Note: This article was originally published on The Mighty on August 29th, 2016
I'm writing this from my hospital bed on the 13th floor of a well-respected hospital in Chicago.
I'm lying here thinking, Why do they have 13th floors in hospitals, anyway? At this particular hospital it happens to be the infectious disease floor. It's my third visit to this floor; the friendly daytime nurse even recognized me.
Chronic Lyme disease is a controversial illness with little to no acceptance or understanding in Western medicine; but when we become acutely ill, we still have to go to the conventional emergency room or hospital. There are no integrative medicine emergency rooms… yet.
There are many serious symptoms of Lyme disease that could land you in the emergency room or the hospital, like seizures, paralysis, fainting, strange rashes, and the feeling of having a heart attack. For me, it's been a persistent bone infection.
Many Lyme patients avoid the emergency room out of the fear of being misdiagnosed or mistreated, because there is a lack of understanding of our complex illness. But even more so, we are afraid of being judged or told it is all in our head.
In the emergency room yesterday, the well-intentioned doctor listened and took notes on my complicated history — the years of autoimmunity, the bone infection, the eventual Lyme disease diagnosis — and then sweetly asked, "Are you an outdoorsy person? Where would you have been exposed to Lyme?" We are asked this all the time, even though the CDC published a study that ticks carrying Lyme disease are in almost half the counties in the United States.
When I am in the hospital or meeting a new doctor I have to make the decision whether or not to tell them about my Lyme disease. Do I tell them and risk being dismissed, or do I not tell them and risk hiding important information from a doctor?
Many Lyme patients choose to go with the second option, because it is just too painful to be told the illness you battle every single day simply doesn't exist. Lately, I've been going with the first option. I have this honesty complex, and I feel like eventually it will come out; I don't want to look like was hiding something.
The four-person infectious disease team crowded around my bed, and I felt all their eyes on me. A young resident asked the first question, "Why are you taking that medication?" Then, the head of the department asked in a condescending tone, "What is the name of your Lyme specialist?" A resident, who was about my age, said, "You’re the healthiest looking person we’ve seen all day." I guess she was trying to make me feel better.
They wrapped up their questions and then stepped outside my door. I tried not to listen to what they were saying. I heard someone mention "looking up symptoms on Google" and "sending blood work off to unverified labs," then it came, laughter, right outside my door.
I am a well-educated, intelligent person. I approach every problem with the utmost care and consideration. I had to find my diagnosis on my own with no help from conventional medicine. All I could do was sigh and tell myself, "They laugh at what they don't understand," and remain grateful and humble for the help they can provide me with my current issue.
My message for doctors and medical professionals is simple: Use your empathy training. Put yourself in your patient's shoes and think about what they may be feeling.
Imagine going to a place for help in a desperate moment, only to be told what you are have doesn't exist.
Imagine being told your terrifying symptoms are "all in your head."
Imagine being afraid to tell a doctor your diagnosis.
Imagine knowing the only doctor who can help you in an emergency probably doesn't know anything about your illness.
Imagine being dismissed because you don't look sick.
Imagine being made to feel ignorant about your illness when you've spent countless hours researching it.
Imagine being laughed at by a team of doctors.
I am capable of the same empathy. I understand the weighty responsibility doctors have to follow certain guidelines. To that I will ask two things. One, please educate yourself on Lyme disease and look at the controversy from both sides. Two, try saying something like this: "I trust you understand your body, but I see things from a different perspective. Let's discuss how we can work together on this."
While I was finishing this article there was a knock at my door. A hospital volunteer walked into my room with a beautiful vase of pink lilies and carnations from the Random Acts of Flowers program. I was reminded of the overwhelming kindness of people. My doctors here at the hospital want me to get better. Though their approach is not ideal, our goal is the same.
"Give your stress wings and let it fly." - Terri Guillemets
When I want to accomplish something new I find the "no turning back" approach to be the most effective. Humans in general are very good at talking ourselves out of things. For most of the us the first thing we do in the morning is hit the snooze button. Going to yoga is similar for me. I love yoga and what it does for my body and mind, but sometimes I'm good at talking myself out of a class.
Yoga is a big part of my healing process, and ideally I would take 3 classes a week. With chronic illness it's a challenge to work out at all, and right now I go to 0 to 2 gentle or restorative classes weekly.
