I chose the topic of the roller coaster of Lyme disease for a post on the GLA blog when I was feeling good physically and then got a disappointing test result. It made me think of all the ups and downs Lyme patients go through in treatment.
You can read the full post here:
The Roller Coaster of Lyme Disease
How do you cope with the constant ups and downs of Lyme disease?
"Success is not final, failure is not fatal: it is the courage to continue that counts." - Winston Churchill
Karen Gloyer is on a mission to educate children and families about Lyme disease. She's written a children's book called, Nick, the No Good, Icky Tick. To spread her message across the country, Karen needs our help. She launched and Indiegogo campaign that runs through August 20th, 2017. This book is very personal for Karen, because she has Lyme disease, and hopes to get her book to as many children as possible. With the funds from the Indiegogo campaign, Karen will donate books to hospitals, doctor's offices, and schools.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
My doctors think that I contracted Lyme disease in 1999 while living in Fairfield, Connecticut and working for the Audubon Society. I used to hike a lot and remember getting bitten and then falling ill in the fall of 1999. I was not diagnosed with Lyme, Babesia, and Bartonella until spring of 2013. I was unable to read or write by that time because the Lyme disease had crossed the blood/brain barrier.
You wrote a children's book called Nick, the No Good, Icky Tick. What is the book about?
Abby and her four-footed friend Chowser discover the wild, wild woods and all of its inhabitants. Along their journey, they encounter a no good, icky tick named Nick. This children's book was developed as an educational tool to teach children and parents about Lyme disease, from how the disease is transmitted by no good, icky ticks like Nick, to identifying and treating the disease. Follow along with Abby and Chowser as they explore the wild, wild woods in this playful and colorfully illustrated tale, and make sure you always do a tick check once you have been outside. You don’t want a visit from Nick, the No Good, Icky Tick!
What made you want to write the book?
When I lost my ability to read and write, I decided that I wanted to help others to not have to go through the same experience I went through. I had a dream about writing a children’s book, and that dream evolved into Nick, the No Good, Icky Tick.
You've launched an Indigogo campaign for the book. Tell us about it:
I decided to launch a social media fundraising campaign in an effort to bring Nick, the No Good, Icky Tick to more of a national level. This campaign allows people to donate to the campaign and help me donate books to hospitals, schools, and doctors’ offices.
What do you wish people knew about Lyme disease?
I wish that people knew that Lyme disease can be a very lonely and isolating disease. There is no cure for chronic Lyme disease, and one never knows when the disease will rear its ugly head again once you are in remission. Lyme also can affect most any part of the body, including the brain.
Do you have any advice for the newly diagnosed?
I would recommend that no matter what, they continue to have hope. It is not easy with this disease, but doctors are beginning to get better at helping patients, and the Lyme community is pushing harder for more insurance coverage and better treatment. I would also recommend joining a Lyme support group either online or in person. It helps normalize what you are going through and helps you feel like you are not alone.
Is there a person who inspires you in the Lyme community?
My Lyme doctor, Dr. Kenneth Singleton, inspires me. He was a physician who also had Lyme disease, and now his practice is dedicated to helping others with Lyme disease. He believed in me and my book so much that he wrote the Afterword in my book. He always helps me feel better physically and spiritually,
Please share a mantra or quote that inspires you:
Mine is actually a song, "I Will Survive" from the 1970s.
I'm always looking for new stories and perspectives on Lyme disease, healing, and wellness. If you are interested in being featured on The Lyme Interview, head on over to my Connect page.
"The secret to happiness is: Find something more important than you are and dedicate your life to it." - Dan Dennett
By Crys Baysa
Lyme disease is full of lessons to cherish. I know this may seem contradictory, because in many ways, we feel held back in life, and we see all the potential things we could do if only we weren't sick.
It's easy to make a list: "I could have gone to college," "people would take me seriously," "I could contribute better to my family or the community." The list goes on and on. But at the same time, we have also gained things that others haven't. Much of this isn't physical gain, it's character gain.
1. Lyme Disease is a Time to Learn
Let me ask you a question. What was your life like before Lyme disease? Of course for some of us, we were sick all our lives. I know what your probably going to say: "I could do this and that," "I could hold a job," "I could run a mile," "I could play sports."
It's easy to make a list of the physical things we were able to do before Lyme. It's also easy list the things we could do with our friends before we had such limitations.
