This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil. When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online. I worked with the manufacturer and a couple of Facebook groups on dosing. My initial results were very encouraging!
Within 2 weeks I required increased drops of HCBDHO to receive the same benefit. This fit the profile of many other users of the product. Some required nearly 1/2 bottle to stop their seizures even if a child was taking it. There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site. In general as time wore on, the benefits diminished no matter what the dosing. Also in time I started having bad dreams then bizarre nightmares. The nightmares frightened me. I could not figure out why they were happening! Then I read that some folks are sensitive to even trace amounts of THC: the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid. Well I wasn’t having a good time at all!
Eventually I stopped taking HCBDHO altogether. Now that I am sensitized to it, I do not intend to take it again. The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months. The benefits did not outweigh the risks. I am majorly bummed that it did not work for me. Nothing has worked for me. No combination of things have worked for me. I cannot tolerate treatment that works for others without ramping up to violent convulsions. Detoxing is impossible without noxious, severe side effects. Talk about being boxed into a dark corner without a flashlight. Will hope ever shine through again?
Sure it will. Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice. The latter helped Kurt and Lee Ann Billings, the authors of Mold: The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well. Yup, all of those three caused me noxious, severe side effects as well. Sish. I am very glad that there are new things to try despite the dead ends of my medical team at the moment. Thank you Lord that you are always my hope with or without Tahitian Noni: my forever guiding light Who uses the hardships for Your glory . . .
So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature: You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO. The articles include the legality of industrial hemp products and the difference between them and medical marijuana. Here’s a link to get you started: Seizure Free Zone on Facebook
5 Now a man named Ananias, together with his wife Sapphira, also sold a piece of property.2 With his wife’s full knowledge he kept back part of the money for himself, but brought the rest and put it at the apostles’ feet.
3 Then Peter said, “Ananias, how is it that Satan has so filled your heart that you have lied to the Holy Spirit and have kept for yourself some of the money you received for the land?4 Didn’t it belong to you before it was sold? And after it was sold, wasn’t the money at your disposal? What made you think of doing such a thing? You have not lied just to human beings but to God.”
5 When Ananias heard this, he fell down and died. And great fear seized all who heard what had happened.6 Then some young men came forward, wrapped up his body, and carried him out and buried him.
7 About three hours later his wife came in, not knowing what had happened.8 Peter asked her, “Tell me, is this the price you and Ananias got for the land?”
“Yes,” she said, “that is the price.”
9 Peter said to her, “How could you conspire to test the Spirit of the Lord? Listen! The feet of the men who buried your husband are at the door, and they will carry you out also.”
10 At that moment she fell down at his feet and died. Then the young men came in and, finding her dead, carried her out and buried her beside her husband.11 Great fear seized the whole church and all who heard about these events.
Now that’s a serious consequence for lying! A death sentence! In the early Christian church, believers were giving freely of their wares and wealth for the cause of spreading the Gospel of Jesus Christ. I love our pastor’s commentary on this story (Paul Mowery). He explains that the point of the story is not that everyone had to sell everything they had to live as followers of Jesus Christ. The point is that Ananias and Sapphira were hypocritical in their outward gesture of donating the money from the sale of their land then holding back a portion for themselves. They were “lying by omission,” or making an appearance of generosity that was not completely true. They paid for their masquerade with their lives as the Lord was purging sin from the early church. To have a pure message of honesty and transparency was critical in the beginning of a movement that would change the world forever.
To die for one’s actions or beliefs is the highest exchange rate for one’s actions that can possibly be paid. What could be greater in this life? That is why the Lord gave His own life at the cross in exchange and atonement for our sins. He gave the greatest gift He could possibly sacrifice so that we may be forgiven of our transgressions and live in fellowship with Him forever in heaven. Gratefully we often get a second chance to make things right, seek forgiveness, and so on when we fail in our Christian walk. We don’t usually die for our sins, per se. Should I face death for my actions someday I do hope that it will be for my faith in Jesus Christ and not as a consequence of my mistakes. Or as a hypocrite. Gentle Reader: have you thought about such things?
Hmmmm. The ultimate exchange rate is death. Today I can relate to a lesser one too. Let me explain.
Yesterday I was given an opportunity to participate in an outdoor show of Master Gardener artisans and their handiwork. Gratefully I was among five vendors on display in the Woodland Garden of the Allen County Extension Office (Indiana) as part of our annual Garden Walk. I enjoyed putting together a new display of the best creations from Trinity Jewelry by Design, visiting with my fellow Master Gardeners, and meeting many avid gardeners/shoppers who came by. A few went home with some of my jewelry to the delight of my heart! The weather was mild and the cost was only a small donation and a few bug bites! The morning was lovely indeed.
