Walk softly in the moment

Said goodbye to a group I started on Facebook that grew to well over 3,000 people, my Co-Admin and I helping them with mercury toxicity as best as we can. My leave-taking occurred over a period of weeks and ended yesterday. It was time to free up some energy for other projects. Still, you have meant so much to me.

Experiencing fewer serious convulsive episodes lately after embarking on aggressive treatment for systemic Candida albicans plus flares of herpes simplex, and herpes zoster. The ramp up was very difficult yet, coupled with another treatment for a chronic MARCONs infection in my sinuses, it appears the body burden of infection is going down. Along with it there are at least 2 days every week for the past 5 weeks without convulsive episodes or tics! Only one severe episode every 5 days! Having more moments of relative freedom means so much to me after 9 years trapped in a prison cell with fear-of-episodes: avoiding triggers seemingly present in every aspect of living. Thousands of convulsive episodes nearly destroyed my health, my life. Now the the beatings have lifted some.

Simple changes in the timing of compounded hormone creams coupled with specific pharmaceutical grade supplements to help regulate cortisol levels took about a month to affect my sleep-wake cycle. This all came together rather casually when my Family Doctor reviewed the treatments of my Integrative Medicine Doctor. Both of them contributed to a significant change and so did I. I ventured out to find yet another recommended supplement and braved taking it when literally hundreds of treatments in the past have resulted in disaster. The Lord guided me in tweaking the dosing. And now most nights I sleep at least 5 hours during the normal time of night. This means so much to Steve and me.

A quagmire of new dental issues furthered my belief that not much in the medical realm is simple for me anymore. A simple cavity took a total of 4 dental visits to resolve, 2 with conscious sedation and all with considerable suffering, serious side effects. The latter included another flare-up of shingles! But now the insurance coverage for ongoing treatment of HHV1 and HHV3 is better and I am tolerating the dosing most of the time. So what if I have to soak the dye off of the tablet so it doesn’t cause a headache. I digress. PTL, He helped me figure it out. After my mouth fully heals and I can return to regular wearing of my specialized dental appliance, I should be stable once again. No more pureed or chopped food. To be stable means a lot to me.

The diagnosis of Occipital Neuralgia dovetailed multiple cranial nerve issues (vagus, trigeminal, glossopharygeal) that result in convulsive episodes. This discovery has led to new treatment strategies that work for me. No, it’s not fun to sleep with an ice wrap around my head at night but if it largely prevents a seizure attack episode falling asleep then I WILL DO IT! Nerve block injections tomorrow have the possibility of confirming this dynamic. It means so much to me to have tools to help my symptoms, to lessen my suffering. Very sparing use of new medications has rescued me on my worst days. Over the past 5 months, it only took a failed visit to the Cleveland Clinic and four visits to the professionals at a local pain management clinic that actually listen to me to figure it all out. At long last, I’ve got tools that work to lessen pain! Less pain means fewer convulsive episodes. Who knew?

The difference between my self esteem getting bruised from chronic illness and graciously seeing the Lord’s hand in delivering me from the hardest parts of chronic illness often lies in the hands of nurses at various medical facilities. They run these places. When a nurse actually delivers care and not just a procedure or worse yet ABUSE, I can endure much. The nurse who shamed me, blamed me for things things at the infusion clinic yesterday that were not my responsibility was out of line. I wept once they pulled the curtain to start my IV fluids. I left there in a weakened state albeit made worse with the needle-stick pain of the Huber needle coming out of the infusa-port in my chest wall. I sat in an outer lobby and cried again before emotionally limping as I left the building to come home. I really hate this stuff. I don’t want to be there. Insurance changes then other problems required me to return to a hospital setting instead of continuing in home health. You have to do what they tell you to do much of the time no matter what it means to you.

We have come into a time of year that means the most to me. It’s springtime. The temperature outside is in the 50s and it’s the same to me as a warm sunny day if I can get dirt underneath my fingernails in a garden. Less severe illness symptoms parts of days a couple of days per week means that I can push myself to do more than my basic self care. And so I have. No one needs to counsel or push me to get up and get moving. If I feel better, activity follows. I don’t want to be sick anymore. I’ve learned a lot but never “got anything” out of being sick. I hate and hated being sick but it happened anyways. The Lord has seen me through it all and is leading me into some new projects. These activities stretch me greatly and increase my pain level temporarily. They also increase my interaction with other people, strengthen my broken body, stimulate my mental capacity, and add value to our home and hopefully the lives of others too. By the grace of God I have earned the title of Extension Master Gardner. By the grace of God he has called me to serve others with these abilities so I have chosen to step out in faith by hosting some community gardening classes and even repairs in our own landscape. Sometimes I have to take things an hour at a time. Steve helps, thankfully! I actually get to check things off of my To Do list! Praise the Lord!

