Just Julie Treatment Update

Brief update:  I seem to be in what an airline pilot might call a “holding pattern” lately.  When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms.  Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results:  high potassium and very high mercury.  Yipes!  So my husband and I are investigating chelation therapy.  I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions.  In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution.  We will be covering this in prayer.  For most folks chelation is a difficult journey.  But hey, I’m familiar with that already, eh?

More details:  The daily 2 to 5 hour waking seizure attack episodes continue.  One day each week the episodes exceed 8 hours on and off during which I am largely bed bound.  If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours.  The rest of those days is pretty worthless.  I have at least two “worthless” days at home each week anyways, regardless of my activity level.  These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home.  I may see you here at the computer and mope through other very sedentary tasks.  Dinner may or may not get prepared.  Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me.  When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack.  This happens twice per week.  I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring.  Many days the tazoring wakes me up in the middle of the night.  Good grief!  That’s what happened last night prompting this blog.  When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely!  This also happens twice per week on average.  The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so.  If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all.  I love it when the latter happens!  The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day.  I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance.  Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed.  My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate.  The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract.  Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions.  Not good.  This syndrome has a name:  Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity.  The good news is that my gut health is better than it has been in a long time.  That tells me that the dietary strategies are working!  There are times when I feel more alert and my thinking is clearer.  At times my memory is better.  To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design.  And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick.  (For more on that story, see the About Julie page.)  I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager.  No work or disability income is in sight.   The Lord has provided for my every need through my gracious husband and His grace.  Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before.  Steve is my hero!  DSCF0245We trust in Proverbs 3:5-6, Psalm 41:3Psalm 71:14, Revelation 21:1-8 and more.  The Lord is faithful to His Word:  we have seen it, we hope in it, and His living Word carries us through it all.  Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid.  That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me.  Oh Gentle Reader, can you say that too?

So many unknowns fill our days.  We can respond with woe and fear or we can respond with FAITH.  And our faith is only as strong as that to which we apply it.  I hope that you will join me or have put your faith in the omnipotent God over all.  Yes, I wrote all. 

Nothing less will do when faced with the next, er, bite in the shorts.  You know I had to say it didn’t you?!    :]

 

Anatomy of a Garden Bed: Luke 7

While a large crowd was gathering and people were coming to Jesus from town after town, he told this parable: “A farmer went out to sow his seed. As he was scattering the seed, some fell along the path; it was trampled on, and the birds ate it up.

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Nothing going on here at the nursery: barren ground and a dead stump provide a perch for this lone feline.

Some fell on rocky ground, and when it came up, the plants withered because they had no moisture. Other seed fell among thorns, which grew up with it and choked the plants.

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In the absence of compost and amendments, nothing would grow in this soil!

Still other seed fell on good soil. It came up and yielded a crop, a hundred times more than was sown.”

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Compost, Canadian peat moss, hardwood mulch and fertilizer should give these newbies and transplants a head start in their new home.

When he said this, he called out, “Whoever has ears to hear, let them hear.”

When we do not heed the Word of God all our efforts waste away, crumbling back to the earth like the dead plants in this compost pile.  How better to thrive in the Word of wisdom!
This passage provides important lessons for our lives.  When we do not heed the Word of God all our efforts ultimately waste away, crumbling back to the earth like the dead plants in this compost pile.

His disciples asked him what this parable meant. 10 He said, “The knowledge of the secrets of the kingdom of God has been given to you, but to others I speak in parables, so that, though seeing, they may not see; though hearing, they may not understand.

Without the counsel of the words of Jesus Christ our lives are like chasing the wind.
Striving in our own strength, is like blindly chasing after the wind.

11 “This is the meaning of the parable: The seed is the word of God. 12 Those along the path are the ones who hear, and then the devil comes and takes away the word from their hearts, so that they may not believe and be saved.

Barren ground shall not awaken without the light of our Lord and Savior.
Barren ground shall not awaken to the truth without the light, the Words of our Lord and Savior.

13 Those on the rocky ground are the ones who receive the word with joy when they hear it, but they have no root. They believe for a while, but in the time of testing they fall away. 14 The seed that fell among thorns stands for those who hear, but as they go on their way they are choked by life’s worries, riches and pleasures, and they do not mature.

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Plants weaken and become subject to pests and diseases when choked together.  Perennials that mature properly require care, division, replanting, water, sunlight, fertilization, and time to grow in due season.

