Nothing Day

Today is a nothing day. Twelve hours in bed, the day spent going nowhere, doing as much of nothing as possible. In attempts to stave off the vertigo (vestibular migraine?) I am taking this Sabbath at home. Started a steroid pack to also try to fight the migraine. However, rather than cause me to have energy and insomnia, I am finding myself very, very tired. And no less dizzy.

Thankful for the appointment at Lymestop that is booked for February.

And this verse: Heal me, O Lord, and I shall be healed; save me and I shall be saved for you are my praise. (Jeremiah 17:14)

 

 

Tipping over, keeping up and Grace

VictoryandLyme has been pretty quiet for a while. That is, in part, due to the busyness of life post-Lyme, and in part due to some symptom return. That sentence may seem to contradict itself. Maybe it does. Maybe life does sometimes. Maybe wellness from Lyme will always look different than life before Lyme.

Vestibular migraines making me feel like I’m tipping over or backwards, or spinning around are warning me that I need to slow down. Pace myself. Rest more right now. That does not negate the victory I have. In fact, I came across this blog post from Grace Alliance, an incredible ministry with resources for mental health. I now follow their blog and recommend it to anyone (it’s now in this blog’s sidebar under “blogs I follow”).

Here’s a question that struck me:

How do we survive – let alone thrive – when we feel incapable of keeping up in this speedy, efficiency-drunk culture?

Good question. When I can tell I’m not thriving, barely surviving, I know it’s time to slow down. Repostition. Consider what matters most. I love how the blog post goes into an unexpected passage of scripture to demonstrate the point. I would have thought there would be reference to the “three mile an hour God” such as talked about by John Swinton  in his book, Becoming Friends of Time, quoting the book by Kosuke Koyama. But they did not. The author describes how Jesus slowed down the crowds in Mark 6, feeding over 5,000 people by putting them into small groups for a picnic:

These are broken people sharing their stories and finding common ground with one another through one thing: their need for Jesus. So, while it would seem tempting for Jesus to speed things up and “get it over with,” He intentionally slows everything down and throws a magnificent picnic. I’m convinced that Jesus does this because He is not solely interested in feeding fish and loaves to hungry stomachs. He wants to feed a hefty portion of belonging to hungry souls!

Belonging. That word pops up all around me these days, as the organization I work for is now called All Belong and our tagline is “faithfully building belonging.” That’s nourishment. It fulfills so that there is survival and beyond that even thriving. It takes time. No wonder I like this Grace Alliance blog. They supply mental health information and encouragement. That is a huge part of thriving. In fact, it is essential for survival. Those who focus on mental health have taught me things like pacing myself, listening to my body, balancing appropriately work, play and rest and the importance of worship for my well-being. Like the hungry crowds on the hillside eager for their loaves and fishes, or worse, like the culture I currently live within, I want my hunger satiated right away, jobs accomplished quickly, answers immediately. I get wound up and dizzy.

So, to start over, I breathe. Rest. Soak in the belonging I have in Christ. And thank Him for reminders and words that steady me.

Connect the dots: a Lyme from point A to point B

Here we go. I had wanted to research and post about the Lyme-Fibro connection long ago. But I learned something: Nothing stays at the center of your attention when your family is being impacted by other things in major ways. So goes my Lyme story….or so I thought. Now, my husband’s chronic pain may be leading us right back into the Lyme story.

He is now in a 10-week program working with Mary Free Bed Rehab clinic to learn how to care for his body, understand his pain, and live life as healthy as possible. I’m so glad for that, but being me, of course, I can’t let go of the idea that something must be causing the Fibro –which is a diagnosis now found in a couple of other members of my family, who live far away, whom I desperately wish to help in some way! My problem-solving, not-going-to-just-live-with-it brain has been chewing on things now. And my spirit has been aching for these people dear to me whose suffering seems senseless. Yet, I know also that God’s sovereignty, plan and provision are far higher and greater than I can fathom, and what may be in the works is beyond my comprehension. I soak in and pray out the words I find in Scripture that hit on this tension: “this present pain is nothing compared to the all-surpassing glory awaiting us” (Rom. 8:18), “He works all things for the good of those who love Him” (Rom. 8:28), “Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer” (Ps. 3:1), “but this happened so that the work of God might be displayed in his life” (John 9:3), “the Lord comforts His people and will have compassion on his afflicted ones.” (Is. 49:15) and others I come across which give me hope, cause me question, speak my heart and/or give insight into what’s going on.

Right, so what I’m finding on Fibro-Lyme link…

Envita is a treatment center I have heard a couple of times in the past few years, but today I came across their article on the link between Fibromyalgia and Lyme. While I personally have only heard a couple of stories about Envita’s treatment, this article written in 2013 is very well-put in the way it describes the Borrelia infection, and why it scrambles the immune system. I found material from as early as 1993 connecting the dots between Fibro (known as FMS), and Lyme/Tick-borne illness (TBI), and the “complex” of conditions that make up these diagnoses.

