The Dad that never left

Perhaps it is more of a blessing than anything else that I have more time for reflection these days.  After the double-loads of laundry, medical management, treatment-and-recovery, self care, and various household duties are completed, there are generally more hours than in my past to think about the stuff of life.  On Father’s Day yesterday, I started to notice some new parallels between my past and present.  It went something like this.

I was posting a picture of my Dad and me on Facebook when I realized how his generosity when he stepped back into my life has become an important part of my current recovery from serious illness.  His gift about 6 years ago allowed me to create a garden oasis in our backyard.  Here are two of my favorite areas:

Creating the flagstone patio area required graph paper, a ruler, tape measure, and endless gazing from all angles to make the kidney-bean shaped layout meet the vision the Lord had given me.  In the next 2 years the process continued with a pair of 8-foot custom steel trellises then a “secret garden” area (basically a re-purposed dog pen!).  The planting beds came later as I decided that we needed more privacy from our neighbors behind us and that I wanted to have a garden-view beyond each room of the house.  The bed on the right in the 2nd picture is largely of native plants and a key component in earning a Sustainable Garden designation from our local cooperative extension office.  The aqua custom shade sail was an incredible find from the “sale” page of a company by the same name.  Now that the design is complete the plants have matured and my heart is home.

Dontcha know that my mom was a gardener?  She would hunt down the groundskeeper at the local zoo if needed to obtain a plant start of a specimen she just needed to have in her yard.  Composting, vegetables, a mounded hill, hanging baskets around the hot tub spa . . . she had all the elements that made her heart happy out there in her suburban back

Mom in Spa

yard.  Her creation came together because of the generosity of her parents too.  Some may call it an inheritance.  I call it the chance to create something beautiful from the sorrow of a lost family member.  And I think it’s o.k. to spend some of it to make the process of going on without him or her a little nicer.  Do something that makes your heart happy!

Flash forward 4 years from when the “bones” of our own garden were installed and I am exceedingly grateful for what the Lord has allowed me to design, to create.  Lying sickly on that chaise lounge last summer when it looked like there would be little hope for recovery, brought solace of sorts.  Lying sickly on that same chair this summer after taking treatments that are slowly giving me my life back is bringing hope and the flow of some new creative juices.  My husband, Steve, just smiles a bit when I talk like this.  He knows that could mean a little more trimming around a new garden bed or hauling of something heavy to make it happen.  Oh how he loves me so!  Well I’ll let ya all know how it turns out for sure!

Steve brought me to see this home on our fourth date.  He wanted to know, “if things worked out between us could you see yourself living here?”  Talk about pressure!  I was visiting him in Indiana for the first time from the Chicago suburbs and certainly was not about to make a decision on the spot.  At least out loud, that is!  But I knew that the bush in the front-and-center of the bay window was a Miss Kim Lilac and just like the one I had lost with the townhome when my former spouse left me.  I also knew that the bush next to it was a burning bush that gets a magnificent, fiery shade of red in the Fall and just like the one I . . . well you can see where this is going.  It’s like when I viewed Steve’s profile on Yahoo Personals and saw a picture of him with a radio-controlled airplane that reminded me of the flying competitions in which my dad and brothers flew line-control planes when we were kids.  Of course I knew that the house was a great idea; I just wasn’t going to tell Steve anything just yet.  The home he purchased before we were married became a blank slate for me in remaking so many years that the locusts had eaten . . . . (Joel 2:25)

So I hope you can see how a simple thingy like some flower and vegetable gardens can be so meaningful to someone like me.  The draftsman in my Dad has become the designer in me.  His surprise generosity allowed me to create a living oasis that was an interest I shared with my mom when I became an adult.  Finding a loving place to realize these gifts would come in a way like never before when I found my intended beloved in the arms of my Stevers.  Solace, restoration, and hope were all set in motion regardless of my life’s circumstances according the plans of my Heavenly Dad, my Heavenly Husband; He knew all along the seeds He had planted in my heart long before I could ever dig in the dirt of life myself.  And just as life on this green earth began in the Garden of Eden, so do our own lives thrive in the planted spaces in which we are tilled and turned, watered, pruned, and nurtured until beauty bursts forth in scented color, in hope beyond that which we can see.

