Juxtaposition

What a fun word -juxtaposition. It’s pretty obvious I like words. this particular word is fun to say and describes many things I’m thinking about right now so well.

Such as, two images I came across on Pinterest & Twitter, respectively:cost of lyme pin

 

 

 

 

 

I find both to be true in my case. It was expensive, and in the end did not get me better. Though it was not worthless. I do believe all the medications I did were part of the process, and many did indeed kill of some bugs in my system.

 

 

Being sick with something like Lyme is a not-so-in position in which there are many juxtapositions to handle.

Another juxtaposition is a state I find myself in this fall: Haunted by Grace. It’s true, though, that it sneaks up on me, surprises me, even creeps me out -those times when I’ve screwed up or missed a mark or just plain don’t know how it’s going to work out, and (why it surprises me is probably the better question –my God is full of Grace and Truth and is always with me!) Grace makes an appearance and if I stop and look, the translucent apparition actually has substance for a moment. Then I get busy with life again and it seems to disappear from sight. (The grace of the Lord Jesus Christ be with your spirit. –Philemon 1:25)

el-tiempo-vuela-el-reloj-rc3a1pido-de-las-manos-de-la-falta-de-definicic3b3n-de-la-velocidad-17751517One more that’s on my mind: ADHD and Slow Processing speed. OK, so this is brainy talk, but I see it in my family, and am learning more about it. Just because these brains move quickly from thing to thing, and seem to think at the speed of light, does not mean they are taking in, sorting and storing information quickly or efficiently, nor that they are finding from storage, organizing and producing information quickly or efficiently. Also, in either ADHD or Processing delay alone, a sense of time can be iffy, having both means a sense of time is even less well developed. That means, it takes them for….ever. to. complete. a. task. and they don’t realize how long it took them because they can’t tell what that amount of time feels like. ARgh! Patience, young Skywalker. (…be strengthened with all power according to his glorious might so that you may have great endurance and patience –Colossians 1:11)

As is commonly the case when I’m blogging, I’m tired but can’t sleep. Time to find a resting position instead of that juxtaposition, now that I’ve spilled some words. Good night.

 

 

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Help Wanted (?)

A sign in the window of a shop. A piece of cardboard held by a pan-handler. The look on a friend’s face. The story of a family’s struggle. A patient’s call to the doctor. An addiction. An unhealthy relationship. Disruptive behaviors. A single utterance.

“Help.”

So many ways it can show. So many things it can mean. It can seem as if the human condition is the constant ebb and flow of help –asking for it and giving it being the natural order of things. And when the natural ebb or flow is blocked, dammed up, the inevitable result is pain.

If being debilitated by Lyme disease taught me anything, it was the art of asking for help. And receiving the answer given. I recently got to share that this process is one of learning grace. It takes humility and grace to ask for help. It is a humiliating thing to do. For some of us, that’s darn near an impossible task. For some, it’s too complicated to try to ask for help, or to receive it. (How do you help someone who wants help, but can’t seem to reconcile what they need with the way life is for them?) For some, it’s too hard to hear anything other than a fully committed “yes! I’ll do exactly what you’re asking”. For others, all they’ve ever gotten is “I can help this (tiny bit) much; that’s all.” Or simply “no” and so they’ve stopped asking. It takes a lot of grace to absorb the responses to “Help.” And grace is not always easy to learn.

It seems quite clear to me, from my experience having (and needing!) a Care Team, and from encountering many people over the last few days from whom I gleaned insight:

1. That having someone step in to request help on your behalf, and field the responses, is perhaps the biggest help of all.

2. Whoever attempts to help has got to learn from you exactly what it is you really need, starting with the basic need for human dignity. (Hence asking what help you desire, before even attempting to meet any perceived needs)

Jesus, no surprise I guess, being perfect and all, masterfully did this. He heard cries like “Son of David, have mercy on me!” And went up to the crier and asked “What do you want me to do for you?” (See Luke 18:35-42, for example). I have so much to learn.

And then there is the issue of how to help someone who can’t answer the question of “what do you want me to do for you?” -which will mean further creative searching on the part of the help-advocate, to find out what is needed by investigating those signs which are harder to read, such as the look on a face, or the behaviors being exhibited, or even researching the symptoms and situations causing the problems.

It may be true that good help is hard to find. But I truly believe that if you ask, you will receive; seek and you will find (Luke 11:9). And that the thing that stops us from asking is pride, and the thing that stops us from helping is fear. And the thing that overcomes both, restoring the natural flow of giving and receiving is real, nitty-gritty, down-in-the-dirt-with-you, honest, selfless, supernatural (and therefore limitless), discerning, disciplined, cultivated, committed love.

