TREATEMENT UPDATE: The new doctor I saw on Monday ordered more tests. My treatment plan is thus delayed. My response to high CBD hemp oil waxes and wanes. At least it prevents seizure attacks most of the time when I am in a completely controlled environment and can arrest them some of the time when they break through. But if someone enters my bubble at home with but a speck of perfume or exposure to mold in a water damaged building then there are fireworks! So I’ve got three more weeks of guessing what the heck to do . . . Holding on and talking to the Lord a lot.
1 You have searched me, Lord, and you know me. 2 You know when I sit and when I rise; you perceive my thoughts from afar. 3 You discern my going out and my lying down; you are familiar with all my ways. 4 Before a word is on my tongue you, Lord, know it completely. 5 You hem me in behind and before, and you lay your hand upon me. 6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence? 8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there. 9 If I rise on the wings of the dawn, if I settle on the far side of the sea, 10 even there your hand will guide me, your right hand will hold me fast. 11 If I say, “Surely the darkness will hide me and the light become night around me,” 12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 17 How precious to me are your thoughts,[a] God! How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand—when I awake, I am still with you.
19 If only you, God, would slay the wicked! Away from me, you who are bloodthirsty! 20 They speak of you with evil intent; your adversaries misuse your name. 21 Do I not hate those who hate you, Lord, and abhor those who are in rebellion against you? 22 I have nothing but hatred for them; I count them my enemies. 23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.
Today my words came back to me. My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery. Ah yes. The old, “recovery is a jagged line” speech. I have let those words fly many times when working with my patients as an occupational therapist. There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital. I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands. She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery. I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!
One of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy. The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities. When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function. I was always amazed at how “resourceful” some patients could be! I think the farmers were the best. I’ll never forget the industrious wife of a patient suffering after several failed back surgeries. The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home. What was she moving? Well her husband of course! He was eligible for a wheelchair rental but evidently the subject never came up. I don’t think they even wanted one when it became available. The downside: the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others. Recovery is sometimes a flat line too: no true recovery at all.
As for me, the recovery is moving forward. I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes. Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain. And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else. This is the second night in a row with relief! Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures. Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures. Praise the Lord, the pattern is changing! At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief. Nothing has ever done this before!
It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!” I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month. It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease. All that may be clearer sometime down the road. At this time my husband and I are rejoicing for the relief from our hellish nights. He just might start getting a full night of sleep before too long! That is if we don’t stay up for other reasons . . . ;J
If you are curious about high CBD hemp oil then I offer this informational website: www.mycbdresearch.com and join the discussion on Facebook at: www.facebook.com/CBDhempandseizures There’s hope here for many with seizures and other neurological, intractable health conditions. For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line: a relationship with the Lord, Jesus Christ. To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible. I would have never made it this far without my Jesus. I am humbled and grateful for many aspects of these past 2 1/2 years: I’m working on accepting the wretched parts.
Meeting you, Gentle Reader, along the way is a sweet gift. Thank you for being a part of my recovery too. JJ
Therefore, send not to ask for whom the bell tolls, it tolls for thee. (John Donne, 1624. Meditation 17. Devotions upon urgent occasions.)
Such is the reflection of these famous words scripted by John Donne and later repeated by Ernest Hemmingway in one of his most famous works of literature. The intent of each author is to emphasize the interdependence of humanity; no man can truly live or function as an island. Whether we live or die, honor God or blaspheme His name, our actions at some point will touch the lives of others around us given time and opportunity.
Case in point: I’ll never forget that day in Dominicks, a grocery store in the west suburbs of Chicago, Illinois. It was my day off from work and I was picking up a few groceries before heading home. I’m not sure why I was dressed up while running a few errands . . . I do recall wearing my nice and warm, long wool coat to fend off the early Spring chill still lingering outside. Suddenly at the end of the aisle was my good friend’s dad! He said a cherry “hello” and explained that he was in town visiting for some family occasion. Mr. Y. always had a gracious way about him: asking permission to tell you another story or joke before parting ways. He laughed about me humoring an older person by talking with him or something like that then shared a quick note to give his regards to my husband. I looked him straight in the eye. He had no idea.
Immediately Mr. Y knew something was wrong. I walked closer to him, recognizing that I was about to open my heart in the middle of a grocery store aisle! My former spouse was discovered in an affair less than 3 weeks before. Intervention from our church had begun and my life was in turmoil as my heart was still reeling in crisis mode. It didn’t help that my grandmother had also died and I was in the middle of facilitating the refinancing of our home (not knowing if I would be living there in the future or not). All of that stuff was about me and my drama. What I did not expect was the look on Mr. Y’s face when I told him my story. Do you know that look in the movies when someone has just been punched in the stomach so hard the person could not breathe? The smile on his face turned to anguish. He could not speak.
