There’s popcorn in the bed

Travelling can be both exhilarating and hazardous to one’s health all the same time.  Was it Mark Twain who said that life is either a daring adventure or nothing at all?  Yeah, he would be right at home in our house or rather our travel trailer!

And so I remain grateful for so much as Steve and I continue to navigate very odd circumstances while on the road. We have now passed the halfway mark in an Indiana, Alabama, Florida, and North Carolina road trip that has provided much material for future blogging already!  This stuff ain’t for wimps and we have proven to be mighty in the Lord.  Here’s a peek:

This morning I awakened at 11:30 a.m. delighted to have slept in after a wretched night.  Steve was arriving home to the tin can ranch after the closing meeting of his United States Canoe Association (USCA) annual meeting.  He was energized beyond his lack of sleep, ready to hit the big water off the coast of Florida.  A few bites of ham was all he needed:  the outrigger canoe strapped to the roof of my truck for the past 1000 miles would see water at last!

A blast of seizures delayed my plans for breakfast as Steve assisted me with a bite to eat and trip to the bathroom. Then he found a deer tick on his back!  We had hoped that the dangerous hitch-hiker was a loner but that was not to be.  Within an hour we had found about a dozen on his clothing and the floor around the camper entry.  Quickly we searched and cleaned, flashlights in hand until every inch of Steve, the dog, and our home away from home was cleared.  [Some parts of the search weren’t too bad!  ;)]  At last I collapsed again, this time into a pile of tears:  why does everything have to be so difficult all of the time?

Steve is a saint, this is true.  He quickly switched gears (and clothing!) for the paddling adventure that awaited him at Amelia Island State Park with a fellow paddler in from Arkansas.  I sent along two bars of chocolate from our hometown chocolatier to thank him for waiting for Steve plus Steve’s lunch that I had quickly assembled.  At last I could ravenously consume my makeshift breakfast of thawed lunch meat, canned green beans, ghee butter, and pumpkin seeds:  low oxalate on-the-road dontcha know!  Steve soon departed after pumping up the tires of my bike for me:  a tag-a-long I’d added in hopes of riding here in the warmer weather . . .

But I was just too tired to do anything but eat and check Facebook after my beloved departed.  Oh how I longed to be with him!  Someday soon we will again bring the tandem outrigger canoe (OC-2)  on such trips so I may join my River Bear on the water.  Yes, Lord:  maybe this year?  Instead Don and Steve will take turns paddling the OC-1 and have a blast surfing the ama (which is the float attached by two poles or iakos off to one side) and waves like true racers.  Meanwhile I grabbed the remainder of my bag of organic popcorn and prepared to return to my own version of life these days in my pretty bed.  And in due time, I did revive.

It’s raining now as this blog comes to a close.  My bike is at the ready, leaning against my inner left leg, with my beloved pup feigning off sleep on the floor just beyond my outer left leg.  O.K. so we are now also initiated to winter camping with way too many toys!  Funny how I don’t regret hardly anything about how we crafted this trip.  Most of the delegates stayed at the hotel where the USCA meeting was held and that certainly would have been more convenient than the RV park we ended up at which was a 25 minute drive north in Georgia.  The air was stale to me at the Hampton Inn with the stale scent of air freshener in the lobby.  Here amidst the palms we have fresh air ALL DAY and ALL NIGHT LONG!  I like that!  The rain dries up quickly anyways in the reddish soil sprinkled with pine needles.  We will avoid the tick path my hubby took with the dog this morning, no problemmo.  Here I can even see a few stars at night peeking through the overhead vents we keep open at night.  That’s refreshingly cool and very romantic too!

I could be at home right now in the frigid Midwest, writing my heart out amidst the foot of snow around our home and subzero temperatures.  This is better.  This is good.  This is what living a life of adventure is all about.  Why wait for a “rainy day” when everything will never be perfect enough to do the things which call one forward TODAY.  This IS that rainy day.  And hey, the rain just stopped!  I do believe I have carb-loaded adequately too!  Where is my bike helmet anyways?

Seeya pup.  Ima hittin’ my own road ya all . . .

girlinrain536970_170993983054615_2036209222_n

 

Something Good, Green, and Pretty

I’m headed to the gardens on Saturday, this time for the Garden Walk at the Allen County Cooperative Extension Office in Fort Wayne, Indiana.  This year I’m volunteering in the Everlasting Cutting Garden as part of my role as an Advanced Master Gardener, however I’ll be wearing a different hat this weekend.  Lord willing I’ll host a table in the Woodland Garden’s first artisan display.  Yes, Trinity Jewelry by Design is on the road again!

