JJ Update

Bed bound, all of this beautiful day today.
Food is often triggering convulsive episodes so we are examining blood sugar issues with diet refinements and testing.
Had to take a steroid today to stop episodes; bad for me due to osteoporosis.
Having MRI workup in 6 days of a pancreatic cyst. It was identified 9 MONTHS AGO AND LOST IN THE FOLLOW-UP when diagnosed with hiatal hernia at that time. I found it when filing some of my medical records.
Nausea is lower after stopping a supplement that was reducing the episodes. Hard to choose between blood sugar stabilization with an unexpected side benefit of reducing episodes (with Biocidin) and the nausea it magnified. I went for less nausea hoping to figure out interim strategies to address blood sugar.
Waiting to be scheduled with an interventional gastroenterology specialist who happens to be the director of a large hospital cancer center here. One of the best in the Midwest.
Probably looking at an endoscopy ultrasound procedure thereafter; lab workup has started.
Hungry again . . . Afraid to eat.
Have volunteer responsibilities now and concerned about meeting them.

Please pray. This could be a new course of care that leads to a cure for my worst symptom. Or cancer. Holy cow! Having severe spiritual attacks.

Leaning on the Lord . . . Pic is from a better day 2 weeks ago. Our God reigns! And Yay God for that sweet evening with my hero, Steve!

Peomenade Park, Fort Wayne, IN
September 2, 2019

It’s just me, It’s just You

It’s just me Lord

Laying my burden at your feet of glory.

Tempted to pick it up again

To etch out stains left on my life, on my story.

Alas Your Word doth profess

You have it already in your plan:

The end, the redemption

The entire beginning from the end.

For the race is so hard

I admit day after day

When the lows speak loudest

And overshadow the sunnier ways.

It’s not as bad

I do proclaim overall

At least I can rest

And in the quiet, hear Your call.

What a gift to behold

Your goodness in so many forms

Let it not shadow under

These deviations from the norm.

For You know the score

The rise and fall of my failings, my pain

Holding my tears

Allowing me to rise out of bed once and again.

It’s just me in humanity

My weakness, shame, failings, doubt

Oh could You just take

My thorn, soon and forever pull it out?

Seems so simple

Yet I cry and too easily give in to worry

Will have to be You my Lord

Leading us onward, yes for Your glory.

Bouncing back, bouncing all around

It’s a good thing that the Lord is great and consistent every single moment of every single day, keeping our best good in mind when we are bouncing around a bit in life. Yesterday was a day with two of those hits for me.

I recently described a dilemma I had with a new treatment direction as I trend overall toward recovery from a serious illness. I am grateful for some better days and many more better moments than most of the past 7 1/2 years. I’ve barely grasped the significance of all of the changes let alone managed the new patterns of illness/recovery/illness and so on. The following 2 pictures from my early “birthday celebration” depict this very well I think.

9:00 a.m. after my alarm went off, back to bed then after the tail end of an unexpected/long tic attack episode, and needing to eat before taking PRN medication. I can’t control my left arm and struggle to feed myself, manage dental appliances with assistance.
4:30 p.m. celebrating at the Chit Chat Tour of social media stars Diamond and Silk before dinner along the riverfront.
JW Marriott, Grand Rapids, MI

With the blessing of an incredible local endocrinologist (that I miraculously got to see in record timing) I am free to make my own changes with new medications (this time covered by insurance, yay!). Her intervention has led to both successful and sometimes confusing experimentation. I’ve consulted with a local compounding pharmacist, prayed and landed on a plan that includes returning to mercury detox. Mercury can be sequestered in the tissues of the thyroid. I suspect that Hg is getting stirred up, even dumping as I transition from suppressing the thyroid: Docs prescribed high doses of meds for decades but an Endo at the Mayo Clinic recommends drastically titrating them down. I can’t seem to go fast or slow enough to cope with the outcomes each day. Hg as a mitigating factor seems the only plausible explanation to me right now given that I was doing so well initially then the seizure attack episodes returned. And mercury binders, minerals affecting the thyroid inversely affect the pattern of episodes. Mercury showed up again in recent blood work . . . Gratefully I have the best tools around now for both of these avenues.

I felt really beat up and exhausted as we left the house later today yet rallied for the cause of celebrating my upcoming birthday none the less. The tickets were already purchased for a show that is a long car ride away from home and my beloved Steve would be doing all of the driving as usual. It was a good decision to go. I had a really nice time with Steve. Then I took my Hg binder supps too close to bedtime and have been awake all night. Well crapolaski! (That’s Polish, of course.) This time at least I was able to get some correspondence done as the night broke into day. Crying and weeping really take the life out of you for a time, then joy comes in the mourning.

But social media stars Diamond and Silk are exactly the rescue remedy that I needed today. They are a hoot! Don’t follow this link if you aren’t open to other political viewpoints in our hotbed of political correctness in the United States these days. These sisters are polarizing! Kind of refreshing for me: a gal who has chosen to be transparent with the real ups and downs of overcoming a serious illness. The straight scoop is just alright with me. “Don’t sugar-coat it baby! That’s right!” And so is the Word from Lord, Jesus Christ, that sees me through it all. I hope He will do the same for you Gentle Reader. Have you trusted in Him no matter what? JJ


And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.


1 Peter 5:10

Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ

Tough and Tougher Still

Another injection of Prolia behind me for osteoporosis: Six weeks late due to having to change Providers and get re-authorization.

Nursing Supervisor administered the injection instead of the CMA as a precaution after discussing my history with these thingies.

One hour continuous convulsive episodes followed whilst clinging to a raised treatment table, fearful of falling off. The PRN Prednisone did nothing.

Nikki, the very sweet Nursing Supervisor, stayed with me in the dark, closed room for the entire time. I rarely get that level of supervision during an episode.

Sat in the treatment room for 30 minutes more to make sure there would be no mo rebound spikes.

Sat in the lobby for over another hour trying to stabilize to drive home, nauseous, weak, exhausted, pained. Thank God for a little HGTV on the monitors!

Cancelled plans to grocery shop. Gently drove home with a bad neck headache, etc.

I reek like cheap fragrance from that place. Time for a shower and as much sleep as possible whilst nursing the cold I am catching from my beloved Steve.

Wondering if my reaction was worse this time because the injection was 6 weeks late. (Delays also can increase the risk of fracture.) I worked really hard to get this done on time but it is the insurance company who literally “calls the shots.” Glory be, I will be doing this again in 6 months!

Let there be no mistake: if I did not have my faith in the Lord, Jesus Christ I would have given up by now! He sees us on our bed of sickness and weeps for our suffering. Always remember that our God reigns and I continue to trust Him. His mercy and grace, sustaining power is REAL. I lay down my sword and let my God fight for me. Lord willing, this 7 years of hell on earth will end; even if it doesn’t end I trust in the hope of eternity when all will be made right and good. Lord help me to be faithful in this difficult calling and thank you for your promise of restoration, of Your blessing one day. To God be the glory.

Gentle Reader, He will meet you where you are as well and carry you if necessary. Lay down your sword and let Him be your tough guy! Believe this day!

Just Julie