Ask and Tell

I was told 3 times in the past week “You are right where God wants you to be” –so that must be true, and God must want me to get it! It was funny to me, though, as I was in very different settings each time it came up, each time doing things that I asked myself “is this what I should be doing more of, or less of in the future?” Maybe that’s the wrong question, and being given that answer tells me that today is what to focus on, not tomorrow.

I have been pretty good at asking the wrong question, and God showing me what to ask instead. He is so gracious. I’ve also answered questions, and later realized it was not the right or best answer at all. I’m praying God’s grace covers those situations too! And I’m continuing to hunt for better answers to questions such as:

How can someone who is alone and has Lyme find support and help, especially if their church won’t? (can I get back to you?)

How do you (advocating for people with disabilities in church) work with a pastor who is not a very good communicator (but thinks he is)? (uhhh…let’s talk, and see clcnetwork.org/roles)

What do you want churches and community to know most of all about living with chronic illness? (there are so many answers! and so many people who deserve to answer this!)

Are you cured of Lyme disease? (depends on who you ask!)

Does Stevia cure Lyme disease? (Hey, I have a real answer to that one! Thanks to LymeDisease.org emailing me with some exciting updates!)LymeInfo

Off to ask and to answer more of life’s questions…what’s next? who am I? Is this the end of times? Is Lyme still what is affecting my husband and son? Who needs to hear the Gospel message from me today? -ooh! Another easy one! Answer: everyone who will listen! God loves you! He sent Jesus to save you from eternal emptiness and pain. Believe in Jesus’ death and resurrection and you get to join God’s family forever, starting with His peace in you right now!

Next question…

The Immunosuppressor Strikes Back

After A New Hope known as Lymestop revived this family, we had several months of great living. A relapse of some symptoms in my brain led back to Lymestop in April, and all was well… until we started noting the loss of health in my husband. Then summer hits, our son gets a nasty cold with fevers, and from there it’s been colds and pneumonia all around.

Today I write this on a sunny 70 degree day, in long pants, two shirts and two blankets because I’m shivering. Be ye warned: when you catch something like pneumonia in the middle of summer, and you’ve been on heavy antibiotics long term, and had an immunosuppressive (or auto-immune disorder) illness, you may need heavy artillery to get rid of it. It took a shot of Rocephin (oh how I remember those syringes by the bag-full! It still leaves an awful taste in the mouth and metallic feel all over the body), a Z-pack of Zithromax, and a follow-up course of Levaquin. Finally over that, and over the pneumonia, and then the yeast infection, and I see the doctor again. He gives me a vaccine for pneumonia so I won’t have to go through the days and days of intense fevers, weakness, coughing etc., again. Yay! By the way, I’m also due for a tetanus shot, and about to try fixing up our old dilapidated barn. Good idea. Do it.

24 hours later: shivers, sweats, the whole barrage…it would seem I am one of the lucky few who gets the “moderate reaction” to the shot that involves all these and a fever of 102.

At least my daughter is done with her antibiotic, and seems to be coming out of the cough from both the pneumonia and the more recent cold. My son is being a trooper with his cold (and allergies?) and my husband is now on Levaquin and an inhaler. Maybe we will have a week of summer to be well. Or Jesus can come back now, that’d be fine too.

Hang in there, all you who wait for healing. “There will come a day with no more tears“…

life(,?) coach

“Coach, I’ve got nothin’ left.” I gasped during one of my last J.V. basketball games as a teen, in which I was fighting a fever and a cough, but also my desire to help my team (and some desire for dramatics, if I’m being honest). One of those sweet, silly, probably-not-the-smartest-way-of-handling-the-situation-but-it-it-worked kind of moments that dangles in the mobile of my memories. I like impressing a coach, but not necessarily with my (somewhat lacking) athleticism. When I had a life coach for a brief few weeks I valued it so highly, and so anticipated doing things to fulfill the expectations laid out for me. In one of the last sessions with this coach, I was tasked with answering this question: “What do you want to take with you into wellness that you’ve learned or gained in your illness?”

