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July 4, 2014

35 Unexpected Lessons I Learned from Late Stage Lyme. ~ Candice Mitchell

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Update: New Vaccine Developed to Prevent Lyme Disease (ncbi.nlm.nih.gov)

Summer is the height of tick season.

To some, this may not mean much.

It might mean seeing a few news segments about the risks of tick bites this time of year, a couple of extra television ads on the latest bug repellents on the market and a few newspaper articles coupled with pictures of insects that you hope you never have the chance to meet.

But for a small portion of the population, this season is a bit more significant.

For the rising number of those of us who have been diagnosed with Late Stage Lyme Disease, these seasonal awareness campaigns hold meaning.

I’m 25 years old, and I have Late Stage Lyme. I’ve been battling it for almost 10 years now.

It’s taken a long time to get comfortable with saying it out loud or typing it on a page that I know others will read. It isn’t quite like announcing that you have Lupus, Multiple Sclerosis or a type of cancer.

The implications of receiving a diagnosis of Late Stage Lyme Disease are a little different.

Because the Lyme Disease epidemic has shown up on the map in a fashion similar to that of HIV, the diagnosis carries controversy and a decent amount of political baggage. Much like the plight of patients with AIDS in the 1980s, those who have contracted Lyme are going undiagnosed and untreated because the disease is so under-researched, underfunded and misunderstood.

Current testing is unreliable and the simple life-saving prompt treatment often goes un-obtained. The medical community is currently at odds about even the mere fundamentals of the disease, but there is one fact that is indisputable: the patients who struggle with it are suffering.

Once a patient is finally diagnosed by a rare (and often personally educated) specialist, the patient has entered into the disease’s late stage.

They then become an “untouchable” to all other medical professionals, and more often than not, they hear a phrase similar to a quote from the documentary Under Our Skin: “There is no medicine for someone like you.”

And if there is, insurance isn’t going to cover it. It isn’t rare for a Lyme patient to have to pull a “Dallas Buyers Club” and head way outside of the box (or the country) on a trek to save his or her own life.

For many, the bite of an insect the size of a poppy seed turns life upside down in a monumental way.

This is the part of the article where I’m probably supposed to tell you my story, and describe the harrowing experiences endured during my 10 year stint with Lyme Disease. And honestly, I could do that. But I’m not going to.

If I’ve learned anything through this journey, it’s that while we may not get to change the facts of our story, we get to dictate the way that it’s told. We get to decide the role we’re going to play in it, how we’re going to interface with each chapter, and whether or not we’re going to be the victim or the heroine of the saga.

So give me a cape and call me a superhero, because I’m not the victim of this story.

Through the experience of regaining my health, I’m learning that we’re all served our set of monumental challenges. My life may (unfortunately) look wildly different from the lives of my peers, but each has its own set of challenges.

They may not involve ambulance rides, surgeries or medical anomalies, but I think we’re all given a set of obstacles that shape us into who we’re meant to be, and guide us toward where we’re meant to go. Whether it’s the loss of a loved one, destitution, or a broken heart—sometimes we need that detour that launches us onto a path we wouldn’t have otherwise found, and a guide to teach us how to walk down it.

Lyme Disease is my detour. Pain is my teacher.

Though it’s weakened my body and sucked some of the vitality out of my vital organs, it’s taught me where my true strength lays and it has breathed new life into my world. It’s taught me the value of gratitude, the true definition of courage, and the importance of unconditional self-love.

Because of Lyme Disease, I know how to find the light switch when things have gone impossibly dark, and how to laugh when life doesn’t seem very funny. Though it’s been a hard lesson to learn, I’m learning to allow this disease to continue to shape me each and every day.

Lyme Disease isn’t who I am, but it’s part of the foundation of who I’m destined to be.

So, maybe if we surrender not to our challenge itself, but to the lessons it can teach us, it would be easier to view our own story as a triumphant tale and make peace with what lays behind us and before us.

So, whether you struggle with a chronic illness, or you’re a 20-something facing a challenge that’s forcing you to question where you’re headed, I hope these life lesson’s that I’ve learned resonate with you.

Happy Summer. Please be aware of tick season, and educate yourself on prevention. Lyme Disease, thank you for gifting me a new level of awareness, for the irreplaceable education you have provided me, and for showing me a new way to be.

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Unexpected Lessons I Learned from Life with Late Stage Lyme:

1. Never leave the house without dye-free benadryl. Oh, and snacks.

2. When someone says “Hi, how are you?”, 98% of the time they are expecting a one word answer. Unless it’s your mom or your grandmother who’s asking. Then your answer requires no less than 125 words.

