He knew

Still in shock from the news, with tears coming forth without notice

I grieve the sudden death of my brother and all that it means.

Where do I begin to tell the story of his life and mine intertwined?

I just can’t write very well right now.

One dynamic is clear though.

Just before he died, he had come to know and convey despite horrific suffering

That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.

I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.

With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.

Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.

I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.

Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.

Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,

Heyyyyy Mikey! I love you. JJ

Never Give Up

The pattern has repeated itself so many times that I do not know why, in my humanity, that I am still here. There must be a God.

When suffering exceeds the limits of the human frame, or so it seems, then there must be more holding that person together. There must be a God.

Satan will use every and any negative emotion, event, infirmity, mental game, situation, deficit or even excess, pain, memory, experience, high or low to attempt to separate us from our Creator. When he ultimately fails, we know there must be a God.

Our worth has little to do with what others think, do, or say once we come to know Who knew us from our first moment of life. As this transcendence to seeking others to seeking God becomes real, we will understand that God has a personal form.

What that personal God shows us in His mercy and grace, speaks to our hearts in a way we can know and feel, so that we respond in submission and an eternal embrace. The love and acceptance you will find therein comes from Jesus Christ. He becomes not only THE God but YOUR God.

We are stewards of what happens to us just like the stuff that is given to us to use in our lifetimes. And if your journey like mine has included chronic illness, we still have a stewardship responsibility to use what has been allowed in our lives for some greater good. Yes, even the bad stuff. Use it to point others to the hope you have in Christ. What has He done for you? For what are you grateful? How did you overcome the grave marker of despair? How did you come to understand that the Lord is not Santa Claus and that bad things happen to good people in a fallen, imperfect world? And how did you become o.k. with all of that?

So what then about the meme above? What if others judge you anyways no matter your “testimony,” mock you, and really don’t care about what message you have to convey? You have to live your life anyways in concert with the tri-une God who will never leave you or forsake you. What He thinks is what matters most! His Holy Spirit will guide you along the way, take your prayers to the Father and let Him help you to know that Jesus Christ is real and really God. Oh and especially reassuring is that He will make all things right one day, maybe soon.

I write these thoughts as I sense gradual breakthrough coming in my battle over a horrific illness these past 8 years. Improvements are lasting more than a day. Treatments are starting to work and I can do some things that I enjoy at least one day per week. Sleeping is more restful for at least one, 4-hour segment with at least one of these during the nighttime where it belongs. The convulsive episodes are more consistently less intense, shorter, and sparing of at least one day per week. I am somewhat less reactive to more types of noxious sensory stimuli. Progress is not perfection but I gotta shout out that this time for me there are clear improvements in my life as a whole.

I knew a young bride some years ago as her wedding got closer, who faced the frequent harassment of an overbearing mother-in-law. Her own mother taught her a simple technique of taking the verbal assault as if they were splashes of water. The young lady learned to let those splashes of water run off of her like water on a ducks back, exclaiming in her thoughts, “QUACK! QUACK!” The little internal laugh of such a silly technique has actually helped me shed the critical remarks of others many, many times. With the COVID-19 pandemic, I have had several folks claim my conservative views were due to my health problems. No one cares about my Master’s degree nor extensive work experience in the health care field. I get shot down as one of those with a “compromised immune system,” probably o.k. to let go, to get sick, to die. Seriously! Or I am not someone whose opinion counts about anything important because I am not important. And that is a LIE. QUACK! QUACK!

Just don’t give up Gentle Reader, k? No matter what gets thrown at you or thrown against the walls around you, keep going. Lean on the Lord as the person of Jesus Christ to provide supernatural strength and wisdom. Dig into His Word if only for one verse at a time. Cling to it like a lifeline! These are crazy times indeed. Regardless the God of the universe has overcome it all!

Belief in the Lord Jesus Christ may just change more than your own life. JJ

1 John 5:4

For whatever is born of God overcomes the world; and this is the victory that has overcome the world—our faith.