I need to jump start my yoga practice. Here are some tips I will use to get myself to class and you can use for starting anything new in your life:
5 Ways to Jump Start a Yoga Practice:
1. Put it on your calendar and schedule everything else around it
If you want to attend an "Introduction to Yoga" class on Saturday afternoon, write down the date and time on your calendar, even if you aren't 100% ready to start. It also helps if you plan out your month, not your week. We believe we can do a lot of things in a month, but tend to think our weeks are too packed to add anything extra.
2. Tell someone else your plan
Using the example from above, say your friend calls to invite you to lunch on Saturday afternoon - schedule the lunch after the yoga class. You’re less likely to skip it if you told someone else you were going.
You can also bring it up in conversation, or write a Facebook status or Tweet that says, "Can't wait to take my first yoga class ever on Saturday."
3. Invite someone to go with you
Maybe the friend who called to invite you to lunch can go to yoga with you first, or if you have an adventurous friend bring them along. Be careful not to get trapped in the idea that you will only try new things if someone else comes along though, it will limit your options.
4. Pay in advance
We are much less likely to back out of something if we've already paid for it. This is where sites like Groupon and Living Social are excellent, because you prepay (at a discount nonetheless) and therefore are more likely to go.
5. Offer yourself a reward for following through
My ultimate reward is a Starbucks Chai Tea Latte with almond milk. Sometimes when I'm really nervous about something, I say to myself, "If you do it, you can stop by the Starbucks drive thru on the way home." I try not to do the opposite, punish myself when I don't follow through, this is when I offer myself forgiveness and write down the next class in my calendar.
Plan a bigger reward for 3 or 6 months after your start date to keep you motivated. Maybe a new yoga mat or strap? I've got my eye on this cork block:
What do you want to jump start in your life?
"Say yes, and you’ll figure it out afterwards." - Tina Fey
I'm a fool for water bottles, and the truth is the last thing I need is another one. Nevertheless, I continue to buy them, because they are so much fun.
People with chronic illness drink a lot of water. Many of us carry water wherever we go and try to drink as much as we can throughout the day. It's nature's best detox.
After a while, water can get a little boring, so sometimes you need a cool new vessel to keep things interesting. Here are the ones I have my eye on right now:
5 Water Bottles I Want Right Now:
1. Life Factory
Why I want it: These glass bottles with silicone sleeves are some of the best water bottles out there. Glass is easy to clean and doesn't change the taste of your water. Confession: I already have two Life Factory water bottles. I have a 9-ounce one in green and a 16-ounce one in a pretty turquoise. I have my eye on this 12-ounce one in coral to round out my collection.
2. Kleen Kanteen Reflect
Why I want it: Kleen Kanteen has a reputation of making high quality, food-grade stainless steel water bottles with the goal of eliminating single-use bottles. I love my glass water bottles, but when I saw the design of Kleen Kanteen's Reflect series with the bamboo cap, I instantly wanted one.
3. Hydro Flask
Why I want it: When Lyme patients aren't drinking water, you can usually find us sipping on tea. Recently, I've decided to forego Starbucks chai tea lattes (because of the added sugar), and start making decaf chai tea with almond milk at home. So, I need a bottle that can keep my tea hot until I get to work. This seems like a great solution; it also keeps water cold for those days when it's too hot for tea. It comes in any color you can imagine, but I'm partial to the lime green or "Kiwi" one.
4. Brita Bottle
Why I want it: Those of us with chronic illness watch out for toxins. This inexpensive bottle comes with a built-in filter for easy filling and re-filling throughout the day. Yes, it's plastic, but it's BPA-Free. The filter is good for 300 uses. That's almost a year of fill ups.
5. Define Bottle
Why I want it: I've wanted one of these ever since I saw it on Shark Tank. The entrepreneur who designed it was only 14 at the time. For now, I've been putting fruit right into my water bottle, but I love how the Define Bottle has a separate compartment to keep things like seeds and pulp from getting to the top. I love the design. I was a little disappointed, because the reviews on Amazon say it's too small and doesn't hold enough water, but with a freezable base to keep the fruit cold, you can refill it over and over. Reviews also say it's hard to clean, so get informed before you buy.
Now, don't get me started on travel mugs. That's for a different post.
Do you have a favorite water bottle? I hesitate to ask, because I will want to go out and buy it.
"Pure water is the world's first and foremost medicine." - Slovakian Proverb
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.