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

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