When you search no more

Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.

And so we shall, eh?

He is out of the woods

As soon as we made it across the States to his hospital bed in that massive place

I was overcome with the smell of sickness, gloom, and death beeping along the layers of sheets and tubes.

Therein lain my dear brother, eyes swollen shut and breathing guided by the lifeline protruding from his mouth. Are you in there Mike?

Four days he would sleep, barely stirring when painful procedures ensued . . . then we knew: he is waking up! And out came the feeding tube with one sharp yank. Ouch!

It wasn’t long before he was demanding this and that, or so I am told, as the old cravings for smokes also awakened in his stiff, ace-wrapped frame. Let’s hope “the patch” holds him over.

I can hope for better days once he starts to move a little more yet I know better than that. He and his love/caregiver will have to figure out how to make it past this first major crisis since his stroke 6 years ago. Yet there were others with seizures from meds prescribed amiss.

Long term care sounds better to me but I am not the one in the driver’s seat even as my beloved and I returned home from our whirlwind Sunday visit. So glad there will be more days together, to come.

I saw her love for him and that was enough for me to let the “big sister syndrome” go. To just listen will be my way of showing support when she calls me now and then, returns my own.

Dear Mike, do find meaning in this broken phase of life: something to give yourself to and to care for the vessel albeit wrecked with pain and parts that don’t work right at all. Our Lord will sustain you and treasure you through the many hours alone when your body begins to spasm or shake. This I do know. He is there both inside and out of the woods you know . . .

I love you Mike. JJ

UPDATE: Mike woke up about 4 days later and was discharged home another 3 days thereafter, to be with his fiance. He was shaken up from not remembering those early days in the ICU yet is seeking a renewed direction for his life. This is good! Oh, and his insurance issues giving rise to medication issues and this medical crisis are largely resolved as well. Praise the Lord!

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.

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.’

Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes
From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J