T J by D in the Woodland Garden, Allen County Extension Office, Garden Walk July 19, 2014
However I knew I was over my activity limit as we were cleaning up afterwards: I could hardly hold my face together to smile. By the time I got into my truck to drive home I wasn’t sure just how I would make it home. If I relaxed even a tiny bit it felt like my body would erupt into seizure attacks. If I rallied enough energy to drive home with the utmost intensity of focus I would probably make it the 25 minutes o.k. but face more intense seizure attacks later on. I opted for plan B.
The next 21 hours after I got home were hell on earth. Sure I was unable to unpack my truck and take care of the dog before crashing onto our bed. Then I came unglued with a long episode of seizure attacks yet gratefully not the worst of late. The exhaustion from 3 hours of sleep the night before somehow reduced their intensity. Well, o.k. Thank you Jesus for the 4 more hours of uninterrupted sleep that followed! Unfortunately, things did not go so well as I was waking up. When a feeling of “tazoring” greets the disorientation of a deep sleep, all is not well with the world. I lain in bed with tic attacks on and off until midnight. When I got up to finish a light meal thereafter I’d wished I was back in bed! Convulsions are dangerous sitting at the kitchen table and it certainly worried the pup quite a bit too. Oh yeah, Steve was standing by as my daily night in shining armor, just in case he needed to carry me back to bed. Nope. Made it on my own this time.
The middle of the evening was quite interesting as well. Steve and I now agree that his paddling on the murky waters of the St. Mary River in Fort Wayne this morning provided an insidious, noxious exposure for me. He had taken numerous precautions after returning home from his victorious kayak race. As it turns out, one shower and change of clothing was not enough. This dear man took a second shower with a second clean towel and change of clothing for me despite exhaustion from racing and mowing the lawn while I was sleeping! Yes, Steve is a saint! Figuring all of this out was very intense for us with both a heated exchange of words and extremely violent convulsions. The three episodes of the latter included screaming in torment at the top of my lungs! I could not help it. My brain was on fire and the vocalizations just came out. Those of you who do not believe that hell is a real place have never experienced a glimpse of it here on earth. The Bible talks about weeping, gnashing of teeth, eternal fire, and eternal torment. I say get right with Jesus NOW! You don’t want this forever if you don’t!
I woke up about 6 times with the tazoring thing. The last episode was shortly after I awakened Sunday morning around 11:00 a.m. Steve had already gone off to church so I lain there alone. Sometimes I just can’t sort out what is more terrifying: the symptoms themselves or experiencing them when home alone? Both are wretched. By the grace of God I managed not to panic as I have been through this torture hundreds of times before. Yes, that’s hundreds with thousands of individual incidences! The number is just enough to know that based upon my experiences, they will not kill me and at some point I will be able to function at some level. That level came shortly thereafter as I made my way to the bathroom then finally to the kitchen to satisfy my ravenous appetite. At least these episodes burn a few calories! Sish. Very weakly , today began.
So four hours of near normalcy (just one tic attack during the Garden Walk) was an exchange for 21 hours of hell plus some sleep. Not a very good trade-off I’m sure we would agree! And this is simply how life goes for me. I set in motion a will to participate in the event on Saturday knowing that for it to be possible would be a miracle. For at least 5 days prior to yesterday’s event, I had 1-2 hour seizure/tazor episodes from 8-10 in the morning in addition to nightly episodes. Falling asleep Friday night was typical: exceedingly awful as usual. Most every day this past week, morning activities had to be cancelled in response to either the episodes or the recovery time needed thereafter. Today I am exceedingly grateful for having the opportunity to participate in two activities that I love (i.e. gardening and jewelry-making) with sadness about missing Steve’s kayaking race.
Ah yes, the canoe and kayak race hosted by my husband. This is the last of the races to be held in our town for the United States Canoe Association Indiana points races and I had already missed the other one by a couple of hours. The reality is that I simply could not risk standing by the side of the murky St. Mary River with a biotoxin illness near other racers accessing the river. The noxious aerosols and risk of exposure were too great. I do try to avoid seizure attacks in public you know! I had checked out the riverbank earlier in the week on Tuesday before discussing it with Steve and making a final decision. Given my response to Steve after he came home, I knew that I had made the right, albeit difficult choice. Life is like that sometimes.