Here’s a sneak peak at some new items I’ve added recently, getting creative in the middle of the night!  The black leather bracelet has already sold but we have more styles in the Leather Wrap Bracelet section online at:  Trinity Jewelry by Design.  I’m also working on a cool adjustable necklace collection that integrates the friendship bracelets from Threads of Hope with colorful rondelle beads (think Pandora) and hemp cord.  You are invited to follow me on Facebook for the latest designs and special offers by following this link:  T J by D on Facebook.

If you’re in the area be sure to stop by between 10:00 a.m. and 12:30 p.m.  Take care,  Just Julie

Threads of Hope triple-wrapped friendship bracelet
Threads of Hope triple-wrapped friendship bracelet
Handmade and adjustable double leather wrap bracelet
Handmade and adjustable double leather wrap bracelet
Handmade purple Chevron amethyst leather wrap bracelet
Handmade purple Chevron amethyst leather wrap bracelet

The life I once lived

I’ve taken on a few phrases from others and made them my own over the years, ones that put a bunch of thoughts into a phrase or short sentence.  Not that these would bode well as my epitaph or anything like that mind you!  They just seemed to stick with me.  Here’s a biggie from an old supervisor named Jim.  He was a social worker by training and the director of the inpatient geriatric psychiatric unit where I was contracted to work.  When asked how things were going he would often reply:

“Same story, different day.”

Funny thing is that it was largely true.  On the Generations Unit there generally was at least one person every day screaming non-stop, voiding in an inappropriate location, wandering into another patient’s room unannounced, refusing to eat, refusing to get out of bed, or making up a story to convince him and psychiatrist that he/she did not need to be there.  Yes it was a crazy place.  That’s what you get when the nursing homes send their residents whose behavior can no longer be managed in their facility.  It is also where a depressed little old lady or your suicidal Uncle Pete would go for supportive therapies, meds., daily structured activities, and a round of ECT if needed (aka shock therapy!).  The latter actually worked very well for older adults.  The short term memory loss and massive headache was a major drag for awhile, however!

I worked there as an occupational therapist.  My role was to evaluate the functional level of the patient and assist the team in forecasting discharge plans while providing therapeutic activities.  The goal was always to achieve improved mental status, mood, and functioning for discharge to the least restrictive environment.  That might translate to a person returning home instead of assisted living or remaining in a private room in a nursing home instead of a locked dementia unit.  Sometimes the patient’s goals were reached and sometimes not.  Educating the family on the patient’s needs post discharge was also my role:  an important and sometimes delicate process.  I loved all of it.  I got to apply my skills in standardized assessments, grading activities for the best outcome in lower and higher level cognitive groups, patient and family education, and knowledge of community resources that may be of assistance post discharge.  The two latter skills were collaborated with the unit social workers who also loved working with older adults.  We had a great team back then . . .

I’ll never forget the two weeks that c-diff ran rampant through the unit.  C-diff is short for Clostridium difficile:  an infection of the colon causing horrific diarrhea and inflammation.  It’s a bacterial infection I can now diagnose by smell.  O.k. perhaps that’s too much information?  When virtually all of the inpatients become sick it is only a matter of time before the staff contract the infection as well.  There are just too many common areas in a locked unit that too many people end up touching with a contaminated hand after caring for a patient.  The motto those days was, “please pass the yogurt” or something similar!

Ruth was the best during situations like that.  She was older than me and had been a Certified Nursing Assistant for years.  She could get the toughest old bird to take a shower when he was resisting for days then she would turn around and feed a tender soul in the late stages of Alzheimer’s disease bringing out the patient’s long-forgotten smile producing a long-lost twinkle in her eye.  Ruth often told us stories of her pet pot-bellied pig.  Seriously!  The beast weighed a couple hundred pounds but was part of their family, inside the house, potty-trained and behaved like a favorite feline or pup.  I could not imagine it!  Ruth lived in a suburban neighborhood like the rest of us!  Actually more recently while living in a smaller town with Amish homesteads not far away I can now start to imagine it a little better.  It’s still not for me, however!

The life I once lived was in the suburbs of Chicago amongst 8 million other people.  I was married and lived in a townhouse as it was the only affordable option even for two Master-degreed professionals or DINKS:  double income no kids.  We attended a mega church then a smaller Bible church, organized a yearly block party in the court of our neighborhood, and took walks together in regional parks called Forest Preserves.  I enjoyed neighborhood walks and riding my hybrid bicycle (between that designed for road touring and trail riding).  Holidays were spent with family in various cities as everyone was out of State for our Illinois locale.  Sure there were ups and downs with health issues or financial stressors but largely each day of our lives was the “same story, different day.”  When this got to be too much for my former spouse he found a way out and took it.  Hmmmm.  Alternately I found that you don’t really need a way out, per se.  Sometimes the “difference” we are seeking finds us as part of the Lord’s plan for our lives and it comes from within us instead of in the form of persons, places, or things . . .