Here’s a 2017 blog post on FMaware.org (a fibro focused site) from someone with first-hand experience and a well-written explanation for Lyme causing what was diagnosed as Fibromyalgia.

I am cynically laughing at this study done in 1992 showing how fibro was diagnosed in 8% of the Lyme patients in the study, and those who participated in the study were treated with a maximum of 4 weeks of ceftriaxone (an antibiotic that is not fun, pretty strong, but in my experience did almost nothing on its own), and one of those patients got symptom-free. Why do I laugh? Becuase I can’t help but yell (in my head): “duh! I could have told you that!” –as the Envita article (link above) puts it, “Clinical experience and in-depth testing have begun to point to Lyme disease complex, coinfections and weakened immunity” = the perfect storm that creates the pain-cycle known as FMS, or as Fybromyalgia.com puts it: “a central sensitization syndrome (the central pain amplifier being turned up)” which is clinically diagnosed as FMS. This central sensitization has been studied a little, finding changes in the brain when it is present. What is really fascinating to me is that the neuroplasticity of the brain –usually a really good thing, in that it is what allows us to keep learning (growing new neurons and creating new neural pathways… which adds up to our brains being able to take in, process and use new stuff), is also what can go sideways and ends up literally causing pain for no reason. This TED-talk (one bit of homework my husband was given) explains that more, if you’ve got another 15 minutes.

Speaking of TED-talks, I’m reading “Talk Like TED” to help me professionally, and finding I love reading it personally, and it’s helped me get back to this blog, actually, which has been silent for far too long. Why? Because in reading it, I’m having to discover what I’m passionate about, and what I’m passionate about is somewhere along the lines of helping people do life better. I hate living with the same-ol’ if that’s not helpful, healthy or edifying. I’m excited by talking about new and better, closer to God’s perfect, closer to His until-perfect-is-reality-on-earth grace.

Last link, and that’s because of the stream-of-consciousness led me to the word “grace” –Mental health is a HUUUUUUUUUUGE part of all of this, and our bodies can’t win the physical battles without the mental battles being won first and all along the way, in fact the mental battles may be more important, and more closely linked to the spiritual battle ensuing, in which victory is ours in Christ, and is absolutely essential to our lives now and to come. So, if that’s where more support is needed, I’m learning about resources like Grace Alliance and their free materials and their support groups across the nation. I know Key Ministry  is a fantastic organization putting out blog posts, research and books like Dr. G’s “Mental Health and the Church”. Caregivers need a specific flavor for addressing the encroaching inner darkness, for which my favorite resource is “The Heart of the Caregiver” -also with support groups all around the nation, online, and with a book of that same name, newly published in June, with a second book coming this fall (2019).

-there are more, there will be more, but this is already way too long! Here’s a simpler connect-the-dot activity for some decompression: tortoise_dot-to-dot and it’s a tortoise because a tortoise or “turtle only travels when it sticks its neck out”. –James Bryant Conant

When you get Lyme, make Lymonade

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I saw a billboard today for “Lymonade Sprite” and got excited for a moment that Sprite had picked up the Lyme cause and was doing something amazing with it. Alas, they just added “splashitivity” to the soda. Someday, perhaps we will get that sort of attention. 

In the meantime, I gleaned something from my pastor on Sunday that applies very aptly to many people with Lyme. He talked about how, in lonely situations, tough times and chronic conditions, “people don’t get it” –true. A mantra of Lymees/Lymers. How many conversations I’ve been a part of, and Facebook groups or threads that go on about family, friends, doctors and others who “don’t get it”. What my pastor lingered on that so intrigued me as he exegeted on Jesus’ last night with his disciples was this: Let them not get it.

That is what Jesus did as he came to his disciples for the third time and found them sleeping when he wanted, needed friends to be with him in his suffering as he sweat blood and poured out his heart in prayer. He said “Go ahead and sleep” (Matthew 26:45 NLT). He let them not get it. Colossians 3:13 says to forgive others for their faults. (Even when we don’t feel good and really want their support and understanding and for them to use energy since we can’t, to maintain the relationship.) Luke 6:37 says not to judge others, to forgive and we will be forgiven. (Only if we forgive? ouch.) In Philippians 3:10, we are told about “the fellowship of His sufferings” –now that is what I’d call a way to “embrace the suck” as many people are now saying is a healthy way to accept difficulties in order to find victory in life with or despite them.

While this was a Palm Sunday message, I was so impressed by it being about the loneliness of Jesus’ suffering, and how my pastor brought it so poignantly to the raw places of real life, once again reminding me that the Bible is an introspective text that never fails to have details for teaching me about my God and myself. 