15 But the seed on good soil stands for those with a noble and good heart, who hear the word, retain it, and by persevering produce a crop.

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The newly pruned and divided stella d’oro daylilies will flourish next year, finishing this season well and providing plants for the new garden bed too.

 

Resting in God's creation
How glorious it is to rest in God’s creation and plan for our lives!
Finished well.  Thank you Lord!
Finished well. Thank you Lord!

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P.S.  I’m thinking of putting together a group Skype devotional and prayer time once per week with others who are largely isolated for whatever reason.  The focus would be open and based upon belief in God through the person of Jesus Christ of the Bible.  Please leave me a comment below if you might be interested.  I’ll do a separate blog on this soon!  Take care, JJ

If the story made a difference

A blog is an interesting vehicle in one’s life.  You get to write about anything you want and just about anyone, anywhere can read it.  At least that is how this blog is structured.  Funny thing is that once you get going on a particular topic, there’s a high likelihood that you might reveal a little more about yourself than you might if you were in person.  The ideas just flow when here alone at the keyboard and if it is a personal blog (instead of a professional or business forum) well things can get personal quite easily!  If you are honest, that is!

Why bring this up?  Well I have come to realize that some tragic events in my childhood are influencing the nature of my recovery from illness.  The question I have grappled with of late is whether or not to write about it.  Oh the story is juicy enough to draw some interest and you bet I’ll let you know how the Lord has helped me endure and overcome the pain of it all.  Healing has come for these hurts because of the love of my Heavenly Father manifest in my personal relationship with His Son, Jesus Christ.  The Holy Spirit has guided the process:  providing counsel, “Jesus with skin on” in the form of loving sojourners, helpful tools, and His glorious written Word leading me to hope.  So why share the hairy details anyways?

Possibly I would because horrific illness may trigger past hurts for others more than me.  I don’t want you to feel alone if that is part of your story.  New trauma often stirs up old wounds:  at least the one we might find are not fully healed.  We might not know that they are not fully healed until something new happens in our lives as in the course of serious illness.  I view many of these events as “another involuntary growth experience” and am often left feeling more whole when I work through the tender issues correctly.  The problem is that when you happen to mention to a medical professional that waking nightmares, seizures, involuntary screaming episodes, and convulsions have triggered scenes that might be from your past YOU GET A PSYCHIATRIC LABEL AND THEY STOP TRYING TO TREAT THE MEDICAL ILLNESS.  This is frustrating indeed!  The medical illness came first.  Healing secondary issues is a bonus, like clearing out cobwebs in a musty garage.  Cool beans and all that jazz.  Keep the treatment focus on the root cause people!

So for me to share old or emerging facts from my abusive past runs the risk of my physical symptoms not being taken seriously.  Convulsions require serious examination, eh?  I paid dearly this past Saturday for venturing out on a private lake for my husband’s canoe and kayaking class hosted with a friend.  Even though the water was treated with blue dye to prevent algae growth, it was there anyways.  I have never had such violent, animalistic, horrifying convulsions in these 2 1/2 years of seizure attacks as I did one hour after I returned home.  You would not believe the level of torment I endured continuously for 2 wretched hours!  The rest of the evening was awful too with a rebound of episodes on Sunday.  I lost over a day of my life in payment for enjoying a paddling outing with my beloved and some friends.  The biotoxin illness won and I lost.  Tell me how this is all in my head as the working out of an unhappy childhood?  NO WAY.

If the story of my sorry childhood made a difference to the “Hope Beyond” I would like the Gentle Reader to find, I would write about it here.  However in doing so I would risk selling myself short in the process for those who might not follow my whole story.   One of my blogs generally covers only one topic as in a chapter of a book.  Further, reading a posting about a waking nightmare that was remarkably similar to a very bad day a long time ago would put the focus on the past and not on the exposure to cyanobacteria earlier that afternoon.  And in the end we bloggers don’t need to share everything about ourselves to be heard, to make a difference in the literary world.  We only need to be genuine to ourselves, to our subject matter.  Should I need to share a scene from my past to make a point I might do so briefly.  To say more will put the focus in the wrong place.  I need to keep my eyes fixed on my great expectation for what lies ahead of me (and all who believe), in the glorious presence of my Lord and Savior.  One day when my life on this earth is over He will make right all that was not right back there and heal me then, if not sooner.  I believe there will be a blessing for my stewardship of the experiences, sacrifices, ministries, and choices of humility He allowed in my life if I have succeeded in acting according to His will.  And if I have acted according to His will then it is only because He helped me to do so!  This stuff is way too hard to make it on my own.

