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
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
8:30 a.m. The big guy has finally finished praying, eating out of a tiny bowl, and remembered the fuzzy one at his feet. Yippee! It’s time for mad dashes across the yard at Top Gun speed in the cool air that I really like. The tall one thinks I really like that neon green ball but really it’s the hip massages I crave that follow when I roll onto my back at just the right moment. Roll over too soon and the scratches will barely reach my undercoat. Submit too late and he mutters something about work as our bonding time ends. HEY, I LIVE FOR THIS! What else is there in a dog’s life?
8:45 a.m. No way the dude got as tall as he is with the dry nuggets he feeds me. Better check out what’s in that little black bowl on the table when he’s in my storm shelter (aka bathroom) later. Finally it’s time to eat again, gourmet Purina Select for my allergies, but it’s chump change for a pup with discerning tastes. Oh well. I’ll see what I can charm out of the girly one when she appears after my post-breakfast nap.
9:00 a.m. I watch out the window as my buddy leaves in the bat mobile with funky racks on the roof and a grumbling noise that’s worse than me. Sigh. Who knows when the girly one will find me lying here in the laundry room. Better position myself so I can see her when she comes for me yet still defend my turf if needed. My eyes may be covered with furry lids yet I know when that beastly garbage truck, UPS invader, yellow child carrier, meter reader or anyone else threatens my territory. Time to go to work or is it sleep? They will never know!
9:30 a.m. Looks like the girly one has entered my zone here at the front of the house but she is ignoring me already. “Hi Elle” doesn’t cut it when my ears need scratching! Sometimes she gives me a teaser then goes and washes her hands in the perennial water bowl on the counter. Nice sentiment! I never brush my teeth when I lick your pants do I? Those earthlings just don’t get it. My mouth is cleaner than a baby’s bottom! Just ask G.J., the mutt that used to lick your grandmother’s feet every night. Heaven for both of them for sure.
10:00 a.m. More food smells fill my nose! Sometimes she’s eating in the unauthorized zone for me, in the back of the house somewhere and sometimes she’s out here with me in the kitchen. I like it when I am within range of the good stuff. She eats meat for breakfast and that is what I like too. I often get a fat scrap to tide me over until they almost forget to feed me in the evening. I really need to unionize or file a complaint about that one. I am on watch at this point. The girly one is up and I am a shepherd. I will protect her from anyone that drives into the courtyard that needs my scolding. Warning: “come near and I will eat you!” or at least it’s going to sound like it when you come near. That’s just the way it goes with bigger pups like yours truly.
11:00 a.m. Now where did she go? Hey, it’s still puppy play time! What about me? Sish. She’s gone back to the unknown zone in the back where I am not allowed to roam. Things get really quiet when she is back there. She’s still got that fake fur light blue coat on so maybe she is taking her own post-breakfast nap. Humans! Who can figure them out? Better believe that she will reappear if my barking is convincing enough. Hmmmmm. I could mess with her on this one a bit. And maybe I have . . . .
2 or 3 or 4:00 p.m. If she is still here and hasn’t left me stranded in my boring dog zone in the kitchen, the girly one is back. Yes! That means it’s time to go outside if I haven’t gone earlier. Sometimes she makes me wait a long time. Good thing I’m not on a potty schedule or anything. Gotta time these slurps of day-old water just right. (Not that I mind day-old water. Mud puddle, bird bath, pond scum, water dish are all the same to me!) If I am really cute maybe she will play with me a little longer or take me for a ride in the giant metal pet carrier on wheels. Well I am just going to sit here with my ball beyond the property line where she has tossed it and give her my best silhouette. It’s kind of like being obedient. She doesn’t know that it is a game with me. Who wins is the one who gets to play longer. If I come back right away after squirting the grass then she will usually toss the ball for me a couple more times. Win-win. I’m a dog and I’m not concerned about her afternoon appointments. It’s play time!
7-9:00 p.m. Rarely do I get to go anywhere in the evening unless short stuff takes me for a walk. When she grabs that black leash I am in heaven! Otherwise if they have stranded me for the day, it’s nearly dark when my peeps return with bags of stuff that rarely contains food for me. What a waste! Take me with you next time! I’ll sniff out the best deals! Oh well. At least they take me for a bathroom run again and let me run around the yard a bit before dark. The winter time is best for this when that white stuff is on the ground. I LIVE FOR SNOW! The big guy puts on his paw extensions and we go for long slides around my watering hole out back. IT’S THE BOMB! In the warmer months I get to do pretty much whatever I want while either the tall dude is pushing a buzzing snack shaver around my yard or the shorter one is digging up stuff, playing with my watering wand, or kicking me out of bunny sniffing zones. Paws are better for digging dontcha know and I have an underground condo to prove it! Alas, I love being outside. It’s where I was born and where I belong. However I’d really rather be with these oddballs without fur (except the big guy who has a wimpy version compared to me) so I go in when I am called. It’s my duty as their pup!