Now let me ask you something else. What was your character like before? How much did you know about illness? How did you consider people who had illnesses?
I'm not saying we we're bad people before. By all means, you were probably a compassionate person. But what I'm saying is more along these lines:
Say you're reading about lime-lemonade. You've gotten books about it, you've studied it. You've read recipes on how to make it. You've read descriptions about it from people who have tasted it until it's almost like you can taste it yourself. But you've never had it before.
Fast forward a few weeks. Now is your first ever opportunity to taste it. And once you have, you're like, "Huh this is different than I thought."
That's not saying the descriptions are inaccurate. That's not saying that you didn't have a glimpse of understanding. You probably had heard how good it tasted. When you tasted it, it was every bit as good and every bit the way they described it.
But now you have a personal experience that brings much more understanding than you ever had before. And you realize that you never really understood the lime-lemonade drink before now.
That's what it's like to have a chronic illness. You can read about it all you want but nothing beats personal experience. And once you have it, you have not only a greater understanding than before, but develop a greater compassion.
2. Times of Trial Develop Your Character
After you get a chronic illness, your view of the world changes. It's these views that we need to teach each other and cherish. Let's face it, not everybody is going to have a controversial disease like Lyme disease. And so, it's our duty to educate the world, even if they will never understand entirely. We can still give them a glimpse.
That's what the people who had tasted the lime-lemonade did. They wanted the world to understand, so they tried to educate people.
But it's more than that. When we develop a true understanding, we see that the world is not black and white, but grey. We're not as quick to make assumptions. We see that most things are not cut and dry.
Going through times of trial forces us to see what's wrong in the world. Often times, it's things that are wrong with society, such as the character of society.
For example, when we go through Lyme disease, we see that many people judge by what they see. It's a seeing is believing mentality. They expect to see you with a cane or a wheelchair before they believe you're disabled. Even if your tests show that you are positive for Lyme, if you don't fit what they imagine, they won't believe you.
It's amazing how much you learn about the world when you go through trials. We need to cherish these lessons. Lyme teaches us how not to be. It teaches us not to judge a person based on our own experiences.
Because, if we don't learn these lessons, then we're no better than the people who judge us by how we look.
3. Lessons Are Not Always About Character
The lessons we learn are not always related to character development. Sometimes it's for information. We're forced to learn how the body works and how the health system works. I bet we know more about healing than some people who are healthy.
I know most of us had no intention of going into the medical field. So what is the point for learning all these things? That's assuming we're going through this so that we can develop knowledge.
Well the first answer is in line with the lime-lemonade example: nothing beats personal experience when it comes to gaining knowledge. They say knowledge is power. I disagree. Knowledge coupled with self-discipline is power. That's because you can have all the information in the world, but if you don't have the self discipline to see it through, then it's useless to you.
Also, self discipline comes through experience. Knowledge isn't really knowledge without experience. It's just theory. Until it is put in practice, and until one has the self discipline to use it, it's still theory, even if it's true.
But why do we need this? Maybe it's not necessarily for our benefit. Maybe there's someone in the future that needs the knowledge we are gaining now. It could be that by getting, fighting, and treating this disease, we are gaining the knowledge to help someone else with Lyme or another chronic illness. Knowledge is not always just about us.
It could also be that the knowledge will come in handy and useful for us someday in the future. Maybe we will want a career in the medical field. Then we'll have had the experience of being on the other side. Or, maybe, someday we might get sick again (after we're healed, of course). Then we'll have the knowledge of how to get better faster.
These are just possibilities that are very valid, but none the less possibilities.
4. Let's Take Advantage of this Opportunity
This is probably not the situation we wanted. This is probably not the way we intended to educate ourselves about the world. But this is the situation we are in.
I'll admit, it's a difficult trial. But this doesn't mean that this can't be every bit of an opportunity. We may still want the other opportunities, and that's fine, but we also now have a view of the world that others don't have. We need to keep it, and to cherish it. It may be, that this will be helpful for us in the future someday.
Crys Baysa is chronically ill blogger who has learned a lot of practical knowledge and alternative perspectives due to her chronic illness. These lessons, though hard and painful, have gained her insight and knowledge into the world of being ill. Sign up for her free e-course 5 Lessons to Learn in Chronic Illness to gain access to lessons she has learned.
"I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back." - Maya Angelou
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.