When you search no more

Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.

And so we shall, eh?

Freedom from Rain

Rainy weather working its foggy magic on a landscape is beautiful. A rainy day encourages introspection. Or at the very least a nap. I love the rain in all of its spirited and benign forms. But we have had rain day after day without much respite. This is rain of a different sort. Too much rain foments rot both above and below ground. Too much rain spoils blooms. Too much rain dampens the spirit. We have had all of the aforementioned. 

Deborah Silver

Is it the rain or the cold that gets to my weary bones far beyond the havoc it reigns in the garden landscape?

Perhaps the dry-out late in July that parches the land through the Fall is even worse, when my soul aches for a simple cup of relief?

How will I look back on this season of my own life where moments of respite, nourished from the right care gives way to occasional relapse and now tragedy?

Alas my dear brother, survived with me but not with our youngest, Rob, lies in a coma amidst the sterile hum of machines you could never repair

In your appliance servicing days let alone fix your own broken spirit from never quite fitting into the affections of our Dad but perhaps too much by our Mom?

What is Mike’s world like right now: can he hear the buzz, taste the plastic tube down his throat, smell the air now sanitized and finally free of cigarette smoke?

I ache for you as I did for Rob. You two never did get the advantages I had as the oldest nor fight long enough for better despite our childhood traumas.

Or perhaps that first year of my life cinched it when there was more love to give in both bloodlines . . . oh how I wish I could go back and carve more out for you!

The Lord grieves for us three as now you are now in the juxtaposition from time to eternity. It’s just not how He meant it to be you know.

I will love you forever Mike. Godspeed if this is the end. Go to your Maker and live at last, totally freeeeeeeeeeeeeeeeeeeeee!!!

A rain garden rises from the soil and rocks, bringing beauty and purification. Consider this a sign in the natural world of His creation that imitates the glory of a life surrendered to Christ.

A new answer to another question I did not ask

Life never ceases to be an adventure if that is the perspective you choose.

Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?

A little trellis project almost 11 years in the making gets completed this weekend! Yay God!

I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?

Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.

Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.

Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ

Psalm 34:8 New International Version (NIV)
Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

Five days to Launch

So tired and not fully stabilized yet

The road to Mayo warms before me, this trip by air

Oh that I could know I would be alright

When setbacks still haunt me albeit less than before.

Tis time to test this new me

And finish the work begun in winter

Much progress has come after 7 years in hellish places

Doubts covered by gratitude for our good God.

For never have I had this much change

In 2 short months before

Drastic changes in medication gave way

To no mo drugs after quite a struggle to get free.

My Jesus led me to figure it out

As my mind cleared from the fog of serious illness

The work of repair hath begun

With maybe a little fun in the mix too

Visiting the star of the North, Minnesota!

For isn’t it just like my Lord and Savior

Right after celebrating His glorious day

That I should have one of sorts too

A right of passage, a launch, so come what may! JJ

The grand entrance to the famous Mayo Clinic

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