Just sitting at the table

 

My beloved opened the door

And my evening suddenly brightened,

Knowing he would be close with a listening ear

Makes handling the “nasty” less bad and more good afterwards.

I just don’t get used to

The evening ritual of torment

When my world goes dim from sickness

No matter the resting gone before, the mini successes (or so I thought?).

sitting, chair, upset, anguish, grieving, prison, torment, grief, hurt, person, woman, man

I was just sitting at the table

When my eyes pulled closed and shook

My head and neck followed next then I knew

There were just seconds to get lying down before all hell broke loose.

So I did run to the bedroom

Head turned to soften impact bedside

Eventually pulling the comforter over my broken frame

As the sputtering gave way to shouts of terror, gasping for air, legs drawn up too.

In waves the torment continued

Just when I thought I might cry for help

No words came when Steve came to my rescue

Trying to figure out how to get a remedy inside me as I twisted before his eyes.

Tis trauma for us both

When a Monday night isn’t anyway alright

For I will never accept that fifteen hundred of these nights

Are the way it should be forever, oh Lord deliver me please!

Try again the new this or that

Until we or the Docs get it right or even better

Til that night we will sit talking about our day eye to eye

Then ready ourselves for bed with a tender embrace as it should be.

Oh I know others have their trials

And I grieve for theirs with ours in there too

Let me know your need for prayers, Gentle Reader

Allow me to make good use of this time before the altar:  His throne of grace.

My Jesus cares for me, for you

He loves us and lives for our coming to Him

No matter the reason TRUST:  all will be new one day

Until then pray for me too, k?  I am tired from this ungentle cross at my tableside.

JJ

 

Some Passion for You

Passion stems from the Latin work pati, meaning “to suffer.” The stem pass comes from the word passive meaning “capable of suffering.” Pass was coined in the early 16th century to denote “the suffering of Christ on the cross.” English also acquired the word through the Old French word passion meaning “strength of feeling.” This has been transferred in our modern times to denote sexual attraction and anger.  (From this website.)

I was watching an interview of actor Jim Caviezel who portrayed Jesus Christ in Mel Gibson’s movie Passion of the Christ.  Jim has a powerful testimony of the physical trauma he endured during the making of that film.  The movie came out in 2004 when I was in the beginning stages of divorce after my former spouse left me.  I was devastated.  Also within that year my grandmother and youngest brother had died, I lost my home, I had to change churches to begin the healing process (distancing me from my support system), my mother was diagnosed with lung cancer and underwent a serious surgery out of State, I lost my job, and had to store my things in 5 places while I began the first of what would become 5 moves of residence.  One of these was after a condo fire which displaced me into a temporary apartment with only the clothes on my back for a time.  Talk about suffering!  Still this was nothing compared to what my Lord had suffered on the cross for my salvation.  But I tell you, I simply could not watch that movie during that time in my life.  I was too traumatized.  It would just be too painful on too many levels.

This week marks the 5-year anniversary of when I first started having wretched seizure attack episodes on a daily basis.  I had gotten sick with a biotoxin illness for 6 months before then when an “alternative” treatment modality triggered the onset of seizures.  (These continued today although gratefully the pattern is changing some again and this could become a good thing.)  The suffering with these often violent convulsions has been tremendous.  Never would I have imagined such a terrible, terrible illness.  (See them here.)  Even the tumultuous years around 2004 do not compare to what I have endured more recently.  Even those who agonized with me during the various aspects of the stress 13 years ago do not compare to what my beloved husband Steve has endured with me during this illness.  Suffering of this magnitude brings hell to earth for a part of every day.

There are other periods of time that I would characterize as suffering:  the incidents of abuse in my childhood.  Some were sexual, others physical beatings, and several involved satanic rituals.  All were profoundly damaging and required years of help, love, and the healing grace of our Lord, Jesus Christ to overcome.  The abuse kept my mind, body, and emotions trapped in various ways for decades affecting my ability to function as an adult woman.  Somehow I did find my way out when I found Jesus Christ as Lord and Savior; eventually the pain, the “suffering” largely went away.  Self-destructive habits and negative thought processes faded.  Forgiveness and healing took its place.  I became more whole, interestingly surging even now to a new level of peace as the seizure attacks lessen.  Suffering from abuse no longer troubles my spirit.

