I Survived

I survived.  A little traumatized, perhaps, nonetheless I survived.

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Medical testing needs to advance to the level of the scanner once flashed on classic episodes of Star Trek.  You know:  the kind where the Doc runs a device much like the handheld bar code readers of today up and down all the areas of your body that are amiss.  Sure would save a bit o’ grief, a bit o’ money too.

Poop and pee tests are gross.  So was the Lasix Renal Scan for me this past week when I decided NOT to be catheterized.  Eeeeek!  Jared, the nuclear radiology technician, was as nice as he could be and even said that I “looked fit!”  How sweet!  But inside this frail frame of mine are weak bones and an aching backside/kidney area for largely unknown reasons.  I am sad.  Just when I thought that a myriad of toxicities and stealth infections were my worst nightmare, it turns out that there are other complexities to explain why I feel so unwell.  But hey, the Lord still appears to be orchestrating a mysterious journey through it all.  And I lived through this last event to tell my story . . . again!

I’ll bet that Joseph as described in the book of Genesis knew everything there was to know about “survival.”  Sold into slavery then rising to be the head of the Pharaoh’s (President’s) household was cast into a dungeon for years when falsely accused.  He still acted righteously over and over again only to be forgotten until one day vindicated; he praised the Lord for the marvelous goodness that would come after his years of suffering.  Joseph is a model for  me of what it means to be a faithful steward of the experiences God allowed in his life.  He did not lose heart, he kept going despite severe trials then gave glory to the Lord when good things happened.  I want to be like Joseph.  His words to his brothers who had started his torment were:

Genesis 50:20New International Version (NIV)

20 You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.

And the Lord’s promise to His children are that one day:

Revelation 21:4 New International Version (NIV)

‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I hope that someday my lessons from life will be centered more on the wonders of God’s creation in my garden and such than the saga of enduring a serious illness.  Until that day I will not lose heart.  Please don’t you lose heart either, Gentle Reader.  God is still on the throne and will make “beauty from (our) ashes” one day.  (They will be called oaks of righteousness, a planting of the Lord for the display of his splendor!  Isaiah 61:3)  Until then let’s look to the face of Jesus Christ who has promised to make all things new one day, one day soon.  Truly this is our source of “hope beyond,” no?  JJ

What did you learn today?

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful.  Titus 3:14

I learned today that it pays to take good notes.  When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago.  Perhaps back then I should have gone with that other company instead?  Oh well.  I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and  having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick.  Looks like NINE of the TWELVE hours required will be FREE!  Yeah God!  I will be able to keep my occupational therapy license one more year!

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I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve.  First some background:  we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri.  His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving.  Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain.   I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!).  As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!”  Well, yes and well, no.  His parents are aging.  Visiting them at their home in California is complicated due to my extreme sensitivities.  Perhaps Steve will be making a visit early next year and when my health is more stable.  In the meantime he just continues to be a wonderful loving husband.  I am so grateful for his love and devotion.  Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem.  Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more.  The numerous moments that were quite opposite just made “seizing the day,” more special.  We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two.  Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done.  He is there when I am awake in the middle of the night.  He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh.  My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond.  It’s not quite an online journal but a way of looking from the inside out.  I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ.  As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all.  He loves His own more than words can say:  the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned?  Please let me know, k?  JJ

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Gratitude for the little big things

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve.  Happy anniversary!

And Godspeed Gentle Readerfb_img_1480031316027. :J

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

Treatment Update

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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.

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