A Christmas Gift

A Christmas Gift

Isaiah 9:2  New International Version (NIV)

The people walking in darkness
    have seen a great light;
on those living in the land of deep darkness
    a light has dawned.

Some of you know that I was in the hospital earlier this week with the searing pain of shingles on my face. I was crushed to face such a serious disease on top of the daily seizure episodes that accompany chronic Lyme disease: a battle that consumes me with treatment and related activities for most of every day. How could I possibly bear one more grief?

The answer:  with Jesus Christ. Inside the treatment plan of this new illness came a drug for nerve pain that also happens to help seizures. And fibromyalgia pain. I was humbled to have a couple of seizure-free days thereafter! Managing everything took strained breaths as I tried to get beyond the few 1-2 hours of sleep in those first days and other complications. There were setbacks that crushed my spirit: aggressive, violent episodes of a kind I had never seen before. Then they all nearly stopped. And very few “little zippies” have followed as sleep has returned too. I am humbled, hopeful, grateful. What a Christmas gift!

We have no idea what lies before me in this long journey of illness and hope for complete recovery. I am grateful for those who have followed my story, prayed, and offered encouragement just when I needed it. Thank you! I believe this story goes beyond me, however, as neither of us knows what lies ahead. But don’t waste your time worrying about that. Put your faith in the one who came to save us from this hell, these trials, the sorrows that plague our lives here on earth big or small that began as a consequence of the Fall of Mankind. He grieves for our loss, our struggle, our suffering. And He gives us a choice what to do with it.

Choose to join me in the celebration of a new life that comes from the belief and surrender to the Lord: Jesus Christ. One day He will return to make all things right. No more sorrow, no more tears. Until then we can have a good bit o’ the joy, the strength, the love that supernaturally exceeds this life: our eternal destiny begins the day we place our faith in Him. Do you now Him this way? He is the only way to peace. He is the only way to joy. He is the only way to love. He invented them after all.

Merry Christmas Gentle Reader. Hope to connect with you more in 2017 and most importantly at the celebration that awaits believers in Jesus Christ in heaven.

I love Christmas.

With love, Just Julie

snoopy-christmas

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 (aka Pancho) 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

O.B. Panties and an HGTV Hangover

Are you going to love it or list it?  Are you ready to see your fixer upper?  I just don’t think this kitchen is big enough for me!  This will all have to be torn out and redone!

And so goes the thoughts in my head the day after being discharged from the hospital.   Since cable TV was my only steady friend and we don’t have cable TV at home, we got really well acquainted in the past 3 days.  I am convinced now that the wood floors in our home are stunning and that we can stay put for awhile longer.  Wood floors are on-trend these days dontcha know?

I also learned that O.B. elastic panties secure blankets over hospital bedrails really well!   When you are on “Fall Precautions” and have a history of seizures, they pad the bedrails with them.  The only problem is that I am sure that wrapping blankets over metal bed rails hardly meets JCAHO requirements for prevention of injury!  They outta have provided bed pads.  Oh well.  Welcome to the modern hospital complete with a 20+ year old hammock sling for a mattress.  Otherwise, the food filled my belly and care was alright.

I was in the hospital after an urgent trip to the Rapid Care Clinic associated with my doctor’s office sent me there on Sunday.  The Internal Medicine Doc said I could get an evaluation from an Infectious Disease Specialist there (which I was later promised in the ER as well).  That never happened.  What did happen was getting pumped with a plethora of drugs that created nausea for the first day and one-half, exhaustion from side effects and lack of sleep, weight gain from 4,000 cc of fluid and food-snacks-with-every-drug-to-protect-my-tummy, and a lesson in humility.

Regarding the latter, I learned that Nurse Practitioners and Physician’s Assistants run the modern hospital in America these days.  Or at least they do for what happens bedside.  I saw both types of professionals; they got to talk to the Infectious Disease Doc but I did not.  Turns out that my acute case of shingles had been seen before so they treated me “by the book.”  Never mind my history of daily seizures and concern for the brain-swelling complications that can come with the worst cases of shingles:  a disaster potential which could change my life even further, forever.  Thank you Lord that I had called the Ophthalmologist on-call the night before and gotten the treatment needed to protect my eyes from the herpes zoster virus.  It is through the blurry vision of an eye ointment that I chat with you today!  The hospitalists never mentioned protecting my eyes from the spread of this nasty, searingly painful viral infection . . .

So I did my time, got my drugs, stabilized a good part of the intractable pain, and got sent home with:  red lesions and swelling on the right side of my face, a 4th day of constipation, lots of prescriptions for drugs and OTC meds, and a renewed sense of what it means to NOT be in charge of your own life, your own healthcare.  I did get to ask questions and for that I am grateful.  I did receive my Lyme infusions of antibiotics before I left to continue that part of my treatment and for that I am grateful.  I tolerated a peripheral line for 3 days without skin irritation and for that I was amazingly grateful.  I did catch up on HGTV enough to last me a good long while and for that I am grateful.  And I was reasonably able to tolerate a modified, hybrid version of my diet from the hospital menu and for that I am grateful.  I was alone for those 3 days and 2 nights yet my Heavenly Husband was always present and for that I am grateful.

There are two other tidbits to note:  I met a lady while walking the halls who was in the hospital for pneumonia.  She’s a smoker and familiar with Jesus Christ whose birth we celebrate at Christmas.  I shared with her a short testimony of how the Lord appeared to be orchestrating the meds I was given during that hospital stay to possibly treat the serious seizures I have been suffering for 5 years.  Please join me in praying that the person of Jesus Christ would become real for her as well:  as her personal Savior this Christmas.

My second point was hidden in the first noted above.  Did ya catch it?  Yes, I have not had a seizure since coming home from the hospital and had WAAAY FEWER since taking Neurontin in the hospital.  Neurontin is not typically given for Non-epileptic seizure episodes but hey, it is commonly indicated for shingles.  Win-win?  I am hopeful.  What if these 5 years of suffering daily episodes are about to end?  It is too soon to tell how this will proceed going forward yet I am grateful for my little Christmas week reprieve for sure!

Merry Christmas to you, Gentle Reader.  Be sure to check out the Christmas Letter from Steve and me posted today as well.  Even in the dark times there is hope since the Light of the World has come as the person of Jesus Christ.  Oh I do hope that you will share with me in knowing this joy today!

And keep an eye on your panties, eh?  JJ

maternity, pregnancy, other uses, panties, underwear, adapted, stretch

 

A Tale of 2 Gregs

One made the bag, the other got it in me

The latter carried me for a time, the former will see me from beginning to end.

Both attend to excruciating detail

Their work as professional as it can be:  an example for all who deal in potions for the cure.

The one is seeking her Lord

Whilst the other follows Christ with family, with livelihood reflective of the same over time.

I never knew how this journey would go

And the people, places, and things that would come near for having been allowed this path.

But I must say parts have been worth it

Having known you two has taught me much about life, about overcoming, about getting up each and every day.

So today when your worlds collided over me

I felt humbled at your care, expertise, and willingness to make a difference in my recovery.

Thank you for being on my team

These infusions of life-giving waters will make a difference one day for sure.

Until then carry on dear providers

Your work goes beyond sharing 4 letters of your names to hope beyond this day for sure.

 

You rock!  JJ

Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ

bedbugs

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