By Sherry Cagan
For the past eight years I’ve been battling a mysterious illness, one we now know to be Lyme disease. I’ve felt much like I had a major hangover and been hit by a car all on the same day and that’s putting it mildly! But come December I’ll be back in the saddle again, determined to share with my two girls my love of the magnificent Cutting Horse. And to teach them not only how to overcome adversity like a long term family illness, but also the importance of working hard, being prepared and going for your dream!
Providing my health holds up, I’m aiming to compete at this year’s championships so I can be inducted into the NCHA Hall of Fame – my goal! To do so, I must win the remaining dollars needed to meet the NCHA’s required $500,000 lifetime earnings and I am close enough to possibly reach my goal this year. During the 1980’s and 1990’s I was a consistent finalist at the National Cutting Horse World Championship Futurity and other major events. I won many Championships on horses bred and trained by myself, my Mom Lanna Wolfenbarger and Step-Dad Glen Wooldridge on our family’s farm in Kentucky. Many of these horses were by the legendary Gun Smokes Pistol, our family stud and sire to Gunsmokes Wimpy, a two time World Champion. The horses from my family’s farm have collectively won over $4,000,000.
But despite all of my prior professional prowess, my dream of being inducted into the NCHA Hall of Fame is not an easy one and one that just recently felt close to impossible.
A small tick bite in 2005 saw my world shatter. I had strange unrelated symptoms that ranged from piercing body pain and numbing to blacking out, difficulty in breathing, and coughing. I saw around 50 doctors over the next five years. All had declared there was no such thing as Lyme disease in California and subsequently misdiagnosed me. I was diagnosed with everything from MS to cancer and it was recommended I have a hip replacement along with a number of other surgeries I fortunately opted not to proceed with.
Unfortunately, this lack of knowledge and inability to diagnose the disease in the medical community at the time allowed the Lyme spirochete bacterium to progress throughout my body and grow to it’s persistent crippling late-stage, from which there is no definitive cure. By the time I discovered I had Lyme Disease, it was nearly too late. I found myself going into shock in the ER with a systemic MRSA staph infection and nearly lost my life in the spring of 2011. My depleted immune system was failing from the high levels of the Lyme disease bacterium and co-infections.
From a strong willed, physically fit athlete and world champion equestrian, I found myself a sickly 93lbs - a mere shadow of my former self. My universe shrunk. Lyme stole my freedom. Not able to get out or feel well enough to see visitors, I was isolated. And certainly not well enough to do my new work as a sculptor. I unfortunately had to decline commissioned work due to my illness. After 2007, it became impossible to work. In addition, medical bills from Lyme are exorbitant and not covered by insurance. We have spent out of pocket over $200,000 seeking medical help over the last eight years.
I suffered one health crisis after another, all after being bitten by a tick. As a country girl who has been raised around livestock on a farm and having been exposed to insects my whole life, you can imagine how incredible I found this diagnosis to be! I did not believe a bug could make me that sick! It wasn’t till I saw my brain spec scan, which looked like I had experienced a stroke from the Lyme bacterial infection in my brain, that I realized this was my ironic reality.
A Path to Recovery – With Some Success but Not Enough
After five years of suffering from a non-stop series of weird symptoms, I was finally properly diagnosed in 2011, confirmed by a Positive PCR test for Lyme disease. Unfortunately it’s not easy to get tested for Lyme. I had to finally demand the test from my resisting physician after exhausting every other scan and test known to medicine. I was finally referred to a Lyme literate doctor, who had seen thousands of Lyme patients.
I then went through two years of very aggressive treatments, including seven months of multiple IV antibiotics, several hours a day. Much of the time I felt I could no longer continue treatment because the die off from the bacteria seemed to make me sicker. It was nearly unbearable. In these dark moments my husband reminded me, ‘What choice do you have?’ As I was rapidly heading for a wheel chair, I am glad for his reminder and support. There is light at the end of the tunnel. It was not until after the sixth month of IV that I began to feel a substantial relief in the symptoms. But unfortunately there is not yet a cure for late-stage Lyme and present treatments come with their own host of problems. I have relapsed a few times and need to continue ongoing post treatment therapies to maintain my ability to function.
Although compromised physically, I’m fortunate to be strong-minded. To avoid further complications and anything that burdens your immune system, one must be extremely self- disciplined and diligent. It’s a constant battle to keep the bacterial levels down to minimize symptoms. And it is virtually a full time job keeping up with all the various therapies needed to assist one’s impaired system from the damage of the Lyme bacterium.
My health is unpredictable so it’s hard to make plans with my family. I must choose wisely, for I don’t have the stamina I used to. I now appear to operate more normally: I am back to driving a car, walking to the mailbox etc. Ah, the simple things we take for granted. But I still have health set backs and many challenging days. On my good days, I probably operate at around 80% of my former self.
And as anyone who has ever been chronically ill knows, diseases of this nature impact more than the afflicted. Its agonizing tentacles affected my whole family. My children felt not only the fear of possibly losing their Mother but they were also spending way to much time alone because I was too sick to care for them like I normally would. My husband has held strong, being my rock. However I do know how scared he was, not to mention how hard it was for him to carry my load for years whilst I was at my worse.
