Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.

That thing on the horizon

Looks shiny, like it could be something good

Been here before yet it always seems different at first

We long for a better day in this fragile shell of being

Tis our nature and a hunt that can only be satisfied in Christ.

He is the One who satisfies our soul

More glorious than the reflection of an earthly sun

Fulfillment leaving no corners empty or draining

Uplifting, transforming even if our frame stays the same.

For off in the distance is not a new truck or cure or home

Down the road is the answers to all for which our hearts long

Nothing in this life will ever compare to His love

I grieve for those whose gaze falls short, never winning the race of life.

We have arrived at “The Station” at the top of the mountain

When we accept His offer of grace

And the journey will be meaningful in ALL of its parts

Each road trip a destination worth the taking in the end. Amen.

JJ

Countdown to Mayo

I’m kind of freaking out over here. No really. You would think I was preparing to go for the biggest medical evaluation of these 8 1/2 years battling a serious illness, or something. Well maybe I am!

The little city that comprises Mayo Clinic: most buildings and surrounding businesses are connected via the underground Subway Level. You may never have to go outside in the cold!

Some of my medical conditions have flared a bit lately, requiring medication and distracting me from my primary goal at the moment: preparing for a consultation at the famous Mayo Clinic. I have SIX medical appointments this week alone, FOUR next week! Gratefully, the locations of these appointments have put me in the proximity of places from which I need to gather medical records; one of them proved to be timely in addressing the flare-up of an acute, stress-related condition: shingles! Thank the Lord I caught that one early! Ugh. And just about everything related to my care will have been updated by the time we leave for Rochester, Minnesota: the biggest snow belt of the United States of America! Not that I am stressing over that one as well? Maybe so.

My beloved is both helping and complicating the process with his energetic ideas, last-minute plans, and on again/off again pursuit of a better, new-used truck. Turns out we are letting the last one go for now. Yay! There are always extra expenses and things to do when you make a major purchase. Now is not the best time for us to buy a truck! We really need to think through this purchase a little more, focus on our trip to the “Mayos,” and get some other proverbial ducks in a row. Steve will still be off working hard and doing his various activities in the meantime before we leave . . . seeya for dinner or at bedtime when you return home my love. (Yes, we still have a very late household.)

What’s left to do:

  • Receive the medical records from the Doctor and 2 hospitals I have visited the most.
  • Organize and condense hundreds of pages of test results into about 50 pages, labeled in some meaningful way.
  • Confirm arrangements with the hotel who promises NOT to use fragranced products in our room prior to our arrival. So bummed that an Airnb didn’t work out nor the Serenity House Network.
  • Pack WARM clothing, dog food, new dog medications, numerous supplements and medications for me, and enough food to get us through the first few days in the northern tundra. Gratefully our hotel room will have a kitchenette; it’s too frigid for our usual mode of camping via our “mobile clean room.” Most important on the packing list of my beloved: cross-country skis! I may take my snowshoes as well.
  • All the other stuff you do when away from home like laundry, placing he mail on hold, watching the weather here to have the snow shoveled when we are away, watching the weather there to confirm suitable road conditions, and the like. Should be less work than camping for sure!

While this process is exceedingly stressful when still battling a serious illness with bad convulsive episodes virtually every day, I am exceedingly grateful for the opportunity to got to the Mayo Clinic. Thank you Lord! It’s rated the best hospital in America! The top Doctors in the area of autoimmunity and neuroimmunology conduct research and see patients at the Mayo Clinic in Rochester. I have heard first-hand from some of my new Doctor’s patients and they state that he provides excellent care. Yay!

I am also glad that I did not go the Mayos 3 years ago when I was looking for new answers to troubling medical questions. Since then, we have further tested and treated for Chronic Lyme disease, lowered my burden of heavy metals, healed from various dental procedures and treatments, investigated numerous other potential infections, addressed/ongoing orthopedic issues, completed a comprehensive cardiac work-up, and even received genetic testing and coaching. It’s been a busy 3 years! All of these conditions could have explained this horrible illness but they did not. Good news: I can now tolerate more of the supplements and medications that are needed to re-build my health (which was impossible to do without triggering convulsive episodes in the past).

