Tag Archives: Lyme Disease

How Lyme Disease Takes A Village

Lyme disease can leave people feeling alone and abandoned.

Alone because no one understands. Even their closest friends and family members have trouble understanding.

Abandoned by the medical community.  Lyme patients are forced to pay out-of-pocket for treatment costs, and in a way, forced to become their own doctors.

In many instances, symptoms like anxiety and depression are made worst based on the circumstances of living life with a chronic illness. It’s important to live without stress so that your body can heal. Ironically, it seems impossible to not be stressed, as long as you are severely ill.

It’s a cyclical battle that is truly torturing, and it affects the entire family.

Over the years, I’ve found it difficult to know how to include people in my story. To let them be part of my life. And to be a part of theirs as well.

People have often said, “Let me know how I can help.” However, it is hard to know how people can help. Especially with having moved a couple thousand miles from my hometown, there’s this stigma that exists. Like, “you made a bad decision for having moved.” As if my struggles with Lyme disease are of my own doing, because I chose to move away from the land I knew.

But do you wanna know something?

I moved away because I wanted to. Not to make things more difficult, but because my husband and I had an itch to be elsewhere in life and so we decided to do something about it.

I moved away because I’ve lived enough years on this earth to know that when a person desires change, they need to be willing make change happen. Willing to do what’s uncomfortable, unfamiliar and risky.

So we went for it. Despite the fact that I’d been recently diagnosed with chronic Lyme disease, and despite the fact we were pregnant.

And guess what?

Moving across country was worth it.

Sure, life since uprooting has only grown more complicated and chaotic. But it was worth it.

There’s always going to be challenges in life, no matter where you are, and there’s always going to be pros and cons too. I know for a fact that had we not moved, we would have been stuck with regret, wondering what we would have missed out on.

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It’s amazing to look back on the two short years since moving to the Pacific Northwest, and think about the strong community of friends we have acquired.

We have a tightly knit support network.

These friends are my family.

They love unconditionally, serve humbly, give generously and support me in the ways they know best. They don’t ask questions, and if they do, they ask purposeful questions – as opposed the vague, non-committal, quizzing type questions I’d grown used to previous to having moved.

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These everyday hero’s have influenced my heart in a way that is lifesaving.

I am forever grateful...

  • For the gesture of a friend who said, “Can I come get Gunther from you today? You need space! And rest! If you need extra time I’d be happy to have him stay for dinner.”
  • For the same friend messaging me, “Even a family with average workload and tiredness has trouble keeping a house clean. I imagine it’s a lot harder for you guys than most people and you definitely work harder than most. You guys deserve a break.”
  • For the online acquaintance who reached out: “My husband has Lyme so I know how awful it is. You’re welcome to use our sauna to detox whenever you’d like. We’re glad to be able to help you in any way we can.”
  • For the many who have sent money electronically and in person, to support my healing path on GoFundMe.
  • For the two friends I barely know, sending money to ensure we could buy gifts for Christmas this last year.
  • For a very special “Gma” who brought my family baked sweet potatoes on a weekly basis.
  • For the thoughtfulness of a mom in my community who organized a meal train for me when I began alternative treatment. Who also brought a box of food and vitamins when she heard our house had the flu bug. “Sorry to hear you’re sick with the flu!” she texted. “I loaded up with goodies at the store and I’ll be home soon to cook. Don’t die before I get there!” Who has since made herself available to come over to fold my laundry and scrub my toilet.
  • For the many who joined that meal train from a local parenting group, and worked with my extremely limited diet, bringing me nutritious, home-cooked meals.
  • For the selflessness of a mom in that same community, whom I’d never met: “I have clothes for your little boy – two big boxes that are washed in free and clear detergent and ready to be worn!” Who has since brought me home-cooked meals, and gone grocery shopping on my behalf.
  • For still another mom who said to me, “I want to offer to come do some professional cleaning. I houseclean for a living and would love to help you with some of the heavier stuff. I’d like to schedule something regularly. Whatever works for you.”

Are you seeing a common noun here, by the way?

Moms.

Moms are amazing supporters.

