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?!    :]

 

Skype Devotional/Prayer Group Forming

Matthew 18.20 Two Gathered in PrayerHey Hope Beyond Friends who are battling illness: I’m putting together a Skype devotional/prayer group for those of us who are largely homebound. This is for persons who are followers of Jesus Christ of the Bible.  You’ll need a computer with a camera, Skype, and to be registered on Skype. I’m thinking 8 people per group (and starting additional groups if more are interested), lasting 45-60 minutes, once per week. The format could be: Get acquainted, Bible-based devotional, short prayer requests, prayer. These are “come as you are” which means just get dressed and turn on the computer!  This first group is for gals.  I’ll collect names and facilitate additional groups that you will run yourselves if we have more gals or guys who are interested.
Make a comment below with a message and your Skype name if you are interested.
Thanks and take care, Just Julie
UPDATE:  We had our first call at 8:00 p.m. EST on Thursday, September 18th.  Such a sweet time of blessing we had!  Looks like we will continue at this time and Yes there are openings for a few more folks.  Would love to meet you!  JJ

Handling loss is a skill for living well

Some disappointments this past week have reminded me of the importance of handling “loss” well.  Change is a certainty in this life and many of us have had more than our share of both the voluntary and involuntary fare.  Change often means letting go of something or someone we cherish.  For the Christian we can view change as part of becoming more like Christ, maturing in our faith, and working out the details of our lives with the Lord.  It is necessary!  And all too often it doesn’t feel well though.

Here are 5 changes that came in rapid-fire succession for me lately:

  1. A counselor that I have been seeing to handle the grief of this serious biotoxin illness I’m dealing with, suddenly discharged me from her care.  A week ago Tuesday I had a major seizure attack episode in her office and had to leave abruptly.  The episode went on while standing outside the front door to her office then continued as I struggled to get back into my truck.  An hour and a half later I was able to leave to return home.  She checked on me multiple times during the event and even called me a few times to discuss our next appointment.  Until that day she had been opening the window in her office for me to increase air circulation before our starting time.  When she did not do so until I was about to walk into her office (on a rainy, humid afternoon), the scented “warming candle” residuals, soil aerosols from her live plant, and possible contaminants embedded in the office carpeting were too much for me.  She is now unwilling to meet me in a nearby library conference room since her driving time simply would not be reimbursable, won’t fit into her busy schedule.  So for now it’s bye bye Julie.
  2. For the third year in a row I had to miss my husband’s United States Canoe Association Nationals due to illness.  I am sad.  I love watching Steve compete in his surf ski (racing kayak) and missed both of his races including the exciting trial class event with our outrigger canoe.  It sounds like there was a photo finish as he crossed the finish line and I was not there to take it all in or take pictures.  Sigh.  We love taking road trips together.  Even if we could have afforded the expense of travelling together, I cannot tolerate the fragrances of hotel rooms, conditions of camping, or the unknowns of renting a travel trailer.  Such is life with Multiple Chemical Sensitivity and Chronic Inflammatory Response Syndrome!  I stayed home with our German shepherd pup in our “safe home.”  Parts of the two full days were actually better by the way:  I got to dig in the dirt of a new garden bed.  The second day was terrifying however with two, severe, hour-long episodes while home alone.  My Jesus saw me through when I thought I would stop breathing.  I did not.  My husband needed this time away.  Besides, having someone stay with me or check on me in the end dangerously increases risks to my health.  We made tough choices indeed.
  3. I realize that the isolation that accompanies this illness is killing my spirit.  I sense my social skills eroding.  Sitting in my truck in a cemetery adjacent to a Garden Walk event on Saturday, I nearly panicked because I was late and there were cicadas plunking my windshield as I tried to wrap up a phone call with Steve!  I had not talked to anyone but my dog for 24 hours so I was glad for his call.  However, I had felt awkward and alone getting ready.  And I know that these were just feelings.  The evening out went fine with barely a few tic zips, enjoyment of select entrees, and meeting some really nice fellow gardeners.  It’s just that the social part of my life is so unnatural, absent, and different now.  Just like when I went through a divorce, lots of people have left my life once again.  Reaching out has been tough when it’s so complicated just to get together.   I will keep trying though.  I have to . . .
  4. An occupational therapy (O.T.) recruiter for an agency for whom I used to do contract work called me TWICE this past week!  I guess they really needed someone!  Oh how I miss working.  Last night I did the equivalent of 4 hours of (free!) continuing education credits for my O.T. license, inspired perhaps by the phone call earlier.  Maybe someday there will be an equivalent at-home professional job that I can do that will utilize my skills.  Just gotta get rid of some daily seizure attack episodes first, eh?  Today they lasted most of the day.  My “job” was to take a shower and make dinner.  Done.  Don’t need an App to keep track of this kind of schedule, I tell ya!  Sish.
  5. Most of the time my worship is in isolation.  For a long time I looked to my husband to try and fix this one for me.  Why wasn’t he trying to find a church for us in a newer building that wasn’t water damaged?  My criticism of him and “our” church goes on from here; it is not good.  I have tried to fill the void with a read-the-Bible-in-a-year App, Christian radio talk shows, following various ministries via email or Facebook, interacting with other believers via the same, and continuous prayer throughout the day including praying with Steve.  But I crave real Christian fellowship.  I crave Women’s Bible Study.  There wasn’t even an outdoor baptismal service with our church this year and the annual hot dog roast will be a “no” in October due to the noxious exposures from the campfire.  (The smoke was hell for me last year.)  My heart is breaking on this one.  I know the Lord sees it too.  I trust Him.  Just today I got the sense that I may need to reach out a little more and not wait for someone else to fix it.  I contacted our “Encouragement Ministry” leader about starting something with others who are home bound and I  am waiting to hear back from her.  Hopefully it will be soon!

