The day passed with gratitude

Seven years ago this night, I contracted viral hepatitis kayaking in a local reservoir, beginning what has become 7 years of serious illness.  Yet today passed with more of a sense of gratitude than mourning the lost years.  May I share the good things that came from this journey?

  • Learning to blog, beginning in the summer of 2012 and continuing to this day.
  • Wrote and published an eBook:  Hope Beyond Lyme:  The First Year
  • Learning to make macrame jewelry, starting an online and vendor jewelry business when up in the middle of the night and selling the business  2 1/2 years later with a sense of accomplishment, closure.
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Friendship Necklace or Bracelet with Seahorse Charm from Trinity Jewelry by Design

  • Learning about the numerous medical conditions for which I would be tested, ruled-out/diagnosed, treated, and make some level of progress on.
  • Started, developed, and moderate a mercury detox group on Facebook that now contains about 3,000 members and 1 Co-Admin!
  • Meeting some dear friends in the chronic illness community in relationships that 1) began locally and have continued to this day or 2) transformed from online to face-to-face either electronically or in-person.  Love you ladies!
  • Learned how to develop simple websites for e-commerce, blogging, and marketing for myself and others.
  • Supported my husband as best as I could in his distributorship of performance kayaks and gear:  River Bear Racing.
  • Became a Master Gardener and advanced within the ranks with as many in-home projects as those in the community.
  • Became an Assistant Editor of the United States Canoe Association publication called Canoe News under the tutelage of the handsome Editor and husband named Steve!
  • Recently became Editor of Across the Fence for the Purdue Extension Master Gardener program.  This required a crash course in another online program:  Microsoft Sway.

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  • Became a better cook and homemaker/helpmate to my beloved Steve as I have been increasingly able to do so as the years have progressed.
  • Became my own patient advocate, occupational therapist, care coordinator, medical billing and records specialist, and health coach.  Sure, I hired a Naturopath for epigenetic counseling that was beyond my brain fog to understand yet kept in-step with as much of my care as humanly possible:  seeking answers and finding some too.
  • Learned to camp via travel trailer aka our mobile clean room!  We are grateful for the Lord’s provision on this one.
  • Taught myself via online videos to sew upholstery for our patio and the travel trailer.

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  • Learned to grow vegetables and native plants; working on a community rain garden project for the near future.
  • Experimented with a some volunteer work for our community park this Fall that really stretched my abilities and tolerances.
  • Kept my occupational therapy license current with online continuing education, review of pertinent literature, and following the latest issues-and-trends in my profession.
  • Trialed being a caregiver to an elderly family member.  Didn’t succeed yet worked very hard in this role for six months earlier this year.
  • Became a writer!
  • Fell more deeply in love with my intended beloved, Stevers aka River Bear.
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Steve and Julie at the Fish Lake Race, Indiana, July 2018

  • And most importantly, grew into a vital relationship with my heavenly Father, heavenly Husband, and Savior Jesus Christ.  He is my rock now and forevermore!

How did all of this happen when experiencing daily convulsive episodes and its consequences virtually every day for 6 1/2 of these past 7 years?  Well that’s just how good our God is, Gentle Reader.  Little was done in my own strength in the most wretched of months.  The episodes in general aren’t as bad these days as long as I stay away from the worst noxious stimuli to which I am sensitive and plan rest days accordingly.  They aren’t gone yet.  I’ll write more about a recent setback soon.  Gratefully, the reactivity has come down quite a bit; I can see marvelous progress.  Yeah God and praise the Lord for His mercy and grace!

The day passed with gratitude indeed.  JJ

 

The Battery Effect

A transition was coming.  I did not know that at the time.  I longed for a change of some sort yet continued to struggle.  And then the Lord moved in a BIG WAY.  Did the man the Lord used to help me  know the difference he had made?

I was two years into the role of a divorced woman and much of the rough road had become smoother.  The Lord provided a cute condo just for me in a nice suburb of Chicago, a “little black race car,” and good job.  Physical limitations required me to work 3/4 time yet gratefully my profession of occupational therapy pays well so I could still support myself.  It was still a tough time in my life.  The stress contributed to a back injury that put me out of work without pay then right when I might default on my mortgage payment I was able to return to work.  Amazing.  And that is how the Lord provided for me during a total of 3 tough years:  just in time, right on time, and only after completely submitting to my Heavenly Husband and Father.