4. Don’t chew your Chlorella tablets. Even if the bottle says that you can. And if your doctor tells you that they taste like M&Ms, he’s a liar.

5. Moccasin slippers are a wise investment. When you accidentally forget to put on real shoes, people will be less likely to notice.

6. Laughing is really important. It brings us back to the moment and reminds us to exhale, and to use up less of our moments worrying about the future or grieving over the past. But it’s okay to cry sometimes. That’s important too.

7. You can’t juice a banana (just trust me).

8. If you consume carrot juice, quercetin, turmeric and vitamin C all in one day, you’ll wake up looking like you’ve had a bad spray tan. Don’t worry, it’ll fade.

9. It is indeed humanly possible to consume more than six servings of vegetables without it completely ruining your day. A vegetable rule of thumb—if you hate it, then roast it.

10. Sign up for Amazon Prime. When there’s only two pills left of your favorite supplement and you’ve forgotten to order more, 2-day shipping will be free (also good for chocolate flavored almond butter emergencies).

11. Then you’ll probably want to make friends with the mailman. It doesn’t hurt to get friendly with the UPS guy either.

12. If you want something to work, the first thing that you have to do is believe in it. The second step is to trust it, and the third is to commit to it until what you believed would happen becomes a truth.

13. A doctor, a teacher, a mentor or a healer can show you how to do it, but they can’t do it for you. You have to meet your guide halfway. It’s up to you to do the work.

14. If you’re going to sit in an infrared sauna, drink a lot of water before you get in, even if your bladder tells you otherwise. Don’t wear mascara.

15. Don’t let a closed door close your mind, or hard circumstances harden your heart. Staying open and gracious allows space for unexpected opportunities.

16. You are not The Hulk. Don’t start at full dose. Invest in a pill cutter, and for a while, decide whether or not it’s going to be a “little half” day or a “big half” day. Feel like a rock star when you pick the bigger half.

17. That inexplicable funny feeling that you sometimes get about things? It’s your intuition. Trust it. It’s smarter than your heart and less biased than your brain.

18. Don’t steam okra. Unless you’re into eating green banana slugs, then go for it.

19. For those mornings that you wake up feeling like you have a massive hangover (or if you really actually have a hangover, no judgment here), keep a bottle of peppermint oil next to your bed. Sometimes it’s the little things that can really shift a girl’s day.

20. Study ingredient labels like it’s your college major. And if you can’t pronounce it, don’t eat it.

21. If your shampoo or perfume would be toxic if you ate it, then you shouldn’t wear it.

22. Bring fruit and a baggy of sea salt with you to your blood draws—it’s one of the quickest ways to get your blood sugar and blood pressure back up. You never know when they’re going to go vampire on you and take a quarter of what’s in your veins.

23. Sometimes, when you feel impossibly sick, it’s best to go back to the basics. Your body might just need some breathing room.

24. Stop looking for the “right answer.” Pause for a moment, breathe, and let it come to you. The further you go searching for what may not be yours, the farther you get from what’s actually meant for you.

25. Make peace with your sweatpants. The world is lucky you got dressed.

26. You can never have too many blankets, pairs of pajama pants, epi-pens or extra rolls of toilet paper.

27. Hearts don’t actually break. They crack sometimes, but eventually you find your glue and that painful broken feeling subsides.

28. It’s a good idea to check your blood pressure before you attempt yoga…unless you feel like tasting your yoga mat.

29. Your body loves your gluten-free diet. Just give it some time to prove it to you.

30. The dishes will still be there in the morning.

31. When all else fails, call someone who loves you.

32. Try not to underestimate yourself. Your body may be somewhat unreliable, but your spirit isn’t.

33. Asking the question “Why me?” just proves to the Universe that you haven’t learned the answer yet, and nothing goes away until it teaches us what we need to know.

34. Even when you lose what you perceived to be “everything,”  you’re still you.

35. You’re not just in the process of healing your body; you’re likely healing your life. Trust the evolution, and love the person that comes out on the other side.

 

To learn more about Lyme, visit:

California Lyme Disease Association: http://lymedisease.org/
Bay Area Lyme Foundation: http://www.bayarealyme.org/
LymeLight Foundation: http://lymelightfoundation.org/
Under Our Skin: http://underourskin.com/
Olympic Free SkiierAngeli VanLaanen’s Film on Her Journey with Lyme: http://vimeo.com/65479794

 

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Editor: Emily Bartran

Photos: Author’s Own

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Candice Mitchell