illness – Page 6 – Jesus is for the Wounded

A Well Worn Path

Published on November 9, 2018November 9, 2018 by Jesus is for the WoundedLeave a comment

If you travel the same way and expect different results they say it is the definition of insanity. I get that so I resist the same.

If your baseline shifts and you take the same precautions against a disastrous outcome, you might say you are taking a chance that you might get different results. I usually control the factors I can and go with the new direction . . . when amnesia sets in from the last failed effort and something new looks promising.

If you smash into a devastating blow anyways and have to retreat to combat the devastation, you might say that you were more rolling the dice than making a reasonable plan for success.

If you add too many factors in any plan, precaution, retreat and come up against a surprise attack from an unforeseen foe then you won’t know what hit either one of you until the smoke clears along with your heads. Me: hours of violent convulsive episodes and the aftermath. Him: heartache, exhaustion, and no peace.

And if you are me in the latter years of battling a complex illness, you live in shock from the blows of what hit you in the last 24 hours when it is after 6 days of relatively few symptoms. The new treatments did look promising. They did not hold off the onslaught, however. And you paid one of the highest prices once again this side of heaven.

And if you are the beloved husband trying to navigate these landmines, help fight the war while carrying on with the normal and fun activities of life . . . you will have to watch the horror of your beloved get tortured on the battlefield. You try. Success is elusive or temporary. You fail. Again you grieve and so does she.

And if this well-worn path brings despair then so be it. Tomorrow is still another day. As for me, I’m still here and so is my beloved. Most importantly, I know that my Lord sees my waterfall of tears lain at His throne of grace. Life will go on somehow as it always does; I have more responsibilities now. The despair will give way to some sort of hope in due time; the Lord will add His grace and strength to see me and my beloved through once again.

For today, I am like a beaten puppy on this well worn path of life. It is tough stuff indeed.

Dang! JJ

Stuck in the middle with you

Published on October 28, 2018 by Jesus is for the WoundedLeave a comment

My beloved is most gracious, loving, and kind to me

For these I am grateful.

My ventures out into community work were wrought with struggle then success

For some good results I am humbled.

My convulsive episodes have lessened then spiked on occasion, giving more clues than questions of late

For this I am, alas, perplexed.

My labs raise questions about new things that need attention more than providing answers about a cause, per se, oh my

For the discouragement I will turn a cheek and trust my Lord, the Yahweh.

My distant family faces tragedy so we love on those who have come nearer for a time

For them we will simply give our love, again and again.

My life sprints and spurts in a race against time, energy, resources, wisdom, and fatigue

For the long naps this past week I shall be grateful.

My most prized moments are those stuck in the middle of all with you my dearest love

For your tender arms bring Jesus with skin on: tis a really good thing, being here with you, even now.

My life would matter less if not witnessed, not shared by one who cares for me so and me for him

For such a time as this, you are the most incredible gift. I love you Steve. Thank you.

The Chips Under the Bed

Published on July 13, 2018July 13, 2018 by Jesus is for the WoundedLeave a comment

They should be alright after about a week in the heat, right? Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night. Of course it may be 3 in the morning but it all comes out nonetheless. Not this time. This time was very different. The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS! Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us. This was a huge undertaking for all three of us: a journey that began over 6 months ago that was actually cancelled the first time around. Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure. But there is good news: my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago. As for me, not so much.

Last night was one of the most horrific scenes of recent memory. After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable. My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us. We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her. Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet. She lived in an inadequately maintained and moldy living environment laden with the fragrances that most women like. We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough. I crashed fast. She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me. The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed. The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury. These kinds of episodes are very dangerous! So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began. They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom. The repetitive oscillations injured my spine from one end to the other. I could not move my body and was terrified of falling. Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode. I just held on . . .

Things were no better once lying down. The involuntary shaking traumatized my neck and my body temperature began to drop. I could not speak when I needed to and breathing was difficult. Time either stood still or passed along quickly, I have no idea which one. I couldn’t even cry out my angst until much later. Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom. Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop. He sniffed my clothing and found them to be musty. That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling. I guess it is still a problem! My Beloved removed my soiled clothing and the amplitude of the shakes lessened. But by then the weird, demonic-like writhing and vocalizations had already begun. It is terrifying to endure this hell. I prayed for the Lord to take me. I searched for the white lights but did not find any. Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity. I was at the lowest point, last night, after doing significantly better these past 5 months. Looking back it all makes sense: cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida. It rains there every day now and she has had water damage in her condo several times without remediation. I wore a charcoal mask during our time there but the conditions were still unbearable. (Even Steve agreed and had some symptoms.) Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work? I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease. The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis. We simply could not leave her in Florida any longer. For today, I am grateful that I did survive last night because I got to see a miracle in action. No, it’s not only the organic lime corn chips that are alright tonight. I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course). This is the first time I have been stable in 4 nights. The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside. Well hello Dean! He was offering to drive her back home to Florida. While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me: her now former caregiver in crisis. She left with him after some dinner, some packing, some very sad goodbyes. Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway). Steve is grateful for the possibility of a full night of sleep. We shall recover. I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her. I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives. Please join me in praying for my Aunt. Dean won’t be staying with her very long and . . . I had to let her go from our care.