The How Long Song

11 With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 12 We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ.  2Thessalonians

You just never know who might be praying for you at this very moment.  If you have let your needs be known to anyone who is faithful to pray on occasion, it is very likely that at some point in time you are being lifted up before the God of the universe for His gracious care.  We might never know when that moment occurred or what was said.  We might feel a lightness in our human spirit or we just many never feel much of anything except our suffering.  But we can know this for certain:  that the God of the universe, the one Who made you and me, was listening at that moment.  His heart moved with compassion as your name came before His throne of grace that day.  And His thoughts towards you then and now outnumber the grains of sand on the earth (Psalm 139:18).  He loves you and me so much more than we can ever, ever imagine . . .

Our Heavenly Father has His hand on us.  His hand both reaches out to us and carries us through the mire in our lives.  We know that all things work together for good for His own, even the suffering.  Sometimes we get to see this in our lifetimes and sometimes we do not.  Our awareness doesn’t change the truth of the matter.  He is in charge and will use our suffering for His glory:  a greater purpose than our own lives (Romans 8:28).  Wow.  We may be relieved, blessed, redeemed, or justified too as he pours out His goodness.  We must hang in there for we cannot know what the next moment or next day may bring.  Even when the troubles continue on and on, in the words of Job to the Lord,

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.”

This is such an incredible witness of humility coming from a man covered in oozing boils, having lost all of his earthly possessions and children as well.  I cannot imagine such suffering even on my worst days.  Despite the episodes of wretchedness that continue to plague most of my mornings, afternoons, and evenings  I will remain faithful to my call to love Jesus and trust in His plan for my life.  Otherwise this journey of mine could be deemed meaningless.  Suffering for nothing is the alternative.  Holy cow, that would never get me out of bed in the morning!  A searing post-seizure neck headache and global pain puts the creamy taste of even the best bulletproof coffee down the drain every time.  NO WAY!  Only the promises and reassurance of my Lord and Savior are enough at these times.

The only way for me to endure the stress of my life at the moment is to let Jesus take the wheel.  Sometimes I just sit and stare for many minutes at a time.  Sometimes I am not “productive” in a day until what others would call dinnertime.  And sometimes I get a few things done then go back to bed for a long time.  Graciously there are a few other times of late when I can get up earlier while it is still morning and remain out of bed for the rest of the day.  Hey, I might be getting better after all!  I used to go to bed between 3 and 5 in the morning!  That pattern is generally broken and for that I am grateful.  Like my Grandma used to say, I’m getting there, “slow but sure.”

The How Long Song must leave my vocabulary.  Like the Ann Lander’s article quoting Robert Hasting’s article called The Station, we will “get there” when it is time.  Life is about the journey dontcha know?  Further, we will “get there” when the Lord wills it.  My job is to endure well, the journey I am called to take, seeking His will and keeping an eye out for His fingerprints along the way.  Let me not miss any measure of His sweetness in the sound of a calling bird or the bloom of a wildflower in unexpected places.  He will never lead me astray (Hebrews 13:5) and never require more of me than I can handle (1 Cor 10:12) with His grace.  He is with me now and until the end of the ages (Matthew 28:20), the end of my life.  That is reassuring indeed.

I’ll close with an unexpected blessing that has come right in the thick of all things stressful over here.  Twenty minutes of bliss.  Cool beans, eh?

Julie and Kinsey cruising along in the tandem  outrigger canoe!
Julie and Kinsey cruising along in the tandem outrigger canoe!

Biotoxin illness not Lyme disease for me

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease.  Perhaps you noticed awhile back that I changed the name of this blog?  Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness.  Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis.  I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations.  Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at:  http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below.  There is hope!  Just Julie

Six Common Misconceptions About The Chronically Ill

A fast read on some things to keep in mind when interacting with a loved one battling an ongoing illness. Grace and mercy are helpful companions too. JJ

jeanvieve7's avatarMy Color Is Lyme

A friend of mine shared this today and it is right on the money!!!

psychology today article

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My Top 10 List: Tools of the Trade

Top 10 List

I had a supervisor one time that said, “you are only as good as your tools.”  She was referring to the splinting supplies in the occupational therapy clinic that included state-of-the-art warming trays.  Thermoplastics used in making upper extremity splints must be heated to the correct temperature or they become gummy; they also might burn your patient’s forearm when it gets too hot!  They had a thermometer on the splinting cart which was a luxury in those days.  Now with so many choices of materials from which to choose at a variety of temperature specs, having the right tools is standard practice.

