The answers to the questions we have about life – they are rarely, if ever, black and white. There are gray areas and even more so colors – some dark, some bright and vibrant.
And sometimes you get caught in the middle – you can see the answer, but no one else can, even those who have been proclaimed smarter and perhaps more insightful than you. But in the end, you know what’s inside, you know how you feel and you know that better than anyone.
And you know you’ve got a story.
Everyone has a story.
I am Mark Brodinsky and this is The Sunday Series.
The Sunday Series (129): I Know Me
We are all on this journey we call life and if we are doing it right we are trying to squeeze the most we possibly can out of every single day, never knowing if that day might be our last. So how challenging it must be to look back and realize part of your journey has been lost.
This is the rear view mirror for Samantha Davis.
Samantha, or Sam, as her mother Teresa lovingly refers to her, recently suffered a heart attack. It’s not like that malady is uncommon, except it is – if you are only 29.
For more than half of her life Sam has suffered, for the most part in silence, not her own, but the deaf ear of the medical community, because she suffers from one of the most misunderstood and misdiagnosed ailments of our recent medical history: lyme disease.
For those who are unfamiliar and many of us are, the facts come directly from Lymedisease.org,(https://www.lymedisease.org/) : “Lyme disease is a bacterial infection primarily transmitted by Ixodes ticks, also known as deer ticks. The Centers for Disease Control and Prevention estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US.” But as Sam has learned the tough part is that diagnosing Lyme can be difficult, very difficult.
This has been the challenge for much of Sam’s life. Sam is a twin and she and her brother loved to play outdoors. Both were bitten by ticks says their mom Teresa, but it’s Sam who was debilitated. “Sam got sick at age 13”, says her mom Teresa. “And nobody could figure out what was wrong. We live in the woods, (in Salisbury Maryland), and all have had tick bites. But in the fall of her 13th year Sam got flu-like symptoms and it kept getting worse and worse. Then there was a cough and dizziness and she couldn’t do her school work. Everywhere we went everyone, (the doctors), tried to look it up and diagnosed her for three years with everything but lyme disease.”
“Doctors at three major hospitals said I was faking it”, says Sam. “They said it was all in my head, I was making stuff up and it caused me to go into a depression. From age 13 to 16 I saw major symptoms – I couldn’t walk, I could barely eat and I couldn’t see for two years. I couldn’t eat solid foods, it would hurt really bad. I went from a healthy 13-year-old, a normal kid, an honor roll student, even trying out for cheerleading, to losing a ton of weight, going from 100 pounds to the upper 80’s.”
All the tests kept coming back negative and for three years Sam and her mom Teresa say few were listening or really seeing what was happening. “Her body was so sick it was not fighting the lyme disease”, says Teresa. It was eventually a urine sample, after years of testing showing negative tests for lyme, that the disease was uncovered and treatment began, treatment which lasted for three years. But so much time had been lost.
Sam recalls the pain: “At one point I was so sick I slept 20 hours a day. It was like I slept through my teenage years. I lost memories. It’s been hard, so difficult. My brother and my friends were going on with their lives but I was too sick. It’s hard at that age when you know you are sick, but doctors can’t define it and tell you it’s all in your head. It becomes hard to trust people. I missed out on a lot of things. I don’t want any kid to go through what I went through. I thought I was going to die. Friends of friends got us to the lyme doctor. Don’t now where I’d be if we hadn’t found him. And no one is really treating chronic lyme disease, it’s like it doesn’t exist.”
It’s an uphill battle for Sam and for the medical community. Even the website designated to share information about the disease offers up the shortcomings when it come to diagnosis: “Patients with Lyme disease are frequently misdiagnosed with chronic fatigue syndrome, fibromyalgia, multiple sclerosis, and various psychiatric illnesses, including depression. Misdiagnosis with these other diseases may delay the correct diagnosis and treatment as the underlying infection progresses unchecked.”
Someone finally got it right for Sam and at age 16 the recovery began, but the comeback took almost as long as the years of uncertainty and physical and mental pain. She finally got back into the flow of life, slowly earning her GED, which didn’t happen until about age 23, and then entering the workforce. Life was getting back on an even keel, it seemed the worst was behind her.
But then it happened. Another tick bite, though no one is sure how. Maybe the dog, maybe some other source, but the family is pretty sure Sam was bitten again. Teresa says the ticks can be so small, especially the babies, many people don’t even realize they’ve been bitten. But for Sam, with her immune system already so compromised by all the years of illnesses, this time it was even worse.
“Even the doctors couldn’t believe she was having a heart attack”, says Teresa. “We went to the ER at 2 in the morning and by 4am the heart doctor arrived. He said there was no blockage, and thought maybe there was a blood clot, but couldn’t really find one. Instead he put her on meds and said she would have to take them for a year.” Sam spent a week in the hospital and for a time it seemed touch-and-go. She is slowly on the road to recovery, but still has trouble walking and much rely on her parents for assistance. Most of her treatments are not covered by insurance. Sam currently owes almost $25,000 in medical bills. A GoFundMe page has been established and monies raised will go to current and future medical expenses. Any money raised beyond Sam’s need will be donated to help other victims of lyme disease: (https://www.gofundme.com/help-samantha-fight-lyme-disease?pc=em_db_co2876_v1)
The mysteries of the illnesses and ailments related to lyme disease may never be answered and for Sam the confusion over her past and recent challenge has taken its toll. “The whole thing has been a struggle and looking back makes me sad and want to cry, because I thought I got over the hump and then I had a heart attack and don’t really know why. It’s hard to believe after all this time nothing has changed and the medical community is still doing the same stuff as when I was 13. It’s time for us to come together and say this is not right and fight for change.”
Despite her own inner and outer struggles Sam is now embracing one of the tough challenges of life. You can let it happen to you, or you can let it happen for you and find a way to use what’s going on to change life for others.forging that path: “Never give up hope. We are all so connected in the lyme community and have similar stories. Going through all of this has changed my life. I’ve grown up in a lot of ways and sooner than I guess a lot of people my age. It’s all about trusting in myself and knowing what is true. I always had to keep fighting and it killed me when they, (the doctors), told me otherwise about what was wrong with me. I would cry, but my determination to have my voice heard is now so strong.”
“Hopefully people hear or read my story and they can find out what’s going on with them too and in the end I can help as many people as possible with my story.”
Until next time thanks for taking the time,
Mark
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Thank you for giving my daughter a voice and sharing her story of living with tick borne illness
My. Brother died this year from severe chronic Lyme. I hope the best for you Sam.