Revelation 21:4 – Jesus is for the Wounded

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)

²⁰You 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)

⁴‘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

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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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