Friday, January 24, 2014

35 Unexpected Lesons I Learned From Late Stage Lyme

When the beautiful Amy Scher offered me the opportunity to be a part of her new collaborative book, "Lessons From Lyme Disease", she asked me to speak about the greatest lesson that I've learned from living life with a chronic illness. My first instinct was to say "embrace smelly supplements and messy hair." But after contemplating the question, I realized that my journey to health has graced me with an innumerable amount of lessons, all unique in nature and most learned the hard way. But sometimes the most important lessons in life come from the toughest experiences, experiences that end up shaping who we are and how we see the world. I like to say that living with chronic illness "builds character", but more than that, I think it's an invitation to experience life on a different level. Amy's question brought to light a few of the things I've learned while "getting there."

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

7. 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. 

8. It is indeed humanly possible to consume more than 6 servings of vegetables, without it completely ruining your day. A vegetable rule of thumb- if you hate it, then roast it.

9. 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. 

10. Just make sure you have non-toxic tissues. That lotion-infused stuff is bad news.

11. 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 (and you can avoid visiting that health food store that smells like eucalyptus and goat food).

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

13. 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. 

14. 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.  

15. 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.

16. You are not The Hulk. Don't start at full dose.

17. Invest in a pill cutter. 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.

18. 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.

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

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, bottles of quercetin 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 that 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.


  1. I adore this! Thank you for sharing! I've had health struggles all my life and can relate to learning so much from them all. I admire your heart, attitude, perspective, and your humor. I'm going to share this post all over social media!

  2. Thank you! Just what I needed. OXO

  3. Can only imagine what it took to bring you to this place of insight but I hear a strong, determined fighter amongst the words. Go you!

  4. I love #31 because one of the worst things about a chronic illness is that people just don't understand what it is like because it is not happening to them. But the people who love you understand and know what you are feeling and if you are having a bad day without you having to tell them. It is these friends and family that help me get through the day. Great list and I am sorry that you have to cope with so much, but you are doing a great job and inspiring others to hang in there. Jenny L.

  5. This comes from a wise soul! And for me, #9 speaks from the heart. An e-hug to you for your courage and determination.

  6. This is wonderful and so very true. I love #16 and #32. Thanks for inspiring us on the long road.

  7. This is why you get nominated for awards. And also why I admire you so much. -MVH

  8. Awesome Candice! Love this!!!!

  9. AWESOME post! PS, I've heard of quercetin. What does it do?

  10. I was diagnosed with MS 14 years ago. I found out last October I have chronic Lyme disease.This past January I found out I also have active Lyme disease .I just started by third medication, first antibiotic. I did fine with nystatine, and the anti malaria meds but tummy is dancing withe the fist ABX. I needed to read these points today. I shared them on my CNLADS Team Ottawa facebook page so others can link into your blog.
    Thank you.

  11. Great post, Candice! Funny, poignant and evocative. We know you'll get there. xoxo

  12. Candice,
    Bearing your soul, wearing your heart on your sleeve herewithin is such a testament to your healing, courage and perserverence. These are beautiful and funny and artful.... And true. It takes one to "see" one....

  13. LOVE this - laughing is a must to survival