Tag: Lyme disease

Wolfie, the bee and me

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You might think that an Advanced Master Gardener who tested as understanding about garden insects would be a little less squeamish about bugs than the average person?  Er, no.

You might think that scaring the wolf spider who fled under the passenger’s car seat, and the “barrier” of the light of a flashlight and a floor space clear of travel garb in which to hide would make the back seat a safe haven for the 6-hour drive home?  Er, no.  I opted for the trunk of the station wagon!

You might think that I’d be used to a sweat bee pestering us at the outdoor dining patio of a small town restaurant since it’s a common phenomena for late summers in Indiana?  Er, no.

And you might think that the gnat in my wild rice was no big deal since I only planned to eat 2 tiny bites due to dietary restrictions; I’d already eaten them so I shouldn’t care right?  Er, no.

Yeah, you might think that a 15-hour road trip to pick up my River Bear husband’s new kayak would be uneventful for the dutiful wife passenger . . . er, no!  For me it was the little things that meant a lot when they were crawling and flying too close to my personal body parts, facial orifices, and comfort zones!  Perhaps the 7 or so tic and seizure attack zips during the afternoon put me a little on edge for the first leg of the trip from Fort Wayne, Indiana to Erie, Pennsylvania.  I had brought ample snacks, blankies, and a pillow for maximum cushy; the lush countryside as we travelled from the flat soybean fields of our homeland to the foothills of the Appalachian Mountains made for ample eye candy in between rest stops as well.  I guess I didn’t do so well after all.  I just wonder why spontaneous adventures like these can no longer be, er, “normal?”

Sorry for the down mood.  I spent most of the day in bed today recovering from our day trip.  Gratefully, Steve has a beautiful Epic V12 surf ski in mint condition now, for a steal-of-a-deal price:  $500 below the boat he sold to get it.  My guy sure knows how to trade boats!  As for me, I missed attending a meaningful wedding this afternoon with my beloved and many of our friends from church; I had more tic attacks and convulsions plus an additional 4 1/2 hours of sleep instead!  I woke up worthless except for the intact ability to cruise the internet in bed for hours.  Gratefully I’d made dozens of veggie turkey burgers two nights ago to sustain me with the intermittent, partial bag of Beanitos chips.  Ahhhhh, such is the life of a person lost in the recovery from Lyme Disease.

So where am I now?  I’m more stable as I’ve passed my bewitching hour of 9 to 11:00 p.m. when I usually have a noxious episode.  Thank the Lord I already covered that one earlier today!  My husband has graciously attended to some house chores and provided an occasional kiss of encouragement here and there.  I, too, would have liked to have hidden in the dark under the “seat of life,” buzzed about aimlessly until I found what I was looking for, or curled up next to the softness of a mound of carbs . . . I guess from here I will proceed otherwise.

It’s time for me to crawl like the slow-moving sow bugs on our hardwood floors, before the Throne of Grace.  I need Jesus.  I need an infilling of the Holy Spirit, nothing else.  I need to go it alone at what ever miles per hour it takes to drive home into my heart that this too shall pass.  My thoughts need softening and only the Lord can bring this gently, lovingly, perfectly.  Oh my Jesus, meet me here this night.  Let there be Your light and nothing else.  Thank you Lord for hearing me.

Just Julie

Her Color is Lyme

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I am pleased to share with the Gentle Readers of New Hope Beyond Lyme, a second guest blog interview!

Introducing:  Jennifer Steidl, a WordPress blogger from the State of Washington I met after we “liked” each others blogs a few times!  What interested me in reading Jennifer’s story is her devastating exposure to mold biotoxins as a child then her battle with several other serious illnesses including Lyme disease.  What kept me coming back was her gentle way of communicating her experiences and her faith in the Lord.  Please check out her blog at:  http://www.jeanvieve7.wordpress.com/ for more of her story.

And now let the interview begin:

1.  Tell us about your life before Lyme and the development of mold biotoxin illness.

It is actually hard to recall life before illness, we moved into a mold filled house when I was 11 so my (our) health deteriorated after that point. It started with fatigue, sinus infections, and various other symptoms. It took years to discover the problem was mold. We lived in the house 6 years, and after moving out our health started to get better for a time before auto-immune symptoms started to make themselves known.

