The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today. I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.
We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration. Family was scheduled to land there from 4 States for a long weekend including the 4th of July. My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best: cancel and reschedule the trip for the Fall. We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc. Then this wifey-poo decided she still needed to get away . . .
Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it. While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible. Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders. I reacted selfishly when everything changed. I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration. Maybe I need less of “poor me baby,” sentiment, eh?
Steve and I thought through our options. We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display. But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics. So what about camping afterwards? In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!
Supporting the race.
Finishing up all shopping plus cooking within a day for my special diet.
Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
Resume treatment at home after a 5-day break.
Commence about 8 loads of laundry, post-camping melee, etc. too!
So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall. At some level I exclaim: how crazy! And: Is it worth it? Well my answer this time is different than in the past: NO! There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer. There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness. When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago. What were we thinking back then anyways? Trying to continue with a normal life was my focus then when I did not have a clear treatment plan. Killing the beasts within me at an extraordinary cost is my focus now. The proceeds from the sale could pay off some of our debt. I was ready to let it go should the Lord be leading me to do so.
In a Christian marriage, the husband is the God-ordained spiritual leader of the home. His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord. I have come to trust this, be blessed as well in submitting to Steve. As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year. We have a couple more trips planned and it is clear that he wants me with him on all of them. How sweet! His love is amazing. We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!
Oh did I mention the blue footies yet? I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring. (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.) Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors. This saves a lot of time and effort as compared to other cleaning methods, IMHO! Then when I continued to have difficulty functioning, the idea got shelved instead of developed. Dang! Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week. Works great! And in thinking through all of this today I am reminded of these truths:
John 16:33 New International Version (NIV)
33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Matthew 6:25-27 New International Version (NIV)
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?27 Can any one of you by worrying add a single hour to your life?
My Heavenly Father and Husband is so good to me. He loves me so and I get to feel it everyday in the arms of my beloved Stevers. The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination. Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved. Thank you for caring about all the details of our lives. I submit them to You. We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us: from blue booties to a lighthouse along the shore.
This rings true above all else: You are so good to me. Thank you Lord.
Kayaking at Lighthouse Beach along Silver Lake Dunes
“Just like you would to your girl or guy. Be true to your school. Rah rah, shish boom bah!” And Gentle Readers I submit that this also applies to US TOO!
In a recent trip to the Emergency Room (yeah same story, different day) I was received by the male nurse who did my initial evaluation less than a month ago. I remembered the gooley, inappropriate look on his face as he handed me a hospital gown and asked me to change clothes then waited for me to do so right in front of him. He had the gown opened just below his eye level. His eyes were staring at my chest. The expression on his face was blank. And I didn’t buy it one bit.
I really don’t know how I had the presence of mind in the middle of non-stop convulsive episodes and a struggle to breathe to ask him for some privacy. He paused for a moment then looked up at me. “Of course,” he said or something similar and handed me the gown. He pulled the hospital curtain and continued typing on the portable computer just beyond what is also called the “privacy curtain.” My beloved husband, Steve, assisted me in changing my clothing thank you very much! My dignity in an extreme moment of vulnerability was spared. Thank you Lord.
I know that this nurse is a medical professional. He has probably seen thousands of naked bodies and women a lot better endowed than yours truly. In a time of crisis, the medical professional assists a patient in changing clothes as a part of the procedures. Yeah but they are not to do so while acting in an unprofessional manner. He was not going to help me in that moment unless I was dead! Period! The rest of that visit went more cordially and more appropriately. I changed clothing on my own after the assessments and treatments were completed about four hours later, thank you very much.
Flash forward to this past Tuesday night. Mr. un-Wonderful was working the p.m. shift again in the ER and begins his nursing evaluation. I cringe. This time it was a petite, blonde nurse co-worker who asked me to donn a hospital gown. The dude was within arm’s reach of the gurney upon which I am lying. I felt his eyes upon me. In that moment, shaking violently with convulsive episodes and struggling to breathe, I was glad that I had been trained as an occupational therapist and muttered as much. As such I know more ways to dress and undress than the average person with virtually any disability that you can imagine. I laid the gown over my clothing, covering my personhood, and struggled then succeeded to doff my own clothing and get into the approved garb. Steve might have helped some; I don’t know as my eyes were closed. The nurse wasn’t happy but I was. And in doing my own thingy, I remained true to myself.
The rest of the ER visit went as they usually do. After about 750 cc of fluids, IV Rocephin, and a shot of Morphine (my first ever!) I was feeling better. While the second bag of IV fluids diminished the severity of the episodes, the tremulous part of the episodes didn’t stop until after the Rocephin. And that improvement lasted for about a day with barely a tic attack here and there. Yeah God!
Now I am in the aftermath of trying to decide what to do. The prescription Keflex (same cephalosporin drug class as Rocephin) has begun irritating my stomach. While there were findings of a urinary tract infection in the ER, the urine culture was negative. There are still fewer and less intense episodes overall: the hell that plagues my life and keeps me clinging to the Cross of Christ for hours every day. My Doc says to stop the Keflex. I held the herbal Biocidin (anti-microbial) after the ER visit to avoid an interaction with the new prescription drug. What shall I do now? Hmmmmmmm.
I know what my gut is telling me to do: be true to myself. I will pray for the Lord to guide my very wise husband and me. I will strive to be respectful to those trying to care for me with as much courtesy as I can muster in any given situation while protecting my own privacy and integrity when it is all that I have. In due time we will figure all of this out and be much better for the journey the Lord has allowed for His purposes and our good. Of this I am still sure.
And if anyone tries to tear down my alma matter, Mott High School and the mighty Marauders, well then I will be “true to my school” as well. “Go team,” I will shout on high! Lord willing, we are going to win! JJ
Jesus is for the Wounded 
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