While we could discuss the solution to these problems the more important point here right now is that I know that each of these will bring goodness in due time.  I have realized the promise of the Lord “restoring the years the locusts had eaten” (Joel 2:25) after my life fell apart in 2003.  Joy returned and reminders of it are all around me.  I have chosen to write about these things in hopes that you will pray alongside me for the Lord’s will and redeeming grace for these recent losses.  Perhaps you, too, have loved and lost much while enduring all kinds of trials.  Please let me know about them and I will pray for you.

Gentle Reader:  we are to stand firm on the foundation of our faith in Jesus Christ who will:

  • Make all things new.  (Revelation 21:5)
  • Direct our paths.  (Proverbs 3:5-6)
  • Extend His love, compassions, and faithfulness in newness every morning.  (Lamentations 3:22-23)
  • Remember us in our low estate with love that endures forever.  (Psalm 136:23)
  • Reward us for our faithfulness.  (Matthew 6)
  • Bless those who are good stewards of time, talents, and resources.  (Luke 16 &  Matthew 25)

And so much more.  I am encouraged.  My Jesus sits on the throne of my life and the throne of grace.  He will make beauty from the ashes (Isaiah 61) which are the losses that characterize living a full life here with Him as our Lord and Savior.  I trust His Word on this and hope that you will too.  Let us rejoice with great expectation for the goodness to come!

Isaiah 61

10 I delight greatly in the Lord;
    my soul rejoices in my God.
For he has clothed me with garments of salvation
    and arrayed me in a robe of his righteousness,
as a bridegroom adorns his head like a priest,
    and as a bride adorns herself with her jewels.
11 For as the soil makes the sprout come up
    and a garden causes seeds to grow,
so the Sovereign Lord will make righteousness
    and praise spring up before all nations.

 

Wide-eyed and bushy tailed: Part 2 of 2

So our great adventure really happened:  about 350 miles, 2 cities in Michigan north of us in Indiana, one cooler of drinks-n-foods, and lots of excitement as Steve literally flew through the air!  My beloved thought we were going sailing after multiple gift clues and our plans changing 5 times!  Of course he only know about the date changes . . .

I love you Steve.  So grateful to share your special day with you.  Just Julie

P.S.  I am pooped!  :J

 

 

Wide-eyed and bushy tailed: Part 1 of 2

This pup can sleep no matter where she is or what time of day it is.  I’ll bet she is not alone in this.  Most dogs can sleep all day long if they like.  I guess it helps to have 2 layers of eyelids with one covered in heavy fur!  And in my experience, many of the male homo sapiens genre can sleep at will too!  🙂

Squinting early Spring 2014crop

 

Not so for me.  After a rough night, rough afternoon, and low grade episode in the middle of the night it’s as if I have toothpicks holding my eye lids open.  In about an hour my alarm will go off in anticipation of a birthday surprise outing for my beloved husband.  It has been re-scheduled or re-configured six times over the past week with the location, State, and parties involved changing many times due to various extraneous factors.  He only knows about the date changes.  Steve has been a champ through it all!  I kept him guessing with clues and silly gifts.  The changes of date, time, etc. has actually helped keep everything a secret.  I just hope I hold out too!

Sometimes sheer adrenaline gets you through that which you could never do on your own.  I know my Jesus is out front so please:  take the helm!

Seeya later with all of the details and pictures.  I’m headed for a puppy pillow.

:J