This past weekend was my monthly “second Saturday Lyme time” at a local coffee shop. Only one other person came, but we had a wonderful discussion and prayer time for others who knew we’d be there and asked for us to pray. Not exactly the kickstart to Victory Over Lyme, the non-profit organization, I’m looking for … but perhaps the best place for it to be for now, and until God does more with the idea. Patience. Trust in His timing. (Ugh, now I have to do all that AND forgiveness? This to-do list is keeping me busy -and someday maybe I will learn that’s the point and all I should stay busy with all the time.)

Fix

If it ain’ Baroque don’t fix it, says the old art-joke. I have had to come to terms with several things lately that simply cannot be fixed (this side of heaven). Attitudes, health conditions, plates, cups and bowls. My kids like to remind me that “this is why I can’t have nice things” every time I break something. Which is often.

Some things take more effort to accept in their broken state than others. I can accept a broken bowl, even several glasses or my favorite sweater much more easily than I can accept attitudes, ways of thinking, disorganization and health conditions that leave people hurt, lost, confused, sick, outcast or in a mess. That is probably one reason for this blog- an attempt to “fix” the wrong thinking, the lost feeling, the health conditions that I’ve seen ways of getting better from.

Sometimes, though, a “fixer” attitude is not so helpful. I have to learn to listen better. To simply let people talk, to pray, to acknowledge, and to ask before I go into “fix it” mode with suggestions, ideas, and actions. (I often end up breaking things when I rush into something too quickly!) I have to do this with myself, even, and have to give myself grace and take time to truly think through how to make things better when I mess things up, not always rushing into fixing it all. Having Lyme helped me learn that about myself. It was a big project I took on to fix about my life. Did I fix it? Somewhat. I found things that helped me, and I feel good.

Some things are not “fixed”. They remain. Gluten intolerance, for example. But I can live with these. My sister is going through Chemo for lymphoma. Our prayers are that it fix things, rid her of the cancer, and allow her to get on with life. My husband struggles with his health, living in pain daily. His condition may not be fixable in the way Lyme was for me or cancer can be for my sister. It may be hereditary, a condition with no cure. As Teepa Snow describes the prognosis for Dementia, “Until there’s a cure, there’s care”. That is harder to swallow. The goals are different. Care is not as fun as fixing. Not as gratifying, heroic, or glamorous. Perhaps that is why so many couples who have a child with a disability end up divorcing, why depression is so prevalent in caregivers of aging parents or spouses or children with (unfixable) conditions requiring significant, ongoing care.

But here’s the thing. We are not part of the human condition in order to fix it. That’s already been done. We are here, living this life of brokenness, to accept His fix. Most of the time, in my experience, that means surrendering my ideas of what the problem is and what the solution is. Pain, discomfort, illness –these are not the problem. They are the all-too-real ploys of the Enemy to distract and distort our purpose: to glorify God. Doing that in, amidst, in spite of our conditions –now that’s where we find our fix. Joy.

Next post will be more informative, with links to new doctors, researchers and options for alternative medicine, healing and techniques I am learning about. Promise.

Snow day

A phone call in the wee hours from a robot:

This is an automated call to notify you that school will be closed today due to inclement weather

When you work in the education world, or you are a typical child in school, this is like a bonus gift and worth the disorienting interruption of sleep. But today that call got me thinking differently. I already had two other places to be if not working at the school today, one being on a flight to attend my uncle’s funeral. Since the airline did not make the same call the schools did, my husband made a call to stay home with the kids so I could go. On most snow days I feel bad for him, driving his over-an-hour commute across lake effect snow and routes while the kids and I are kept sheltered. Perhaps it was this upturned scenario that got me thinking about the protection of the snow day call.

Who makes the call

It strikes me that I get a call notifying me that someone else has thought for the safety of kids and others and has deemed it worth closing down in order to keep us safe. I don’t think anyone would refute the inherent good in that decision, but I can’t blame those who are upset that their field trip was cancelled (like my son), or their work plans interrupted, or that they still have to brave the weather and are outside of the protection of this system.

God makes that call all the time. He calls snow days on our plans, and I trust that He often intervenes on Satan’s plots against us. I have marveled often at the way I seem to live in a bubble, surrounded by support and love and protection, having snow days called for me. When I was so sick and weak and a robotic voice jarring my sleep to inform me my kids would be home for the day roused me into a panic full of dread at having to be alert and interactive with them all day, I was still in a very well guarded bubble. In and through my illness I connected with so many people who were “out in the weather” of very rough situations, while I felt safe in my snow day.

Why?

I would ask God all the time. Why me? Why not them? How can I help? Getting well, I asked it again. And again. If having Jesus as Lord and Savior gets you in on the snow day, then, come one everyone, wear your pajamas backwards and flush an ice cube, call him Lord, surrender and come out of the weather! Let Him make the calls for your life.