10:00 p.m. My masters sit and eat in front of me and never feed me from the table. What a rip off! It’s not like I can’t smell it you know! Later when they remember that I am hungry too (I am not just being cute: I am trying to tell you something!), they dump some more MRE rations in my bowl. Hey throwing it on the floor would be more fun really. Whatever. When the girly one gives me some skin, as in chicken skin, I am in heaven. This when I know I am truly alive. Then they wrestle with me and I pretend to chew on their paws. Yeah, they really love me. Even if they cut back on the tartar control mix they call dinner, to keep me a lean, mean, fighting machine — I don’t mind. The rabbits get a better run when I have a waist don’t you know?
11:00 p.m. At last. More dog time with my master. Oh the girly one thinks she has my heart cause she pets me when we are home alone or up late at night. Yeah but it’s the big dude that sets me straight and that is cool with me. I get a little wild sometimes in my canine heart that wants to run freeeeeeeee! His discipline is firm. This is how I know he loves me and wants to protect me as much as I want to protect him. I don’t really want to get squashed in the street you know as I chase the kids on their bikes. Maybe it looks like I don’t know what I am doing? That is not the case. I am a smart German shepherd and I am always on alert don’t you know. Just watch me sitting at the edge of the yard sometimes, placing my furry tush between them and any potentially offending intruder. One false move and I will let them know who is boss. Well, at least my bark will say that I am da boss!
Wee hours of the a.m. This is a strange time in my den. The girly one has been up with me until nearly daylight for the past 2 years. Sometimes I hear her crying in distress and it breaks my puppy heart. I am worried about her and I know she sees it in my face. The look is good for a scratch behind the ears too. “Puppy therapy” she calls it when I see her a little later. Whew! I sigh with relief that she’s o.k. I don’t know how she does it every night. Maybe she will get better and sleep more like me. I think it’s starting to happen but I can’t be sure. It’s a dog’s life and I live in the moment. Besides, dozing, sleeping, listening with my eyes closed is a full-time job you know. She used to do stuff outside our den most days of the week. Oh well. For now she’s here with me, most days and every night and I love her. The big guy is pretty cool too. He is rough with me and I like it. Such a nice blend. They make a great couple. Oh well. What do I know?
Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment. Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind. Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child! A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within. And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time. Sure wish I had more of the first one and less of the others in my history!
A gentle answer turns away wrath, but a harsh word stirs up anger. (Proverbs 15:1)
Yes indeed.
The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection. My left arm was tucked along my left side with my head turned to the right as I lain partially face-down. This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up. The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty. Oh well, that’s what the chiropractor is for, right? Sigh.
Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today. That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli. I can’t even cry right! Then things got incredibly darker. In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind. Then in my mind’s eye I could see the images on my arms. Just then I noticed that Steve was stooping over the side of the bed beside me in the dark. Holy crap! His sudden appearance in the dark scared me further. My body writhed with seizures, now lying on my right side with Steve behind me. My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure. But this was not a movie. This was ME!
A few decades ago some really bad things happened to me when I was a kid. I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books. True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead. He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve. I felt happy and free at last. Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold). I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day. They are heartbreaking for both of us in addition to many other folks who have witnessed them too.
Over and over again I have searched for meaning, a purpose for this extended illness. The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure. We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process. Eventually our dog joined us in the hotel. Eventually we completed the remediation, opted not to sell our house, and moved back home. However, the seizure attacks never stopped! By summer of 2013 they increased to up to 4 hours per day! No medical professional or online research has found an answer yet. Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.
Recently the Lord did show me a few tasks that needed to be completed in our marriage. The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey. We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home. This helps prevent exposures for me that could cause a negative reaction (aka seizures!). I love that my beloved is helping to protect me in this way so that I can get well. I love that he has been faithful to the Lord and to me through this entire journey. Others are watching us and I understand that we are doing some things right! My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late. I am grateful to be able to recognize the good that is here along with the challenges. There is always good along with the challenges if we look closely enough . . .
Back to the scene in the bedroom. I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me. The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind. Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly. I just couldn’t risk a casual brush of a hand; my distress was already unbearable. Then the breakthrough began to happen. Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before. I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell. Tears came. Silence followed. I was able to ask for what I really needed when scared.
Soon my gracious and godly husband was gently sitting beside me. I’m not sure if he was more horrified or moved to compassion! We processed the scene. His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm. Soon he was able to reach out with comforting touch for me as well. Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken. I was able to lie in the arms of my beloved once again.
My writing this story includes a great deal of literary and intellectual license. I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth: my Heavenly Father. I am glad that I found my voice in the darkness this evening. I am glad that I survived a wretched scene without too much damage or lingering baggage. I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together. I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory. Lord willing it won’t be so bad next time.
Thank you, Jesus, for your redeeming grace. You make all the difference in the world for me, tonight and always. Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13). Be my voice in the darkness and in the light. In Jesus’ name. Amen.
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.
Jesus is for the Wounded 
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