Mr. Y’s reaction showed me the reality of love between the body of believers or those who call Jesus Christ Lord and Savior. We bear one another’s burdens (Galatians 6:2). We know what it means from a human level, a heart level, and a violation of God’s plan for us when a brother in Christ falls. Craig probably never realized that his actions affected so many people and perhaps did not care. This was astounding to me. He was a leader in our Bible church and a gifted Sunday school teacher. Craig excelled in his work in the mental health field, loved working out, and was quite good at photography. He loved a good philosophical discussion and we had many. It is a matter of history that my coming to faith in Christ was facilitated by these very sessions: Craig helped answer many of my questions and led us to both a seeker-friendly church then a smaller, more intimate body of believers. I got saved because I dated Craig. In that Bible church is where I had met Mr. Y and became good friends with his daughter, Deb. Friends like this are closer than my own family at times.
So where am I going with all of this? When I am home alone every day, not even leaving the house for days on end, of course it is easy to forget the love of dear friends and family in my life. Sure the pup looks up at me with soft brown eyes when I walk into the kitchen but it’s just not the same! My intended beloved, Steve, is away from home a lot and often into the early evening. Since I don’t feel well most of the time I just stay home if I don’t have an appointment or urgent need for food! This week was particularly dry in this regard. As it turns out, most of the week was devoted to adjusting to a new treatment we’re hoping will eliminate the daily seizure-like episodes. I slept or moped about most of the week anyways; I didn’t notice that I was by myself as the quiet was itself healing medicine. When I come out of this fog of late and I’m still isolated at home, I must remember that I am totally never alone.
Do you have this confidence Gentle Reader? We are connected by this blog. For that I am humbled and honored, that you have taken the time to step closer to me. We probably resonate some on the issues of life or you would not have chosen to stop by when so many other bloggers have their own yada yada yada to share. Our connection will be even more meaningful to me if I know that it goes beyond my stories and our simple humanity to the very essence of what gives meaning to life: a shared faith in God through His son, Jesus Christ. If you do not yet have the peace, love, and joy that comes from knowing the Lord intimately then I invite you to step before the throne of grace today. Ask Him to reveal Himself to you and seek Him with a sincere heart through the Bible, His words. When we repent and invite Jesus into our hearts we receive the indwelling of the Holy Spirit; we are never alone again. Please tell me what you find, k?
For those of you who share the love of Christ already: I look forward to meeting with you one day! Whether in this life or the next, we’re going to have a great time celebrating the glorious riches of a life surrendered to our King. Standing in the presence of the Lord will wash away our tears and troubles bringing joy beyond what we could ever see today. May the glimpses of His holiness and glory in the goodness that surrounds each of us sustain you, encourage you, and lift you up until we arrive in our eternal home. Therein the bell will toll with tales of triumph for all of us. Such a sweet sweet sound that will be!
In his first solo CD, Huntley Brown clinked the keys of a grand piano with such magnificent flow that it sounded like the rushing waters of a mighty river. Check it out yourself on You Tube at: https://www.youtube.com/watch?v=up1ygB0ZYes I first heard this amazing piece when he was first performing in churches across the United States about 20 years ago. This native born Jamaican had surely witnessed the glory of majestic waters crashing upon the sandy beaches of his homeland. Yes! I can picture it. How about you?
The imagery of a river is meaningful to me. When I was a child I fell into a river when helping groom a trail along the Clinton River in Michigan. It was part of a day camp experience and I was scared then upset because I had to stay in my muddy, wet clothes for the rest of the day! Oh the trials of childhood!
Trials indeed. When I would break down into tears as a young girl my brother, Mike, would taunt me mercilessly. He stood in front of me with the palms of his hands facing upwards and sneered, “cry me a river!!!” I burned with anger. He had no idea the pain underneath those tears that finally spilled down onto my face after holding so much hurt inside: hurt with no safe place to go. I had endured two of three sexual abusers by this age: the damage was done. No river could contain my tears, or at least that is how it felt, should the “dam ever break open.”