But the old friend has no name

My hope went underground when the testing described in my last post revealed nothing of value.  I was crushed.  My beloved hubby had to take part of a day off of work and I had to take two drugs to be able to tolerate the contrast dye.  My doctor sent over new orders to the hospital on the morning of the test, creating further complications.  That new test was not yet authorized by my insurance company.  So would I have to come back and take more drugs, Steve take more time off of work when both tests could be done that day within minutes?  What shall we do?  The radiology staff nor us knew what to do.

We decided that since I do have a secondary insurance, to proceed with both the CT angiogram of the neck and the CT angiogram of the head that day.  The views would be with my head and neck in a neutral position, not in neck extension (which is the position that triggers convulsive episodes).  So I decided to lie on the exam table with my neck partially extended.  True to form, soon after they pushed the iodine contrast dye into my veins a tic then seizure attack erupted!  I couldn’t speak.  Steve let them know the course that these things take so the staff lifted me off the treatment table, onto a gurney, and into an empty room in the adjacent MRI suites.  There we were in the dark until my personal hell decided to stop.  (See here if you haven’t seen it yet.)  Steve helped me to the bathroom via wheelchair, the tech wheeled me out to the exit of the hospital, and we were on our way home.  Somehow I cleaned up once home and got myself to bed to sleep off the drugs for the next 6 hours!  The stress, the drugs in my body diminished thereafter.  All there was left to do was deal with the trauma of what had happened and wait for the test results . . .  No problem, right?

What followed represents the good and the bad of the patient having access to her own test results through the electronic medical record mandated by the Affordable Care Act.  I got my test results 3 WEEKS before the Doctor appointment scheduled to review them! The test was on a Friday and on Tuesday I was reading the radiology reports.  I was crushed.  There were no vascular anomalies that would explain why tipping my head backwards, certain chiropractic adjustments, sleeping on my left side, and a host of other identifiable kinesio/sensory stimuli trigger violent convulsive episodes.   Further, the question remained as to why these episodes are continuing, albeit of less intensity and duration overall, 6 months after treatment with specialized dental appliances?  This treatment brought me an 80% reduction in seizure attacks.  But after chiropractic treatment resumed, that number started to go down:  the episodes had started to increase again.  The “old friend” has returneth but still has no name . . . no cause.

In a future post, I may disclose the profound effect of this dead end in my seven years of battling a serious illness.  Last week after yet another difficult medical process revealed no answers, I really wanted to die.  Within a day that feeling changed and I continued on with my activities of daily living, some volunteer projects, and prepared to attend a women’s retreat within a few more days.  The time away helped some.  I don’t want to die I just don’t know really how to live this way anymore.  There may be some clues in the test results of what to focus on next related to a thyroid condition — or maybe not.  My veracious researching a cause, a cure has come to a screeching halt.  Right now is the time for me to dwell in the eternal space of my Savior, Jesus Christ and lie this illness at the foot of His Cross.  The lies of Satan and his tools of discouragement can go to hell with him, period.

Can’t say much more than that right now.  Tomorrow I need to be up and energetic at an event I thought I could volunteer at in preparation for another project of greater interest to me.  We’ll see how it goes.  My alarm is set.  But the get up and go, the drive in my heart is more asleep than I am at the moment.

Maybe something good will happen soon?  I’ll letcha know if it does, Gentle Reader.  You are always on my heart and the first to know as usual, k?  JJ

The Turning Point

When you start to leave hell, it’s important to take stock of where you have been and where you are then leave all of your baggage at the turning point.

Hi Gentle Reader.  This is my gentle wisdom to you as I gratefully and graciously turn the corner after 3 years of wretched illness.  Much grieving has already gone before me and my beloved Steve.  Much loss has already pruned that which is no longer critical to our lives.  Much angst at our Lord’s merciful throne of grace has established Who is most important in our lives and that He was leading us through all of this.  Much dashing of hopes in false turning points along the way has produced endurance for what appears to be the last leg of this race.  And yes, much joy has returned despite the jagged line that is normal in the recovery phase.  That’s o.k.  WE HAVE HOPE!!!

Briefly, I am experiencing 50% improvement in my health after beginning treatment for very high mercury levels.  This process will require a slow titration of chelating agents, detoxification with the gentlest of methods, much rest, and humility.  Humility?  Oh yeah, humility to stay watchful for the Lord’s leading each step of the way and to continue to lean on Him as my own strength returns.  My husband has proven himself again and again as the Lord’s instrument, a capable spiritual leader in my life.  I have many examples in my life how pride has gone before my downfall, you know (Proverbs 16:18).  I don’t want any more “slips and trips” anymore particularly of my own creation!

As I have started to feel better and do more my devotional time has diminished.  This is not good.  So in response to this turning point, I aim to spend more time in the Word than I have in the past when feeling reasonably well.  I aim to keep practicing gratitude:  holding lightly any material blessings, fruits of my labors, times of fellowship and the like.  I aim to smile more and complain less.  After all, I faced death many, many times!  These days the gift of  time and space, my talents and gifts, and the people/places/things around me are a bonus.  I have never believed that I deserved either the good or bad things that have happened in my life.  They simply “are.”  They simply “were.”  It is with great wonder that I aim to explore each day for what may come.

How can anyone really see beyond a turning point anyways when he or she has never been on a given journey before?  If we worry about it then we have chosen to believe a lie.  No one knows the future so why make up something bad?  Why not something good?  I aim to squelch what is false with what is true from God’s Word:

33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.  (Matthew 6)

Nuff said.  Steve and I enjoyed a long walk in the rain this evening with our pup.  This picture portrays my heart inside.  God is good.  All the time.  God is good.  JJ

God is good.  All the time.  God is good.
God is good. All the time. God is good.

 

 

When death is no longer an option

Who was it who said to “start with the end in mind?”

 

Well the “end” of everything in life as we know it will not be death per se but the second coming of our Lord, Jesus Christ. He will be bringing about the Great Tribulation, reign on Earth for 1,000 years, bring about the death of Satan and the world as we know it, and bring those who believe in Him to the New Jerusalem.  There we will reign forever with the One True God. I can’t wait!

 

And yet wait we must as it is not the time for His return. So working back from this end I will examine a few personal challenges the current day . . .

 

Brother Mike

Incredibly with a remaining part of one of two carotid arteries, my brother is making slow progress (after a massive stroke two weeks ago). As it turns out his progress may still not be enough to keep him longer in a rehabilitation facility. Enter here the plight of the uninsured. Decisions about his care will be made by a team of therapists who are required on Wednesday to make an “educated guess” as to his the outcome of his treatment 2-3 weeks from now. Healthcare policy largely mandated by the US government requires them to make this determination. Today the Lord led me in “buying” him 3 more days after negotiating with the Physiatrist on Michael’s unit. Go Sister Bear, occupational therapist.

 

Overall it looks like Mike will be discharged soon to a nursing home for placement and not further rehabilitation. This would be sad. His beloved fiancé, Lisa, is doing the best she can to juggle her own responsibilities, visit Mike at the hospital an hour away from their home, and complete paperwork/phone calls/research/etc. needed for his discharge planning. He would not likely receive therapy services thereafter until his Medicaid kicks in; when it does start the amount for which he is eligible could be limited. I just hope they get him the proper wheelchair, feeding instructions, and do more than keep him “clean and dry” in a long term care facility. I don’t have high hopes for this at the moment.

 

In time perhaps Michael will be able to receive skilled therapy services and return home. In time perhaps Michael’s eligibility for VeteransAdministration and community services will be determined. To return home he will need to be safe enough to be left home alone when Lisa is at work while she graciously continues to provide for both of their needs in addition to her 13 year old son. We are all praying for them at this incredibly stressful time in their lives. My burden from afar (3 hours by car) is light by comparison. Sure I am making a few phone calls, found a family member with a commode, and am working on locating a walker but that is small compared to his incredible care needs. I do pray that some additional resources appear soon . . .

