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Story 46

© Image by Life in Lyme Light.

How has Lyme Disease affected your life?

I am not a Lyme disease sufferer but I am a Lyme disease advocate. I admit to having very limited knowledge or experienxe and I look to my friend who suffers from Chronic Lyme to decipher through all the information and educate me. Many suffering from Lyme know their own bodies and are more experts on this than some “experts” in the medical community claim to be. My friend Nicola Lavin has chronic Lyme disease. We lost touch but I didn’t need to be close to her to empathize with her situation. When I asked to help, I uncovered more about her story and it made it even more important to stand up for her. Her husband and son are two angels and care for her so deeply. She always thanks me for getting involved but she is the one that has inspired and helped me the most. Despite being crippled with this, she keeps on fighting so she can have a normal life with her family. All I will say is, no one wants to be in the situation she is in. Show empathy and show your support. I can’t imagine living with chronic Lyme disease, fundraising to get treatment, being turned away by a lot of people in the medical industry who don’t believe in all the “hype” about it.

What inspires you?

Nicola Lavin is my inspiration. She is crippled with this illness and is off her antibiotics right now to prepare for treatment. She doesn’t fight for just herself. She fights to give her husband and son back a normal life where they don’t have to be her carers. Even though she has been told at points in her life that it is all in her head, she keeps battling through.

Nicola got into art because her Mom loved it and to keep food on the table because she lost her high paying job when symptoms got unbearable. Her Mom’s favorite flower was a Lilac rose and she named her art business Rosalilla which means Lilac rose. So I see the butterfly covered in Lilac roses because I am sure her late Mom is taking care of her from heaven too.

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