31, 23, and 6:13

Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.

31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.

23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.

And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!

I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.

What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.

Lord, please hold my heart and my hand as I make this trip. Let’s go! 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

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

I long for you

My intended beloved, oh man of my longing

How is it that these things come between you and me?

I lie next to your warmth, oh so ready to imbibe

Til the horror of illness keeps me far, far away once more.

Albeit evil it must be:  a test for my weary, so weary heart

You know my lord and my Lord that I do shake with grief so!

Perhaps just for a time, please wait for me love

I shall return soon when illness has gone one day, I promise, I do.

Until then know that you are the one for whom that my heart sings

The one who loves me so, beyond that which I can even wanton,

My knight in shining aluminum, we jest, but you are indeed more

And know me well, I love you too . . . this is all I need to know to live.

Our Jesus is out in front of us two leading us on

When darkness comes, oh here it is again, we shall not be moved;

Hold me as you are able or as my frame lets you in

Forever in my heart you know you will for always be with  me.

Solomon, 3:4, Christian, marriage, trials, chronic illness, sickness, intimacy, sexuality, wife, husband, Lyme, seizures

The Trip That Wasn’t

The best plans with reservations and all

Lain ready for some last minute cooking, packing, and prep

We would camp in the rain in a humid State down south

And see my Dentist, my Aunt, and maybe a friend.

But as much as we tried to make it all happen

This trip was simply not meant to be this time around.

Ten days ago I got pneumonia and treatment began thereafter

Oral antibiotics then IV infusions of same

With more drugs than I care to mention to manage the symptoms.

I had forgotten since my last bout with same in 2009

Just how dangerous and devastating a lung infection can be.

So rather than risk infecting my Aunt with her own health issues,

And delay my own healing with the rigors of 4 day-long car rides

We won’t be going nor helping out my Aunt until much later instead.

This isn’t really a poem, just some prose to get it out of my head

I am exceedingly disappointed, confused, and not sure what to do instead.

Rest of course.  Try to get our home back in order from being away at the hospital each day

Let go of the questionable care from nurses who didn’t know or care that much about me

And rekindle the love with my River Bear who makes it all alright anyways.

How can one make sense of plans gone awry:  it just doesn’t seem right

Well my Lord’s already there, so in Him I will trust.  He’s had my back every other time!

JJ

 

Being married to me

Must be tough being married to me

A kiss can turn into a nightmare, intimacy much worse

When the beast of illness rears its ugly head

And convulsive episodes ensue and last and last . . .

You never really know when

Some sweetness will turn to black

Your affections will turn to caretaking

Yielding another failed remedy instead of a back rub . . .

No partner by your side

Others asking about the phantom wife

Does she really exist out there somewhere

Or is it just on paper and within her cage of the home?

She cooks alright and keeps the house afloat

But complains every time you call

Of this dire affliction or that when he’s at work

Helpless, other-directed, and burdened under the strain . . .

Months turned into years

As life tried to move on so we

Try to celebrate this or that, have a nice meal

Only to have her collapse at the kitchen table again . . .

He has gotten stronger

From carrying her burdened frame

To the toilet, the bed, the couch, off the floor

Rolling her over in bed, lifting her up to drink . . .

He has had to adjust to this abnormalcy of life

Never mentioning it unless another asks

For the pain of the story isn’t worth the awkward moment

A thousand times told, untold a bit later . . .

Tis the Lord’s will

The believer in Christ must contend

Yet are we not commanded to fight

For good, for answers, for more faith when tears flow?

Altogether lovely

He remains strong

Goes to work and play

To cope with the madness . . .

She waits at home

What choice does she have?

Her calling different from his

Or is it when bound by love?

There is no right way

To navigate a life gone off the rails

Except to breathe daily in prayer

When being married to me.  JJ