How can I be sad about the losses in my life when my Heavenly Dad has always been there with me?  From my garden bench I bid you a “Happy Father’s Day,” Gentle Reader.  I pray that you, too, will live in the fullness of life that grows more grand with each passing day:  a garden oasis in your soul where the One Who knows us so well can make everything meaningful, anything beautiful in the noon day sun or under the shade tree too.  JJ

Dad & me at his trailer

 

 

When the hospital comes home

We all need our spaces, our places of retreat.  Is it that corner where you curl up with a favorite magazine or book?  Maybe there’s an oasis in the backyard, coffee shop, or park down the way that brings a bit of renewal sometime during the week?  Perhaps in a busy household a mother of small children finds solace in the bathroom behind a closed door when sitting for a spell?  During a stressful transition in my life I would drive to downtown Chicago on a Sunday just to “see water” along Lake Shore Drive.  Yes, those moments are precious and necessary for sure.

For those with a special love to share one’s life, the hours alone together can bring refreshment in a whole new way.   Take a moment to enjoy the words of Christopher Marlowe who invites his lover to come hither to a far away place . . .

 Come live with me and be my love,
And we will all the pleasures prove
That valleys, groves, hills, and fields,
Woods or sleepy mountain yields.

And we will sit upon the rocks,
 Seeing the shepherds feed their flocks,
 By shallow rivers to whose falls
 Melodious birds sing madrigals.

And I will make thee beds of roses
 And a thousand fragrant posies,
 A cap of flowers, and a kirtle
 Embroidered all with leaves of myrtle;

A gown made of the finest wool
 Which from our pretty lambs we pull;
 Fair lined slippers for the cold,
 With buckles of the purest gold;

A belt of straw and ivy buds,
 With coral clasps and amber studs:
 And if these pleasures may thee move,
 Come live with me and be my love.

The shepherds' swains shall dance and sing
 For thy delight each May morning:
 If these delights thy mind may move,
 Then live with me and be my love.

The Passionate Shepherd to His Love
Christopher Marlowe

Ahhh, the delight of romance!  Is there any greater pleasure in life?  Well maybe yet perhaps we can agree that there are very few?  😉

During these years of serious illness, my refuge is largely our home.  For now what was once our retreat for romance and the stressors of life has been transformed into a place for a different kind of healing.  Indeed we have created a safe haven from noxious exposures that can make me quite ill elsewhere in the world.  I have become increasingly grateful for the work I had done a few years ago to decorate our dwelling place in pleasing colors with a lovely landscape to view out each and every window.  Little did I know when we were settling in here that I would spend most of the past 4 1/2 years housebound.  Little did I know that right when I started to get a little better, the comfort I found at home was about to drastically change.  I really don’t like it.  See what you think.

Three days per week a nurse comes dressed in medical garb to administer IV infusions.  Our living room morphs into a hospital outpatient clinic for nearly 3 hours with linens draped over the furniture to protect me, to protect her.  Packages arrive via Fed Ex at least one morning per week with bags of drugs on ice, medical supplies, and no presents, no card from mom.  The pup with the big brown eyes is sequestered in a back bedroom lest her presence or fur flying through the air risk breaking the sterile field needed to access the power port in my chest wall.  She whines and yelps for a time then drifts off to slumber as the drip, drip, drip of the IV bag empties into my body.  Gratefully my nurse is very skilled and unassuming.  She has the perfect temperament for all this stuff too.  I just wish we were out shopping instead, ya know what I mean?

