decisions – Jesus is for the Wounded

The Dog that Will Be

Published on January 29, 2022January 29, 2022 by Jesus is for the WoundedLeave a comment

We may never really know the dog that our sweet Luna will be

For this pup lover appears to have severe allergies revealed from she.

Elle left us and shockingly I got better on many fronts

Then I cleaned and purged, only to backslide when I shouldn’t.

The German shepherd sheds like mad. Luna’s fur is stunning and long

But when she came to us so did a return of symptoms; it’s all just so wrong!

The allergy testing suggested my love for dogs was safe

But this is not the case at all suggesting years of medical pursuits largely a waste.

We have endured much in our 2 weeks together already dear puppers

How can we part when you have barely begun to trust us with belly rubs, your suppers.

It’s more than simple allergies when it’s neurological relapsing too

After nearly 3 weeks of reprieve only to backslide just too soon for it not to be true.

Some tough decisions are ahead for each of us, our 2 year old friend

Please forgive us if we must send you forth to another GSD lover in the end.

We are heartbroken. JJ

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.

Clarity Came to the Caregiver

Published on May 8, 2018May 8, 2018 by Jesus is for the WoundedLeave a comment

Sometimes the moments of frustration break away to clarity and decision. Gratefully, the crisis is over for now in our care-giving responsibilities.

Recently I vented about the stress and trials of caring for a family member at a distance. She is having difficulties making decisions. She is having difficulty trusting anyone to help her despite reaching out to a few family members to do just that. Then she changes just about everything after you have helped her establish according to her wishes at the time. I am concerned for her safety. Mostly I have been concerned for my own sanity and stress level, caring for a lady for whom nothing is quite good enough. What a tough place for us both to find ourselves.

So we will back away for now until she finds that she really needs us. Her summer visit is now cancelled. Her indecision really is a decision of sorts! My beloved saint of a hubby and I will see this family member within a month where we will regroup in person. Until then I will focus on the tasks of recovery from my own serious illness. More about that next . . .

Fiji, water, patio, covered porch, Indiana, Spring, garden, relaxing, healthy food, carrots, Bible reading, prayer time, shade sail, flagstone

The way it should be

Published on November 21, 2016November 21, 2016 by Jesus is for the WoundedLeave a comment

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way. The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off. He never does that. I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them. My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home. My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it. Someone named “John” supposedly signed for it but it was never found. They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be. Well actually I knew that long before 2011 from my work with PEOPLE in healthcare. Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes. In the end it’s not about the individuals really. It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.” Yes indeed. Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ. We are to love everyone else as unto the Lord. Only He will never forsake us, never fail us, and deliver right on time every time.

Alrighty then. This rant is now over. It is just before sunrise and my nurse will be here in a few hours to administer my care. I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts. Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways. I will trust that the Lord’s will will be served once again. So before I stop making any sense at all, I will end here.

It’s probably the way it should be? JJ

My Top 10 List: Tools of the Trade

Published on April 7, 2014April 7, 2014 by Jesus is for the Wounded4 Comments

I had a supervisor one time that said, “you are only as good as your tools.” She was referring to the splinting supplies in the occupational therapy clinic that included state-of-the-art warming trays. Thermoplastics used in making upper extremity splints must be heated to the correct temperature or they become gummy; they also might burn your patient’s forearm when it gets too hot! They had a thermometer on the splinting cart which was a luxury in those days. Now with so many choices of materials from which to choose at a variety of temperature specs, having the right tools is standard practice.