  • I’m grateful for the friend who lives down the street from me, who’s blessed me with the coolest hand-me down toddler clothing and toys. Who lent me her bathroom for a day so I could relax in her bathtub. Who became my chauffeur when we had car troubles, and gave me baby free time.
  • For the graciousness of a friend who said to me: “I’m going to come by three days a week – bring you food twice a week, and help out with Gunther and chores. Also, I want to watch him so you can have a date once a month. It helps me to help you, because I love to help people!” I didn’t know how serious she was about all this (’cause, um? Can you say commitment)? But she meant every word.
  • For the random text, “I’m going to the co-op right now – can I bring you some groceries?! What can I bring for you?”
  • For our new-at-the-time next door neighbor: “We’ve been thinking about you. Are you okay? Let us know if you need help.” Who followed up a week later with: “I was thinking, we’re hiring a housecleaner to come twice a month, and would like to send her team to your house right after cleaning ours. We’ll cover the bill.” Who brought a team of burly men with drills over for a day to help organize our home. Who covered our son with unending amounts of love and affection, and who weren’t afraid to look me in the face and tell me they were sorry for the pain they couldn’t see or understand.
  • For the other next door neighbor who conveniently works for a company serving people with disabilities, and gave me a walker, free of charge.
  • For my “Buy Nothing” community who brought my family home-cooked meals, food and supplies while we were going through a particularly hard time with unemployment and car trouble earlier this year.
  • For my acupuncturist and chiropractor who are willing to work with my limited budget. Who are dedicated to investing into my health by giving their time. Who share with me their gifts of healing, and educate me along the way despite my millions of questions.
  • For the nurse and baby-wearing enthusiast in my community who offered her time to clean. “Let’s ask Kristin what we can do that would be most helpful to her,” she explained to her side-kick toddler. Who brought us eggs from their backyard chickens. Who offered me healing touch in the form of a special massage with essential oils.
  • For a dear friend who knows the troubles of Lyme first-hand, who has come over to lend her ear and her heart. Who has shared with me countless meals and tea times. Who exchanges texts with me around the clock, and is there at the click of a phone call when I need her the most. Who gave my husband and I a gift certificate to a fancy restaurant and babysat our then-newborn, so we could get out on a date. Who has lent me her bathtub and made me feel oh-so pampered with her DIY facial masks.

Oh. My. Word.

I could go on!

I know I’m forgetting examples and stories. You guys – look at this list!

Not included are the men and women who have believed in my husband and made themselves available to supporting him, especially in recent months. Those who have encouraged him in his role as a husband and father. Who have given to me, by giving to him.

I am fortunate beyond words. I am taken care of, and my needs are being looked after.

Moving away from family and all that you know is challenging, but it doesn’t mean you have to live life alone.

I was talking with a friend recently about how I struggle with being relationally engaged. I have a lot of friends here, a surprising amount actually, for having lived here such a short time. But I don’t feel plugged in or invested in their lives.

I am on the receiving end far more than the giving end, and that is difficult. The truth is, I feel like a burden, or that my family is a burden, to everyone around us.

This friend reminded me that we are going through some exceptionally difficult things – that as long as she’s known me, our troubles have seemed to never stop.

She also reminded me that friendship means more than helping each other through life’s challenges.

It means supporting someone and loving them despite whether or not you think they deserve your support. It means spending time together, even if no words are exchanged.

In a way, I feel like friendship could be synonymous with health. Because it means I am seen. My burdens are shared.

I am being given hope each day that I don’t have to go through this battle all alone.

 

 

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What It Feels Like to Have Lyme Disease

Dealing with Lyme Disease can be challenging enough based on the complex symptoms alone.

What makes it ten times more challenging, though, is the fact that (for most with Lyme Disease) our symptoms are invisible.

We try to describe what we’re going through, but the words get lost in translation as the hearer sees us as normal, healthy individuals.

How can we be understood? To our friends, the medical community, our own families?

If I were to describe to a healthy person what a day in my shoes feels like, this is along the lines of what I might say.

If you are healthy, and truly want to understand what Lyme Disease is like, I ask you to read the below when you have enough time to let the words register. Really try to enter this world for a moment.

