finding hope – Jesus is for the Wounded

Not just another day

Published on December 12, 2016December 12, 2016 by Jesus is for the WoundedLeave a comment

In this moment I feel quite normal. I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off. You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here? Here’s what I mean:

Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
Expenses beyond belief take away tremendous resources intended for the future: a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day. I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes. This past weekend I missed the lovely snow softly falling outside our bedroom window: our first major snowfall in the Midwest. I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow! If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks. Those episodes with respective recovery periods totaled about 15 hours today alone. Lord have mercy!

This is no where near normal. Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy. I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic. One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday. Somehow I did get some Christmas cards ready-to-go however! Wow. That is simply amazing.

Please forgive me that my tone is angry tonight. I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me. There are new problems with which to contend. Tonight I am in survival mode. It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning: an expensive treatment of merit I seriously question. Chronic Lyme disease? Heavy metal toxicity? Which one is it already?! Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago? Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . . At least my back is feeling some better though. Hooray!

So here’s to Christmas cards getting together and less back pain. I have a roof over my head and food in the frig to munch on shortly. My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so. Well there ya go. Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader. Thank you. Here’s a cartoon for you. You rock! JJ

bedbugs

Treatment Update

Published on November 23, 2015November 24, 2015 by Jesus is for the WoundedLeave a comment

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter. If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down. But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied. Ha! I would love for my personal scale of symptoms to be at zero. I would love for the intangibles wreaking havoc in my life to be less than nothing as well. But that is just not how it is. This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day. That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity: about 3 days each week. That stinks. I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living. Steve had to physically care for me (from toileting to feeding) about four times each week. This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens. An occasional meal out with Steve has ceased. There even was a blow-up with my Doc in which he suggested I might work with someone else. He admitted that he doesn’t know what to do. Fine. But who else would that be?

So here is my status:

Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well. Flare of systemic Candida is one possibility.
Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
Social isolation continues to be a problem. I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive. There are often episodes after eating and I do not know why.
Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome. I bring my own sheets and graciously they avoid fragrances around me. They are saints!
Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days. Recent exceptions: two wakes!
Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile. Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well! Oy vey.

So now my pity party is over and I have nothing left to say. I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle. Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief. My husband Steve carries the burden of all of this in his own way. He is a saint and my hero. Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going. Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes. Yeah God. However I am very stressed about the upcoming holidays. Maybe there will be a “Christmas miracle” at our house too? Lord willing, the numbers in my life will improve in a positive direction. In the meantime I will be hanging tough. It’s the best I can do. JJ

senior numbers

Obedience

Published on July 28, 2015July 29, 2015 by Jesus is for the WoundedLeave a comment

Obedience is one of those words like “discipline.” Not popular either one of them, yet both separate the whining cry babies from the mature adults amongst us. For believers in Jesus Christ, obedience matures our faith and transforms us into the image of Christ (a work never completed during our lifetimes). In our humanity our flesh tugs at us to rebel or be tempted in directions other than the leading of the Holy Spirit. But by focusing on His incredible gift of grace, studying His holy Word, and submitting to the leading of the Holy Spirit we will end in a better place for sure. I have seen it in my own life and in the lives of others. His will is best. His timing is best. Why? Because He loves us and because He is God!

These thoughts came to me after reading an interview of Ravi Zacharias in the RZIM Summer 2015 newsletter and listening to a message by Pastor Paul Mowery of Harvest Fellowship in Leo, Indiana. At the close of his message on Romans 11, Pastor Paul encourages us to “be about worship,” praising His great name for having mercy on us as recipients of the Lord’s grace. We are not to dwell on what each of us may have done that draws attention to ourselves. We are to be about Him: worshipping our Father God.

Lately I am struggling with these themes. Many of my posts here have tried to pull something meaningful out of the challenges of a wretched illness. As the days wear on with the setbacks of late, I have found myself literally screaming out my anger at God with the wails that accompany the convulsive seizures. “Why do you hate me?” Oh yeah, it’s bad. Even my beloved Steve who has been at my side during a fair amount of this hell admits his anger at God. And we are convinced that this is an o.k. thing to do. It is not an o.k. place to stay, however. And it is certainly not an acceptable attitude to act upon.