Splinting never was my forte but the advice stuck with me. My words came back to me when the men in my life would often repeat this phrase when faced with a decision of whether or not to add to the man cave “tool box!” Yeah, it was usually o.k. with me. Usually a new kitchen gadget jumped into the shopping cart too. 🙂 These days my tools relate more to gardening and my own health care. Here’s a new spin on the latter: your recovery is only as good as the tools you employ for recovery. This post is an addendum to an earlier blog entitled, Keeping Sane While Recovering from Serious Illness. With some tools that are tongue-in-cheek and not necessarily in this order, here goes:

1) Treatment journal, online or in a notebook. Keeping track of medications, supplements, medical appointments, changes in treatment plan, etc. is critical to success. Who wants to make the same mistake twice? My hand-written journal entries are more truncated these days since I’ve got my routine stuff down better and more social supports in place. I do go back to earlier postings and am grateful for some progress. Even if I am not doing better in other areas, I know that I am coping better overall; thank you Lord!

2) Smart phone. When stuck in bed I can still stay connected to the outside world via my social media favs, email, and text. The Bible App is awesome and keeps me in the Word on a daily basis with its Bible-in-a-Year reading program. On my mobile I can also look up what the heck is going on in my body and boost my lame brain with reminders of this or that on my calendar. I was a late-adapter to the world of 4G+ and cannot see going back to a flip phone anytime soon!

3) Fingertip less gloves. My hands and extremities get chilled in the evening. It’s a battle trying to do a few things when I am awake and feeling better in the middle of the night but feel like I’m freezing! The drop in body temp can trigger noxious symptoms so I needed to find a strategy for keeping my hands warm. I was Christmas shopping at Macy’s this past year and there they were in a colorful display: a table filled with mittens that had removable mitts so you could expose your fingertips. Your hands stay warm from the middle knuckles through the wrists. Success! These even come in handy when taking frozen foods out of the freezer or grocery shopping. Grocery stores give me the chills year round. Know what I mean?

4) A really warm fleece jacket with pockets. For the reasons noted above, I finally have something to keep me warm when roaming about the house later in the evening. The softness of the fabric is comforting too. What did we ever do before Polartec? Or maybe for you it is a handheld fan?

5) Fuzzy socks! Yes they are warm. It’s the cute designs and fun colors that make me smile a little when my feet are cold. My cow socks (which were a gift from when my Aunt Patty lived in Vermont) are my favorite. The thicker the better, over the ankle, and loose-fitting too. Such a simple pleasure.

6) Breakfast from a traditional lunch bag. Mornings are the hardest for me. Most days I awaken in elevated pain with noxious symptoms that make it difficult to use the bathroom let alone make breakfast. Finally the Lord led me to a solution of making my breakfast the night before much like I used to make my lunch to take to work each day. The freezer pack keeps it cold until morning. Many times I am eating food cold that others might microwave/heat up before mealtime but that is not a requirement for me anymore. I just gotta get food in my belly to feel better so a chunk of meatloaf for breakfast it is sometimes!

7) Making the effort to cook or purchase special snack foods that fit within my restricted diet. For example, I think I’ve finally mastered coconut flour pumpkin (or squash) muffins to comply with my Candida/mold-free/low oxalate diet. Pulling a little essence of home-baked goodness out of my breakfast bag in the morning with Earth Balance Organic Coconut Spread, I no longer feel deprived! The recipe is a bit challenging so I double it and freeze them for yummy goodness each morning.

8) Emergency remedies on hand at all times. For me this includes high CBD hemp oil and a charcoal-filter face mask that have arrested an oncoming seizure attack when in a public place more than once. We need to be proactive in managing the crises of our health condition where possible, saving the real emergencies for situations beyond our control, eh?

9) Slip-on shoes and slippers. Who wants to bend over and risk falling on one’s head when weak from illness and needing to cover one’s feet? Yeah, not me either.

10) Something or someone warm and fuzzy. Yes, this can include the stuffed kind or your man with generous amounts of chest hair to comfort us when needed. (O.k. maybe your lady in soft flannel pajamas would apply here instead!) When my beloved is not home our German Shepherd pup gets a little extra massaging. Who knew that a big, protective dog breed would love to cuddle? Elle, you rock.

Well there you have it: my top 10 list of recovery tools. Have some of your own? I’d love to hear about them! Please feel free to add your comments below.