When Illness Shows You Unconditional Kindness
Updated: Jul 20, 2018
In the world of Lyme disease, it’s hard to read any positive news. Your read about Lyme patients and their list of symptoms that are a mile long, how they had to struggle to get diagnosed, how doctors didn’t believe Lyme could cause their symptoms and how insurance won’t cover treatment. You read how so many people are diagnosed with Lyme each year but that there is no accurate diagnostic tool.
So, what about the positive and unconditional kindness that we have received during our struggle? What about those few doctors that have believed you and believed that you were feeling those symptoms and not just over exaggerating?
Yes, I did have doctors tell me that it was all in my head, that the pain was making me lose my mental health and that I was making up some of my symptoms. Insurance did not cover my treatment and I am still in pain every day. But there is also another side of the story. One of kindness, love and support.
No matter how bad things get there is always good in your day. There is always someone or something that keeps you going and moving forward.
The few doctors that care:
When I first began feeling symptoms of Lyme disease I was seeing a naturopath. I lived in Arizona, a place where Lyme isn’t on the radar of most doctors. My naturopath was from New York and after months of testing she finally thought to test for Lyme disease since she had seen it in her hometown. My test came back flaming positive. She supported me mentally, emotionally and physically and did all she could to get me to a Lyme literate doctor.
I found a PA in Arizona who was so supportive and dedicated her life to those suffering from this disease. She has a huge heart and is always learning and studying to ensure she was giving her patients the latest care in Lyme. My mom flew to San Diego with her and went to a medical conference to meet a top Lyme doctor who had a practice in New York. He is one of the top Lyme doctors in the world, and I was lucky enough to be his patient. He took me from being bed ridden and needing a wheelchair, to living a semi-normal life. He cared about me as a person, spent hours with me and truly didn’t give up as we tried every medication and supplement in the books. Following my protocols was hard work but with the help of my doctors I was able to slowly gain my life back.
When you are fighting a battle that is misunderstood, it creates a strong community full of people that motivate and support each other daily. Through social media and blogs, those suffering from Lyme and tick-borne diseases can relate and talk about what they are going through and feel like someone understands. Just last week I saw a person get a PICC line put in her arm and a few days later a girl with Lyme from the other side of the country sent her a PICC line cover that she liked to use. This community is kind, compassionate and gives you the motivation you need to keep fighting and to know you are not alone.
Family and Friends:
In my personal life, I am extremely fortunate to receive unconditional kindness and love from my family and friends. My mom researched day and night for two years straight, I think she got less sleep then me when and I had horrible insomnia. She was my advocate and is the reason I got to the right doctors, the reason I made it through having a chest port for an entire year and receiving harsh treatment and why I can live close to a normal life today. My brother and sister-in-law were there at every hospital visit, every ER run and supported me and believed in me and my symptoms. I am extremely thankful for my family and the love they show me every day.
My friends were amazing and always there to binge watch Netflix. One of my best friends even took me to California when I just needed to get out of my house and pushed me in a wheel chair around Disneyland. Who does that?? The people that stayed by me through the hard times of this disease are the ones I know will be in my life forever.
Focus On Lyme Foundation:
My mom, Tammy Crawford, was my biggest advocate and why I received the treatment and care I did. Through seeing the injustices with Lyme, that there is no cure, no accurate diagnostic tool and the lack of understanding in the medical community, she decided to make a difference. Tammy was on the medical board of JDRF, a type 1 diabetic nonprofit, chaired many of their galas and ran a children’s foundation. With her experience in the medical community and fundraising, she put her expertise to work and created Focus On Lyme, a 501©3 nonprofit dedicated to improving diagnostics, treatment, prevention and advocacy for those suffering from Lyme and associated tick-borne diseases. Focus On Lyme has worked with top researchers on diagnostic tools, treatments and the affect of Lyme on the immune system. The foundation hosts scientific conferences that has facilitated collaboration and community with the top clinicians and researchers that wasn’t there before. Tammy is doing everything she can to ensure families don’t have to experience what we did. I now work for the foundation and help plan the events and manage our marketing. It has been an amazing experience being able to give back and help those suffering from the same illness.
Through all the pain and hardship, Lyme disease has brought me doctors that truly care about me as an individual, strengthened the relationships in my family, showed me who my true friends are and is the reason behind our family-run foundation. I am beyond thankful to receive the unconditional kindness I did throughout my journey.
Opinions expressed by contributors are their own.
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