Flash forward a myriad of moves of my residence, a change in the car I was driving, changing my job four times, transitions to new hair and clothing styles, some weight loss, and eventually moving to Indiana to marry Steve — over 10 years later I rarely say that old phrase anymore.  Oh even if nothing much has changed lately in my health or the circumstances of battling a serious illness, there are always new discoveries meeting me each day.  Things simply cannot be boring when you marry a man with as much energy as Steve!  He keeps me going just keeping up with all of his activities even when he is not home!  First there’s his four adult children and their families, then there’s his hobbies and sports, and his participation in the worship of our Lord Jesus Christ; the latter always brings news related to our church fellowship in addition to an intriguing message from the pages of the Bible.  That’s a lot to keep track of and I love it.  My garden, online jewelry business, and this blog fill in much of the rest of the time not taken with health-related activities.  How could I ask for more when my heart is full?

Sure my life has changed in the last decade or so and I’ll bet it’s the same for you too, Gentle Reader.  Is that o.k. with us?  As for me I would never have asked for the difficulties that have come in recent years that have added more “excitement” and stress than I could ever have imagined.  The crazy thing is that I would also have never known how to ask for the blessings that have come from this particular path either.  I would not want to be without the blessings just to have had an easier life.  I believe that I am exactly within the will of my Heavenly Father, that He has His hand on my life and my heart warmed in the shelter of His mighty wings.  He goes with me, goes before me this moment and the next; there are signs of His wonders sprinkled everywhere in my days.  I am so glad that I am not bored with my life.  Well yes of course there are times I’d like a little less “excitement!”  Yet that’s when I need to rest my cares at His throne of grace, allow Him to carry me like the famous Footprints in the Sand poem so graphically portrays, or wait on the Lord in the quietness of a moment of prayer . . .

I’m going to keep my head up and do like my brother, Mike, always used to say:  “keep moving forward.”  The life I once lived is gone but not forgotten.  Those memories bring gratitude for all that the Lord has placed in my life today:  a story that is never really the same.  In time my Lord will make all things beautiful.  In the meantime though I think it is finally time for me to go to bed!  There is a calmness in my spirit at last.  The sun is coming up and the birds are singing their morning hello just outside my window.  For me it will serve as a happy goodnight lullaby as I snuggle up to my intended beloved who brings me more joy than I could ever imagine.  Real love and more is here now.

Yes, Lord, it will be a good day I think.  :J

footprints-man-beach-morning

 

When death is no longer an option

Who was it who said to “start with the end in mind?”

 

Well the “end” of everything in life as we know it will not be death per se but the second coming of our Lord, Jesus Christ. He will be bringing about the Great Tribulation, reign on Earth for 1,000 years, bring about the death of Satan and the world as we know it, and bring those who believe in Him to the New Jerusalem.  There we will reign forever with the One True God. I can’t wait!

 

And yet wait we must as it is not the time for His return. So working back from this end I will examine a few personal challenges the current day . . .

 

Brother Mike

Incredibly with a remaining part of one of two carotid arteries, my brother is making slow progress (after a massive stroke two weeks ago). As it turns out his progress may still not be enough to keep him longer in a rehabilitation facility. Enter here the plight of the uninsured. Decisions about his care will be made by a team of therapists who are required on Wednesday to make an “educated guess” as to his the outcome of his treatment 2-3 weeks from now. Healthcare policy largely mandated by the US government requires them to make this determination. Today the Lord led me in “buying” him 3 more days after negotiating with the Physiatrist on Michael’s unit. Go Sister Bear, occupational therapist.

 

Overall it looks like Mike will be discharged soon to a nursing home for placement and not further rehabilitation. This would be sad. His beloved fiancé, Lisa, is doing the best she can to juggle her own responsibilities, visit Mike at the hospital an hour away from their home, and complete paperwork/phone calls/research/etc. needed for his discharge planning. He would not likely receive therapy services thereafter until his Medicaid kicks in; when it does start the amount for which he is eligible could be limited. I just hope they get him the proper wheelchair, feeding instructions, and do more than keep him “clean and dry” in a long term care facility. I don’t have high hopes for this at the moment.

 

In time perhaps Michael will be able to receive skilled therapy services and return home. In time perhaps Michael’s eligibility for VeteransAdministration and community services will be determined. To return home he will need to be safe enough to be left home alone when Lisa is at work while she graciously continues to provide for both of their needs in addition to her 13 year old son. We are all praying for them at this incredibly stressful time in their lives. My burden from afar (3 hours by car) is light by comparison. Sure I am making a few phone calls, found a family member with a commode, and am working on locating a walker but that is small compared to his incredible care needs. I do pray that some additional resources appear soon . . .