  • Lyme disease – that is, chronic Lyme, also known as late-stage Lyme, or post-treatment Lyme disease – feels like you’re running a marathon – uphill – just to get through the day.
  • You feel like you’re at least fifty years older than you are. You’re slow to get around, you have arthritis from head to toe, and you suffer from memory loss. You use one of those jumbo size pill boxes and have at least two kitchen cupboards dedicated to medication and supplements.
  • You feel like you’re on a seaside ship while walking throughout your motionless house.
  • You have to work twice as hard to concentrate on anything, whether reading words from a book or listening to a friend tell you a story.
  • Your head pounds and aches as though it were stuck in a vise.
  • You feel like you’re drunk when you’re sober as can be – clumsy, dizzy, and struggling to put sentences together.
  • You feel like you gave birth last month, when in reality your baby is over a year old. Your body couldn’t be slower to heal itself.
  • You’re borderline bipolar.
  • Your mood swings match those of a menopausal woman. You are sensitive to temperature, hot one minute, shivering the next.
  • Your legs give out from under you without any notice, and leave you to dragging yourself around the floor like a crab, crawling like a baby, or having to be picked up by a loved one (or pushed around in a wheelchair).
  • When you walk, it feels like you’re walking on hard legos, or a beach with sharp stones. Sitting back with your feet up, it feels as though someone is massaging the back end of a hammer into your soles.
  • The same goes for your hands. It’s this constant, dull, nagging pain that gets sharper with impact or activity.
  • You feel a tightness in your chest, and you hunger for air. You feel like you’re stuck in the middle of the ocean without a raft.
  • There is no such thing as enough sleep or rest. You could lie in bed all day, every day, and still be too tired to move.
  • You haven’t had a peaceful night’s sleep in years, and you’ve forgotten what it’s like to wake up feeling refreshed.
  • Your hands and fingers get numb and tingly on a regular basis.
  • The same goes for dizziness. Vertigo follows you wherever you go, and gets worse in busy environments.
  • You feel like burrowing your face into a hole most days, not wanting to deal with anything or anyone. Not your pain, not your to-do’s, not your errands, and some days not even your own family.
  • Strong odors – or sometimes not even strong ones – make you sick. Your eyes burn, your throat closes up, you get a migraine. You cover your nose with a scarf and hang out by the toilet, waiting for the vomit to come.
  • Your soul needs daylight, but you’re sensitive to light. More than 10 minutes in the sun makes you feel like you’re having a heat stroke.
  • You can’t eat gluten, dairy or sugar. Unfortunately for you, these are foods you crave all. the. time.
  • You hate your body – not your physical appearance, but the fact that you can’t escape the afflictions you feel.
  • Some days, you want to die – not because you’re suicidal, but because the pain is that bad.
  • You feel like you’re crazy. Because as much as all of these things are very real to you, no one else can see them.

Please know that none of these examples are exaggerations.

This is a picture into life with chronic Lyme disease.

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To the Passenger who Called Me A Slut

I don’t even know what you said in full, the wind disrupted the sound waves as your words were on their way from your mouth to my ears.

“Slut village?” “This isn’t Slut Village?”

Whatever you said, it initially made me chuckle. Receiving catcalls and obscenities is something I’d expect in my college town. And something that did happen often while I was in college, not because of how I acted, or how I dressed, but because men are men and that’s all. Continue reading

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United for Medical Freedom

A woman stands with an umbrella, rain steadily dripping above her head. She holds a sign: “My child, my right.” Pushing a stroller with two young ones, she makes her way closer to the front to hear the speaker.

A man in overalls steps in place to keep warm. He grins as we catch eyes. Passion emits from the microphone, and he is the first to applause. Continue reading

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Never Give Up Working With Your Hands

“You look more youthful.” The words hit me with surprise. 

Here I was, gripping a beast of a camera, one on loan from a good friend. I wanted to cry with the pain its weight brought to my arthritic fingers and wrists. But instead, I beamed with happiness. A youthful sort of happiness, as my husband pointed out. Continue reading

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It’s Still Hard | A grief poem

Today, January 14th, marks the due date of the second baby my husband and I lost to miscarriage, now four and half years ago. Words fail to describe the existence of pain that still resides in my heart as a result from enduring such losses.

In remembrance of what today should have been, I’m publishing an old excerpt from my journal. Continue reading

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A New Year’s Letter to My Decade-Younger Self

Dear Self,

You think it’s pretty crazy that it’s already two-thousand-and-seven, don’t you? You wish you could have accomplished more in this last year, but you’re sitting down with pen and paper, eager to write out a full list of all the amazing things you want to accomplish in the new year.

After an hour of journaling right before bed, your hand writing at awkward angles as you use your pillow for a desk, you come up with something like this.
Continue reading

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Beyond Me: How Many More Will Suffer?

I am not the only person suffering from chronic Lyme disease. And chances are, I am not the only person you know who has it.

Have (or how have) you been touched by Lyme disease?

Perhaps you have a friend who has Lyme. Or a sibling, parent or child. Or multiple siblings or children. Perhaps you don’t know anyone personally, but have friends or relatives who do. Continue reading

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I Hate You, Weaning

I hate you, weaning. I never meant to meet you. Yet here you are. Making my child scream like he’s dying. Making my heart cringe like it’s dying too.

He wants his mama. But that’s not all, he wants mama’s milk. Just the way he always has. I have to teach him that mama can’t offer milk anymore. Mama is starting a new treatment next month and it just wouldn’t be safe. Continue reading

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You Know You Have Fatigue When…

In high school French, I remember learning a lot of funny sounding words. My friend Rachel (Sylvie) and I created a list of favorite French words. At the top of my list was “raplapla,” an onomatopoeia meaning “worn out; tired; exhausted; fatigued.”

Over a decade later, I find it interesting that one of my favorite sounding French words has become the soundtrack of my life.  Continue reading

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