The Lord doesn’t waste anything in His plan for our lives.  After 2006, I got to experience a magnificent restoration from the “years the locusts had eaten.”  (Joel 2:25) For example, the insurance settlement from the condo fire (where I was renting an apartment) ended up paying for beautiful décor in a condo of my own where I could rebuild my life as a single woman.  Flash forward to more recently and I wrote here of the blessings that have come despite enduring a serious illness including meeting all of you through this blog!  And all that childhood sorrow gave me a compassion for others that has served me well caring for others for decades as an occupational therapist.  Despite my suffering, I am grateful that my Heavenly Father and Husband has allowed me to see His hand, His plan that has masterfully created goodness from the suffering He ultimately allowed for His glory.  I now believe it was all for my good too.

unyru paper, collage, art, wall, Romans 8:38, Jermiah 29:11 Christian, artist

Collage art wall mural in the hallway of my condo with a self portrait too.

And what about the more contemporary definition the word “passion?”  The connotation of emotional, physical, sexual energy?  Let’s just say there is much in my life now to be passionate about in having a wonderful husband (my “intended beloved”) who loves the Lord and me too.  Then there’s my love of growing things in the garden (from my mom) that has kept me moving forward on my worst of days in addition to my best of days.  I love digging in the dirt!  Perhaps most importantly is my passion to champion the calling of the Holy Spirit when He compels me to:  serve someone, encourage someone, love someone, share the hope found in Jesus Christ with someone.  When I hear the call of the Holy Spirit moving me in a particular direction, I move forward with a razor-sharp focus that consumes whatever energy and resources are available to me at that moment.  Whether it is in the middle of the night making my husband’s lunch for work the next day or baking cookies (despite a terrific headache) for that service dude who is having a really, really bad day.  Me and my Lord getter done!

This I have come to know:  that if the Lord calls, He empowers us to respond.  That is what passion is all about, good or bad.  And guess what?  He made the suffering, all of it, good for us on Easter morning.  How about if we keep this in mind the next time he calls?

JJ

Gyrations of health: a Testimony

If a cyanobacteria exposure in a reservoir creates the same biotoxin illness as mold exposure, then why did I not tolerate the Shoemaker protocol to recover from both?

Tis the gyrations of health, I guess, like a drone spinning out of control from the pond beyond to the one drowning in our own backyard.

If latent Lyme disease reared its ugly head but resisted treatment with 3 increasingly costly protocols over 5 years, then why do I keep barking up this fallen tree anyhoo?

Tis the juxtapose of stealth bugs who hide, change their DNA, become resistant or move from my big toe to deep within the brain raising havoc all the while.

If a chain of serious viral infections can hang their shingles on my weakened frame at Christmastime, then why does not 30 days of treatment make barely a dent in one of them, huh?

Tis the nature of complex illness when antibiotics awakens a sleeping class of infection, pushing me to a sideline call more spectacular than a Super Bowl play in overtime.

If heavy metal toxicity met its match with the best testing, detox protocol, and success, then why is it still possible that more mercury, lead, and maybe aluminum may linger undetected in me still?

Tis the nature of blood, urine, and hair sampling that only captures that which is circulating or secreting not the poisons imbedded in tissues only a needle in a haystack would find.

If I can gain 34 more diagnoses with one trip around the calendar trying to get well, then why would we even question that there’s a need for a new tune, a break, and yet more prayer?

Tis the nature of hopes dashed while waiting and seeing what may come (not wasting time asking “why” instead of professing “I will trust you Lord.  Show me how.  See me.  And love me through it too.”)

If when married in the past and health challenges that now look like child’s play came but crushed life as I knew it, then it would be many years later that my intended beloved would show me true love:  how true faith conquers all, overcomes.

Tis the nature of fake religion which fails when life gets hard.  A God-fearing man seeks the Lord.  A God-fearing woman does too and this will be our calling card when this chapter of our lives is through.

And if my writings, my research, the doctoring, trial-n-error, or treatments really worked for something good, then why the heck would I still be seizing each day with “the flu” and pain that has marked 5 years of disabling suffering?

Tis the mystery of bothering to recover, trusting in the Lord who has saved me from far worse knowing that one day we shall rejoice, you and me Gentle Reader, if we but hang in there a little longer with hope beyond the gyrations of this life.

I’m in.  How ’bout you?  JJ

 

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

What did you learn today?

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

OT, occupational therapy, occupational therapist, work, medical leave, disability, license, licensure, renewal

I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) 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.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

lake, couple, Christian, Lake Winnebago, Oshkosh, marriage