We have no idea what tomorrow will bring nor how long it will stick around. When it’s bad news we all go through a process of questioning: why me? why now? What am I supposed to do to get rid of this or perhaps worse yet, deal with this? I submit to you that the only Person to ask these questions to is the Author of life, the Lord, Jesus Christ. He is the beginning and the end, all that the heart seeks to be fulfilled despite living in a fallen, satanic world. He has a plan and a purpose for each of our lives. Every detail matters and is ordained in His crafting of our days, the days of the entire world and its people. You matter. I matter. And that worth does not change based upon our circumstances, thoughts, or other people. No one wearing a badge can take away your ordained purpose on this earth, on this side of the grave. Even if you die, your life will have made an impact somewhere to someone. And if you believe in the sacrifice of Jesus Christ on the Cross, you will live on in paradise where everything is perfect, well, good, and beautiful. Thankfully we get glimpses of heaven here on earth, especially in the garden where His fingerprints color the fauna around us.

One of the most compelling truths I have learned enduring serious illness for nearly a decade is to walk softly when considering the hardest questions of life. Nothing is wasted in a life surrendered to the Lord, a life redeemed by the Lord. Everything will be alright in due time. We can bear way more than we think we can. We pray for the Lord to help us when we cannot see or trust, when the pain is too great. He will bless us. And further there is always something for which to be grateful. Even during a pandemic. Even during tyrannical events in society. Even when our relationships or health or finances suffer a seemingly fatal blow. We are not dead yet! We are also never alone. If we but walk softly as we consider the days of our lives then in due time, our precious Savior will reveal Himself to us. The seizure of our spirits will not last forever, Gentle Reader. One day we will know what it means to be truly free. JJ

The Divine covers all

Tears filled my eyes and grief my thoughts as I heard the words of a healthcare provider actually address my pain. Again. A few of her first recommendations for me seemed too risky so she called me back into the office to review my plan of care in-person. The insurance company denied a CT scan at this stage; I was exasperated. I had so much hope for relief. At least one of the tools the PA recommended during the first visit actually ended a migraine that had rendered me useless about a week ago. And this past Friday, she offered two more tools for my care. Really? There are more things to try?

For the second time visiting their office, I was overcome with the grief and traumas of my journey through serious illness. No one had looked closely at the role of headaches in the daily convulsive episodes that have created much suffering for me for NINE YEARS. Only 2 months ago I finally realized that many of the headaches are migraines. The so-called experts at the Headache Clinic at a regional medical center recently discounted me, told me to breathe deeply, and sent me off in a direction already worn from false starts in the past. The burden of suffering through many traumatic incidents recounted in this blog came rushing back like a movie fast forwarding through a person’s life when she is drowning. Yeah, there have been a couple of near-death experiences as well.

The PA stayed with me as I wept. The Medical Assistant gave me all of the time I needed to gather my composure before leaving their office. I’d had TWO HOURS of sleep in the last day! My sunglasses and the required face mask covered my sullen eyes, tear-stained cheeks, and swollen sinuses as I prepared to leave much later after my appointment had ended. It took another 30 minutes sitting in my vehicle replenishing my soul before I could re-gather my strength to drive again.

A friend has been tough to reach by phone lately including earlier that same day. I called her again. No answer. She had wept on the phone that she was very, very sick and losing weight; she didn’t know what she was going to do. This sounded more serious than when I first met her about 2 years ago through a shared healthcare provider. G was already severely underweight. Her father died then her mother died, they sold her childhood home, then her husband died all within the past year. She has only been a widow for 3 months. Her grief must be tremendous so it’s no surprise to me that she is struggling so. I called her son for the first time since he and G were at our home 2 years ago. How is your Mom doing? We talked for awhile and he asked if I could try to visit her. I was already on the same side of town where she lived and was thinking the same thing. I often called her to go for a walk together when appointments took me near her neighborhood. Of course I would.

My hubby and I have become snobs of olive oil. Once you taste the best varieties shipped directly from Italy to a local business that specializes in olive oil, you might never go back to the store bought varieties! I consider it a healthcare product, like taking a pharmaceutical grade supplement vs a brand off the shelf of a local grocery store. It really makes a difference! Olive Twist was between the medical office and G’s home so off I went to return our used bottles and pick up our tasty treasures. For some reason I felt led to pick up an extra bottle so I did. We do go through it rather quickly.

I caught up with G while she was out on a walk through her neighborhood. This is quite an accomplishment for someone who sounded next to death and in light of the sub-zero temperatures and icy streets in the neighborhood. To take a walk was her favorite thing to do. “Hey lady, whatcha doing out here in the cold?” I parked the truck at her house and braced myself to meet up with her out on those icy streets myself. The hug felt good for both of us when I reached her.

A couple of things transpired in the next hour that prompted me to write today. By the time our visit was ended, G had confided that the best tool she had to calm her upset digestive system was various types of vegetable oils. Little did she know that she would find a bottle of the best olive oil available locally sitting next to her front door by the time we got back to her house! The Lord knew your need G. And the Lord provided for it to be met on Friday. But that’s not all.