Splinting never was my forte but the advice stuck with me.  My words came back to me when the men in my life would often repeat this phrase when faced with a decision of whether or not to add to the man cave “tool box!”  Yeah, it was usually o.k. with me.  Usually a new kitchen gadget jumped into the shopping cart too.  🙂  These days my tools relate more to gardening and my own health care.  Here’s a new spin on the latter:  your recovery is only as good as the tools you employ for recovery.  This post is an addendum to an earlier blog entitled, Keeping Sane While Recovering from Serious Illness.  With some tools that are tongue-in-cheek and not necessarily in this order, here goes:

1)  Treatment journal, online or in a notebook.  Keeping track of medications, supplements, medical appointments, changes in treatment plan, etc. is critical to success.  Who wants to make the same mistake twice?  My hand-written journal entries are more truncated these days since I’ve got my routine stuff down better and more social supports in place.  I do go back to earlier postings and am grateful for some progress.  Even if I am not doing better in other areas, I know that I am coping better overall; thank you Lord!

2)  Smart phone.  When stuck in bed I can still stay connected to the outside world via my social media favs, email, and text.  The Bible App is awesome and keeps me in the Word on a daily basis with its Bible-in-a-Year reading program.  On my mobile I can also look up what the heck is going on in my body and boost my lame brain with reminders of this or that on my calendar.  I was a late-adapter to the world of 4G+ and cannot see going back to a flip phone anytime soon!

3)  Fingertip less gloves.  My hands and extremities get chilled in the evening.  It’s a battle trying to do a few things when I am awake and feeling better in the middle of the night but feel like I’m freezing!  The drop in body temp can trigger noxious symptoms so I needed to find a strategy for keeping my hands warm.  I was Christmas shopping at Macy’s this past year and there they were in a colorful display:  a table filled with mittens that had removable mitts so you could expose your fingertips.  Your hands stay warm from the middle knuckles through the wrists.  Success!  These even come in handy when taking frozen foods out of the freezer or grocery shopping.  Grocery stores give me the chills year round.  Know what I mean?

4)  A really warm fleece jacket with pockets.  For the reasons noted above, I finally have something to keep me warm when roaming about the house later in the evening.  The softness of the fabric is comforting too.  What did we ever do before Polartec?  Or maybe for you it is a handheld fan?

5)  Fuzzy socks!  Yes they are warm.  It’s the cute designs and fun colors that make me smile a little when my feet are cold.  My cow socks (which were a gift from when my Aunt Patty lived in Vermont) are my favorite.  The thicker the better, over the ankle, and loose-fitting too.  Such a simple pleasure.

6)  Breakfast from a traditional lunch bag.  Mornings are the hardest for me.  Most days I awaken in elevated pain with noxious symptoms that make it difficult to use the bathroom let alone make breakfast.  Finally the Lord led me to a solution of making my breakfast the night before much like I used to make my lunch to take to work each day.  The freezer pack keeps it cold until morning.  Many times I am eating food cold that others might microwave/heat up before mealtime but that is not a requirement for me anymore.  I just gotta get food in my belly to feel better so a chunk of meatloaf for breakfast it is sometimes!

7)  Making the effort to cook or purchase special snack foods that fit within my restricted diet.  For example, I think I’ve finally mastered coconut flour pumpkin (or squash) muffins to comply with my Candida/mold-free/low oxalate diet.  Pulling a little essence of home-baked goodness out of my breakfast bag in the morning with Earth Balance Organic Coconut Spread, I no longer feel deprived!  The recipe is a bit challenging so I double it and freeze them for yummy goodness each morning.

8)  Emergency remedies on hand at all times.  For me this includes high CBD hemp oil and a charcoal-filter face mask that have arrested an oncoming seizure attack when in a public place more than once.  We need to be proactive in managing the crises of our health condition where possible, saving the real emergencies for situations beyond our control, eh?

9)  Slip-on shoes and slippers.  Who wants to bend over and risk falling on one’s head when weak from illness and needing to cover one’s feet?  Yeah, not me either.