The Thursday night Bible study at the home of Pat and Mary was an important refuge for me during those years.  Pat brought to life the books of the Bible with detailed history and applications that made a difference for all of us.  He led us in prayer where we lifted each other up before the Father in the name of Jesus Christ; the love was palpable.  Members came and went yet were never forgotten.  Most of them knew my former spouse from years together in that living room.  It didn’t matter later on.  I am grateful that Craig led me to the fellowship that would make a difference then and even this past weekend.  Here’s why.

His name escapes me of the younger-than me gentleman who was a part of the Bible study who offered to help me with my car.  I understood that he was happily married with children and thriving in the IT field.  I needed a new battery for my Honda Civic but could not find the money for it.  Through Pat within the following week, I learned that the guy whom I barely knew had offered to pay for it!  I was grateful and humbled.  Life went on and the car worked great however I did not see this man again for many weeks on a Thursday night.  I’m sure I sent a thank you note but never got to tell him in person the difference and encouragement that came from his actions.

And then my life changed again:  my mother passed away.  I was already exhausted from the grievous circumstances surrounding her death and, at the same time, grateful that I got to see her out-of-state the day before she died.  Incredible.  Then much to the surprise of my brother and I, she had left behind an inheritance that would meet all of my needs in the near future.  Whew.  Such a paradox!  So many mixed emotions.  I had no idea; I thought she had squandered her hard-earned income that came from years working as an office manager at Hercules Machine Tool and Die in the Detroit area.  There was more leftover.  My brother and I had more to focus on than this so we each proceeded as we thought best while dealing with our childhood home, his ultimate need to find another place to live, etc.  An extended family member’s role saw to all of that for sure as my Mom’s chosen Executor of her estate.  (No, that was not me.)

So I decided to purchase a new car!  And then I felt guilty!  So I sought the counsel of my Bible study leader who taught me to enjoy the Lord’s financial blessing yet hold it lightly.  As a Christian the stuff of life has no eternal value yet we are to be good stewards of the resources bestowed to us.  I tithed then proceeded with my purchase, enjoyed my saweet Hyundai Tuscon.  Sure was nice having a good vehicle to take me to-and-from my new love interest in Indiana.  Things started looking better in some ways, in others there was still a cauldron of confusing emotions.

The gentleman who bought me the new battery for my old Honda Civic showed up sometime later at the Thursday night Bible study.  I was at the stage of purchasing the new car and trading in the old one, sharing my incredible mix of events.  The look on his face seemed to express “incredulous.”  Not sure if he was happy for me or sad.  His donation of a new battery was now in the hands of an unknown party.  The look on his face stayed with me for the next ELEVEN YEARS.  Did he know that his encouragement gave me the courage to go on with my life?  To trust in the provision ultimately of my Heavenly Father?  I didn’t think so.  And I never got an opportunity to thank this man in person; he left shortly after the end of our prayer time that night.

Eleven years later I ran into Pat and Mary at the Memorial Service of a brother in Christ:  this past weekend.  We laughed, we reminisced, we spoke of our mighty Lord and how He had restored the years the locusts had eaten in my life, twice!  (Well, probably more than that actually!)  My intended beloved, Steve, and I enjoyed a lovely time of fellowship with Pat and Mary in addition to many others who helped walk me through those important years when I worshiped at Village Bible Church; many were there on Saturday.  Before we left I had to ask Pat one more thing:  did the gentleman who bought me the new  battery ever knew the incredible blessing he gave me?  Did he understand that I really needed it at the time?  That his actions gave me the courage I would need to move on when a time of financial restoration would follow, albeit quickly?  Pat said that he did.  He said that it was a blessing for him to help me.  Sigh.  Really?  Oh Lord, I do hope so.

The gentleman’s name is Rich.  Lord, please bless Rich and his family, work, and life this day.  Let him know the generosity and goodness that you brought to me so many years ago and lead Him in your ways always.  I pray that he continues to seek you and bless others with what gifts you have given him as he did for me.  May our Lord be glorified in all this goodness that comes to any of us amidst the trials of this life.  Your fingerprint is here for me, for Rich, and for you too, Gentle Reader.  In due time for those who believe in the name and sacrifice of Jesus Christ, we shall be lifted up and made new one day, sharing in the glory beyond our wildest dreams.  Tis a decision worth making, a journey worth taking.  Thank you Jesus for Pat and Mary too.  I pray that you bless them as well for their faithful teaching and living every day for You.

