There’s a Barbara Streisand song with lyrics that go something like this:
If we had the chance to do it all over again, tell me would we . . .
Could we . . .
The way we were.
It’s not that I would like to go back to my former self or anything like that. I have had chronic pain for most of my life and lived with pain inside my heart for longer than that. Many of my own mistakes were downright damaging. Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings. The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here. But there is one part I am not sure what to do with . . .
I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight. All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old. (Not sure what they were waiting for before that!) I always rode my bike as a kid EVERYWHERE. I did not think of it as exercise at the time, just a means to get me to the home of a friend. Several times in college I tried running around the sidewalks of the sprawling campus. “Library Hill” was a killer! Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill! Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!
What I miss most is the innocence of moving without thinking about it. Every day lately brings stark reminders of the convulsions that have returned. Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind. Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago. Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week. I loved being strong.
Today I miss being strong. The trauma of seizures and convulsions have taken their toll. The sickness after an episode usually lingers for hours, days. I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal. Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day. Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store. It’s something, eh?
O.K. so I am bummed out. I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped. There are tiny improvements and for these I am grateful. I think I’ll need a little longer to recover and clear the anesthesia completely out of my system. In desperation I went on a water fast for 24-hours last week. It was awful! Amazingly I did not have seizures until the 24th hour! I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.
A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates. The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.” Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children. In children the diet begins after a 24-48 hour fast in a hospital. Hmmm. My great Physician led me here after my own fasting experience too. So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates. Good news: that means lots of bacon! And at least I am off the pureed diet now!
The way we were. Can it be that it was all so simple then? Or has time re-written every line? If we had the chance to do it all over again, tell me, would we? Could we?
Perhaps the real longing requires me to not look back at all. Then what is it Lord? Fill this emptiness, please. Ease this hurting. Thank you for new tracks to run on, so to speak. I still need you desperately to guide me. I realize that I may not be alone in this desire you know. Please comfort the Gentle Readers out there who need you too. JJ
EMU Halle Library with another runner testing his strength!
Remember that John Lennon song from the 70’s, Whatever gets you through the night . . . it’s alright . . . it’s alright by me?” Well I am not endorsing riotous living by any means! I am saying that for me this past weekend, having a Closed Group in which to vent some drama was my “whatever” that got me through a couple of unusual nights and days when everyone else was asleep. Thanks for being there Cyber Friends. Here they are, out in the open:
Friday
Up very late again after the Lord added His increase so I could do some baking. There’s one more day to go entertaining in our home while trying to: avoid toxic (chemical & mold) exposures and squirrel away when the convulsions come. My hubby’s kids have done a reasonable job following our precautions, thankfully. I’ve missed some activities again this year. (For example, a partial Skype date with more family when I had to leave for an hour-long noxious episode!) Sometimes I feel like I have disappeared and other times it’s just me spending so dang much time in the kitchen preparing my special diet. Guess I’m glad I finally got my stuff done! I’ll have more food prep help tomorrow. Hey thanks for listening!
Saturday
Strangeness abounds! Still alone again after not being able to get up to join family due to wretched convulsions. Instead of making a nice honey maple ham dinner (for which I had prepared last night) my husband’s daughter made a different lunch for everyone. I was still in bed seizing! Now I’m up eating my special food alone with you and the Lord in front of our pretty tree.
The fam went indoor go-kart racing! Before they left and whilst praying the spiritual warfare would end, I got a text that my ex-husband needed to contact me for the first time in 10 years! Could he have gotten saved? So my time alone now has been tranformed into a prayer time.
No worries. The Lord has me and you gently in the palm of His hand. I see He may have “others” there too and it is all good.
Update to follow . . . With love, J
Sunday
Finally stabilized and was able to go out to eat with relatives after a wretched morning (aka husband carrying me to the bathroom then bringing me some food before I crashed for another 2 hours while he went off to church). No, the ex did not get saved so I will continue to pray if he comes to mind and in the meantime block further communication for sanity reasons.
Sometimes it just helps to vent the drama that characterizes a life with serious illness. I’ll bet that many of you reading this get it. Our “new normal” never really feels normal at all. I rest in the fact that the Lord sees all and carries me though each breath. When I couldn’t breathe later last night in repeated seizes, I reminded myself that I ain’t dead yet so it must be all uphill from here! “Trust in the Lord and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths.” Proverbs 3:5-6: you rock! It’s gonna be a better week! :J
Addendum:
Have a blessed couple of days, Gentle Reader, making the most of whatever is remaining in 2014. With a ton of yummy leftovers in the frig and sweet Christmas memories too, it’s going to be alright, alright, alright by me too. :JJ
Brief update: I seem to be in what an airline pilot might call a “holding pattern” lately. When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms. Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results: high potassium and very high mercury. Yipes! So my husband and I are investigating chelation therapy. I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions. In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution. We will be covering this in prayer. For most folks chelation is a difficult journey. But hey, I’m familiar with that already, eh?
More details: The daily 2 to 5 hour waking seizure attack episodes continue. One day each week the episodes exceed 8 hours on and off during which I am largely bed bound. If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours. The rest of those days is pretty worthless. I have at least two “worthless” days at home each week anyways, regardless of my activity level. These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home. I may see you here at the computer and mope through other very sedentary tasks. Dinner may or may not get prepared. Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!
The normal sleep-wake cycle remains elusive for me. When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack. This happens twice per week. I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring. Many days the tazoring wakes me up in the middle of the night. Good grief! That’s what happened last night prompting this blog. When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely! This also happens twice per week on average. The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so. If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all. I love it when the latter happens! The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day. I love days when I do not have any appointments that disrupt this schedule!
