The Jane magnolia remains silent at the birth of April’s Spring
Her violet blooms resting beneath garments of fuzzy gray pods
Waiting, tempted to peek into the sunshine, then waiting some more
For emerging too soon would be to her peril and loss of beauty, my dear.
Oh if I but could rest not by angst but by design like my friend
Knowing the Divine timing and trusting therein better than I have
That loveliness would come in the fullness of my time as well
Instead of deadness, jagged edges of pain, the tazoring of my mind.
Will there come a day when I shall join you in the sunshine of morn’?
When I unfold to freedom of spirit, of movement as in song so sweet?
Where there is little thought to my comings and goings: I will just go
Just live and give and do and think, knowing all is right with the world?
I do not think it is right that I should suffer so day in then day out
With hope only of heaven when my hopes are dashed 10,000 times and more
The seeking compels me for hours: pouring over records, research, and facts
Only to be smashed against the wall of my limits, my fate, the unanswered prayer.
What will my own senescence bring?
There is no patience left in me to endure.
No resolve carries me through.
Tears from deep caverns gush forth . . .
But breathe I shall for time shall march forth into the Spring of each new day
Life will go on as our Lord promises His love will go with us along the way
Perhaps one day I shall “bloom where I am planted” as the ol’ poster exhorts
Ever loud, ever quiet, ever true for having stepped out in faith ever simply,
and even ever small.
All it took was one hard drug (the prescription variety) and suddenly I can function a few more hours each day. PRAISE THE LORD!
First up: finish cleaning the house to keep the risk for exposures down. Dust/mold/smells can trigger significant sickness if I don’t so gratefully I got it done today.
Second: keep up with scheduled treatments and keep trying to add in items that are recommended for me.
Third: organize medications, oils, supplements, and medical supplies that have spilled over to various locations in our home. Prepare items to donate that are no longer needed.
Fourth: begin the next filing projects needed to gather our tax records.
Fifth: prepare tax records for filing with our accountant.
For the first time in a very long time, I am making progress a “To Do” list. Lord willing tomorrow I will dig into number four. Dang this feels good!
God created our world with a masterful order, hierarchy, time table, and purpose all to bring Him glory. He knows and sees and orchestrates and cares for every minute detail of life as we know it. We get to see His handiwork: look closely and you will find it as nature wakes up again this Spring. We get to participate in the majesty of life as His children whom He dearly loves. While we will never duplicate the perfect order of the stuff and events of our lives, perfection is not our calling (it’s His!). So the stuff stacked neatly on our microwave instead of the kitchen counter is just alright with me. Perhaps we would agree that our lives do simply work better when things are cleaner and neater?
Lift up your eyes on high And see who has created these stars, The One who leads forth their host by number, He calls them all by name; Because of the greatness of His might and the strength of His power, Not one of them is missing. Isaiah 40:26
Perhaps then I will submit my wittle accomplishments today to the Lord as alms of worship and thanksgiving for the gains He has granted in my health. I am making progress in a perfect path created by my Lord and Savior, Jesus Christ. And that is all it took to make some sense of my world on a Sunday.
Let’s add a little encouragement, a little promise also from Isaiah 40 for those who are weary this night:
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isn’t that just wonderful Gentle Reader? JJ
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.
Another day slipped into history as I pondered the gratitude I felt for a recent task accomplished. It’s no matter that the wrapping of Christmas presents got done from about 2 to 6 in the morning on Saturday. That’s just how I roll these days . . .
Social media is one of the ways that I employ to counter the tremendous isolation I experience while overcoming a serious illness. I used to be shy about it. Many folks write about their need for a sabbatical occasionally when Facebook and the like become too big of a time eraser. My life is structured differently I guess . . .
My brother, Michael, often talked about the support he felt from fellow poker players online. Really? How can you experience anything valuable from an anonymous side chat in a gambling venue of penny poker through the internet? Flash forward ten years. Now I get it. Mike was home all of the time caring for our mother who was struggling with lung cancer, chemotherapy, and alcoholism. The things that he endured were very difficult. He would say that he never knew what he would find when he returned home from running out to the store or anywhere at all, making it difficult to get things done. Those little touch points with his fellow poker players gave him the assurance he needed to do what he had to do the rest of the day . . .
Should life return to “normal” one day for me then my time spent here with you will naturally diminish. I’ll be sleeping in the wee hours of the morning instead of wide awake in the recovery phase of a hellish nightmare earlier that evening. I have already grieved about it, the loss I mean. So much time has passed with so little getting done in my own life. Perhaps the tasks that have been completed are not measured on a calendar or my “To Do List?” For those in Christ Jesus, we know that to be true.
Another example is how I finished reviewing a copy of a canoe and kayak paddling magazine last night for which my husband is the Editor. I guess I can now add “Assistant Editor” to my resume for my contributions to the first four issues. Cool beans. I could list a bunch of crafty Christmas things that I would rather be doing yet that was not my calling for those hours. Many will be blessed by this sacrifice including me.
Ever feel this way when sidetracked from your dreams, Gentle Reader? In ways big and small we may struggle to discipline ourselves to do the tasks we must do when our hearts are in another room or time zone. Know what I mean?
The bottom line for me on this subject tonight is that the sooner I rest in the promises of my Lord and Savior, Jesus Christ, the sooner I will realize that I am perfectly where I need to be. He will provide everything I need from the breath that is not coming easily to the assembly of a Christmas gift still in boxes strewn here and there. I know from another tumultuous time in my life that the Lord does answer our prayers in due time. The waiting, the setbacks, the anticipation make the rewards sweeter. How can I expect to make it to the finish line with style and grace if I give up on the last leg of the race? I will not!
So don’t you give up on me either, k? And please hang tough if you are going through challenging times as well. If you need to cry out for help then please do so NOW. Our God promises in His Word that:
3 The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.
Psalm 41:3 New King James Version (NKJV)
He will see us through to our last breath if we but call upon His name. My Heavenly Father has done so for me a thousand times. He will do so for you too. Tonight I am praying for us both. JJ