2.  What role does your faith in God have in your recovery process?

It has been the essential element. I had times when I felt so terrible physically, and was so depressed I think I would have given up all hope if it weren’t for God. And knowing (even if it was only deep down at my core) that He had a plan and a purpose for me brought me through the darkness. I trusted that He led me to a team of doctors that knew what they were doing, and He would not have done so if it were not for the purpose of healing.

3.  How can I keep from blaming God or others for my illness or the things that are going wrong in my life?

I can honestly say I have never blamed God for years of struggles and illness. Been frustrated, angry, depressed, desperate, confused…yes, but not angry at God. I am not being arrogant at all, but rather I had to resort to what I knew was true of God; His character, and the way He works. I am a weak feeble-minded human being and I have doubted these truths many times….but somehow not at my very core. Dive deeply into His Word, pray fervently and honestly, don’t be afraid to ask Him why you are going through these struggles, He will reveal it to you in time. Be open to learning whatever He has to teach you during this time, and what He has given you to teach others.

4.  What are your favorite verses of scripture or Bible stories these days?

  • A Couple of my favorites:  Hosea 6:1-3 “Come, let us return to the LORD. For He has torn us, but He will heal us; He has wounded us, but He will bandage us. “He will revive us after two days; He will raise us up on the third day, That we may live before Him. “So let us know, let us press on to know the LORD. His going  forth is as certain as the dawn; And He will come to us like the rain, Like the spring rain watering the earth.”
  • 1 Peter 1:6-7 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ.

5.  What works the best for you with the difficult symptoms of Lyme and mold treatment?

It has changed over time depending what stage of treatment I am in, but one thing that has made the biggest difference in energy and weight loss has been Cholestyramine. It is used to rid the body of toxins that the liver alone can’t deal with, especially mold toxins.

6.  What 2-3 things do you look forward to the most when you are well?

In some ways it is still scary to hope too much (the fear of not getting to do what I want to do), but that is something I am slowly getting past. On a small scale I would love to really get back to biking. I have a goal of riding 50 miles in one day. Also I would love to get back to yoga. On a large scale I have always desperately wanted to travel, with New Zealand being my number one destination.

7.  Is there anything else you would like to share with the Gentle Readers viewing this blog post?

I hope with all my heart you have a good doctor or team of doctors that really know how to treat Lyme, it’s co-infections, and especially the secondary illnesses that accompany it; heavy metals, candida, parasites….If you do know that what you are feeling now is temporary, and it gets worse before it gets better. You can make it through. Don’t be afraid to ask your doctor/s the tough questions. Do lots of research and know your illness as best you can. Reach out to others both to learn and be learned from.

Don’t let yourself battle this alone. I think this is one of the top struggles of Lymies because so few people are able to understand what you are going through. But be honest about your physical and emotional struggles with those who love you, don’t try and do it by yourself. No matter how terrible you feel at this moment, allow yourself to accept that you are in a privileged place (crazy I know). But God is drawing you closer, so let yourself be drawn into His arms of grace. There is abundantly more for you at this moment in Christ because all else has been taken away, hold onto it, embrace it, don’t let this moment pass you by.

************

Thank you for sharing your story, your heart, and your hope today Jennifer.  I pray that the Lord will bless you on your journey and see your through to complete healing and wholeness.  Take care lady, :J

 

Let there be light

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I am so glad I stumbled upon a videotaped performance this evening of the talented and zany Christian communicator, Patsy Clairmont.  My own strength is waxing and waning at the moment so she provided the little something extra I need to make it through to tomorrow.

In her show, Patsy described her search for words to comfort a dear friend battling cancer and found it in Genesis 1:3.  Here God reveals to us through Moses the beginning of the story of life as we know it:

1 In the beginning God created the heavens and the earth.2 Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.

3 And God said, “Let there be light,” and there was light. 4 God saw that the light was good, and he separated the light from the darkness. 5 God called the light “day,” and the darkness he called “night.” And there was evening, and there was morning—the first day.

