Tag Archives: Chronic 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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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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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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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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So Let’s talk about symptoms

I have chronic Lyme disease, but I also have several Lyme co-infections and numerous other health complications because of these.

Because of the complexities of Lyme disease, and my own complex situation in particular, I tend to be rather vague when writing about my illness. There are so many topics to be covered, a vast number of subcategories within the category of Lyme disease.  Continue reading

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On Turning 30

I’m feeling older than I did a year ago. My body is less forgiving of simple, basic movements –turning to check my blind spot, putting my toddler into the baby carrier, standing on my feet for more than a minute…

I find myself quoting the words of King David: “How long, O Lord…?” Continue reading

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Change is in the air

The green tree leaves are changing to vibrant red hues. The air is crisp. (I could see my breath the other day.) As the sunny skies turn gray here in the Pacific Northwest, my mind turns to the changes ahead. With these atmospheric changes, there are changes in my health. Continue reading

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“What does Lyme feel like?” by Lori Dennis, MA,RP

I stumbled across the below post last week via a Facebook support group that I’m in (for people with Lyme disease).

I don’t read others’ Lyme stories, blogs or articles as often as I’d like – for many reasons. Why? I’m interrupted by my toddler. The pain from typing overwhelms. Or blurry vision sets in. (And the list goes on). Continue reading

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Why I don’t easily Trust Doctors

A little story. Or intelligent rant, as my husband puts it.

I had my blood drawn the other day. (Lucky me.) Upon exiting, I was given the choice of using tape versus a bandage to cover the blood. Ironically, I wasn’t given the choice of needle used for the procedure.  Continue reading

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Don’t mess with the sleeping baby

Have you ever been pulled over on a five-lane interstate with a sleeping baby in the back? I haven’t… until today.

Before this unfortunate encounter, I spent an entire two hours in my car, putting my toddler to sleep and then making sure he stayed asleep. He needed it bad. Continue reading

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