Further, while my own experiences often shared on this blog are particularly wretched, they are NOTHING in comparison to the sacrifices denoted above or in the Biblical record. I have not lost my life in my own rites, my own rates of exchange of one activity for another. I chose to participate in the Garden Walk out of an attempt to cope with illness, not to separate my self from the fellowship of the Holy God. My actions resulted in consequences. The result of my actions were not based upon sin but upon living in a fallen world because of mankind’s sin. Disease and strife exist because of the sin of two people in the Garden of Eden at the beginning of time. They were redeemed by God as we are redeemed by believing in God through His son, Jesus Christ. He makes all things new, bringing ourselves in eternal fellowship with Him when we humble ourselves and confess our transgressions, believing in what He did for us at His throne of grace. We also know that when He comes again in glory for His own that He will wipe out disease and strife forever. Knowing all of this gives me confidence that in the things that matter the most and that I have made the best decisions for my circumstances, for my life. Most importantly I have chosen to follow Jesus, Lord and Savior of my life. Someday I will be free from all of this suffering and there no longer will be an “exchange rate” of sorts. All there will be is JOY. Yes, joy!
You know, Gentle Reader, I’m hoping that these things that I write about are somehow of benefit to you. Please don’t spend more than a moment empathizing about me when you can spend the rest of your days experiencing joy with me for all of eternity. Look beyond this blog to the One who introduced me to you. I am so grateful that we have come together this day. May the Lord bless you! As He does I hope that you will choose to come closer to the One who paid it all for both of us. I want to meet you someday and in the family of Christ it will happen no matter how far apart we are in this moment. Then we shall walk together in fellowship with our King in the most exquisite of gardens for a millennia of days . . .
And that my friend is my “Hope Beyond” for this blog. Love to you, Just Julie
I’ve taken on a few phrases from others and made them my own over the years, ones that put a bunch of thoughts into a phrase or short sentence. Not that these would bode well as my epitaph or anything like that mind you! They just seemed to stick with me. Here’s a biggie from an old supervisor named Jim. He was a social worker by training and the director of the inpatient geriatric psychiatric unit where I was contracted to work. When asked how things were going he would often reply:
“Same story, different day.”
Funny thing is that it was largely true. On the Generations Unit there generally was at least one person every day screaming non-stop, voiding in an inappropriate location, wandering into another patient’s room unannounced, refusing to eat, refusing to get out of bed, or making up a story to convince him and psychiatrist that he/she did not need to be there. Yes it was a crazy place. That’s what you get when the nursing homes send their residents whose behavior can no longer be managed in their facility. It is also where a depressed little old lady or your suicidal Uncle Pete would go for supportive therapies, meds., daily structured activities, and a round of ECT if needed (aka shock therapy!). The latter actually worked very well for older adults. The short term memory loss and massive headache was a major drag for awhile, however!
I worked there as an occupational therapist. My role was to evaluate the functional level of the patient and assist the team in forecasting discharge plans while providing therapeutic activities. The goal was always to achieve improved mental status, mood, and functioning for discharge to the least restrictive environment. That might translate to a person returning home instead of assisted living or remaining in a private room in a nursing home instead of a locked dementia unit. Sometimes the patient’s goals were reached and sometimes not. Educating the family on the patient’s needs post discharge was also my role: an important and sometimes delicate process. I loved all of it. I got to apply my skills in standardized assessments, grading activities for the best outcome in lower and higher level cognitive groups, patient and family education, and knowledge of community resources that may be of assistance post discharge. The two latter skills were collaborated with the unit social workers who also loved working with older adults. We had a great team back then . . .
I’ll never forget the two weeks that c-diff ran rampant through the unit. C-diff is short for Clostridium difficile: an infection of the colon causing horrific diarrhea and inflammation. It’s a bacterial infection I can now diagnose by smell. O.k. perhaps that’s too much information? When virtually all of the inpatients become sick it is only a matter of time before the staff contract the infection as well. There are just too many common areas in a locked unit that too many people end up touching with a contaminated hand after caring for a patient. The motto those days was, “please pass the yogurt” or something similar!
Ruth was the best during situations like that. She was older than me and had been a Certified Nursing Assistant for years. She could get the toughest old bird to take a shower when he was resisting for days then she would turn around and feed a tender soul in the late stages of Alzheimer’s disease bringing out the patient’s long-forgotten smile producing a long-lost twinkle in her eye. Ruth often told us stories of her pet pot-bellied pig. Seriously! The beast weighed a couple hundred pounds but was part of their family, inside the house, potty-trained and behaved like a favorite feline or pup. I could not imagine it! Ruth lived in a suburban neighborhood like the rest of us! Actually more recently while living in a smaller town with Amish homesteads not far away I can now start to imagine it a little better. It’s still not for me, however!
