If a cyanobacteria exposure in a reservoir creates the same biotoxin illness as mold exposure, then why did I not tolerate the Shoemaker protocol to recover from both?
Tis the gyrations of health, I guess, like a drone spinning out of control from the pond beyond to the one drowning in our own backyard.
If latent Lyme disease reared its ugly head but resisted treatment with 3 increasingly costly protocols over 5 years, then why do I keep barking up this fallen tree anyhoo?
Tis the juxtapose of stealth bugs who hide, change their DNA, become resistant or move from my big toe to deep within the brain raising havoc all the while.
If a chain of serious viral infections can hang their shingles on my weakened frame at Christmastime, then why does not 30 days of treatment make barely a dent in one of them, huh?
Tis the nature of complex illness when antibiotics awakens a sleeping class of infection, pushing me to a sideline call more spectacular than a Super Bowl play in overtime.
If heavy metal toxicity met its match with the best testing, detox protocol, and success, then why is it still possible that more mercury, lead, and maybe aluminum may linger undetected in me still?
Tis the nature of blood, urine, and hair sampling that only captures that which is circulating or secreting not the poisons imbedded in tissues only a needle in a haystack would find.
If I can gain 34 more diagnoses with one trip around the calendar trying to get well, then why would we even question that there’s a need for a new tune, a break, and yet more prayer?
Tis the nature of hopes dashed while waiting and seeing what may come (not wasting time asking “why” instead of professing “I will trust you Lord. Show me how. See me. And love me through it too.”)
If when married in the past and health challenges that now look like child’s play came but crushed life as I knew it, then it would be many years later that my intended beloved would show me true love: how true faith conquers all, overcomes.
Tis the nature of fake religion which fails when life gets hard. A God-fearing man seeks the Lord. A God-fearing woman does too and this will be our calling card when this chapter of our lives is through.
And if my writings, my research, the doctoring, trial-n-error, or treatments really worked for something good, then why the heck would I still be seizing each day with “the flu” and pain that has marked 5 years of disabling suffering?
Tis the mystery of bothering to recover, trusting in the Lord who has saved me from far worse knowing that one day we shall rejoice, you and me Gentle Reader, if we but hang in there a little longer with hope beyond the gyrations of this life.
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.
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
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