 

Sister Julie

This past weekend was a tale of two extremes got me. I started drinking Bulletproof coffee this past Friday: Freshly ground-and-brewed, mycotoxin-free, Swiss water decaffeinated coffee with ghee (butter) and MCT (derivative of coconut) oil. Everything gets blended in our Vitamix for a frothy hot drink that is quite good. (Remember, I am used to consuming unusual foods these days!)   I had also begun taking a special formulation of B vitamins from Dr. Amy Yasko’s website to support some nutrigenomic issues. (Since the Functional Medicine MD set me adrift last week I struck out on my own for new solutions.) Saturday was an incredible day: waking up without seizures and enough energy to get showered and dressed before 10:00 a.m. just doesn’t happen for me! By 10:30 a.m. I had joined my hubby in cleaning our garage! Four hours later we were at a logical stopping point with the project nearly completed. We will recycle, discard, or sell either online or at a garage sale a goodly amount of items we no longer need. Ahhhh. Feels good.

 

Then comes the other extreme: almost 2 days with intermittent seizure attacks and bedrest. Crap. I guess I should have worn a mask when cleaning the garage? Maybe I shouldn’t have increased the MCT oil to twice per day? Or maybe the greatly increased activity level was just too much for this tender frame? Crap again. This is such a high price to pay for just taking care of our home. I enjoyed my time working with Steve so very much. I love doing projects with him! It had been soooooo long since our last big deal together . . . except for maybe driving up to Michigan to see Mike 2 weeks ago. Yeah that one took its toll on me as well. Crap, crap, crap.

 

So the worst case scenario for my brother is another stroke or even death. Since he appears to be stabilizing and improving I can set those fearful thoughts aside. I am quite confused about the Lord’s plan for all of this yet I choose to trust Him anyways. And as for my own illness, well, I guess the moments of improvement give me hope for my own recovery someday too.

 

On Sunday I decided to donn my firearm when Steve was selling some items from our home. He had opted to have the buyers meet us at the house. We took some precautions and everything worked out fine. His son, Daniel made out like a bandit (!) and we are pleased to have made it happen for him. But as that 380 pistol passed from my hand to its hidden resting place later that afternoon, I had to pause for a moment. At another time in my life it would have been dangerous for me to have a firearm in my possession. I had not yet learned how to shoot a gun, been taught gun safety, secured a carry permit, or decided for sure that life is worth living no matter what the current crisis.

 

You see I have faced overwhelming stressors in my life many, many times before. One time I had to ask a boyfriend to stay with me because the emotional pain that I was enduring was so great that I did not trust myself with my own life. I feared what I might do if I were to be left home alone. Flash forward about 15 years and that trust was tested once again. Gratefully eight years later, the overwhelming trauma of painful, daily seizure attacks, my brother’s stroke, and so much more is met with a solid faith in the Lord Jesus Christ and His plan for our lives. He is faithful. I trust in His power, His sovereignty over my fear, my pain, my doubt. Overcoming the traumas of the past by the grace of God taught me that. My firearm is for protection and nothing else.

 

When in doubt, I often start with the end in mind. I have always been a future-oriented person which I consider to be both a quality of leadership and a source of considerable anxiety! Perhaps my writings could talk a little less about my vulnerability and a little more about the Hero leading my heart PERIOD. With the God of the universe at the helm of my life I have nothing to fear, nothing to doubt. I will be able to endure the stress and the stress will be less with my hands off the “trigger” that represents a need for action at the wrong time. To wait, to rest and languish in His loving care helps me transcend the suffering. He has held me close in the comfort of His wings in the past and holds me close in the present as well. Many folks yearn to feel His presence. Hey, I get to feel it every day! He makes Himself real to me every single day.

 

Lastly, the greatest manifestation of darkness in this life is death. One day all too soon His glory will replace the darkness with His consuming light. All things will be made new and we who believe will reign with Him forever! My brother and I will be made whole to love and serve our great God. Wow! So I pray:  Lord, help me to live this truth in today with hope and shining Your light for all to see. Thank You for being here with us in our journeys. If the load may be lighter, please bless us with Your healing grace and mercy. Until then, You are our King and praise be Your name, Emmanuel.   Love you, Just Julie

 

Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..

Some great insights from a fellow sojourner who is near to the side of recovery from Lyme disease. Perhaps I can add making jewelry? :J

My Color Is Lyme

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Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.

So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.

 

Image1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them…

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