The life I once lived was in the suburbs of Chicago amongst 8 million other people. I was married and lived in a townhouse as it was the only affordable option even for two Master-degreed professionals or DINKS: double income no kids. We attended a mega church then a smaller Bible church, organized a yearly block party in the court of our neighborhood, and took walks together in regional parks called Forest Preserves. I enjoyed neighborhood walks and riding my hybrid bicycle (between that designed for road touring and trail riding). Holidays were spent with family in various cities as everyone was out of State for our Illinois locale. Sure there were ups and downs with health issues or financial stressors but largely each day of our lives was the “same story, different day.” When this got to be too much for my former spouse he found a way out and took it. Hmmmm. Alternately I found that you don’t really need a way out, per se. Sometimes the “difference” we are seeking finds us as part of the Lord’s plan for our lives and it comes from within us instead of in the form of persons, places, or things . . .
Flash forward a myriad of moves of my residence, a change in the car I was driving, changing my job four times, transitions to new hair and clothing styles, some weight loss, and eventually moving to Indiana to marry Steve — over 10 years later I rarely say that old phrase anymore. Oh even if nothing much has changed lately in my health or the circumstances of battling a serious illness, there are always new discoveries meeting me each day. Things simply cannot be boring when you marry a man with as much energy as Steve! He keeps me going just keeping up with all of his activities even when he is not home! First there’s his four adult children and their families, then there’s his hobbies and sports, and his participation in the worship of our Lord Jesus Christ; the latter always brings news related to our church fellowship in addition to an intriguing message from the pages of the Bible. That’s a lot to keep track of and I love it. My garden, online jewelry business, and this blog fill in much of the rest of the time not taken with health-related activities. How could I ask for more when my heart is full?
Sure my life has changed in the last decade or so and I’ll bet it’s the same for you too, Gentle Reader. Is that o.k. with us? As for me I would never have asked for the difficulties that have come in recent years that have added more “excitement” and stress than I could ever have imagined. The crazy thing is that I would also have never known how to ask for the blessings that have come from this particular path either. I would not want to be without the blessings just to have had an easier life. I believe that I am exactly within the will of my Heavenly Father, that He has His hand on my life and my heart warmed in the shelter of His mighty wings. He goes with me, goes before me this moment and the next; there are signs of His wonders sprinkled everywhere in my days. I am so glad that I am not bored with my life. Well yes of course there are times I’d like a little less “excitement!” Yet that’s when I need to rest my cares at His throne of grace, allow Him to carry me like the famous Footprints in the Sand poem so graphically portrays, or wait on the Lord in the quietness of a moment of prayer . . .
I’m going to keep my head up and do like my brother, Mike, always used to say: “keep moving forward.” The life I once lived is gone but not forgotten. Those memories bring gratitude for all that the Lord has placed in my life today: a story that is never really the same. In time my Lord will make all things beautiful. In the meantime though I think it is finally time for me to go to bed! There is a calmness in my spirit at last. The sun is coming up and the birds are singing their morning hello just outside my window. For me it will serve as a happy goodnight lullaby as I snuggle up to my intended beloved who brings me more joy than I could ever imagine. Real love and more is here now.
Ready to head home with the 24-foot outrigger and ama (float) on the roof!
So grateful to be out with my River Bear!
We came to a clearing in things and went for it!
These pictures were taken after a wonderful evening paddling our tandem outrigger canoe (OC-2) on Sylvan Lake here in Indiana. How wonderful to be out on the water for a second outing with Steve this year. I am so very grateful!
Sadly the evening ended worse than the earlier part of this day. Tic attacks had started in the car on the 45-minute ride home. Within an hour after getting home and unpacking the car I was feeling sickly. We ate some quick salads before I scampered off for bed, still in my paddling clothes. Low grade seizure attacks ramped up over the next hour, escalating into one of the worse episodes I have had in a long time. Screams of terror filled our home. The best that I could do was hold on and focus on continuing to breathe . . .
Eventually I was able to call Steve for help getting off the damp clothing and showering. In my stupor and neurological collapse (requiring complete assistance to transport myself to the bathroom) I figured out that I must have gotten exposed to the blue green algae we encountered in the narrower sections of the lake. I had taken numerous precautions to limit exposure to the water. However, some simply cannot be avoided when splashing about, paddling from an open cockpit of an OC-2. And perhaps the slimy green pond near the port-a-potties in the parking lot were releasing aerosols that were not to my liking as well? I didn’t touch any food or the mouth of my water bottle since we did not have hand sanitizer with us. I guess it wasn’t enough: I am too sensitive to any form of biotoxin to get anywhere near them in any form until things change.
