Lyme and a Coconut

chronic lyme disease with a taste of nut

Where have all the Flowers Gone?

As I battle some very dark days of my own and recently hear about the beautiful, young woman who died from complications of lyme disease (no other details given, understandably), as well as the four (at least) other lyme warriors who died this year, I find myself growing more and more angry at our primary medical doctors and the CDC who refuse to listen to truth or who knowingly pushes truth under the carpet. So many suffer. So many die.

For a sobering video, watch this beautiful tribute  to the many who have lost their lives to chronic lyme disease and its co-infections – video compiled by a very inspirational lyme warrior and advocate, Lisa Hilton.

Lisa Hilton comments beautifully in this blog post, entitled “Lyme and Suicide, a Problem Ignored.”

When in the thick of the isolation, despair, anger, and fear of this illness, it is hard to sit down and write a blog post.

It’s true you lose those close to you. People don’t know what to do with chronic illness. Lovely, caring, wonderful people who legitimately care for you just don’t know how to handle such long-term misery. Understandably, they don’t want to be around such suffering. They tire of hearing the latest symptom. It’s easy to send the meals the first few months of an illness. It’s easy to get the phone calls and emails. But one year, two years later, it’s hard. People have lives of their own to live, struggles of their own to endure.

People in my life are wonderful. They love me, they worry about me. And I understand – they don’t know what to do. I don’t think I have seen anyone but one friend in a few months. With me losing the inability to go out to friends’ houses, to church (which I am very upset about), to open mic’s I used to frequent, even to stores to get the kids new clothes or to the area food pantry (I can’t go alone anymore)…the visual and auditory stimulation is just too much…it’s very difficult to not be able to go out into public. Few people are able to come to me and few people really want to. I understand.

My days are very bleak. Family life very stressful. Lately I am clinging to the side of the cliff. I’m trying. Trying to remember God is with me, trying to remember that He is good and I am taken care of, loved, cherished by a King who is bigger than all illnesses, who has it all in His hands even though I am flailing out of control.

Still, hearing about yet another suicide in the lyme community and thinking about all the families left behind…thinking about all the doctors that ignored these people, the doctors that told them their symptoms, even their illness didn’t exist…it enrages me.

I was talking to a lyme friend over FB messenger and she and I both shared our despair, but also how mad we were at Lyme and how badly we want to advocate on behalf of this disease. Too many people are not listened to. Too many succumb to the hopelessness and lies that come with such an insidious disease.

People must know. You must know. This is real. This isn’t some mental illness problem that people succumb to who are just too weak to fight. This illness grabs the strongest person and brings them to their knees.

It all seems so hopeless, doesn’t it. To those who don’t have lyme, you don’t really get it until you “get it” and it’s easy to look at a person and say, “they look fine, what’s the big deal?” To those who do have lyme, it certainly seems hopeless.

But even as I cling to the cliff as I do now, I remember God. I remember His promises. I remember that the cliff I cling to is actually His shelter and I will use Him as refuge.

For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock. – Psalm 27:5 (NIV)

A small tick can do much.

A big God can do much more.

Please educate yourselves about lyme disease – how you can protect yourself from getting bit by a tick and the problems that follow, but also educate yourselves on behalf of your children, family, friends. Lyme needs no passport. No one is immune. It’s not just in New England; it’s in the West, Midwest, the East, even overseas.

Share information with others. This disease has been pushed under the rug for far too long. I will not be silent. Too many people have lost their lives.

clinging to Him,

— lymie out…


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Follow Lyme and a Coconut on

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 596 other followers


Invisible Illness Awareness

One Year of Bee Venom Therapy

December 18th, 2016
1 year of Bee Venom Therapy!

A Literary Magazine that gives platform to writers and artists with invisible illness.


Staying grounded while recovering from Lyme disease

One Soul Speaking

A journey back to who I am

Bloody Lymey

A Blog About Living with Lyme Disease

Lyme, Arizona, and me

My journey in getting treatment for Lyme Disease

The Daily Advocate By Painspeaks

Advocacy is FREE and its never-ending ripples spread awareness for all worthy causes!

The Lymie Limey

A Lyme Disease Blog from Bruce county ontario


Recovery from Lyme Disease, chronic pain, and fatigue

From Lyme to Life

How the light gets in.

%d bloggers like this: