marriage – Page 6 – Jesus is for the Wounded

What did you learn today?

Published on November 30, 2016November 30, 2016 by Jesus is for the WoundedLeave a comment

And let ours also learn to maintain good works for necessary uses, that they be not unfruitful. Titus 3:14

I learned today that it pays to take good notes. When I had to replace a healthcare supplier within a few days (or lose my mind!), I was glad to find my notes from the research that I did at the beginning of receiving home infusions 7 months ago. Perhaps back then I should have gone with that other company instead? Oh well. I got to work with their Patient Care Coordinator this time and she is wonderful!

I learned this past week how being off from work and having less income has helped me to find inexpensive continuing education credits that I never knew existed before I got sick. Looks like NINE of the TWELVE hours required will be FREE! Yeah God! I will be able to keep my occupational therapy license one more year!

I learned this past month a deeper definition of true love as demonstrated in the life of my husband, Steve. First some background: we had to cancel a trip to see his family this past summer when his dad was in too much back pain to travel cross-country to our rendezvous point in Branson, Missouri. His mom was disappointed that the celebration of her 80th birthday was postponed until Thanksgiving. Then our trip to meet up with his family in Texas in November got cancelled when I landed in the Emergency Room five days before departure with severe back pain. I wasn’t even able to go out to dinner with Steve on Thanksgiving (which means I missed celebrating our wedding anniversary on the same day!). As you saw from my last blog, Steve’s response was simply that we were, “saving money left and right!” Well, yes and well, no. His parents are aging. Visiting them at their home in California is complicated due to my extreme sensitivities. Perhaps Steve will be making a visit early next year and when my health is more stable. In the meantime he just continues to be a wonderful loving husband. I am so grateful for his love and devotion. Often he is my “Jesus with skin on.”

I learned this past year the meaning of the phrase Carpe diem. Each little trip, each tender moment between Steve and I, each time the garden got watered or weeds got pulled were realizations of moments when I could do a little more. The numerous moments that were quite opposite just made “seizing the day,” more special. We have learned to be more spontaneous to enjoy the good graces of the Lord even when they last but an hour or two. Carpe diem baby!

I learned these past 5 years of serious illness to call upon the Lord for everything.

Proverbs 3:5-6 New International Version (NIV)

⁵Trust in the Lord with all your heart
and lean not on your own understanding;
⁶in all your ways submit to him,
and he will make your paths straight.

Whether it’s finding the money for medical treatments or getting myself up to go to the bathroom when seizing, my Lord and Savior cares for the details of my life and gets it done. He is there when I am awake in the middle of the night. He provided that relic airplane for me to sit under on a sweltering summer day so my husband could fulfill a dream at Oshkosh. My Jesus will be joining us in celebration when I become well again someday too.

And lastly, I have loved learning the value of writing Hope Beyond. It’s not quite an online journal but a way of looking from the inside out. I hope to point you, precious Gentle Reader, to more than the saga of my situation but to the glory that awaits both of us when we place our trust in the Lord, Jesus Christ. As Steve and I say in our Christmas letter this year:

No matter what our perspective may be, the most important view at Christmas (or anytime) is the one that brings us closer to the person of Jesus Christ. We stand in awe of His sacrifice for us that brings unspeakable joy, knowing Him as Lord and Savior over all. He loves His own more than words can say: the best Christmas gift of all.

Going beyond our temporal learning to the eternal love of Christ can be our gift today, next month, next year, 5 years from now, and beyond.

Gentle Reader, what do you say that you have learned? Please let me know, k? JJ

lake, couple, Christian, Lake Winnebago, Oshkosh, marriage

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Gratitude for the little big things

Published on November 25, 2016November 25, 2016 by Jesus is for the WoundedLeave a comment

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve. Happy anniversary!

And Godspeed Gentle Reader fb_img_1480031316027 . :J

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

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The full moon cometh

Published on August 22, 2016August 22, 2016 by Jesus is for the WoundedLeave a comment

It ain’t over yet . . . but we are not giving up either.

Little blue booties ring true

Published on July 10, 2016July 11, 2016 by Jesus is for the WoundedLeave a comment

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? ²⁶Look 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? ²⁷Can 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.