Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.
31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.
23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.
And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!
I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.
What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.
Lord, please hold my heart and my hand as I make this trip. Let’s go! JJ
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
Some good things noted in our gardens this year included:
Plants from our local Master Gardener Plant Sale did really well at bargain prices; patience paid off by the end of the season for the new rose bush ($5) and 2 tomato plants ($1 each).
Variegated liriope (with the purple flower spikes) was a great addition to our newest island bed (until the rabbits found them!)
Around the flagstone patio, the hydrangeas, Japanese maple, dwarf mugo pine, and Golden Thread cypress have matured to form a nice screen between us and the neighbors.
We got a nice showing from the (clumping) bamboo through continuous soil enhancements and 7 years of waiting.
The hydrangea vine that now covers a great deal of the trellis by the front door bloomed for the 2nd Spring in a row after waiting 6 years.
Elle continue to love drinking out of the bird bath almost as much as the birdies.
The anise hyssop re-seeded itself at the base of the trellis on the left of the patio instead of the right this year.
Walker’s Low Catmint is the most profuse blooming perennial I have ever seen.
Painting the planters black that adorn the bird bath was a good idea, helping to keep the focus on the annuals planted within them.
I got to make a lovely Fall wreath from our hydrangea blooms (picture to follow).
Dahlias never disappoint; I’m glad I planted all 3 of them in the front yard this year.
We are grateful for our first, ever-bearing harvest of blackberries since establishing the raised bed 4 years ago.
Footnotes for improvements next year:
Put hardware cloth (wire fencing) in front of the mulch pile to keep out critters from dining on new additions.
Move the wisteria by the left trellis and the cannas from between the trellises to sunnier areas.
Install a new and permanent mylar deterrent above the bluebird house to scare off intruders. Ours blew off!
Coach our plant sitters a little more carefully when we are away to keep the cucumbers from perishing.
Thin out the native plant bed to help keep ahead of the lemon balm re-seeding and Catmint spreading.
Re-work the new strawberry bed area to save time trimming around everything.
Oh and about 15 other projects! Is a gardener’s work ever really done?
Thank you Lord for your bounty and beauty, the grace and strength to keep things going as best as I could, the blessings of sharing our harvest with others, and for a lovely view out my window on the days you know I needed it most. You are so good to me! JJ
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
Sometimes I just don’t recognize myself anymore. I have used many words for myself such as Julie Anne, Recovering Type A, Recovering Catholic, Adult Child of an Alcoholic, Jul, Child of the King, Snookums, Just Julie, and Booberry. Many other labels inside my head will not make it to this blog as they are unkind and reflect the stinking thinking that was an outcome of my childhood. While I have come a long way there is still so much to do!
My biggest challenge these days is having some kind of identity when my world is smaller; there is less going on. I am sick a lot of the time. I am isolated most days. I go fewer places, see fewer people, engage in fewer activities, and generally do less than at any other time in my life for longer than any other time in my life. Whilst engaging in various activities a person engages in various roles that comprise one’s identity, for example: friend, church goer, Master Gardener, sister, sister in Christ, kayaker, exercise enthusiast, and so on. All of the roles that I have mentioned have severely diminished for me in the past 2 years because of a serious illness. I do not know when this will change. The tendency is to ask the question, “where have I gone?”
I really miss my life before illness. Sure it wasn’t perfect. I still had chronic pain, went to the doctor and had some type of treatment for pain a couple of times per month, and limited my work schedule to a maximum of 30 hours per week. But I was also the most physically fit I had been in my entire life, had the greatest financial freedom that I have ever had, enjoyed rewarding work as an occupational therapist with a flexible schedule, and went to lots of neat places with my amazing husband. My mind was sharp, my confidence was growing, and I felt really loved. Things are more mushy now. Most of the time I feel lost. I am not even convinced I have the correct diagnosis or treatment plan. So this translates into the reality that I don’t really know when I will be well again. This is tough stuff indeed.
And yet there are many new activities that have emerged these past two years. While I don’t work in all-things-gardening as much, I did become an Advanced Master Gardener AFTER I got sick. That was an amazing and humbling accomplishment! The Lord gave me the opportunity to explore blogging, learn more about social media, publish an eBook (Hope Beyond Lyme: The First Year), learn to make macramé jewelry, and launch an online jewelry business (Trinity Jewelry by Design). I’ve made some amazing friends via a local Lyme Support Group in addition to some compassionate folks online. I have kept a journal for most of my life and now my blog has a growing list of really cool followers from around the world. Talk about humbling! Wow. If only you could see my heart right now, transforming from an identity crisis between the lines of this blog tonight to a woman with a vision. You do that for me, Gentle Reader, guided by the Holy Spirit. Thank you for listening as this gets worked out within me . . .
If we were to examine the experiences of my life, we would probably agree that I have had a life that has been harder than most. Over and over again I have had to find Little Julie then Jul and Just Julie amidst a firestorm of hurt, loss, and strife. I have come to understand that the Lord has had His guiding hand, loving arms, and protective wing around me all along where the good people and perks of life were missing. He has allowed the trials and tears to bring me closer to Himself, to help me to see beyond the circumstances around me. The Lord has shown me that the bad stuff was not wasted or intended to hurt me. The Lord wants me to be complete and allows all this to conform me into the image of Christ. I pray that I will not lose heart during the refiner’s fire. I pray that I will see His blessings soon as I have seen so many times in the past. I just gotta hang on a little longer, let Him carry me a little more.
Where have I gone? I am in another wilderness experience like Moses and the Israelites of the Old Testament who wandered in the hot, dry desert for decades wondering if they would ever be “there yet.” I must keep my eyes on Jesus: the light that leads and the cloud that blots out the forces of evil that taunt my doubts, fester my feelings of inadequacy. It just doesn’t matter anymore where I have gone. What matters now is where am I going?
Happy new year, Gentle Reader. Will you go with Him too in 2014?