Patsy points out that the first words the Bible records of God speaking are for there to be light.  Ah yes, light dispels the darkness and guides our way; light is a symbol of God’s glory and presence throughout the Bible, and so much more.  Intended as a meditation for her friend, the simple message of the verse, “let there be light,” became a joyful encouragement to both of them.  I invite you to view the You Tube video for the moving story:  http://www.youtube.com/watch?v=-HpRO8g9Qds

This evening was a dark one for my beloved husband, Steve, and me.  He’s exhausted from the demands of work and his heart breaking as he watches his wife thrash about with convulsions every night.  I am broken, depleted  and in a good deal of pain most evenings from the same and the seemingly lack of direction in my treatment.  It seems that every time I start on a new course of treatment for Lyme, Chronic Inflammatory Response Syndrome or the myriad of related conditions I get sidetracked or have to stop due to increased convulsions.  The current pattern of some form of these “seizure attacks” is for them to occur about three times per day on average with one miraculous 23-hour break earlier this week.  Go figure.

I need the verse, “let there be light” to wash over my burdened soul this night.  I need my Jesus to be the light of my sore heart, the light of my weary steps.  I need my doubt to be transformed by blind faith in His shining light.  I need there to be light.

And so I say to you as I write this in the middle of the night, scared to go to bed for fear of more attacks, “Let there be light.”  And to my heavenly Father, “Let there be light.”  And to those exasperated by the duration of my illness, “Let there be light.”  And to all of those who are weary, “Let there be light.”  Together we can find His light and know what that means in our own lives as the night gives way to the day . . .  zzzzzzzzzzzzzzzzzzzzz

Start with what you can eat . . .

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Special diets can be maddening, time consuming, expensive and an all-around bite in the shorts (if you know what I mean)!  Instead of stressing, I apply a few basic food prep principles, start with what I can eat, and whip something up from there.  After a few weird entrees and sauces, things will start to taste more palatable and even kind of good as you gain confidence.  Who needs recipes anyways?

My husband went shopping at a big box store this evening for basic groceries including grated cheese, fruit, a few veggies, and the only meat I’ll buy there for a rare convenience:  canned chicken.  Since I haven’t been able to shop very much lately, preparing dinner tonight required some very special creativity!  Gratefully there were onions and cabbage from our garden in the frig, a loaf of multi-grain bread in the freezer for hubby, some sliced almonds in the pantry and a few other staples here or there.  Now to make a gluten/dairy/sugar free meal plus a full flavor meal for the two of us . . .

His and Hers Salads began with Canned Chicken!
His and Hers Salads began with Canned Chicken!

Not bad, eh?  Gratefully it was yummy!   The base started with spring greens in both bowls with oven toasted almonds (sprayed with grapeseed oil, sprinked with celtic salt and roasted about 7 minutes in the oven at 350 degrees, stirred once halfway through the baking time).  The chopped chicken salad-and-vegetable mix included all the veggies we now had in the house:  cucumber, cabbage, radishes, onion, and the canned chicken.

For Him:  I garnished the ceramic bowl and base of salad greens with sliced pears and grated cheese.  I made a 1/3 batch of homemade mayonnaise in the Vita-Mix using sunflower and olive oils instead of GMO-laden canola oil listed in the recipe.  (Yes, here’s the one exception:  ya gotta follow a recipe exactly from the Vita-Mix manual for mayo to turn out right!)  I mixed the mayo with half of the canned chicken-and-vegetable mix and dolloped it over the cheese and spring greens.  He got a topping of toasted almonds with a little extra dressing on the side, just in case.

Basic Parmesan breads:  I thawed and sliced a loaf of multi-grain bread about 3/4 inches (2 cm) thick and placed them on a cookie sheet lined with foil and brushed with melted butter.  I brushed the tops of the bread liberally with butter then sprinkled on some parmesan cheese.  (For garlic butter, sprinkle some garlic powder or chopped garlic into the cup before microwaving the butter, about 23 seconds.)  Broil on low for about 6 minutes checking it often near the 6 minute mark.  I find that the low setting allows the pan to heat up and toast the underside in addition to both melting and browning the cheese on top.

For Her:  I garnished the ceramic bowl of spring greens with a non-cheese alternative (e.g. Goya shredded mozzarella).  Next I made a dressing with almond butter, unsweetened. coconut milk, Mrs. Bragg’s Liquid Aminos and a pinch of celtic sea salt.  This requires some minimal adjustments for taste and consistency.  Then I placed the other half of the plain chopped chicken salad-and-vegetable mix on top of the remaining bowl of spring greens and poured the almond coconut dressing of it, mixing it into chopped salad slightly to coat it.  I finished it off with a topping of toasted almonds as well.

