One more time

A new specialist, a new gathering of papers

This is getting old already . . . not to mention the seizure attacks around 11:00 pm last night. Or is it still tonight? I digress.

A different role, a place all too familiar

As the rest of our lives carry on with big news: hubby passed his FAA oral and flight exams! Just like that I am the wife of a pilot, again!

Alas the doldrums of daily routines still carry on

Finally getting to work in my own garden late tonight after devoting much of this past season to a community park and much of this weekend recovering from another setback, ugh. The blackberries are no more. Elderberries are up next!

It was 8 years ago that I got sick just 5 days after buying my first truck

Now it’s a few weeks after an upgrade in same . . . does this mean that I will get well and drive off with my beloved into the sunset? Oh how I can dream, right? That we did the right thing too.

One more time things come around again but really are not the same

For we can never go back only forward as each breath moves us on. I guess we want to be who we are now with the romanticized memories of what we once knew: the fullness of our present with the innocence and perhaps mistakes erased from our past? Yeah, just let it go.

Look to our Lord and His return to make things alright my Gentle Friend

He will return in glory, in judgement, in power, and the makings of everything better forever good. The best part: TIME will no longer be our measure but only to dwell . . . lain in the rapture of ultimate love for always.

Sounds wonderful to me. Do you know Him too? Oh I pray that you do and you will be there with me when the stuff of life moves on for good. May this music minister to your soul as we wander towards our heavenly home. JJ

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

Just Breathe

The stress is crushing

Into my chest, my frame in flare

Old issues still wanting to be a friend

Screaming with the new ones, a symphony of suffering.

The stuff of life

Crowds every moment and then

The smart phone dies and hours are sucked up

In this Verizon store, that kiosk, then hours with online tech support.

My checkbook sighs

From neglect then a balancing act

Or nightmare as the expenses of preparation

Smell poorly like the “unscented” shampoo at the dog groomer!

Alas I confess

I have been here before:

A medical trip on the horizon

Brings hope but making it so: invites a nightmare.

For how does one prepare

With a brain on fire and infections too

Each vying for attention in the hours that remain

Before departing to the fabulous Mayo Clinic very soon?

Just breathe little one

The one inside that is afraid

Come to my rest my Jesus calls to my heart

Lay here your worries, your burdens; the time remaining is mine.

How fitting after Valentine’s

When I barely got to see my amazing love

That the Author of love would also come to my rescue

And all I have had to do is let go: let Him add the increase for the rest.

The rest. Hear that!

For the opening of this door

Was ordained for this season in life

The last medical records will arrive today. Go take a nap already JJ.

Will you still love me tomorrow?

The question we simply don’t need to ask.

The question that I simply don’t need to ask again, yet have wasted too many moments wondering, is the one posed in this song by the Shirelles.  Oh and Dionne Warwick.  And maybe Amy Winehouse too.  Such a classic song!

Each time I wind up in the Emergency Room, I wonder if my beloved will still love me the next day.  This morning he referred to yesterday evening as “another date night!”  Unbelievable.  All this love continues after about 16 trips to the ER in the past 7 years.  I am humbled and blessed beyond measure.

This blessing is hard to see sometimes when my body is breaking down in a new way once again.  Looks like an ulcer in the lower part of my stomach is the reason for a month of abdominal pain.  Over-the-counter and walk-in clinic medications did not solve the problem.  So after a CT scan under the influence of anti-allergy drugs and some more potent medication, I am in less pain . . . but oh so worn out.  I’ll see a gastroenterologist this coming week with an endoscopy likely to follow.  Going to try to keep my stress level low in the meantime.  I mean I don’t have any other of the risk factors that contribute to an ulcer (e.g. spicy foods, caffeine, alcohol) unless of course there’s a hidden H. pylori infection.  So more testing is needed to figure this one out.

The other “love” that could be easy to question is that of my Heavenly Father.  But I don’t.  I look around and see tremendous blessings in my life in that I have a warm home in which to convalesce, enough food and clothing, and finances for the important stuff.  My beloved is faithful and loving like “Jesus with skin on.”  What I don’t understand is how these illnesses isolate me from friends and family outside of our home and most notably, my husband’s adult children. 

My extreme sensitivities continue and are triggered by the fragrant products they (and many folks) tend to use.  We are just not sure how to manage this reactivity with our Christmas gatherings rapidly approaching.  We already had to decline having both daughters stay with us (which was a delight to host them in years gone by).  A trial of having his oldest stay with us for about a week 2 months ago, despite extreme precautions, triggered a violent relapse in the convulsive episodes.  I am now sensitized to even trace amounts of fragrance on her coat that was kept in a suitcase in our garage in between scheduled visits.  Then I had a seizure spike 2 days ago when she returned from some travels to pick up her suitcase . . .

My heart is breaking from more than the loss of acquaintances and friendships:  my relationships with my husband’s children never really got going.  Steve and I have been married for 11 years and I got sick just 4 years into our marriage.  I have been battling a serious illness for most of our marriage!  You could say that my limited visits with his adult children gave them more time to adjust to the fact that their father is remarried.  Well, o.k. maybe that’s it.  I already sensed that I needed to lie low during their visits in the beginning anyways, focusing on serving them good food and comforts and not speaking up too much nor complaining when their Dad jumped to see them, rescue them when the trials of young adulthood came along.  No problem.  Fix the car?  Pick them up at the bus stop?  Join them at church?  I just had to stay home due to illness factors and couldn’t go with their Dad to help them, that’s all.

They don’t really know me either though.  We profess the courteous “love” greetings yet would I ever really see them again if something happened to their Dad?  Oh dear, I should not even go there.  I now realize that this barrier between us is completely out of my hands.  Remember when I sent along baked goods with Steve for when he visited his family in Arkansas without me 2 weeks ago?  Yes, I need to rest in the hope that what I could do has been done as unto the Lord.   My Jesus and my beloved know my heart.  They hold together the parts in me that are breaking and the inner tears.  And the Lord also holds me in tender moments like these right now.

I need to know that your love.  Is a love I can be sure of.  So tell me know so I won’t ask again.  Will you still love me tomorrow?

Yes, for sure.  JJ

Jeremiah, 31:3, everlasting, love, doubting, Christ's, Lord's, faithfulness,what He thinks of me, endurance, love through the trials

In a far-off land the LORD will manifest himself to them. He will say to them, ‘I have loved you with an everlasting love. That is why I have continued to be faithful to you.’

Move freely, heal well my dear

 

dancing

The importance of moving

Cannot be understated

The body not the soul,

One’s frame sans the stuff.

Blood flows, lymph drains

Breath deepens, waste can leave

If only we help it with

A little muscle contraction against gravity.

[So easy for her to say to me today!]

I cried in fear

As physical therapy began

I’d been here before

And knew about the score.

But wretched seizures

Met me by each session’s end

My body erased

The good that had ensued.

It could be different

Now that the beast is tamed

Perhaps give way to healing

And actually doing my home exercises?

Ah what a delight that will be

I do see it coming out there

Can almost reach it, so sweet

This is the beginning of healing!

Just had to mourn

Seven years lost since

The time I moved with ease

When no fear waited in every corner.

[Sigh.]

Today marked a new beginning

This time appears to be for real

Thank you my Jesus, for carrying me through

Time to give in to freedom as the healing is now here!

JJ