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

 

One Day

Friday my Doctor recommended some new supplements to further my care and seemed pleased at some progress revealed in retesting of my gut health.  But neither product is available right now; instead I had to crash in bed that night and most of Saturday.

Yesterday I thought I would work on trimming a sterile plum tree in our backyard that is riddled with black knot disease.  We are trying to save it for a few more years of it’s flowering glory in the Spring and rich wine-colored leaves in the Summer.  It was not to be so today.

Tomorrow I hope that my trial of THC-free hemp oil will resume with receipt of a shipment in the mail.  I didn’t realize when I started it recently, how much I would need nor the extra timing needed for shipments across our country.  This could help resolve the seizure attacks as soon as this week . . . if I get the dosing right . . . and if the next shipment arrives shortly thereafter.  But there was a fire in a warehouse between here and there, threatening my continuity of care.  Maybe I will have enough?  Maybe not?  Lord knows that one day we will have figured this all out!

When today came I thought I might clean our bathrooms and floors then complete an infrared sauna treatment before heading outside.  Instead I was sick.  Only the sauna treatment happened.

Then later and just when it looked like the core of my treatment plan was coming together, another infection sent me and my beloved to the walk-in clinic of our local hospital.  Geez oh man.  Steve offered to take me out to dinner last night but I could not make it.  I was hoping to take a walk with him and the pup in the sunny, 50-degree weather.  Nope, not today.

I cried a lot before proceeding with what we did need to take care of me today.  Life sure is funny.  Perhaps some medical appointments this coming week will clarify what I should do next to get well in addition to responding to urgent changes that seem to come along every few days.  And maybe someday, one day, we will make plans for something fun and they will really happen!

In the meantime,  date nights will be at a clinic or pharmacy at Walgreens or driving to the nearest metropolis for a fancy  NeuroQuant brain scan.  At least in the case of the latter, we got to see a dear friend, Mary, for a quick lunch at Freshii’s in Chicago’s Loop.  Now that’s making the most of a day, eh?

Straining to trust in my Lord this night.  Choosing to trust in His Word and promise to carry me through it all no matter what may be one day for:

There is a time for everything,
    and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

What do workers gain from their toil? 10 I have seen the burden God has laid on the human race. 11 He has made everything beautiful in its time.   Ecclesiastes 3

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