This time when G shared her fears, medical worries, “physical” feelings, and isolation over and over again (unlike our more newsy conversations just prior to Christmas), I felt led to ask her about her “emotional” feelings. Sad. Hopeless. Afraid. “I just don’t know what I am going to do?” she vented. Then we heard the wail of a freight train racing by her rather swanky neighborhood. Somewhere beyond the golf course and frigid air between us, inspired only by the Holy Spirit, came to me the themes of the Fact-Faith-Feeling train of the Four Spiritual Laws booklet. This booklet describes the gift of salvation offered to everyone through belief in the sacrifice on the Cross of our Lord, Jesus Christ. The caboose holds our feelings. The passenger car holds our beliefs, our trust. The engine embodies the Lord, Jesus Christ who leads and even pulls the train along when we surrender ourselves, our caboose and put our trust in Him. She wanted this free gift. She got it. Her spiritual birthday began with a simple prayer on her front porch that day. Praise the Lord!

We prayed again before I left. When I looked into her eyes afterwards, there were tears staining her face. She had told me when we were walking that she wasn’t even able to cry lately. She felt the feelings but the tears just would not come. I said to her, “G your cheeks are wet. Feel your face.” And with a muttering of how good our God is and how much He loves her, it was time for me to leave. There was nothing left to say, nothing left to do. The Lord had both of us in the palm of His hand that afternoon and will continue to do so from this day forward. I drove home with renewed hope and strength then slept a very long time over the next day.

Never, ever lose hope Gentle Reader. Our Divine Lord and Savior, Jesus Christ is there with us in every single detail of our lives just waiting for us to cry out to Him. He cried drops of blood for our suffering. His plan of salvation turns death into life. The Divine in due time covers all. JJ

Wence come forth a glimmer of light

When someone leans in to your speaking, ready and willing to help

It is a rare moment to catalog, to stack over times of disinterest.

When it’s a healthcare professional who actually knows her stuff

Then you have a shot at individualized care not the easiest answer.

When she orders a comprehensive plan with follow-up to boot

You start to melt into the possibility of hope and actual gain.

When the topic is real, bonified pain evidenced in test after test

The story hath become believable to more than your weary soul.

When someone really looks at you and can tell you speak your truth

That signs of wear and tear are obvious; why couldn’t others see it too?

When these answers come so late in the game but alas before life is over

There just might be a chance for better days outside of your king bed retreat.

When your tears drain the sorrows of past fails and let in the glimmering light

On an hour of sleep with topical pain remedies in hand, you drive like hell with rock-n-roll on the radio doing more than you really should to celebrate the baby turn for good, answered prayers, and wings to fly on that are not your own.

Witness the goodness of God. JJ

One day the earth will warm again. Until then the light doth illuminate the possibilities.

The Aftermath

When another healthcare faux pas takes the life out of my weary stride

It’s easy to give up or rather give in to a despair that never leaves.

Then a new day comes and I have a decision to make

Even if that day begins much later than planned.

I AM sad. No doubt legitimately so

From the treatment I received,

Or rather did not.

Siiiiiiiiiiiigh.

It’s hard.

I’m only human and in my own strength I cannot do this over and over again.

Thank the Lord that you are with me on my bed of sickness every time

Weeping over the trials, the suffering of your child

Promising that one day all will be perfectly well.

I just gotta hang on, hang tough, and trust

‘Cause the journey won’t be wasted

The rewards will be the best ever

When I see my Jesus’ face

My wings flying free.

For all eternity.

Yes indeed!

Is it enough to have overcome the dearth of trials that pain us so in this life?

That’s a question only answered with faith that comes from our Lord.

Our own strength will never be enough. The days are just too evil

Acceleratingly so Gentle Reader. Do you see it too?

Waste no more time wondering just BELIEVE

Get into your Bible right now, go, run!

Our just God’s Word will ring true

On redemption, wondrous glory

As we take rest in His grace.

Today. Join me there.

It is enough and so

Very good too.

After all.

Knees to the Grass

Humble yourself before the Lord and He will meet you there every time.

Having just whacked my shoulder with the handle of a rake, the pain seared deeply from my flesh to my soul. It is now bruised.

So cried, I did: weeping that lasted a long time. So much sorrow in my broken heart of late.

How can I go on with so many hours spent lying in bed? Seizing the last grips of life until my breathing starts again? Plans reduced then cancelled to much, much less?

The window to the neighbors’ bedroom was not far away out there in the darkness of night and my own beloved worked 2 rooms away beyond the double-paned windows

Oh how long must this sad song go on: the one that mixes grief from the death of loved ones with the pain of suffering so?

My Lord, you bestow so much goodness yet this night my heart aches for the dearth in my broken frame.

Just let it all out Gentle Julie. Your heart needs a good cleansing at the foot of my cross. For I hung there for all your sorrows with my blood dripping for your tears.

There will come a day when I will restore all that has gone before you.

There’s a period at the end of that sentence beloved one and this one too.

My love shall forever surround you, my spirit dwell within you, my angels minister for your care.

Keep seeking my face and you will find me there with you every time. I love you more than you can ever know. Just try to keep seeking and I will lead you home.

And so I shall. Oh how I long to go home! Yet weakly I shall go on . . . JJ