Treatment Update

OC, OC2, outrigger canoe, tandem, kayak, canoe, 2 man, Hawaiin, boat, Huki, canoeing, kayaking, together, marriage, paddling

It’s time for a yearly brain dump, hopefully keeping my heart in the right place (2 Corinthians 4:20) as I do so!

The last Treatment Update was quite bleak and posted when bedridden most days of the week.  I am grateful to report that it is no longer true!  As I described briefly in the About Julie page accessed in the side bar of this website, in January of 2016 I did proceed with the treatment of neuro-Lyme disease with 3x/weekly IV infusions of Rocephin (aka ceftriaxone), initially administered daily for 2 weeks.  Insurance stopped paying for the treatment after the first 28 days so I quickly transitioned to home infusions via a home health agency.  My time has been consumed managing the medications, supplies, scheduling, set-up/laundry tasks, and more required in having these and other treatments right here in our living room.  I also started full spectrum infrared sauna treatments 1-2 times per week.  The ongoing expense is tremendous and frankly has depleted most of our available resources.

But has it helped?  Yes:  I am doing better than I noted on November 11, 2015.  Except for a recent increase in symptoms (suggesting treatment resistance and a need for a change in medications), I am no longer having convulsive episodes 2 to 5 hours per day with one day exceeding 12 hours about every 2 weeks.  I am no longer bedridden most days of the week.  Most weeks I can get out for essential errands such as grocery shopping and gratefully I was able to paddle our outrigger canoe or more stable kayak 5 times this past year.  I praise the Lord for this progress!  My reactivity to noxious stimuli and mold has diminished about 30% allowing me to participate in a social function about one time per month without a marked increase in symptoms.  I attribute a good part of this progress to my work with brilliant naturopathic physician and genetic coach, Dr. John Catanzaro, of Health Coach 7.  There is more work to do however.  Progress remains slow.

After much struggle, prayer, and perhaps a leading of the Holy Spirit, I consulted with my Lyme Literate Medical Doctor (LLMD) earlier this week regarding a change in my treatment plan.  He has decided to change my medication to a combination of IV Rocephin/Zithromycin regime for Bartonella:  a co-infection that often accompanies borrelia burgdorferi (which is the primary bacteria of Lyme disease).  Bartonella is often associated with seizures, peripheral neuropathy and some lesser symptoms that are a part of my clinical picture.  Oral antibiotics of minocycline and Plaquenil may follow; it is common to use multiple antibiotics currently for Lyme disease when chronic with neurological complications.  There are ongoing supplements for treating biofilms (ie. the mucous membranes in which the organisms hide), detoxification, and nutritional goals as well.  The new treatment plan begins tomorrow . . .

I am required to have the first dose of the new medication administered in a medical facility before it can be administered by my infusion nurse in home health care.  So tomorrow I will re-visit the outpatient clinic of our local hospital where this phase of treatment began earlier.  I have come a long way since then!

Starting an IV or accessing my power port used to trigger up to 20 minutes of violent convulsive episodes every single time!  Sometimes I had to be accessed in more than one peripheral site due to the collapsing of my veins, hitting the valve of a blood vessel, or the pain/severity of the procedure.  The started isolating me in a private room due to the concurrent involuntary screaming episodes!  That is no longer the case.  Also, the entire infusion appointment used to require me to be at the hospital up to SIX HOURS before I was stable enough to walk out the door.  The nurses in the outpatient clinic left at 5:00 p.m. so they would transition my care to the staff who worked until 8:00 p.m. so I could sit alone in the quiet, deserted treatment rooms until the post-treatment episodes resolved.  Again, this is no longer as severe.  I do miss watching the remodeling shows on HGTV during the treatments, however.  We don’t have cable TV at home!

The journey has been long and difficult:  October 11th marked 5 years since I got sick with viral hepatitis after kayaking in the Cedarville Reservoir near our home and November 20th marks 5 years since the first seizure attack episode.  I have cried many grievous tears for so many different experiences of loss and incredible suffering.  There have been 3 minor surgeries with only 1-2 days of pain medication each time; the number of convulsive episodes is in the thousands.  I have now had counseling to cope with the trauma of this extended illness and to prepare me for the day when I will recover, return to life.  By the grace of God I have been able to complete the continuing education credits needed to keep my occupational therapy license active although I have not been able to work since February of 2012.  My husband and I have faced unbelievable stress, the depths of heartache together.  And even so, we are hopeful that someday I will recover fully.

Our Lord, Jesus Christ, has stated that those who believe in Him will have strife in this world but to not lose heart:  He has overcome the world (John 16:33).  He has been the strength that both Steve and I have needed to endure and overcome the worst hours of torment (Psalm 73:26).  He sent His son so that we would not die in our sins of the consequences of living in a sinful, fallen world but have everlasting life (John 3:36).

This means that my life will go on beyond these struggles, this suffering that I have endured and one day be with Him without the tears of this whole ordeal (Revelation 21:4).  That special kind of joy and peace shining in my heart even now will blossom into all joy and dancing as I trust in my Lord and Savior through it all (Deuteronomy 31:8).  I have cried out to Him on my bed of sickness (Psalm 41:3) and He has led me by His Holy Spirit time and time again (Mark 13:11) as He did the disciples before there time of unimaginable persecution.  My suffering, our suffering pales in comparison to that which persecuted Christians endure every day for their faith.

Thank you Lord for helping me and Steve to endure this illness.  We are encouraged for my progress and sense that it has not been wasted:  I raise this testimony up to you that Your glory may be revealed in our lives.  (Romans 8:18)  To You alone be the glory.  Please bless the Gentle Reader reading this today.  Thank you for loving us and bringing us together (1 Corinthians 5:4).  In the name of Jesus Christ I pray.  Amen.

Romans, 15.13, hope, encouragement, joy, peace, scripture, blog, overcomer, endurance, power of the Holy Spirit, Holy Spirit

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