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

 

Looking for significance

Psalm 139 (NIV)

For the director of music. Of David. A psalm.

You have searched me, Lord, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you, Lord, know it completely. You hem me in behind and before, and you lay your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.

Where can I go from your Spirit?  Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, 10 even there your hand will guide me, your right hand will hold me fast. 11 If I say, “Surely the darkness will hide me and the light become night around me,” 12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.

13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 17 How precious to me are your thoughts,[a] God!  How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand—when I awake, I am still with you.

19 If only you, God, would slay the wicked!  Away from me, you who are bloodthirsty! 20 They speak of you with evil intent; your adversaries misuse your name. 21 Do I not hate those who hate you, Lord, and abhor those who are in rebellion against you? 22 I have nothing but hatred for them; I count them my enemies. 23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.

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

Nuff said.  JJ


Time for a change

From Family Practice Physician to Lyme Literate Medical Doctor, from Chiropractor to Obgyn, our medical doctor tries to do it all.  I have benefitted from his expertise yet I am still not well.  And when I saw the redness and exhaustion in his eyes during my appointment this evening I realized that he is not well either!

Everyone who sees this gifted physician knows his crazy schedule, his dedication to help everyone in his care, and his history of nearly dying a couple of years ago with his own debilitating illness.  We used to hear how his office conversion to the government mandated computer system was responsible for incredible stress and delays in appointment times.  For example, it was not unusual to call the office in the morning about an appointment scheduled for 10:00 a.m. and not be called in for my appointment until 4:00 p.m. or later.  Forget the ones scheduled after 3:30 p.m. as they were usually rescheduled.  For awhile about one-third of my appointments were re-scheduled, delaying receiving test results or reviewing the status of a particular medical condition for months.  Frustrating indeed.

Yet when there was an acute issue, the Doc was right on it.  When something new popped up I was sent to the hospital in another section of the medical park for labs or scans, held in the waiting room for results, and sometimes seen back in the office much later that night.  To be seen well into the evening was not an unusual occurrence.  My record was an appointment that started at 2:30 a.m.!  He had one more patient after me and had just received notice that one of his pregnant patients was going into labor.  He must have never gone home that night or morning!  Dedication had become insanity.  We talked about it during that visit.  He agreed.  I understand that some scheduling and office procedure changes were put in place for this new year.  As near as I can tell, the staff and Doc are ending their nights before midnight now.  Virtually the same story, different day.

I recently blogged about some important abnormal test results being misplaced for six months.  That has happened another time as well.  Tonight there was only enough time to go over about half of a detailed genetic cholesterol study.  He handed it to me and said, “here, you take this.”  Whaaat?  He thought the “high CBD hemp oil” that I reported was reducing the seizure attacks 40% was vitamins C, B, and D.  Er, no!  After correcting the computer’s voice recognition software two dozen times, I believe he understood what I was saying:  sitting there with my ventilation mask on to avoid seizure attacks from some mysterious exposure in the office.

Mysterious was the exposure until I asked one of the nurses about it.  I had asked before and a different nurse declined comment.  And yet tonight in her own fatigue, a long-time employee openly shared how their office has routine leaks in the ceiling throughout the summer.  The staff has complained about the musty smell and requested testing for mold spores.  Evidently the tests came back “negative.”  The nurses still battle sickness at work.  A friend of mine who is a patient there can detect the musty smell but I cannot.  I just get tic attacks sitting in the treatment room for 2 hours waiting for the Doc!  My worst episode lasted 2 1/2 hours NON-STOP began after midnight dominated by convulsions most of the time!  My husband came to pick me up around 4:00 a.m.!  I’m sure that exhaustion and stress were a factor being in the office so late that night but hey, I was sitting in a water damaged building to be seen by my doctor for mold illness!  Whaaaat?  Soon after that I started wearing a mask every visit!

I have learned so much from my brilliant Doctor.  He is a Christian man who really cares about his patients.  He has provided better care for me for six years here in this smaller Indiana town than I ever received in the large metropolitan area of Chicago.  When my health got significantly worse 2 1/2 years ago I hung in there with him, hopeful that we would find answers.  I was also unsuccessful finding another MD or clinic to address the intractable seizures, pain, etc.  Gratefully, the Lord has now led me to another clinic in Michigan with two physicians specializing in methylation issues and biotoxin (mold) illness, respectively.  After three phone consultations, extensive paperwork, and additional lab testing completed, my husband and I are preparing for my first in-person visit on March 24th.  We will stop at a lab near the clinic for additional blood work to better match Dr. Richie Shoemaker’s protocols for “Chronic Inflammatory Response Syndrome.”  My current MD and I have worked closely on Dr. Shoemaker’s protocol yet neither of us are officially trained; this led to using the wrong laboratories, incomplete test results when the samples were not processed correctly, and improper sequencing of the treatment plan.  Two very expensive medications from an out-of-state compounding pharmacy either did not work or made me much worse.  We tried!  The biotoxin illness Doc at the new clinic works closely with Dr. Shoemaker and is a Christian too.  I am encouraged.  Lyme disease is not the focus at the moment and that’s o.k.

So it’s time for a change.  I still have appointments on the books with my primary care physician as someone will need to monitor ongoing health issues not covered by the new clinic.  He has asked for copies of all of the testing and reports so I am happy to oblige.  With the Lord’s help I will continue tweaking the dose of high CBD hemp oil in hopes of reducing even further the seizure attacks and noxious symptoms that follow.  The Lord is guiding me step-by-step, including through the spiritual leadership of my beloved Steve.  I am so glad I heeded hubby’s advice and did not start seeing every expert who sounded good on the internet!  When moments are better for me, we celebrate and don’t think about the bad times.  We both see examples of how the Lord has used this season in our lives for His glory.  We are closer than ever, more in love than ever before and for that I am grateful.  I am closer to Christ than ever before as well knowing that He heard my truly desperate cries for help the night before I first started the CBD oil.  I was ready to die and it was not to be.  I was spared from further anguish and suffering, turning a corner to better things at last.

If you are suffering this day, this night:  do not give up!  There’s a blogger praying for you Gentle Reader.  More importantly the God Who created the universe knows your name, sees you, knows your pain, and gave his life so that one day your heartache would end.  Please draw near to Him and He will draw near to you.  He will never leave you or forsake you.  Everything will be worked together for good someday if you but call upon the Lord and let Him into your heart.  These statements are based upon His Word and promises that are true today and always.  The Great Physician will see you through, always my dear one.  Take care,  JJ