I think I tried to answer it that day with some pithy thing I hoped was profound. But the question still haunts me almost daily. Blogging now about it, I (perhaps naively) hope it helps others ponder their condition and what they are learning from it. Because, as my dad taught me, “you’d better be learning, or earning…or better yet, both!” and, when chronic conditions make it practically impossible to earn financially, I have to hope there is learning going on. Before I was debilitated with Lyme, I might have been contemplating getting my master’s degree. Today I was gathered with many thinkers who have a significantly more credentials to their names than I do. I have to admit wanting to have some, in my human prideful desires. But the Spirit of God in me erupts with desire to instead lay down everything I think I am or own and live with complete abandon to Him. I thought I’d learned how to do that while in my illness, that maybe that’s what I could take with me into wellness. As it turns out, I was in a four year program, not a post-grad degree or certificate, but the School of Chronic Lyme Disease and Its Peripheral Effects. I learned to hear myself say, “Lord, I’ve got nothin’ left” and hear His responses. I learned plenty about illness, Lyme & co-infections in particular, which you can read about in the rest of this blog.

Today, I think I realized the answer to that life-coach. But what I am now realizing is that I didn’t just learn some little lesson so that I could move on to other things. It’s life, coach. What I learned/gained was life — real, true, nourishing, healing, communion with God. That’s life. I need it, daily, every hour, every minute. If I think for one minute that I have (or should have) it all-together, can play this game on my own strength, can or must figure things out on my own, can earn the money to provide all my family needs, or can earn my significance in this world, then I’ve not taken it with me into my “wellness”. Not very impressive, eh, coach? Exactly. In my four year program, I earned vulnerability instead of credentials. I’m not proud of that, but maybe that’s the point.

Now stop reading my over-spilled thoughts and get…life!

Role Reversal, learning old lessons, and A New Hope

Life is just ducky. And ducks make a mess.

My husband let me get ducks this spring, after years of wanting to get them. And I love having them. But they are messy, and take work. I love that they eat bugs…like ticks. I pulled one of those off the dog yesterday. My ducks love cucumber scraps, but won’t touch bread. Good ducks. smart ducks. I found a frog in their kiddie pool this morning. Good stuff. Other than that, they eat a lot, kill grass, and poo a lot. So is life.

youkissme.jpg

Now that I am strong and well again, with minor complaints (everyone has those, right? especially in the their thirties…), I am learning what it was like for my husband to watch me hurt and feel rotten all the time. Unable to do anything to help, not even knowing how. He hurts. all the time. his joints are terrible. feet. hands. neck. and now he’s got some teeth issues. He was prescribed steroids, which made him hurt worse. Hmmm… I’m thinking he’s still got some Lyme junk in there. Lyme and steroids never play together well. The question is, how to get him back to Dr. Smith in Idaho for a re-check/re-treatment?

 

ikissyou

Meanwhile, I’m adding large amounts of vitamin C, some concentrated garlic tablets, and maybe a few other things to the grocery list for my husband to start taking. I’m going to have to read my old notes to see what all was helping to kill the Lyme and inflammation (besides the diet low in sugar and inflammatory foods, which we are already continually aware of). There is a big difference, however, between my case and his: he is still working full time. And I don’t think I give him nearly enough credit for what he puts himself through to drive almost an hour and half away to work all day every day. My first reaction is always to “fix it” …but I can’t do that. So, once again, I have to learn to pray, wait, listen, serve, and maintain the health that I can (for him and for me). And I’m still not very good at doing that.

 

 

 

New news, though! If you still care about what’s happening in the Lyme world, and need some new hope, please check out this article about a new doctor on the scene shaking things up for the better: http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/   I’m so glad she is talking about need for testing, and for the research, and especially the patient advocacy that is so lacking.  I know a few people I’ve been talking to lately need to hear this news. And get some treatment!

 

Keep it going? or All Things Must Change

I am doing well, thank you, to all who are asking! Victory and Lyme are both in my history now, and always in my conversations, if not in my every-moment thoughts any more (praise to God!!).

Someone just sent me another helpful article by another doctor who “gets it” –and Lord wiling, these types of articles, websites and findings will continue to spread like the epidemic itself.

I am praying for you, all my “Lymee” friends still suffering. I want to start a fund that would be a scholarship to get people to the Lymestop treatment, in conjunction with Mercy Medical Angels. Please contact me if you have questions about that.

While I don’t want this blog to turn into a different topic, I may have to start a new direction somehow that deals with the current chapter in my life: accessible and inclusive worship in the church. Having struggled with health and sensory issues for a long time, attending church is just not the same, and I have very different lenses through which I perceive the worship environment churches create –intentionally, or unintentionally. A great quote I gleaned last week: “when your theology and architecture are in conflict, architecture always wins”  (see pg. 143 of Brian McLaren’s book, “All Things Must Change” — I loved that title and idea, obviously). This is true. And it’s not just the building space, but the perceived space. Anyway, like I said, this could be a whole new blog.

I question now, whether to keep this blog going …so please, let me know what you want to now about Lyme, my journey, what I’ve found out, and what can be done. Be blessed. I am. And I want to bless you.