It is poignant to realize we don’t make the calls ourselves. Hence the surrendering. Our pastor cancelled evening service the other night due to weather. Church took a snow day. I can recall that happening on a Sunday morning once or twice as well. But I recall many more times when my family stopped attending church because my body and my family could not function in that environment of noise, commotion, socialization and movement. We did snow day church at home. After long enough, that became the norm for us, and then even when well enough to go again, it was hard to give up our own control and to want to try rejoining community. The couch was so comfy. But we realized that God was now making a different call for our lives and we needed to go. I heard on the radio during my snowy and slow drive to the airport a blurb about a theologian preaching a hundred years ago against consumerism religion -people favoring the option to stay home and read favorite sermons of favorite preachers rather than join in community at church. The radio spot went on to say that today’s Christian on the couch live-streaming their favorite worship service is practicing this unbiblical kind of consumerism to a great degree. I thanked God again for his grace in how long it took me to be willing to leave my couch and go to church. And for the support and joy and bubble in which the church community sustains me. Like we are all in the snow day together.

As a Christian I must keep asking myself if I am surrendered and living the day God has called for me..and in my work with churches I keep asking that we think about being the Comunity worth getting off the couch for, and being a place less stressful and demanding for all who genuinely struggle to leave the couch. God help us all. He gives a starting point in Galatians 6:

“Live creatively, friends. If someone falls into sin, forgivingly restore him, saving your critical comments for yourself. You might be needing forgiveness before the day’s out. Stoop down and reach out to those who are oppressed. Share their burdens, and so complete Christ’s law. If you think you are too good for that, you are badly deceived.

Make a careful exploration of who you are and the work you have been given, and then sink yourself into that. Don’t be impressed with yourself. Don’t compare yourself with others. Each of you must take responsibility for doing the creative best you can with your own life.

Be very sure now, you who have been trained to a self-sufficient maturity, that you enter into a generous common life with those who have trained you, sharing all the good things that you have and experience. Don’t be misled: No one makes a fool of God. What a person plants, he will harvest. The person who plants selfishness, ignoring the needs of others—ignoring God!—harvests a crop of weeds. All he’ll have to show for his life is weeds! But the one who plants in response to God, letting God’s Spirit do the growth work in him, harvests a crop of real life, eternal life.

So let’s not allow ourselves to get fatigued doing good. At the right time we will harvest a good crop if we don’t give up, or quit. Right now, therefore, every time we get the chance, let us work for the benefit of all, starting with the people closest to us in the community of faith.”

‭‭Galatians‬ ‭6:1-10‬ ‭MSG‬‬

https://bible.com/97/gal.6.1-10.msg

Support

Support.

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Photo by Riccardo Bresciani on Pexels.com

That can mean so much. It often means something different to one individual than it does to another. In fact, I find that sometimes our relationships are strained because one person’s version of offering support is different from another’s, and each side feel let down, even hurt, by what they sense as a lacking in either support (on the one side) or acknowledgement of support (on the other side). Is support:

  1. emotional availability, a listening ear, a shoulder to cry on
  2. financial gift, loan or arrangement making funds available
  3. medicinal, herbal, nutritional, etc.
  4. prayer either together or apart, or both
  5. all of the above
  6. (then there are all the ways it can be expanded to tech, video, audio, etc.)

The Lyme group that seeks to support one another attempts to be option 5 (all of the above), as do most family and friends of Lyme patients. Or people suffering in general, in most circles. Sometimes, however, I find that we tend to try to fix rather than support. My husband has told me “I’m just broken” and yet I cannot try to fix him, or we are both miserable. In my work with faith communities and people with varied abilities, it gets tricky sometimes to navigate supporting people rather than implying something about them is broken and the community is trying to fix them, so they fit in. The real truth is we are all broken (see God’s viewpoint on this in Romans 3:23). Illness needs treatment, and we Lymers talk about herbal supports, immune support, dietary and nutritional support. Even there, we can find many different stances on what sort of things are truly support, what are a waste of time and money. Grief and distress calls for emotional support, prayer support, and simply time spent being with the one in distress – that too has been a common area of conversation in my family and friends lately. The least fun thing to bring up is the need for financial support, most often. Working for two different Christian non-profit organizations has shown me the beauty in “giving people opportunities to support God’s work” by donating money toward our causes. So, why am I so slow to get my own non-profit up and running, to support Lyme patients? I want so badly to be able to send people to the medicinal and nutritional support they need in order to get well, while offering for them a source of the other types of support. Victory Over Lyme.

For that to become a reality, I need prayer support. Wisdom. Patience. Persistence. And time. And, probably, to be at peace with being broken, not having answers, lacking some support at times, and pressing on toward the joy set before me, just as my Support and Savior did.