1 Peter 4:8-10  Above all, love each other deeply, because love covers over a multitude of sins. Offer hospitality to one another without grumbling. Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms. If anyone speaks, they should do so as one who speaks the very words of God. If anyone serves, they should do so with the strength God provides, so that in all things God may be praised through Jesus Christ. To him be the glory and the power for ever and ever. Amen.

Beep!  Beep!  :J

Hyundai, Tuscon, German shepherd, garden, light pole, garden bed, Dodge Magnum, paddling gear, front driveway, holding things lightly, Christian man

A few of my favorite things in 2010 including Steve, Elle, and the blue Hyundai Tucson!

Christmas Letter 2016

Steve and Julie’s Christmas Letter 2016

Our celebration this year may be described as one of humility, gratitude and perspective. So here ya go from the perspective of each of us here in Indiana:

From Elle, the Dog

I must say that they have treated me pretty well and the all-natural dog food is great! All I had to do (don’t tell them) was continuously lick my paws until they were nearly raw then BINGO (!) along comes fancier cuisine and a Greenie chew bone every couple of days.  We all know who is in charge over here as I near my 8th birthday . . . the gray hairs on my jowls now bring distinction as Chief Pup.  My favs remain:  chasing radio-controlled airplanes and cars in addition to rabbits & geese!

From Julie

Holy cow, I’d like to say that I have been cured after 5 years of serious illness but that would not be the case. Lots of things are better as I continue in awe and gratitude for so much including having married the most loving husband in the world!  I am now treating chronic Lyme disease with IV antibiotics and working with a brilliant Naturopathic Physician/Genetic Coach.  For more details please see: http://www.justjuliewrites.com  Lord willing, I am going to get well!

We have been able to travel with the “Tin Can Ranch” 5 times this past year to the: panhandle area of Florida and Fort Rucker, AL; Silver Dunes area in Michigan twice; Air Adventure at Oshkosh, WI; Steve’s United States Canoe Association Nationals in Northfield, MA.  Our trip to Texas for Thanksgiving was cancelled; we hope to figure out another way to see Steve’s family this winter.  When in AL, we got to celebrate Steve’s son Daniel’s wife’s graduation from the Army as a Blackhawk helicopter pilot, followed by an enjoyable tour of the area in a civilian copter with Elizabeth as the pilot!  Lord willing we will see Patrick-n-Kate and our 2 grandsons when in NC in January.  With Christina in Thailand and Rebekah (and Pancho to join soon) in Spain, Skype connections are our norm around here.

Our gardens flourished in their 9th year with the clumping bamboo finally making a showing and the blackberries deciding to produce in their 5th year.  Just gotta’ be patient, right?  We enjoyed a cute kitchen herb garden (on the covered porch), peppers, cucumbers, tomatoes, kale, radishes, and lettuce too.  Tis a good thingy that Elle doesn’t miss her outdoor pen that has been turned into our “Secret Garden” now that she is an inside dog!

From Steve

It’s been an active year, with many good things and a few “firsts.”   Julie has been the most incredible wife, supporting me and helping me in all my endeavors, in spite of dealing with significant illness.  I couldn’t ask for a more loving wife or a better partner.  God is good! J  Julie has covered most of the travels with our camper and kid activities, but I want to accent a few of those.

I’ve long wanted to see the Oshkosh airshow – the world’s largest – and with a change in my company’s vacation policy this became the year it was possible (Julie gave the trip to me as a birthday gift – can you say “awesome wife”?!?). What an incredible show!!!  The airshows were phenomenal, the number and types of aircraft were mind-blowing, and if you have any aviation inclinations at all there was probably something there for you.  On the down side, it seems to have reignited the bug within me to finish those flight lessons I never completed so many years ago.  And the thought of building an airplane…  All of which may be behind the radio control model plane getting a bit of a workout lately.