The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance. Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed. My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate. The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract. Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions. Not good. This syndrome has a name: Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity. The good news is that my gut health is better than it has been in a long time. That tells me that the dietary strategies are working! There are times when I feel more alert and my thinking is clearer. At times my memory is better. To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design. And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .
October 11th will mark the 3 year anniversary of becoming sick. (For more on that story, see the About Julie page.) I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager. No work or disability income is in sight. The Lord has provided for my every need through my gracious husband and His grace. Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before. Steve is my hero! We trust in Proverbs 3:5-6, Psalm 41:3, Psalm 71:14,Revelation 21:1-8 and more. The Lord is faithful to His Word: we have seen it, we hope in it, and His living Word carries us through it all. Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid. That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me. Oh Gentle Reader, can you say that too?
So many unknowns fill our days. We can respond with woe and fear or we can respond with FAITH. And our faith is only as strong as that to which we apply it. I hope that you will join me or have put your faith in the omnipotent God over all. Yes, I wrote all.
Nothing less will do when faced with the next, er, bite in the shorts. You know I had to say it didn’t you?! :]
A blog is an interesting vehicle in one’s life. You get to write about anything you want and just about anyone, anywhere can read it. At least that is how this blog is structured. Funny thing is that once you get going on a particular topic, there’s a high likelihood that you might reveal a little more about yourself than you might if you were in person. The ideas just flow when here alone at the keyboard and if it is a personal blog (instead of a professional or business forum) well things can get personal quite easily! If you are honest, that is!
Why bring this up? Well I have come to realize that some tragic events in my childhood are influencing the nature of my recovery from illness. The question I have grappled with of late is whether or not to write about it. Oh the story is juicy enough to draw some interest and you bet I’ll let you know how the Lord has helped me endure and overcome the pain of it all. Healing has come for these hurts because of the love of my Heavenly Father manifest in my personal relationship with His Son, Jesus Christ. The Holy Spirit has guided the process: providing counsel, “Jesus with skin on” in the form of loving sojourners, helpful tools, and His glorious written Word leading me to hope. So why share the hairy details anyways?
Possibly I would because horrific illness may trigger past hurts for others more than me. I don’t want you to feel alone if that is part of your story. New trauma often stirs up old wounds: at least the one we might find are not fully healed. We might not know that they are not fully healed until something new happens in our lives as in the course of serious illness. I view many of these events as “another involuntary growth experience” and am often left feeling more whole when I work through the tender issues correctly. The problem is that when you happen to mention to a medical professional that waking nightmares, seizures, involuntary screaming episodes, and convulsions have triggered scenes that might be from your past YOU GET A PSYCHIATRIC LABEL AND THEY STOP TRYING TO TREAT THE MEDICAL ILLNESS. This is frustrating indeed! The medical illness came first. Healing secondary issues is a bonus, like clearing out cobwebs in a musty garage. Cool beans and all that jazz. Keep the treatment focus on the root cause people!
So for me to share old or emerging facts from my abusive past runs the risk of my physical symptoms not being taken seriously. Convulsions require serious examination, eh? I paid dearly this past Saturday for venturing out on a private lake for my husband’s canoe and kayaking class hosted with a friend. Even though the water was treated with blue dye to prevent algae growth, it was there anyways. I have never had such violent, animalistic, horrifying convulsions in these 2 1/2 years of seizure attacks as I did one hour after I returned home. You would not believe the level of torment I endured continuously for 2 wretched hours! The rest of the evening was awful too with a rebound of episodes on Sunday. I lost over a day of my life in payment for enjoying a paddling outing with my beloved and some friends. The biotoxin illness won and I lost. Tell me how this is all in my head as the working out of an unhappy childhood? NO WAY.
If the story of my sorry childhood made a difference to the “Hope Beyond” I would like the Gentle Reader to find, I would write about it here. However in doing so I would risk selling myself short in the process for those who might not follow my whole story. One of my blogs generally covers only one topic as in a chapter of a book. Further, reading a posting about a waking nightmare that was remarkably similar to a very bad day a long time ago would put the focus on the past and not on the exposure to cyanobacteria earlier that afternoon. And in the end we bloggers don’t need to share everything about ourselves to be heard, to make a difference in the literary world. We only need to be genuine to ourselves, to our subject matter. Should I need to share a scene from my past to make a point I might do so briefly. To say more will put the focus in the wrong place. I need to keep my eyes fixed on my great expectation for what lies ahead of me (and all who believe), in the glorious presence of my Lord and Savior. One day when my life on this earth is over He will make right all that was not right back there and heal me then, if not sooner. I believe there will be a blessing for my stewardship of the experiences, sacrifices, ministries, and choices of humility He allowed in my life if I have succeeded in acting according to His will. And if I have acted according to His will then it is only because He helped me to do so! This stuff is way too hard to make it on my own.
The story that truly makes a difference is not mine. The story that has the power to transform the lives, the hearts of mankind is that of the person of Jesus Christ. Let His own Words of His life, His pain and suffering as chronicled in the Gospels (the first 4 books of the New Testament in the Bible) lead you to His throne of grace. Lay your burdens before the One Who is, Who was, and Who will forever be. Let His love redeem the pains of the past so that both you and I may live freely in His presence forevermore. What great fellowship we shall enjoy one day soon! What great joy we will know when He calls each of us by name Who knows Him as Lord and Savior. Oh how I long to hear His stories of how much He loves us, He takes our prayers to the Father, and has prepared a glorious place for us to dwell in together: Him and I; you and Him; the fellowship of believers; the cherubim and seraphim. Yeah that’s where my focus outta be!
Philippians 4:8New International Version (NIV)
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
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
Jesus is for the Wounded 
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