However, every breath is a blessing! A good attitude, a laugh and hope helps. I’m happy to know some of my sculpture work including a monumental life-size bronze sculpture - “Horse in Motion” depicting the Muybridge study - is prominently displayed at Stanford University and a life-size piece of my children playing “Joyous Blessing” is at Portola Valley Town Center. There are also other life-size pieces at private estates, including here at home. I also now enjoy watching my two daughters work, as they have now found their own creative gifts as artists.
I am so grateful for having good family and friends who have helped me through such challenging times. I know so many other Lyme patients suffer alone, as their families and friends do not understand this very complicated mysterious illness we call Lyme disease and the related symptoms. I really live a blessed life with my family and our menagerie of critters. I must stay healthy to enjoy it all.
Educating and Helping Others with Lyme
I am turning my devastating eight-year battle with Lyme Disease into positive territory. With the help of my husband and friends, together we have co-founded the Bay Area Lyme Foundation, a science-focused 501(c)3 non-profit organization located in California‘s Silicon Valley, (www.bayarealyme.org) which opened its doors at the beginning of 2012.
In an eight-year search of answers, I’ve spent endless hours researching the disease. My appetite for information led me to attending medical physician Lyme conferences. I read dozens of books and reached out to nearly every Lyme expert around the world to educate myself on ways nutrition and healthy habits can help support my immune system. I should have my PhD by now! I know just how bewildering and uncharted the Lyme disease frontier is. If I had been given accurate information when I was first bit, and gotten treatment right away, much of what I’ve endured could’ve been prevented.
With Bay Area Lyme Foundation, my friends and I want to help prevent the needless suffering of others. We want to make Lyme disease easy to diagnose, simple to cure and prevention common knowledge. We want to accelerate solutions for Lyme disease, making them accessible sooner to patients and make these new discoveries part of medical school curriculum and continuing education for physicians. It is unacceptable that patients must wade through the challenges of finding appropriate medical care. My wish is that others are comforted by hope as we work to find a cure.
Along with my other dedicated founding partners (three of whom also suffer from Lyme disease), I am standing up to Lyme disease and fully committed to this newly found non-profit organization. Regardless of being under treatment, hooked up to an IV pole or no matter how sick I felt, I’m determined to bring the most brilliant minds together to tackle this problem. We will find the right path through interdisciplinary scientific research and collaborative efforts with world-class entities. We need reliable testing, effective treatments and a cure. Philanthropic support, strong due diligence, strategic planning and utilizing the funds principle for operating costs will insure we have the longevity to complete our mission.
The Bay Area Lyme Foundation funded research studies at Stanford and met with a number of scientists, heads of departments as well as the Dean of the prestigious Stanford Medical School. As a result, we are pleased that Stanford established the first interdisciplinary collaborative working group focused on Lyme in the country, led by more than a dozen esteemed scientists and co-chaired by two faculty chairmen. They have convened to explore the many areas relevant to chronic Lyme and related tick-borne diseases: neurology, immunology, infectious disease, pain management, bioinformatics, psychiatry and psychology. It’s likely that these collaborative efforts will not only uncover answers about Lyme, but they may also positively impact many other related diseases, such as Alzheimer’s, Autism and MS. Results from one study also proves there is indeed Lyme disease in California along with other strains and co-infections. Co-Chair Dr. Mark Davis states: “We at Stanford will do our best to make Lyme history.”
I have also created and chair “LymeAid,” the Bay Area Lyme Foundation’s Annual Celebrity Benefit Dinner Concert which is an evening of Discovery and Hope. This year at our Spring 2013 Premier event hosted at our home, we raised over $400,000 and brought together some of the leading scientists, physicians and ecologists in the country as well as some of Silicon valley’s most dynamic business minds and philanthropists. The event featured Daryl Hall from Hall & Oates, who is also living with the challenges of Lyme disease. We are looking forward to our fall fundraiser, Polo for Lyme, at which we will be making a press release about exciting upcoming news regarding LymeAid 2014 featuring English Beat Live.
Though the CDC has recently reported there are 300,000 new cases of Lyme disease each year, 10 times more cases reported than previously thought, most people do not know what a Lyme patient goes through to regain their ability to function or about their chronic pain and despair. The public also doesn’t hear about the hundreds of thousands who didn’t receive early treatment or those who don’t respond to treatment, or those who cannot get help, can’t afford it or die.
It is heartbreaking that many Lyme patients live in silent despair. Discovering people in wheel chairs who have lost their jobs, homes and families after contracting Lyme and learning of the millions who still remain ill with this silent killer is what drives me to take action. It is why we started the Bay Area Lyme Foundation.
Along with the love and support of my family and friends, I keep going by focusing on my two big goals: competing at the World Championship Cutting Horse Futurity again and helping others who find themselves suddenly faced with this bewildering no man’s land they call Lyme disease. A bit of winning on all fronts will be icing on the cake!
And as a good friend of mine remarked, “That tick bit the wrong chick!”