We survived our Christmas holiday

He suggested a restaurant, I located a coffee shop, we could save money by making our own food, then 4 of 10 family members cancelled, so a local brunch place it would be for our family Christmas gathering!

I intended to meet up with them that Sunday the 23rd but the old beast I battle interfered then lo within hours they were in the driveway and headed to the backyard just moments after I’d made it out of bed! Thank the Lord I’d showered before my recovery nap; the gals had dressed in warmer garments so their greetings on the Wintry patio meant I could see my beloved’s wonderful adult children after all.

The gifting seemed awkward but we were generous all around anyways then whammo it hit and seizing returned body-wide in full view, right there in the open air: my winter coat and silent eyes all around me. Some had not witnessed this hell before . . . what the hell? I prayed as my body shook violently and slumped down into the lawn chair, with me still wondering why I have to be awake to try to figure out what I am supposed to do during these nightmares when I can do nothing at all?

A plan came to mind and when my body writhing stopped, I dangerously dashed for the sliding glass door whilst screeching from my loins how horrible this is, my deepest sorrow, and my love for them all. I still dunno if anyone heard my guttural tears that began as I closed the door and lasted for the next hour with episodes that returned as I dragged my body back to the bedroom to crash. Again. Then I wondered, where was Steve?

Sounds in the background told the story that they had all left, including my beloved, with them . . . No one had brought me any food (I guess I was sleeping earlier when they were eating lunch with the live Christmas band delighting their visit), said good-bye, or showed any concern for my welfare . . . until 2 of them texted me messages of concern hours later. Ah, the days of living by the (inadequate) communication of our smart phones! It was all I had so it was something I guess. Steve returned a couple of hours later to tell me they had gone on with their plans of go-kart racing. The pictures on Facebook told the story of the great time they had. Do I want to see them? Say what?

This type of unexplained episodes continued, preventing worship at a Christmas eve service the next night so I braced myself to spend it all alone. How could I possibly hold my husband hostage at home with me when a couple of his adult children remained in town? Extreme chemical sensitivity was about to take him down as well when he got to the church and it reeked of burning frankincense so badly he could not stay inside the building. So we watched the services together online at home . . . Silent night, holy night.

Christmas required extra rest before a simple celebration with my beloved: no decorations or fancy foods just some gifts and an appreciation of the meaning of this day that was more apparent for me this year than decades ago. Simplicity does that. Christmas is measured in moments, however small, when you focus on the love that comes from our Savior, Jesus Christ. The traditions are lovely when you have them too. I tried to be positive and loving to my amazing man who has been faithful through so much heartache and sickness from me. How can I possibly sweat any small stuff when he always gets the big stuff right?

Little did we know that we would both become very sick with the flu within 3 more days. We had an errand to run together, at the end of which my beloved was already fading with illness. I joined him within a day and gratefully after some cleaning and making a pot of soup for us both. We still had not gone grocery shopping which didn’t matter since neither of us could eat hardly anything. That didn’t change much as the worst of this flu lasted FOUR DAYS!

Steve has started to surface back into life as he did some online studying; today was my first day I could stand in the kitchen long enough this evening to roast some chicken apple brats in the oven. Yeah, finally I wanted to eat a little more again after incredible pain and nausea lead to the loss of 3 pounds. I started to talk in complete sentences today while bracing my neck, rib cage, and abdomen when out of bed, yeah, afraid of making worse the new hiatal hernia and gastritis diagnosed 2 weeks ago. Can you say “I feel like a basket case?”

By the grace of God we survived our Christmas holiday. My beloved spent half of his vacation time from work battling the flu and barely seeing his adult children visiting from out of state; I never really recovered from this whack-a-this-or-that. This Winter illness is going to take me a few more days from which to stabilize . . . but interestingly the seizure attack episodes that flared at the beginning of our holiday week are down again. Yes, they are down! I have just found a way to take some nutrients that have been critically and chronically low and which are likely a major contributing factor to the convulsive episodes. To become seizure-free would be my desired earthly gift this new year. Thank the Lord we made it to 2019!!!!!!!!

We have been here before, you and I, Gentle Reader, dozens of times with my stories of hope and heartache and hope and heartache again. Call me a Weeble that Wobbles but she don’t fall down, I guess. Are you hanging in there with me too? Jesus makes the overcoming all possible in the end you know. (Please excuse my wee bit of humor, my Lord. Unlike me, you never falter.)

Gentle Reader: I pray that you did a bit more than survive this Christmas too. Happy new year? Oh yes, happy new year it is going to be! JJ

It’s just not the same thing

good, bad, perspective, Christian, surrender, letting go, in Christ

Dinner out with family celebrating from 3 states or an Asian wrap alone at the messy table where you finally were allowed to finish your holiday activities with some kids . . .

A rental car authorized by your insurance company while the truck gets repaired from the deer or a silver beast machine that at least doesn’t reek like a fleabag hotel . . .

An upset stomach that lingered for weeks or a working diagnosis of a peptic ulcer that reveals that the stress was more than just a little of late . . .

A cold sore that just happens from time to time or a flare of wretched shingles caught in the beginning stages, THANK GOD . . .

The stuff of life making a rough landing all at the same time or a financial train wreck in the making as Christmas gift-giving rapidly approaches . . .

Tears of frustration from “not good enough” criticism in a new editing role giving way to compliments from out of no where just 3 months later . . .

Doubts of your acceptance in community volunteer roles with new folks who don’t know your history to appreciation for being part of the team . . .