Flash forward 40 years. The abusers are now deceased and forgiven; my heavenly Father has filled the hurt with His amazing grace and love. I married my intended beloved and he introduced me to kayaking on the rivers of Fort Wayne, Indiana. We began on the water together in a Hobie Oasis (i.e. a pedal-driven kayak) until I progressed to a solo Think Fit Sea Kayak. By October of 2011, I was in the best physical shape of my life despite an underlying chronic pain condition and had upgraded to a beginner surf ski kayak: the Stellar SR. For almost three years my husband and I had enjoyed kayaking with a local recreational group on Tuesday nights all summer through the early Fall. The wonder of the rivers and waterways we explored together eventually changed my perception of them; after all I had grown up by the polluted Detroit River, downriver from the steel mills! Rivers? Yuck! Boating on the water back then for me meant exploring the Five Great Lakes and clear blue inland lakes of Michigan by speedboat not human-powered slo-mo vessels!
Me in my Stellar SR
Well who knew that Indiana was so beautiful? We witnessed young deer up close, sneaking to the edge of the water for a drink and Great Blue Herons feeding their young in the tops of trees. Paddling with a gaggle of 20 or more colorful kayaks with double-bladed paddles gently sliding through the water was a really cool sight to see. For the first time in my life I felt “cool!” The evening excursions were sweetened by the chocolate chip and peanut butter monster cookies from a fellow kayaker as the sun was setting over the boat launch at the end of the day. The sunset is simply glorious on the waters of a river winding through the woodland . . .
It sure is a curious thing that the most significant episode of illness in my life would begin after kayaking in a local reservoir and river. The complicated course of events that followed prevented me from all but limited excursions on the water for the next two and one-half years. I’ve now sold both kayaks mentioned here and we have replaced them with solo and tandem outrigger canoes. My balance skills have suffered of late so the Hawaiian-style outrigger provides stability with maximum performance. After all, Steve is a competitive kayak racer so we are grateful to have fast and great gear along with really cool looking boats! Lord willing, I look forward to getting on the water again sometime this year.
And so I was praying, crying out to the Lord recently when the most difficult parts of this illness had led to feelings of despair. Perhaps you read the previous blog entitled, “Psalm 71?” Yeah, I hit rock bottom a couple of nights ago. Within a day the Lord led me through His Holy Spirit to an understanding of where I am and where all of this might be going. This did not come with exacting answers of time or place initially. I came to understand that the process of searching a new treatment option was like that of waters moving from one place to the next. The Lord placed me in the middle of the stream of new research and methodically led me through the steps of discovery to a new treatment modality. I will write more about what it is another time. What I will say here is that I am in awe that there were no barriers along the way just an open current, if you will, of information even when I could not see where the research was leading me. When I finally landed at a decision, like putting-in or taking-out at a boat launch that both sends you on an adventure or returns you home, He showed me the symbolism of a river, glorious. The image of a river made sense to me. The residual pain from my brother’s comments so many years ago finally faded. The Lord gathered my cries for help like a gentle stream at the mouth of a river leading to His heart. I believe there will be a significant measure of healing this time.
Psalm 98:7-8
Let the sea resound, and everything in it,
the world, and all who live in it.
Let the rivers clap their hands,
let the mountains sing together for joy;
Song of Songs 8:7
Many waters cannot quench love; rivers cannot sweep it away. If one were to give all the wealth of one’s house for love, it would be utterly scorned.
Isaiah 43:2
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
Lamentations 2:18
The hearts of the people cry out to the Lord. You walls of Daughter Zion, let your tears flow like a river day and night; give yourself no relief, your eyes no rest.
Amos 5:24
But let justice roll on like a river, righteousness like a never-failing stream!
John 7:38
Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.
Revelation 22
Then the angel showed me the river of the water of life, as clear as crystal, flowing from the throne of God and of the Lamb 2 down the middle of the great street of the city. On each side of the river stood the tree of life, bearing twelve crops of fruit, yielding its fruit every month. And the leaves of the tree are for the healing of the nations. 3 No longer will there be any curse. The throne of God and of the Lamb will be in the city, and his servants will serve him. 4 They will see his face, and his name will be on their foreheads. 5 There will be no more night. They will not need the light of a lamp or the light of the sun, for the Lord God will give them light. And they will reign for ever and ever.
Tonight I rest along the banks of my Heavenly Father’s river of life.
Thank you, Lord, for carrying me downstream as far and as long as was needed to bring me to this new place of hope. Oh my Lord, forgive me for my desperation, for not trusting You. Help me to trust you, to continue to abide in your streams of righteousness, wisdom and grace. Renew my faith, strengthen my sea legs if You will, until it’s time for me to come home. I love you. Julie
Jesus is for the Wounded 
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