 

Sister Julie

This past weekend was a tale of two extremes got me. I started drinking Bulletproof coffee this past Friday: Freshly ground-and-brewed, mycotoxin-free, Swiss water decaffeinated coffee with ghee (butter) and MCT (derivative of coconut) oil. Everything gets blended in our Vitamix for a frothy hot drink that is quite good. (Remember, I am used to consuming unusual foods these days!)   I had also begun taking a special formulation of B vitamins from Dr. Amy Yasko’s website to support some nutrigenomic issues. (Since the Functional Medicine MD set me adrift last week I struck out on my own for new solutions.) Saturday was an incredible day: waking up without seizures and enough energy to get showered and dressed before 10:00 a.m. just doesn’t happen for me! By 10:30 a.m. I had joined my hubby in cleaning our garage! Four hours later we were at a logical stopping point with the project nearly completed. We will recycle, discard, or sell either online or at a garage sale a goodly amount of items we no longer need. Ahhhh. Feels good.

 

Then comes the other extreme: almost 2 days with intermittent seizure attacks and bedrest. Crap. I guess I should have worn a mask when cleaning the garage? Maybe I shouldn’t have increased the MCT oil to twice per day? Or maybe the greatly increased activity level was just too much for this tender frame? Crap again. This is such a high price to pay for just taking care of our home. I enjoyed my time working with Steve so very much. I love doing projects with him! It had been soooooo long since our last big deal together . . . except for maybe driving up to Michigan to see Mike 2 weeks ago. Yeah that one took its toll on me as well. Crap, crap, crap.

 

So the worst case scenario for my brother is another stroke or even death. Since he appears to be stabilizing and improving I can set those fearful thoughts aside. I am quite confused about the Lord’s plan for all of this yet I choose to trust Him anyways. And as for my own illness, well, I guess the moments of improvement give me hope for my own recovery someday too.

 

On Sunday I decided to donn my firearm when Steve was selling some items from our home. He had opted to have the buyers meet us at the house. We took some precautions and everything worked out fine. His son, Daniel made out like a bandit (!) and we are pleased to have made it happen for him. But as that 380 pistol passed from my hand to its hidden resting place later that afternoon, I had to pause for a moment. At another time in my life it would have been dangerous for me to have a firearm in my possession. I had not yet learned how to shoot a gun, been taught gun safety, secured a carry permit, or decided for sure that life is worth living no matter what the current crisis.

 

You see I have faced overwhelming stressors in my life many, many times before. One time I had to ask a boyfriend to stay with me because the emotional pain that I was enduring was so great that I did not trust myself with my own life. I feared what I might do if I were to be left home alone. Flash forward about 15 years and that trust was tested once again. Gratefully eight years later, the overwhelming trauma of painful, daily seizure attacks, my brother’s stroke, and so much more is met with a solid faith in the Lord Jesus Christ and His plan for our lives. He is faithful. I trust in His power, His sovereignty over my fear, my pain, my doubt. Overcoming the traumas of the past by the grace of God taught me that. My firearm is for protection and nothing else.

 

When in doubt, I often start with the end in mind. I have always been a future-oriented person which I consider to be both a quality of leadership and a source of considerable anxiety! Perhaps my writings could talk a little less about my vulnerability and a little more about the Hero leading my heart PERIOD. With the God of the universe at the helm of my life I have nothing to fear, nothing to doubt. I will be able to endure the stress and the stress will be less with my hands off the “trigger” that represents a need for action at the wrong time. To wait, to rest and languish in His loving care helps me transcend the suffering. He has held me close in the comfort of His wings in the past and holds me close in the present as well. Many folks yearn to feel His presence. Hey, I get to feel it every day! He makes Himself real to me every single day.

 

Lastly, the greatest manifestation of darkness in this life is death. One day all too soon His glory will replace the darkness with His consuming light. All things will be made new and we who believe will reign with Him forever! My brother and I will be made whole to love and serve our great God. Wow! So I pray:  Lord, help me to live this truth in today with hope and shining Your light for all to see. Thank You for being here with us in our journeys. If the load may be lighter, please bless us with Your healing grace and mercy. Until then, You are our King and praise be Your name, Emmanuel.   Love you, Just Julie