You simply cannot be angry at someone whom you do not love dearly. Such is our dilemma. We both love the Lord, Jesus Christ, and are humbled, grateful for His mercies in each of our lives. We have so much goodness between us! We are grateful for so much! And in our humanity we are broken and don’t like the brokenness. Way down deep we are hurting and it is this hurt that fuels the anger. Admitting this will be the way out, the way back to fellowship, the discipline that will bring obedience, the song of worship yet to come . . .

⁷So, as the Holy Spirit says:

“Today, if you hear his voice,
⁸ do not harden your hearts
as you did in the rebellion,
during the time of testing in the wilderness, (Hebrews 3)

***********

Therefore, holy brothers and sisters, who share in the heavenly calling, fix your thoughts on Jesus, whom we acknowledge as our apostle and high priest. ²He was faithful to the one who appointed him, just as Moses was faithful in all God’s house. ³Jesus has been found worthy of greater honor than Moses, just as the builder of a house has greater honor than the house itself. ⁴For every house is built by someone, but God is the builder of everything. (Hebrews 3)

*****************

⁶being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. (Philippians 1)

Today with the faith of a mustard seed (that I understand is rich in nutrients of which I am needing anyways!) I will choose to honor and worship the Lord, my King. He has built this frame in which I dwell and within it dwells the Holy Spirit. Broken or not, it is the vessel from which I will praise His name all of my days. I lay my angst on His mighty throne of grace, with great expectation of His promise to redeem it for His glory.

May He be glorified in all. My Jesus. My all in all. Worthy of our praise. Worthy is this Lamb of God! JJ

The Night Watch

Published on June 23, 2015June 23, 2015 by Jesus is for the WoundedLeave a comment

And so the night watch begins

As my beloved tucks himself part way under the covers, the cool air circulates around him and our home.

He looks so peaceful as he collapses into bed,

Having worked the day long and again this evening to make things right with our world.

The pup slumbers on the floor behind me

With her own watchful eye as the big storm rumbles outside in the darkness;

Another night begins and I am hungry

The wretched episode and weathering inside my own body now behind me once again.

It’s a strange life, that is clear:

The promise of new treatments,
my meager attempts to go on . . .

Let me pretend I am doing something worthwhile

When my world stops shaking and I find you here, Gentle Reader, ready to make sense of it all.

Sometimes there is no sense to be made

We simply endure, do our due diligence to survive:

Touching something meaningful when the opportunity comes our way

Then letting it all go to the escape of sleep whether by night or by the dawn cometh soon.

Perhaps this night will bring fruitfulness

Maybe I’ll be able to write something of worth?

There is certainly much to do alone here with you as the keys light up and my mind slowly turns on;

My Lord is here with me so something good, something meaningful might happen yet this evening!

Since I cannot be sure but the time will pass anyways,

I better get something to eat before “dinner” slides into breakfast, hunger into weakness

Then maybe my brain will come back online too. If this is to be my shift I better get to my assigned duties of late —

If I am to be awake, the most of it I shall make again and again. Who knows, maybe something good may be too?

Yes, something good may be too. JJ

The moments that matter

Published on May 27, 2015 by Jesus is for the WoundedLeave a comment

When things are not right or even worse

We cry out to the air and wonder, “who is there?”

“Can anyone hear me on my bed of sorrow?”

“How long will this go on, how long?”

Oh the angst for enduring what simply should not be . . .

I could bemoan much pain in my heart this day:

From my spirit through my tender frame.

But why? What will I gain by wallowing here?

As I listen to a friend who sounds like me over the waves,

I hear wisdom that comes with her years.

She doth declare that in her own time of prayer

The Lord spoke to her so gently.

In all of those times of suffering,

When surely no one cared He said,

“I was there with you.”

And her heart was full, no place untouched.

So today let’s heed this wisdom

Should we, too seek and hear His voice.

Don’t just want for the pain to end.

Reach into the moment to His love so grand.

Find people with mercy for the darkness of our lives

For we all have a burden to carry, each one.

And let us come together in prayer, in fellowship, in praise.

But most importantly

Kneel at the throne of grace often

In adoration of the Person who sees you always.

For Jesus loves you always.

And turn these into moments that matter for all time.

They will be sweet, and soften the burdens we will endure.

We can go on when held by His hand.

Yes, we can indeed.

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