Thankfully after about three hours I regained motor control of my body. I was better able to communicate and we processed what had occurred this evening. Steve agreed that we probably need to limit paddling together to waters treated for algae, such as the private lake of a friend’s home. This means not being able to join the local kayaking group outings on Tuesday night for the third year in a row! That’s a major bite in the shorts! To get strong enough to go out with them for two years was a major accomplishment for me and lasted until I got sick October 11, 2011. Just getting into a kayak (and now an outrigger canoe, solo and tandem) simply had never happened before I married Steve. We have so many great memories being a part of the group in addition to his kayaking competitions. (Goooooo Steeeeeeve!) Sigh. And I was really enjoying the switch from a kayak to an outrigger, sporting my carbon-fiber bent shaft paddle too. So awesome.
Last night I watched most of the video story again of Justin and Christa Vanderham. Christa suffered from chronic Lyme disease and mold exposure for years before finding proper treatment with antibiotics, supplements, and nutrition. A fellow sojourner in recovery and reader of this blog graciously reminded me recently that Christa’s illness looked a lot like the videos that I have posted here and on You Tube. Yes, both our symptoms of distress appear wretched: intractable pain for Christa and relentless seizure attacks for me. We both scream at times due to our agony. In chronic Lyme and biotoxin illness it’s not the exact matrix of symptoms that is so significant as it is making sure you have the right diagnoses and treatment protocols to get well. We don’t say that we have different illnesses because our symptoms are a little different. We do say that we both might benefit from similar aggressive treatment protocols if reasonable test data and clinical presentation indicate Lyme or biotoxin illness. Unfortunately for me, EVERY SINGLE TREATMENT INTERVENTION exacerbates daily seizure attack episodes that average 3-4 hours per day! I simply cannot survive the treatment protocols of which I am aware to date. The multiple chemical sensitivities (aka Chronic Inflammatory Response Syndrome) already leaves me largely homebound to try and prevent noxious symptoms. Lately they are on the rise again (up to 8 hours!) regardless of where I am or what I am doing. When I take a 5 1/2 hour window of time when the symptoms subside and test the waters, so to speak, I usually pay dreadfully for doing so. This gal just can’t get a real break I guess. I keep trying the wrong things. On the surface, you could say that I am out of options . . .
Regardless, this I know: my Jesus goes before me and knows the desires of my heart. He knows that my heart is breaking right now to realize that I can no longer be with my dear husband 2 to 3 days per week when he pursues his sport on the water. I learned to kayak to be with my River Bear and was delighted to discover that I enjoyed it too (at a slower pace of course!). My Lord knows how isolated I am when I am home alone because of this illness. He has provided the safety and security of a lovely dwelling with plenty of time with my Heavenly Husband. He was my best buddy before I met Steve; He saw me through life changes equally as traumatic all the way to the restoration process in due time. I’ll be hanging tough and trusting Him with this door closing on open water activities, no matter how I may feel about it. The fact is that my Lord and Savior loves me more than I can ever know. He wants what is best for me. I will wait with great expectation at His throne of grace for His plan for me, whether or not a new door or window opens in due time. If I don’t lay down my will for His will then I will denounce all that He has shown me of His love for me in the past. I don’t want to waste all that I have learned. During those trials is when my faith grew to be what it is today. That is when the Holy Spirit became real to me, guiding me and comforting me always. Nothing can take that away from me. Nothing will.
Gentle Reader, do you know faith in God like this through His son, Jesus Christ? Please share with me your experiences if you do. I know it will encourage me to hear from you in addition to other Readers. Oh and if you could say a prayer for my Stevers that would be great. He hasn’t been getting much sleep lately. Thanks a bunch.
Better finish that mulching project in the gardens soon. Love to you, Just Julie
Don’t you just love a good movie? The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series? Yes, everyone loves a good story with a happy ending. As for me, I’m just glad for happy moments!
I decided that it was time to update my video log of the most challenging aspects of the illness I am battling. Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story. Overall I admit that it’s kind of tough to watch. Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me. I’m safe in bed: I won’t fall out or anything like that. He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden. We simply ride it out until the next one comes along, whenever that may be.
Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse. We don’t do these things where possible! I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors. We did our best. I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds. Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome. Or is it Lyme disease? Biotoxin illness? Non-epileptic seizures? No one really knows for sure.
So here it is. No popcorn needed. A tissue might be worthwhile. All prayers are welcome. I am looking forward to the day when this illness is resolved. In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time. One day in this life or in heaven, I WILL BE FREE. It’s the promise in which all of us who call upon the name of the Lord can rest. Thank you Jesus for your amazing grace.
Jesus is for the Wounded 
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