Paddling has been a huge part of our life in many ways these past number of years: I race kayaks and outrigger canoes, Julie and I produce Canoe News Magazine for the US Canoe Association (USCA), and I have a side business (River Bear Racing) selling Stellar Kayaks & Surf Skis (and supporting gear). We were blessed this year in each endeavor.  In spite of some physical challenges that somehow seem to come from aging, I did well in all my local races and managed a 3rd place overall in outrigger canoe at the USCA Nationals this year (don’t ask about my kayak race – that fell apart!)  River Bear Racing roughly doubled in sales this year, turning a profit and allowing me to add in some additional products to the lineup.  You can see our website at www.riverbearracing.com.  And Julie and I were able to produce some well-received editions of the magazine (always a good feeling after all the work that goes into producing a magazine).  See the magazine at http://www.uscacanoe.org/canoe-news.   But the biggest blessing of all was getting Julie out a few times to paddle this year, both in one of our newest Stellar S16S surf skis and in our old favorite Huki tandem outrigger canoe.  With Julie stuck in the house so much due to illness, it was a real blessing to be able to get out on the water together at those times.  And one of those times was at a church marriage retreat on Lake Wauwasee – something she wouldn’t have been able to attend the last few years.

Otherwise, work is going well, and the new owners (Harris) seem to be doing good things for the company. I’ve been able to get in a lot of cycling this year, particularly appreciating the long, warm Fall we enjoyed in Indiana in 2016. Church is a very central part of my life, and it has been a huge blessing to be part of an excellent Bible teaching church (http://www.harvestfellowship.us/).  I planned on teaching some additional classes this year at church (I periodically teach classes on parenting, firearms safety, and paddling), but I had to lay a bit low this year.  We’ll see what 2017 brings.  Whatever comes in the new year, I am always thankful for the salvation of the Lord and the life that He has given me!

Kid News

Somehow we managed to drive the kids pretty much to the farthest corners of the earth; no worries about “boomerang kids” here! Christina continues to faithfully serve the Lord in the far flung land of Thailand (a long paddle past CA) and seems to be doing well overall.  Rebekah was my relatively close child, living with her husband Daniel in the foreign land of Chicago, but her youthful wander lusts got the better of her and off she went to Spain to teach English.  Husband Daniel will follow this December after he finishes his master’s degree.  The boys are both theoretically in the USA, but being on opposite sides of the Continental Divide and on opposite coasts, they might as well be on different continents.  Patrick and Kate continue to enjoy the east coast life in Newbern, NC, raising sons Jackson and Warren.  I did get a chance in the Spring to drop in and play grandpa for a day – something that’s quite a rarity for me.  Daniel and his wife Elizabeth, heeding the words “Go West, young man,” followed the advice quite literally and settled in Tacoma, Washington on the western coast.  They’ve found Washington State to be a strange place, but they’re gradually adapting, learning to chase the homeless heroin addicts out of their cars and such…

Wrap-up

No matter what our perspective may be, the most important view at Christmas is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Love to you and your family,

Steve, Julie, Elle

Gratitude for the little big things

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve.  Happy anniversary!

And Godspeed Gentle Readerfb_img_1480031316027. :J

Anticipation

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come.  I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

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Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters

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Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

 

 

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Our happy travelling companion Elle

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Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure.  I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health.  The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck.  And they were much less!  Yeah God!  It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready.  A nasty new treatment begins later this week.  Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls.  It really could be that bad.  Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless.  Or bedridden.  Or really, really sick.  Then after around 4 weeks, there can be miraculous improvement.  My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing.  My Lyme Literate Medical Doctor was thrilled when I told him.  (He is kind of kooky that way!)  “It’s affecting your brain!  That is good!” he exclaimed in a way that only a master diagnostician can.  Oh boy.  “I wonder what the full dosing will be like?” was all I could think about.  And how will I eat?  Get to the bathroom?  Keep up with all of the treatments while home alone when Steve is at work?  So many questions remain unanswered at this point.

This is what I know for sure.  In a way, the break in treatment for a week of vacation came too soon.  I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle.  There was a lot of stress amidst the good times.  In another way, the break fed my soul!  I got to see what living was like for everyone else while being with everyone else.  I got to kayak with my beloved River Bear . . . . TWICE!  I did more than one thing each day and did alright trying to do so.  When we got back home I got to work in our garden two days in a row.  Wow, Lord.  Then I read an adventure novel in 2 days!  How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this:  bring it.  I have faced worse than lumbrokinase and prescription Lamisil.  I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed.  The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief.  I have been given a taste of life again to encourage me and those around me as well.  It is time to dig a little deeper, literally.  We have found The Beast in the recesses of my brain tissue.  This is war.  Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k?  Thanks a bunch Gentle Reader.  I am grateful for you.  With love, JJ

Julie BH Crop