10)  Something or someone warm and fuzzy.  Yes, this can include the stuffed kind or your man with generous amounts of chest hair to comfort us when needed.  (O.k. maybe your lady in soft flannel pajamas would apply here instead!)  When my beloved is not home our German Shepherd pup gets a little extra massaging.  Who knew that a big, protective dog breed would love to cuddle?  Elle, you rock.

Well there you have it:  my top 10 list of recovery tools.  Have some of your own?  I’d love to hear about them!  Please feel free to add your comments below.

All You Need is Love

Sometimes you just need Jesus with skin on, ya know?

Tis quite humbling to find true love in the midst of the most wretched time of my life.  Even the worst of the trauma of my childhood cannot compare to the wrecking ball-like experiences of violent, waking seizures every day.  During the bewitching hour of night my beloved often lingers nearby, checking in periodically or lies next to me to warm my chilled, freaking out frame.  Perhaps he has carried me to the bathroom moments earlier or fed me some water to drink in my listless state after an episode.  And then comes the silliness that only a River Bear can muster in the midst of yet another crisis.   Seriously!  He finds a way to laugh in the midst of it all.

Sometimes you just need Jesus with skin on and I am exceedingly grateful love my Steve every day.  Making his lunch bag for work or cooking dinner a few nights per week is my meager contribution of late.  Sometimes I can do housework, grocery shop and laundry too; not so much lately.  It doesn’t seem to matter to my husband though.  He appreciates any of it and celebrates when I can get out and walk the dog or create a piece of jewelry instead of completing the chores.  Peanut butter and jelly sandwiches seem to fill his belly just the same!  What further amazes me is his compliments and words of encouragement when I am at my lowest.  I have never known this much love from anyone before Steve!

To those Gentle Readers who are single:  be the partner for which you seek and wait for the one who will love you above all else after the Lord.  I found Steve after 47 years of living and after kissing a few frogs along the way!  Oh well.  Sometimes you can’t tell a prince from a frog until it’s too late!  Yet when we trust the One who knows and numbers each hair on our pretty little heads, He will bring your night in shining aluminum*, or is that armor (?) at just the right time.  The trials and adventures of life come alive when shared with your intended beloved.

I used to say that I could make a relationship out of anything.  I was dumb and wrong.  Settling for less only brings heartache.  I now see too how the Lord empowers me to love Steve beyond my earthly capabilities and he must be doing the same for Steve as he loves me too.  In doing so we are drawn even closer together.  How does one prepare a lunch bag, clean up the kitchen at 4:00 a.m., and make it back to bed when sickly, nauseous, twitching in pre-tic episodes, etc.?  (How does Steve work full time, serve and worship at church, attend to household tasks, and keep up with athletic endeavors after staying up late with me?)  By calling on the Lord to add His increase, He brings blessings beyond the tasks at hand.  As for me, on particularly bad days I don’t do much of anything.  The look in my eyes is all I can give, to say how proud I am that my husband goes to work each day for us, or for me to muster up the strength to take a shower and wear the jeans he likes the best.  It is enough.  It is love.

Thank you Steve.  Thank you Lord!

Steve and Julie looking out over Lover's Leap, Starved Rock State Park, Illinois
Steve and Julie looking out over Lover’s Leap, Starved Rock State Park, Illinois

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*  The “night in shining aluminum” story stems from the theme of many romance novels:  the dashing young man will eventually scoop the young maiden into his arms and carry her off into eternal bliss as the sun sets.  I believe I had a similar experience the day of my move from the west suburbs of Chicago, Illinois 200 miles east to be with Steve in northeastern Indiana.  We met on Yahoo Personals and had a fairy tale long distance relationship for longer than my Prince Charming desired.  Each time we parted to make the long drive home he would tease me about running off to be with him in Indiana!  The tell tale moment finally came on moving day in November of 2007.  The movers had packed the 24-foot box truck with all of the earthly possessions from my beautiful condo near the Dupage River.  We were standing in the parking lot about ready to go when he popped the question.  Steve looked at me and said, “Julie I’m going to ask you one last time:  will you come away with me to Indiana?”  I jumped into his arms with a resounding “YES” and off into the beast of shiny aluminum we went!  My prince had come for me at last . . .  :J