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.

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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?

 

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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.

Long Hauls and a Pause

via Daily Prompt: Pause

Today is the pause before heading back to “normal” life. For the last 12 days I have been traveling, packing, unpacking, planning, presenting, exhibiting, or preparing. Tonight I get to pause before completing my itinerary and returning home. Driving from Michigan to the Washington D.C. area and presenting and exhibiting there was the first portion of this ordeal. It went well, if hectic. My dad came along as my driver, thankfully –as I’d had vertigo again for about two months and many of us were concerned about me holding up doing all this stuff. We got back in time for me to reset before readying and heading on planes to Vancouver to present and exhibit there. We booked me an appointment with my LymeStop doc in Idaho while on my way home from Vancouver. Hence the pause. I flew into Seattle last night, got out of the city, stayed somewhere in the mountains, and drove the rest of the way across Washington (the state is much easier to drive than D.C.! ..but there I was back on Interstate 90…) to land in Coeur D’Alene, Idaho today. Ahhh… something familiar (same hotel as the last two trips here -they have a reduced rate for patients!01c2bd39fae9a326e124efeb1921e5839a5e4f5e18). I knew that in all this busy-ness and working I had to just survive to today, and I’d be OK. I made it! Ironically, the vertigo died down about a week before I left for the trip East. I have had some bouts with it, though, including one just yesterday morning. I’m still so thankful to see the doctor tomorrow. And especially for time for a nap today. Ultimate pause.

East to West — D.C. (USA) to B.C. (Cananda) and back home again. Whew. That aught to placate wanderlust for a while. Mountain views have certainly filled a tank in me. Alleghenies, the Coast Range, Cascades, and Rockies. Ahhhh… drink them in…

and then I’ll go home and savor the hugs of my family for a good loooooooong time!

Loaners and weak spots

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I’ve been driving a loaner vehicle for the last week. After posting “drive” this seemed a good follow-up, because this loaner has taught me a few things:

  1. It is not the vehicle of my choosing. I don’t pick the color, make, model, specs or accessories. I get what I get (and don’t pitch a fit).
  2. (Maybe this should be number 1) It is a gift, a privilege. I am so thankful for it, or I wouldn’t be going much of anywhere.
  3. It has things about it that bother me; it does not feel “at home” to me. Yet, I cannot alter it or try to get too comfortable with it, as it is not mine.
  4. I will have to return it in at least the state I received it in -I signed a form saying I  would care for it as if it were my own.
  5. Our earthly bodies are “loaner vehicles”.

Seriously though, God gives us these “earthly tents” as the apostle Paul calls them in his letters to Rome and Corinth, as a temporary dwelling till we get to our sweet ride in heaven. They aren’t ours, but His property. He loans them to us, paid for by our Jesus Christ insurance plan. Sometimes we don’t like what we get -the make, model, size, shape, specs, accessories. Some things we notice we’d like to change, we wonder why it was made that way; it’s not how we would design our vehicle. But we do make alterations, and get “at home” in these loaners. Some people to extremes, changing not only hair color, tan, or shape, but even going so far as to surgically change the make and model.

It makes me sad when I catch stories of people who feel they were “born in the wrong body” -and yet, doesn’t everyone think that at some point, at some level? We dislike the weak spots we see in our own appearance, build, or system. We’d rather not admit those are ours. Oddly, it is our own pride that spurs these ideas, our thinking that we could do better, that our idea of beauty, completeness and perfection is better than God’s design for creation. We see weakness and “wrong” where God has planted an opportunity for dependence, trust, growth, allowing others to support us, and more. All of these things are part of this world due to sin, yes, and His perfect will eradicates every blemish for heavenly perfection one day, as it was originally designed to be. Meanwhile, here we are.

I find myself facing a weakness I thought I’d conquered. (Yeah, you know how that goes.) My head is spinning again, and floating, falling, all of those sensations as strong as they were when my battle with Lyme was at its worst. Questions bubble: Is it a permanent weakness in my system due to the Lyme, and damage it caused? Did I just overdo things? How do I know how much is overdoing it? How long will this last? How do I plan now, if this is part of things..and for how long? Is this just the enemy trying to hold me back? Is the Lord showing me something? Fatigue sets in. Feelings of being overwhelmed. Decisions weigh so heavily. What was that about trust, dependence and all that?

It’s days like this I would love to trade in this loaner for “my real” ride. But, like the car in the driveway, while mine is still in the shop, it is not time yet. So, I must use what I’ve got. For now. And ask my Creator, Provider, Savior and Adviser how to proceed, driving around with His logo on me, honoring His business in the way I handle this vehicle.

Drive

On the road again…it’s so great to be on the road again… I can still hear Willy Nelson singin’ that song in my head. And it was so great to be on a road trip to the mountains -my home- with my kids on Christmas day. Having been there and come home, and getting back into “real life” again I’ve realized a couple of things.

  1. Mountain air and that blue-blue sky have filled my tank. I have been renewed and refreshed. I long for the day I return to them again. But, home is not there. Home is where my husband is (who could not come on this trip).
  2. Drive…that’s what I had when I was sick. I had drive to be well. Drive for health. Now that I have attained healing from my chronic illness, I do not have that same drive. I have “lost my muchness” in a way.
  3. On the road of life, as my son’s psychologist put it yesterday, we have three brains that can be “driving our car” -survival, feeling, and thinking. We want the thinking brain to be driving as much of the time as possible. Huh. I had been in survival and feeling for a long time, in my illness. I’m glad to be able to think again. I’m easily awed by all the things there are to think.

Now I have a question: Where do I go from here? (OK, one more): Is this sense that a change is in the air just me finding myself again after my illness, or is there a change coming? Only the Lord knows. And that is a good thing.

Proverbs 16:3,9
Commit your works to the LORD And your plans will be established…In their hearts humans plan their course, but the LORD establishes their steps.