.  As evidenced by my Aunt Betty’s death in 2002 from this horrid infection, not everyone survives this disease or the treatment for it.  We are among the lucky ones.

I owe my life and my family’s life to Dr. M.  I don’t publish his name because money and power have corrupted even medicine.  There is great controversy about the correct form of Lyme disease treatment and many LLMDs have been persecuted (I do not use this term lightly) because of their loyalty to the effective, responsible treatment of Lyme disease and its co-infections.

Dr. M is a rheumatologist by training with a background that includes Yale and NIH.  He is data-driven, research oriented.  He is the only physician who has been able to explain every single one of my symptoms since 1981 ranging from viral meningitis, h.pylori infection, forgetfulness, peripheral neuropathy, chronic sinus infections, hypo-thyroidism, lower back pain, and even itchy ears.

I still blog about my journey through this disease at www.sharonlivingwithlyme.com.

I strongly encourage you to order the film www.underourskin.org to get a glimpse of the seriousness and severity of Lyme disease.  It also touches on the politics of the disease and the corruption of the Infectious Diseases Society of America.

If you need a Lyme disease physician, please consult the International Lyme And Associated Diseases Society at www.ilads.org.  Do not seek treatment by a physician other than a Lyme Literate Medical Doctor (LLMD).  I can give too many examples of individuals who didn’t start with an LLMD and their disease only progressed until they did see an LLMD.

A very welcome byproduct of my body healing has been a 40-pound weight loss. The weight started coming off about four months ago.  I still have a long way to go, but am grateful for the weight that has come off so far.

I won’t be able to change everything in just a year’s time, but am hoping the back pain will resolve eventually.  My LLMD has helped with pain management (withOUT narcotic painkillers). He referred me to a physical therapist (www.pelvicorept.com) that works completely differently than any other I have encountered.  She describes my muscles as fibrous and crunchy; they bend the needles she uses in dry needling.  She had to have a special steel tool made for her pressure point therapy.  But she has made progress where others never made a dent.  It will take more than a year to undo the damage of 30 years of infection.  But if anyone can get my back and hip working again, it will be Dr. Kathy Pesavento.

Friends: 

My friendships are deeper, richer, and oh, so sweet.  Those in my life are truly the treasured pearls of my life.  I have struggled with friendships my entire life. In this single year, God has blessed me with rekindled friendships from 30 years ago and new friendships that will certainly last a minimum of 30 more.

My friends brought me surprise notes, shared chai and tea with me, emailed me funny puns, and shared their own pain and victories, helping take me outside of myself.  My Lymie friends (aka Lyme Warriors) called me when desperation was dire, whether it was theirs or mine.  Thank you to everyone who has offered support, friendship, and laughter.

I initially ‘wrote off’ 2010 as our Year of Healing.  Dr. M told me it would be 12-18 months of significant changes and severely reduced activities.  I heard his words and changed my life in tremendous ways, but I was still not prepared.

I no longer go out of the house after 5 pm on weeknights (rest is a major requirement for healing) and I plan only one activity for the weekend, whether it is a meeting, lunch with a friend, a visit to the farmers’ market, or a movie with Jeff.  I encountered some taunting for my severe restrictions, but fortunately, mostly, I have gained an intimacy with those who surround me unmet before in my life.

2010 netted a successful business with prospects of expansion, a publicly recognized foundation, my lifetime dream of publishing my first book, a physician co-authoring my second book, healing from a disease that has haunted me for three decades, and significant weight loss.

It brought my family from a low of despair, fatigue, pain, and fear, to an unmatched closeness and camaraderie.  Our journey through Lyme disease gave us deeper compassion and a more solid unity.

When I started on a particular medication that can evoke deep bone pain, I experienced a “dark night of the soul” in which I gave up.  I couldn’t do it.  If this is what the next eight weeks would include, I didn’t have the strength or courage to continue.  The next morning, Stephen, seeing my pain, sat down next to me, put his arm around me, and said, “Mom, it WILL get better.  I promise you.  It won’t always be like this.  You can get through this.  I got through it and you will too. Just take this one hour, one day at a time, and you will do this.”

My son was doing for me what I could not do for myself.  He gave me the courage and the strength to endure those eight weeks.

In the middle of the night, when the painkillers couldn’t do enough, and I cried from the pain, Jeff rubbed my back and my legs, lulling me back to sleep.  I could not have endured this year without Jeffrey and Stephen.

My life is permanently altered as a result of this Lyme disease diagnosis and treatment.  I will never go back to my previous lifestyle. I will rest, restrict my stress levels, give freely of my love and compassion, and share my story with anyone who will listen. I will take days off, I will continue to say no without a shred of guilt.  I see how stress and fatigue stunted my healing.  Relapse is possible if I do not take care of my body.

My parents’ generosity surpasses no one’s.  Mom and Dad, you know all that you have provided for us; without you, I would not be writing this letter, I would not be writing my second book and giving Aunt Betty a voice.  My utmost gratitude for all you gave.

My uncle Troup saved my life last year with just a few words:  “You don’t have Lupus.  You have Lyme.  Get tested at IGeneX lab.”  Had he not uttered those words, I would not be healing today.  Thank you, Troup.

2011 will bring even more gifts:  Jeff and I will celebrate 20 years of marriage, Stephen will graduate from high school and begin college, and I will publish my second book.  Most anticipated of all, all three of us finish our treatment for Lyme disease.

As we celebrate the birth of our Lord and Savior Jesus Christ, I wish each of you peace and hope.

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