This trip was much like any other in terms of the massive preparation it takes to go camping! There is always lots of kayak paddling gear to gather, packing, meal preparation for 2 distinct dietary requirements, mega supplements and meds to pop into pill boxes, “just in case” remedies to pack, and so on. The miles go quickly as we travel most of the day and into the night, with destinations generally east of the Mississippi. I’m especially grateful for the opportunity to catch up on the little things with my beloved Steve as he drives us along since it’s crazy busy getting everything else done before we leave! Add the last minute deliveries of my hubby’s side business as a Stellar Kayak rep and you will see how we usually get about 4 hours of sleep beforehand but alas, I’ll let him tell that story!
Our German shepherd got sick after taking herself for a swim in Lake Michigan when delivering a kayak on our way home. Two vent covers on the Camplite either blew off or severely cracked, respectively, on our way from Indiana to Wisconsin requiring a series of duct tape-style repairs. The placement of water and electrical outlets on opposite sides of the campsite required a creative workaround in the dark when we arrived at our destination. Sweltering heat and humidity nearly wilted me into a pile of mush until we found shade underneath the belly of a DC3 (airplane) on display along the air strip at the EAA AirAdventure. In addition, my usual pattern of nightly/morning convulsive spells continued every night and morning yet were no worse considering the increased activity level and exposures related to all of our activities. Two friends flaked on meeting us for dinner during our stay. Bummer dude.
But wait. There’s more! We ran out of propane and overflowed our gray water tank at the 2-day mark. A mysterious water spot left us sleeping on the bare mattress cover our last night that might be condensation outsmarting the air conditioner + dehumidifier combination we employed. And lastly, the rain chased us home a day early, allowing us to deliver the aforementioned kayak for Steve’s customer who was unable to catch a flight to meet us to pick it up. That became the reason for a 2-hour side trip to Door County from Oshkosh and the fateful swim for our pup, Elle. But hey, the landscaped gardens of their lake home were better than the magazine photos I had brought with me to pass the time . . .
Enjoying cool shade under a DC3
So when you decide to take up camping you also decide to take up flying by the seat of your pants! Little goes as planned! We have come to expect always arriving later than expected to our destinations, spending more on gasoline than meals/souvenirs/camping reservations, and getting out the tools or duct tape at some point before returning home. If you ask me, it makes the trip more fun! I’ll take the crazy stuff of life on the road any day to the ravages of battling a serious illness and am grateful that I get to do so with my River Bear in the Tin Can Ranch a few times each year. Now that the 9 loads of laundry are done, I just have to clean the CampLite. Soon I’ll be ready to pop the question again like the old Microsoft commercials use to say,
Where do you want to go today?
Maybe one day I’ll meet you on the road Gentle Reader. Please bring your own duct tape, just in case! JJ
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
There’s no pretending when the story gets bizarre. I mean who could make this stuff up?
As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection. Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function. While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it. This time we can call it a “herxheimer” (die-off) reaction and temporary! I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:
Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
Pharmaceutical grade supplements including an iodine protocol.
A switch from filtered water to non-fluoridated, purified bottled water.
Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
Mineral baths and celtic sea salt supplementation.
Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
A fabulous support system.
Rest. Gardening when possible. Rest.
Unfortunately the bills are piling up as Steve and I go along. At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing. For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads. Our prayers, your prayers are being answered. Thank you for praying. Praise the Lord!
Thank you Jesus for the hope we have in you and that I can see in my life. And please bless my faithful husband, Steve! Lord willing, I am going to get well! :JJ
Psalm 20:7 (NIV)
7 Some trust in chariots and some in horses, but we trust in the name of the Lord our God.
Jesus is for the Wounded 
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