The story that truly makes a difference is not mine.  The story that has the power to transform the lives, the hearts of mankind is that of the person of Jesus Christ.  Let His own  Words of His life, His pain and suffering as chronicled in the Gospels (the first 4 books of the New Testament in the Bible) lead you to His throne of grace.  Lay your burdens before the One Who is, Who was, and Who will forever be.  Let His love redeem the pains of the past so that both you and I may live freely in His presence forevermore.  What great fellowship we shall enjoy one day soon!  What great joy we will know when He calls each of us by name Who knows Him as Lord and Savior.  Oh how I long to hear His stories of how much He loves us, He takes our prayers to the Father, and has prepared a glorious place for us to dwell in together:  Him and I; you and Him; the fellowship of believers; the cherubim and seraphim.  Yeah that’s where my focus outta be!

Philippians 4:8New International Version (NIV)

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Oh yeah!  Now that’s some great writing!  ;J

That’s what friends are for

Mrs. Wesolowski would turn over in grave if she saw this title and its dangling participle.  So sorry my late English teacher.  It’s even a song title and a great pop tune as well:

Tonight I got to go back in time to my working days.  I had the privilege of talking on the phone with 2 ladies via conference call that I worked with over 10 years ago.  The two of them are long time friends from college.  As for me, “P1” was the Certified Occupational Therapy Assistant (COTA) in a skilled nursing facility (SNF) where I was her supervising Occupational Therapist.  She was hard-working, dedicated, thorough, and very kind with all of our rehabilitation patients.  We had lots of memorable moments and a few we would rather forget as well.  It’s all in the mix when you serve others in the zany, fast-paced people business of healthcare.

“P2” was also a COTA in another SNF when we met, providing quality therapy services over the weekend.  We laughed and got an incredible amount of work done with residents we hardly knew when covering for the regular therapists.  On call work isn’t for everyone when you have to provide billable services in a place where you can hardly find the resident’s rooms in an unfamiliar setting!  What I remember most about P2 was our 1 1/2 years together when I assisted her with a Fibromyalgia Support group she founded for Central DuPage Hospital.  I learned a lot from P2 as she cared for those who attended as friends, as sojourners, emphasizing the importance of keeping our focus on wellness, not just illness when battling chronic pain.

I am so grateful that P1 put this call together tonight.  We got to talk “shop” for the first time for me in a long time.  They also understood the administrative details with which I have struggled in my brother’s care after a stroke 3 months ago.  With P2 we share a strong interest in gardening:  in the past P2’s home was a registered bird and butterfly sanctuary in the west suburbs of Chicago (a very unlikely place for a natural retreat!)  With P1 I share overcoming a traumatic event at our place of work when an administrator verbally attacked her in front of a regional rehabilitation manager who did nothing to defend P1.  She ended up resigning to save her dignity and avoid having to travel many miles between two facilities with the second one even further from her home.  I respected her tremendously for moving on.  We lost a dedicated employee that day but I gained a friendship that has endured more than this . . .

Their sons are now nearly grown and I have moved 200 miles away to another State to remarry and start a new life.  P1 is back in occupational therapy in a SNF near her home and P2 provides Ai Chi water classes to those seeking peace through gentle movements and relaxation techniques.  Both apply everyday what it means to be trained in the field of occupational therapy:  adapting to the challenges and opportunities of life, enriching the lives of others, connecting with those we hold dear.  I do miss working as an occupational therapist.  I also recognize that I am grateful for the skills I learned in O.T. that I use everyday to cope with an ongoing, serious illness.  Sometimes I wish I could go back in time to relive some of those days when a twinkle in the eye of an older adult was my greatest reward for a job well done.  Or when I hear a whoot! whooot! from behind a closed door from a patient who has just regained the ability to care for himself because of the therapeutic relationship with his seasoned COTA.  Those were the days, eh ladies?

As we move forward in life the focus must always change at some point.  I do wonder if I will get to share a cup of coffee or tea with P1 and P2 in person?  Or maybe we will walk in P2’s garden along the wetland in her backyard and marvel at the 80 birdhouse gourds she might harvest once again.  We probably will never work together again and that’s cool too.  But hey, let’s never lose touch o.k.?  You have filled my heart with goodness this night and I appreciate you too so very much.  Seeya on Facebook.  Love to you both,  Just Julie

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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

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