I have tried very hard to pack everything up afterwards and in between home care visits.  The IV pole goes behind a door in a spare bedroom and the supplies fill a couple of bins and boxes in our office.  The laundry quickly goes into the washer after Michelle leaves to diminish the fragrance of her favorite laundry soap that lingers no matter how hard we try to avoid it.  Her shoe covers and all the used medical supplies get tossed into our makeshift trash bin and sharps containers.  Within the hour after my “visit” ends there is no trace of the intrusion that these treatments bring to our private spaces (except for the wooden sauna that rests where an entertainment center once was, that is!).

Oh well.  Thereafter with a foggy fatigue and soreness above my breast (from accessing and deaccessing the port each time) I make my way to bed for a very long nap.  The seizure attacks are coming down giving way to a time of rest.  At least I can retreat with a little more peace to the one place that remains undisturbed!

Perhaps one day I will find an internal space that refreshes when those around me can’t quite get it done.  Oh wait, yes, there it is in the shelter of the wings of my Savior, Jesus Christ.  He protects me and refreshes me from the trials, the troubles all around.  With Him I can face another day with renewed strength and courage.  You are my resting place, my hiding place, my refuge, my shield, my home.  Sigh.  This is good.  This is really good, thank you my Lord Jesus. With you I am truly home no matter where I am.  JJ

Psalm 142:5 (NIV)

I cry to you, Lord;
    I say, “You are my refuge,
    my portion in the land of the living.”

 

 

The glove on the sidewalk

In Christ there are no “coincidences,” just Divine touchstones:  those events orchestrated by the Lord for our good, for His glory.  Sometimes we get to see His hand and sometimes we don’t.  And other times things look too dark to come from our loving, sovereign, holy Father.  These can all be quite mysterious this side of heaven, eh?  Less so for me these days.  My faith has grown to trust the Lord in all things (even the ones I don’t understand).  Allow me to elaborate from my world of late.

I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage.  I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar.  Yes, it was the glove I had “temporarily misplaced” last week!  But how could it have remained here in this sort of prominent place unnoticed for seven whole days?  Who knows?  Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement.  The staff person in the office helped me figure it out.  I was dumbfounded!

Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home.  When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this.  Today was treatment day number 2!  Whew and thank you Lord!  I have been taking more naps since it all came together probably due to the stress of it all more than anything else.  There is still more to do but hey, no worries.  I’m on it!

Huber needle

The research the Lord empowered me to do has become another blessing.  First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port.  My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3.  No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon.  Now that’s service!

home, infusions, IV, treatment, Rocephin, ceftriaxone, home care, home health, nursing, port, power port, hospital, treatement, Lyme, disease, chronic
My new treatment space!

In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic.  The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately.  This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions.  As it turns out, I tolerated the combined treatments just fine.  So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps.  I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead.  Cool beans.  But all this still does not mean that I want to become a nurse ya know!

The Lord is in the details of our lives, Gentle Reader.  He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too.  Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff.  We need to move the space from “God is nowhere” to “God is now here.”  He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials.  The trials may be the very place when we may see Him the best.  Take a look this week and be sure to tell me about it, k?  JJ

Psalm 139.17.18

 

 

When the healing comes

Sure has been a wild ride of late.  Here’s a treatment update.

After almost 4 months of treatment, I have improved 28 points on the Multiple Systemic Infectious Disease Syndrome Questionnaire of Lyme Literate Medical Doctor (LLMD), Dr. Richard Horowitz!  Thank you Jesus.

Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care.  Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment.  Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait!  Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit.  Planning this transition has required considerable time, stress, attention to endless details, and work!  The orders are in process with many steps to follow in the next 2 1/2 days.  A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen.  Thank you, Lord, that my brain has come back online just in time.  Whew!

I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness.  This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate.  My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks.  Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions.  Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.”  Please pray too!  I am soooooo ready to start living again!

Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate.  Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month).  And the excitability of my central nervous system is starting to come down at last:  generally fewer and shorter convulsive episodes every day for the past 2 weeks.  This has not happened in the past 4 1/2 years until now!  PRAISE THE LORD!  Experimentation with an Iodine Loading Protocol has further enhanced my results.  I have to think that I am on the road to recovery at last . . .

Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded.  I have been able to get out for a walk once per week and work in the gardens around our home some.  Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too.  And we are starting to plan some of the activities again that we used to take for granted in the past:  think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.

When the healing comes by Lisa Bevill

Enjoy this lovely song that reflects the hope that is becoming clearer for me.  I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you.  He knows and loves you, cares for the desires of your heart too, Gentle Reader.  There are sprinkles of His goodness all around us no matter what the circumstances.  Let not the first time we recognize this as only when the healing comes.  Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too.  Praying for you this night.  JJ

A missed opportunity to minister

James 1:2-8 (NIV)

Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.

Perhaps it is a weakness in my character that requires refinement?  To witness the love of Christ to others in our times of trial serves as both a powerful witness for Christ and perfector of our own faith.  Heck, with the amount of suffering I have endured, I don’t want any of it to be wasted.  Or repeated!  So today I wonder if it is possible that I have missed one particular situation of opportunity:  the Emergency Room.  Finally my broken heart has calmed down enough to consider the possibility . . .

Ten times I have landed in the ER in the past 4 1/2 years.  The first time was at the beginning of this illness with the viral hepatitis that started it all.  The next nine trips were all for wretched, continual seizure attacks that would not stop.  Most times the ER Docs could get them and the pain that accompanied them to stop with a combination of fluids and some kind of medication.  Often the medication made me worse.  Usually I would walk out of there about 5 hours later as a beaten puppy with an exhausted husband faithfully at my side.  And sometimes I even got a break in the convulsive episodes for some of the subsequent 24 hours.  This became less true with each subsequent visit.

Twice during my severe distress, barely able to punch out a few words when having difficulty breathing and my “brain on fire,” I have sworn at the person who I thought was not helping me.  Not cool.  Even a person with Tourette’s Syndrome or senile dementia has some responsibility to try to find reasonable means to communicate his or her needs.  My frustration got the best of me and I forgot who I belong to in Christ.  I forgot Who was in charge those nights in the ER.  I forgot who allowed these refining fires into my life for my highest good.  I lost the image He gave me of His tears as He hung from the cross for me.  I ceased to remember the gifts, the crown of glory that awaits those who are in Christ Jesus.  I certainly did not remember that even these ugly things were working together for my good (Romans 8:28) even when amongst the staff at the hospital.  And my witness for the One Who saved me was tarnished for sure.  In my own strength, I failed to get my needs met and failed to minister.  We left this past Friday night with me weeping, still seizing, and unable to walk . . .

Sure, I am human:  weak, limited in strength and in power.  I pray and my husband prays continuously for all aspects of this illness.  I submit to the will of Christ.  I could also describe for you the victories, the growth, the good things that have happened amidst the traumatic.  For example, Friday night after an IV treatment for chronic Lyme disease was supposed to be for salvaging what remained of my birthday.  That did not happen when I spent the evening in the emergency room.  I was sick all day on Saturday and Sunday.  Even so there were sweet gifts at dusk on each of those days and in the morning on Monday when I got to work in my garden again; for that I am grateful.  My spirit soars out there dontcha know . . .

Here is the scripture that is convicting me on a Tuesday.  See if you can follow where my heart, where my spirit has led me:

2 Corinthians 6:4-10 (NIV)

Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; 10 sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.

Such is the opportunity for ministry of the Gospel of Jesus Christ for those who suffer.  It’s not all about us.  My Lord, help me in your grace to use the witness of Your own life and the apostle Paul who wrote these words to strengthen my own ministry in times of need for your glory.  I have failed and want to do as You would have me do no matter what happens to me.  Please strengthen my beloved Steve as well.  Thank you for his care, love, and companionship in the best of times, the worst of times.  Bless him oh please.  He has been so good to me.

1 Peter 5:4, crown, glory, submit, His will, crown of glory, thy will be done, purpose, suffering, hope, Jesus Christ, reward, heaven