Missing my husband dearly as he is away travelling to the non-starter reunion when having to practice extreme mold avoidance still . . .

Tears of grief from so very much loss shaking my fragile frame to the bone to a slow recovery days later with a few convulsive spikes here and there . . .

Powerlessness to minister to my brother who suffers post-stroke much greater than I to finally figuring out something I can send him to really help . . .

I really could go on.  It’s just not the same thing when things really do go from bad to worse and you wish you had not feared for the worst because things can really go either way . . . and sometimes they actually go better than expected.  It’s all a matter of perspective in the end, right?  Ugh.  Clearly I am witnessing both phenomenon.  Really makes for uncertain living, I tell ya.

So what shall I do?  To stay in the moment as best I can is what I shall do.  Nap when I can’t concentrate anymore.  Pet the pup for more than a moment ’cause she likes it too.  Do something nice for my beloved Steve.  Move my Bible to that more secluded spot where I can spend time with the Lord without as many distractions.  Dwell and pray, pray and dwell in the presence of my Heavenly Father Who can lift my spirits above that which troubles me each day.  I have given myself over to worldly worries and it is not the same thing as giving it all over to Him.  I surrender.  I don’t know what got broken that I landed here but at least this one I do know how to fix.  Lord willing, things will get better!  JJ

Navigating the Mine Field of Recovery

Those of you in treatment for a serious illness know what this title is all about:  trying to figure out what will bring recovery or remission without making you feel worse!  Oh yeah.  Patients battling chronic illness talk about “herxheimer reactions.”  That is where either die-off or some kind of healing crisis brings on worsening of symptoms and even new, noxious symptoms.  Not fun.  So what is a person to do?  Unless otherwise advised by your trusted healthcare practitioner, here are some things that have been helpful for me:

  • Slow down your treatment protocol or take a break in treatment.
  • Try only one new thing at a time and at a lower dose if possible.
  • Take binders such as benonite clay, activated charcoal, chitosan, and binders of heavy metals (e.g. Intestinal Metals Detox).
  • Drink extra fluids especially pure water.
  • Add some hot lemon water first thing in the morning on an empty stomach.
  • Eat bitter foods which help support liver and kidney drainage channels (such as select herbs, radishes, dandelion root tea).
  • Do what you can to keep your bowels moving at lease once every day, minimally!
  • Step up your preferred method of detox such as salt water baths, infrared sauna, colon hydrotherapy, and exercise as tolerated.  Even massage, physical therapy, and chiropractic care can help release waste products trapped in your tissues.
  • Add nutritional supports for detox as you can such as glutathione (or precursor of lactose-free whey powder), vitamin C-rich foods, and minerals (such as magnesium, Dead Sea salt baths, Celtic sea salt, Quinton Quintessentials, and the like).
  • Make rest a priority!  Healing takes a lot of energy!
  • Pray.  The Lord cares, hears, and will lead you unto Himself if we but call upon His name:  Jesus Christ.  There is no greater comfort than this Gentle Reader.

So this is where I am at these days.  Last month I had to take a nasty antibiotic for the same infection and it hurt me badly so I ended it at the short end of the recommended treatment range.  Then I stepped up nutritional supports before adding a new treatment.  I tried to add a new biofilm-buster when treating a gut infection and reacted poorly, so I will take a break from it for now.  This month I was able to tolerate hot lemon water with manuka honey which is a combo I have not tolerated in years!  Changing brands of glutathione helped me to start taking this critical element in the 3 phases of detox, yeah God!  Also, using a combination of binders has helped slow down some overnight convulsive episodes.  I hypothesized that killing infections  released  toxins inside of the bacteria and fungi targeted, contributing to an increase in episodes.  So these days I am really glad for the leading of the Holy Spirit, and a myriad of webinars from really smart researchers who suggested binders.  “Yeah God” for the relief that has followed.

Psalm, 7, 37, rest in the Lord, wait, patiently, Him, Lord, peace, Christian, healing

I guess then it is time for a nap.  No matter that it is a beautiful day outside.  Naps are a beautiful thingy too ya know.  Lord willing, I am going to get well!

Take care, JJ

 

The Space Between

Perhaps this was a movie title or that of an old business card

Ah, the lingering spaces between events good, bad, or ugly

Do hold some value despite their lack of measurement on scale.

I spend them wandering through the hallways of our home by day by night

From bed to couch to chair to bed, ahhhhh not much going on here

When sickness marks the hours wanting for an answer, something new.

Antibiotics are on hold from now til whenever as this past year ends

With little change beyond fewer hours of the worst of the hell, I guess

And the unwelcome addition of thirty-four new diagnoses to boot!

I have learned so much of what to do and what not to do as well

My stack of papers tell a long tale witnessed by ERs, a few friends,

A weary husband, and scores of medical peeps paid by someone to care.

My goal to find meaning in these places between crises, visits to hell

Has gone dry like a wellspring once filled with life now bone on bone dry

Stained with spent tears, one worn-out puppy, and a purse now threadbare.

The money went away with five years of living the, uh, alternative life:

Don’t call me “disabled” for there still is a bit o’ fight within me, down deep

To endure this long “medical leave” on my way to a makeover not yet revealed.

So as I breathe in the goo between the more defined places of this life

I take note that here is where energy can move along unencumbered

And one day may bring me to my own railway “Station” or at least my next big stop . . .

Gentle Reader, I hope you will be there waiting for me, won’t 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