convulsions – Page 8 – Jesus is for the Wounded

So much to consider

Published on January 26, 2017February 12, 2017 by Jesus is for the WoundedLeave a comment

So we come to a crossroads, my beloved and I

From where will we go from here to continue my care?

No cure hath cometh from a year of killer drugs within

Five years of tortuous suffering with costs beyond compare.

We don’t know why the trauma continues to this day

Whether it will continue or end? There are no promises

That when we show up in this life that all will be grand

But shunting the yearn for heaven my dear, the treats beyond.

Today I am tired but stable, weak but reflective

Grateful for so much while I ponder theses woes . . .

My beloved is sweeter than honey

His warmth a comfort to my hol-ey bones

He loves me deeply still; I see it every day

And life’s sweetest: love from this man I have come to know.

Alas I search the scripture and find that even Job

Needed to trust in the Lord not knowing why

His suffering exceeded the faith of his friends, his kin

When all was really a battle within the spiritual realm

Having very little to do with his past, to do with him.

So in the seasoning of the late missionary, Helen Roseveare

“Can you thank me for trusting you with this experience

Even if I never tell you why?” God asked of her in the midst of terror.

“He doesn’t have to tell us why,” she would learn

“But He often does in His gracious, loving mercy,” for sure.

So I will seek the perspective of the privilege

It is to be used in this life by the Lord almighty

Relinquish my frame to His plan and outrageous love

Then wait and see: He is worthy. My response: humility.

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Not just another day

Published on December 12, 2016December 12, 2016 by Jesus is for the WoundedLeave a comment

In this moment I feel quite normal. I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off. You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here? Here’s what I mean:

Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
Expenses beyond belief take away tremendous resources intended for the future: a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day. I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes. This past weekend I missed the lovely snow softly falling outside our bedroom window: our first major snowfall in the Midwest. I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow! If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks. Those episodes with respective recovery periods totaled about 15 hours today alone. Lord have mercy!

This is no where near normal. Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy. I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic. One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday. Somehow I did get some Christmas cards ready-to-go however! Wow. That is simply amazing.

Please forgive me that my tone is angry tonight. I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me. There are new problems with which to contend. Tonight I am in survival mode. It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning: an expensive treatment of merit I seriously question. Chronic Lyme disease? Heavy metal toxicity? Which one is it already?! Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago? Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . . At least my back is feeling some better though. Hooray!

So here’s to Christmas cards getting together and less back pain. I have a roof over my head and food in the frig to munch on shortly. My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so. Well there ya go. Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader. Thank you. Here’s a cartoon for you. You rock! JJ

bedbugs

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Treatment Update

Published on November 10, 2016November 10, 2016 by Jesus is for the WoundedLeave a comment

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.

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It’s Legal: CBD Oil is Here to Stay

Published on October 2, 2016October 3, 2016 by Jesus is for the Wounded1 Comment

A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals. My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness. The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.

I tried it. I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online. Then things went terribly wrong. I started to have frightful nightmares. They increased in vividness and horror then were joined by waking night terrors. These are the kind that don’t stop when you wake up! I was scared to continue. I backed down my dose, took a break, re-started and nothing seemed to bring relief. The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects. Eventually I abandoned CBD oil altogether.

While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself. Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States. CBD oil from industrial hemp only contains .3% THC. This allows sale of pure CBD oil in all 50 States. For me the .3% was still too much. I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC. Heck, I smoked pot occasionally as a young adult without any ill effects. There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.

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Flash forward 3 years. I became acquainted with a company who manufactured pharmaceutical grade liposomal products. When they introduced a CBD oil product made from industrial hemp, I decided to try it again. I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease. Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease. The episodes were less per day but not gone. I ordered a bottle.

I did not get past a single dose of the new product before suffering another waking night terror incident. Dang! The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good. I returned the bottle to the healthcare professional from whom I had ordered it. And then I waited. There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came. No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions! Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day). A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO). Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .

I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner. I leveraged everything and asked to try a beta version of their new product. Within 2 weeks the bottle arrived in the mail. It took around 15 drops to get a significant response: their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks. Yeah God! This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO. Some relief came at last! I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days. Perhaps healing my gut will help everything as well. In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether. I may need to switch brands to get this accomplished. We’ll see.

CBD oil is legal for purchase in all 50 States of the USA. If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp. Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online. Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition. Here is one brand that is available only from healthcare practitioners nation-wide: Colorado Hemp Oil. And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products: Project CBD. I am not sure of its current status.

This is my story and I’m sticking to it! I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner. Feel free to share pertinent information below. Please don’t try to sell me anything!

Take care, JJ

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