My prayer has always been that something of value would come from over 8 years of daily struggle. The Lord has been faithful to see us through even the darkest hours where demonic influences were palpable, suffering greater than I can even describe. Both Steve and I have been tested beyond what we thought we could ever bear yet the Lord has met us, sustained us, even carried us. There were sweet moments along the way that served to encourage us. We understand that others have been encouraged by our testimony as well. Yay God! Overall, these past 3 years preparing to go to the Mayo Clinic certainly were not wasted, that is for sure. It’s time to rally for a cure.

Let’s hope so, eh Gentle Reader? We are hopeful again! JJ

Twas the morn of endo

Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.

Will you still love me tomorrow?

The question we simply don’t need to ask.

The question that I simply don’t need to ask again, yet have wasted too many moments wondering, is the one posed in this song by the Shirelles.  Oh and Dionne Warwick.  And maybe Amy Winehouse too.  Such a classic song!

Each time I wind up in the Emergency Room, I wonder if my beloved will still love me the next day.  This morning he referred to yesterday evening as “another date night!”  Unbelievable.  All this love continues after about 16 trips to the ER in the past 7 years.  I am humbled and blessed beyond measure.

This blessing is hard to see sometimes when my body is breaking down in a new way once again.  Looks like an ulcer in the lower part of my stomach is the reason for a month of abdominal pain.  Over-the-counter and walk-in clinic medications did not solve the problem.  So after a CT scan under the influence of anti-allergy drugs and some more potent medication, I am in less pain . . . but oh so worn out.  I’ll see a gastroenterologist this coming week with an endoscopy likely to follow.  Going to try to keep my stress level low in the meantime.  I mean I don’t have any other of the risk factors that contribute to an ulcer (e.g. spicy foods, caffeine, alcohol) unless of course there’s a hidden H. pylori infection.  So more testing is needed to figure this one out.

The other “love” that could be easy to question is that of my Heavenly Father.  But I don’t.  I look around and see tremendous blessings in my life in that I have a warm home in which to convalesce, enough food and clothing, and finances for the important stuff.  My beloved is faithful and loving like “Jesus with skin on.”  What I don’t understand is how these illnesses isolate me from friends and family outside of our home and most notably, my husband’s adult children. 

My extreme sensitivities continue and are triggered by the fragrant products they (and many folks) tend to use.  We are just not sure how to manage this reactivity with our Christmas gatherings rapidly approaching.  We already had to decline having both daughters stay with us (which was a delight to host them in years gone by).  A trial of having his oldest stay with us for about a week 2 months ago, despite extreme precautions, triggered a violent relapse in the convulsive episodes.  I am now sensitized to even trace amounts of fragrance on her coat that was kept in a suitcase in our garage in between scheduled visits.  Then I had a seizure spike 2 days ago when she returned from some travels to pick up her suitcase . . .

My heart is breaking from more than the loss of acquaintances and friendships:  my relationships with my husband’s children never really got going.  Steve and I have been married for 11 years and I got sick just 4 years into our marriage.  I have been battling a serious illness for most of our marriage!  You could say that my limited visits with his adult children gave them more time to adjust to the fact that their father is remarried.  Well, o.k. maybe that’s it.  I already sensed that I needed to lie low during their visits in the beginning anyways, focusing on serving them good food and comforts and not speaking up too much nor complaining when their Dad jumped to see them, rescue them when the trials of young adulthood came along.  No problem.  Fix the car?  Pick them up at the bus stop?  Join them at church?  I just had to stay home due to illness factors and couldn’t go with their Dad to help them, that’s all.

They don’t really know me either though.  We profess the courteous “love” greetings yet would I ever really see them again if something happened to their Dad?  Oh dear, I should not even go there.  I now realize that this barrier between us is completely out of my hands.  Remember when I sent along baked goods with Steve for when he visited his family in Arkansas without me 2 weeks ago?  Yes, I need to rest in the hope that what I could do has been done as unto the Lord.   My Jesus and my beloved know my heart.  They hold together the parts in me that are breaking and the inner tears.  And the Lord also holds me in tender moments like these right now.

I need to know that your love.  Is a love I can be sure of.  So tell me know so I won’t ask again.  Will you still love me tomorrow?

Yes, for sure.  JJ

Jeremiah, 31:3, everlasting, love, doubting, Christ's, Lord's, faithfulness,what He thinks of me, endurance, love through the trials

In a far-off land the LORD will manifest himself to them. He will say to them, ‘I have loved you with an everlasting love. That is why I have continued to be faithful to you.’