Sure, this meal took a little extra time to prepare and it was worth it.  To make it even more worthwhile, during the assembly phase of this meal and next to the ceramic salad bowls were two large plastic containers that are not pictured above.  I made duplicate salads with every ingredient listed above except the sliced pears (since they would turn brown by lunchtime tomorrow).  So we not only had a yummy dinner tonight but will look forward to a “repeat performance” for lunch tomorrow!  I usually make dinner this way:  setting out the storage containers for lunch and serving them up right alongside the dinner plates to save time the next day.  Cool beans.

That’s it!  And it’s not all bad following a protein-oil-vegetable diet, with a tiny bit of optional, extra carbs from the cheese substitute, when it tastes good too.  ‘Twas tough avoiding the cheesy breads I must confess . . .   ;J

So where ya been?

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O.K. so I’m still sick and that isn’t my excuse this time!  So where have I been?  Editing, that’s where!

This past month I’ve poured and prayed over the decision to turn these blog postings into an eBook.  I want to make sure I have the right intentions and that the end result will be something useful to others as well.  In the process of reviewing this past year of New Hope Beyond Lyme on WordPress, it became clear that my followers enjoy messages that are particularly encouraging to persons recovering from a serious illness.  Matters of faith generate the most comments and I’m pleased for that.  To Him be the glory!

I did some research on various publishing formats and have decided to proceed with a no-cost eBook format where I can do virtually all of the formatting of the manuscript and cover art myself.  I have a lot to learn about all of this, for sure!  Lyme Disease will be prominent in the text since the treatment of Lyme was my primary focus for most of this past year.  But the take home message won’t be about a disease . . .

The truths borne out of the trials, struggles, illness, and strife these past two years have once again served to strengthen my faith in the Lord Jesus Christ.  About a year into this season of illness, I began blogging to keep myself sane!  Now looking back over this past year of blog posts, I am grateful to write, has actually brought more hope than tears.  I was so scared of everything in the beginning, particularly when the tic episodes began escalating into full-blown seizure attacks.  I didn’t even write in complete sentences most of the time back then.  The crazy thing is that I generally have more hope and peace now when the attacks exceed 3 times per day, than when they were less!  I have the Lord’s work in my heart to thank for that!  He works in amazing ways for sure.

While I am grateful for the gift of writing, keeping my eyes fixed on the Lord through reading His Word continues to be the most important survival strategy for me in this season of life.  The cool part is that I get to look up all kinds of scripture verses as I pour out my heart onto the computer screen.  I do hope, however, that the New Hope Beyond Lyme eBook will never be a replacement for a fellow sojourner opening His or Her Bible.  Reading a verse here or there in a blog or eBook, on a Facebook Newsfeed, in the signature line of a friend’s email, Tweeted, or in a Pastor’s message is not as valuable as soaking up God’s Word in our time alone with Him.  We can’t dwell in His presence, linger before the throne of grace in the same amount of time it takes to hit, “delete!”  His grace requires a bit of time to reach our weary souls . . .

I do hope, Gentle Reader, that your own faith in God and in the person of Jesus Christ has grown as you have joined me on this journey.  I was reading today in the first chapter of 1st Corinthians where the apostle Paul teaches how we come to understand God through faith and not through an intellectual discourse.  We choose to believe that Christ died on a cross for our sins so that we may become forgiven for our sins, right-with-Him, and begin an amazing spiritual journey rich with meaning as sons and daughters of the King.  To receive the blessings and the promises of a relationship with God through the person of Jesus Christ requires faith.  If we have faith in Christ crucified, it will make a difference in our lives for all of eternity.  That will help us cope with virtually anything, today and tomorrow.

With the testimony of God’s Word as my witness, I submit to you that only with a personal relationship with the Lord, Jesus Christ will any of the stuff we endure in this life make any sense at all.    If we do have this sweet fellowship with Him, the lover of our souls, all of this stuff will be worth it.  And for me, all of this suffering will be worth it as well.  I would not be writing anything if I had not gotten sick two years ago.   Nothing I write will make any difference either if it doesn’t point someone, somewhere to something more than recovery from an illness.

How humbling that Lyme Disease may be used for good.  Such is the, “new hope beyond Lyme,” after all . . .