What? You’ve GOT to be Kidding!

Yes. My husband has Lyme. No, that doesn’t just mean we have bad luck. And yes, it is real. No, I’m not suffering from Munchaussen by Proxy.

And I’d give anything to have this not be true.

So, last year, my husband ended up in the Urgent Care with Bradycardia (low heart rate) and a skipped beat. My in-laws told him that heart stuff runs in the family and not to worry. The Lyme friendly Cardiologist said that he ought to get a Lyme Test, because what was happened to him was suggestive of Lyme.

Here’s where I want the do-over. If I could turn back time, I would have gotten rid of the dog, sold the house, and moved into a tiny apartment that we could manage financially, and in terms of yard work, etc.

Then, we would have reached out to our community, joined a church, gotten born again — anything to take some of the stress off of him while the rest of us treated.

Instead, he juggled 5 jobs. Watched the economy suck the life out of some of the income. We juggled medical expenses, house payments, neighbor anger over the yard looking like hell, fear, anger, sick kids — the kind of things that you can’t escape.

And now, he is as run down as the rest of us, has an infection in his heart, and is the proud owner of a slew of angry bacteria and parasites: Babesia, Bartonella, Ehrlichia and Lyme.

So, how does it happen that everyone in a household can have Lyme and all the wicked co-infections?

Most people understand that many infections can cross the placenta. And, when most people learn that the Lyme Spirochete is similar in structure to the Syphillis Spirochete, it makes sense. But no one wants sexual transmission to be a player in this.

Just like I believe that everyone who gets vaccinated will end up with damage to their body, I don’t think that everyone can easily contract tick borne illnesses through sexual contact.

I believe that the terrain of your body needs to be rough and stretched and overwhelmed in order for that to happen.

And, it could be, that all those years spending weekends and summers on the land where his parent’s retirement home sits, gave him a bite or two, or more. Sometimes it takes a car accident or a robbery, or a great loss to trigger Lyme. It doesn’t always “get” you in the first few weeks after the bite. Sometimes it just takes the stress of a sick family to drag you under.

I don’t think we are unlucky. I think we are common. Illness causes emotional stress. Financial Stress. School Stress. Work Stress. The fact that my parents are dead, and my siblings are either busy with their own grandkids, sick themselves or busy with their lives, doesn’t help. Illness causes friendshifts, a fact that I’ve bemoaned in many other posts. Not a whole lot of community involvement fits into your schedule when you are chronically ill. Potential support system or friendships have lapsed because we are “all Lyme all the time”. There are so many factors that cause stress.

I don’t even want to think of what the future holds. I am having the worst Babesia herx I’ve ever had. When I leave the house, my air hunger (loud, deep, gasps for air) is frightening. My kids are used to it, one even does it himself. The rest of the world? Not so much. So, I only go out when I need to. And, soon, I will likely be grocery shopping online, instead of visiting my neighborhood co-op.

Today, my husband had rehearsal for an upcoming show, and then he had to go to work at one of those other jobs. He looked exhausted. Broken. Tired. I’m scared. I just don’t know what the future holds.

So, what do we do? Sell the house? Move in with his parents up north in the Tick Belt? Start participating in extreme sports until one of those dangers takes us away?

I don’t know what the answer is. I just know that I can no longer rely on my husband to pick up my slack, like I used to. When our son needs to be at a church a few miles away at 7:20 am, I get up. My body doesn’t want me to, but I do it. I didn’t used to. I let him do it. I let myself be sick. I let myself take time to rest and heal. That doesn’t exist anymore.

I would imagine, we will dance back and forth like I do with the children, hoping that we don’t all herx on the same day. We will check in with each other every day and see who needs the most help, who has the most brain power, energy, and strength. We will continue to welcome any offers of help. And visits. And phone calls. And rides.

We need to make some choices. Or a draw in a miracle. I might even try to build a Time Machine.

I know we aren’t the only ones with troubles. Everyone’s got their things. I just wish our thing didn’t involve all of us. One sick kid, I could maybe handle. Sick husband? No problem. Sick me? Sucks. They all suck. But combined? I’m just tired.

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5 responses to “What? You’ve GOT to be Kidding!

  1. I am so sorry to hear how it is. Wow. What an amazingly tough assignment.

    Part of me wants to somehow magically fix it all, or figure out a magic solution that would somehow take away the (currently) overwhelming challenge that you and your husband are confronting. That’s a fantasy, of course.

    But I do think there must be ways that you, and the people around you, can and need to respond to your need. Not only with short-term help, but also in ways that help you guys come up with strategies, make decisions, maybe even call in miracles.

    Did you ever read the book Wishcraft? Barbara Sher (author of) has this idea of calling a meeting of one’s friends, kind of like the old barn-raisings. The circle helps the meeting-caller to brainstorm solutions and helps to network for resources for the meeting-caller’s project.

    Your project isn’t starting a business or launching a career – it’s more compelling than that. It’s problem-solving one of the tougher sets of challenges faced by any individual or family that I know personally.

    For which, of course, you guys would be eligible for disability if medicine understood what’s up with chronic Lyme & Co. But until that day comes, what else is there but something like old-fashioned mutual aid?

    I know you could use a lot more folks in your circle, but that doesn’t mean that you and your people can’t make a start. (I myself am very busy now, but will have more time after May 10 or so.)

    Does any of this make sense to people? Anyone want to be part of a family solidarity-conspiracy? 🙂

  2. What a challenge this is, I’d been hoping that your husband could stay clear of this, for you all, who already have beyond what can be managed, and for myself as well, since I hold my breath that my husband won’t ultimately get what I have.

    Everyone keeps saying that Lyme can’t be contagious, oh, no, that’s just not possible (perhaps because the possibility is so horrifying and then leapfrogs the disease into a frightening, ever-expanding uncontrolled global epidemic), but my heart, intuition, and careful reading of the patterns of Lyme infestation all say otherwise.

    Paul, yes indeed, I believe in loving community solutions to individual needs, especially crisis. Count me in the new “barn raising” for Jeanne and Robert. My resources are scanty, but my will is strong. I think a new part of the Lyme community should be dedicated to marshaling the resources toward all those in need.

    “All Lyme All The Time” is where we with Lyme live, sometimes we need the resources dedicated to our own needs, sometimes we have extra to devote to others. Finding my Lyme diagnosis ended 20 years of wandering through the medical community and continuing progressive deterioration, and feeling like I was an excuse-making failure. Right on – I’m Lyme All The Time – that’s where I am, what I have, and defines the pit I’m in, and gives me vigor and understanding to grasp that I must take all the action needed to climb back out.

    Where else could we be except for All Lyme All The Time? In denial? Screening others from the devastations we live with?

  3. Know you and your family are in the thoughts and prayers of this stranger from Lexington KY, who knows from my own front-row-seat of my own Lyme Horror Film, a tiny bit of what you’re experiencing. Hang on tight. Don’t give up. One day the Light at the end of this long and terrifying tunnel will start to glimmer.

  4. i hear you…
    5/6 of us have it.

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