Tag: disappointment

We survived our Christmas holiday

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He suggested a restaurant, I located a coffee shop, we could save money by making our own food, then 4 of 10 family members cancelled, so a local brunch place it would be for our family Christmas gathering!

I intended to meet up with them that Sunday the 23rd but the old beast I battle interfered then lo within hours they were in the driveway and headed to the backyard just moments after I’d made it out of bed! Thank the Lord I’d showered before my recovery nap; the gals had dressed in warmer garments so their greetings on the Wintry patio meant I could see my beloved’s wonderful adult children after all.

The gifting seemed awkward but we were generous all around anyways then whammo it hit and seizing returned body-wide in full view, right there in the open air: my winter coat and silent eyes all around me. Some had not witnessed this hell before . . . what the hell? I prayed as my body shook violently and slumped down into the lawn chair, with me still wondering why I have to be awake to try to figure out what I am supposed to do during these nightmares when I can do nothing at all?

A plan came to mind and when my body writhing stopped, I dangerously dashed for the sliding glass door whilst screeching from my loins how horrible this is, my deepest sorrow, and my love for them all. I still dunno if anyone heard my guttural tears that began as I closed the door and lasted for the next hour with episodes that returned as I dragged my body back to the bedroom to crash. Again. Then I wondered, where was Steve?

Sounds in the background told the story that they had all left, including my beloved, with them . . . No one had brought me any food (I guess I was sleeping earlier when they were eating lunch with the live Christmas band delighting their visit), said good-bye, or showed any concern for my welfare . . . until 2 of them texted me messages of concern hours later. Ah, the days of living by the (inadequate) communication of our smart phones! It was all I had so it was something I guess. Steve returned a couple of hours later to tell me they had gone on with their plans of go-kart racing. The pictures on Facebook told the story of the great time they had. Do I want to see them? Say what?

This type of unexplained episodes continued, preventing worship at a Christmas eve service the next night so I braced myself to spend it all alone. How could I possibly hold my husband hostage at home with me when a couple of his adult children remained in town? Extreme chemical sensitivity was about to take him down as well when he got to the church and it reeked of burning frankincense so badly he could not stay inside the building. So we watched the services together online at home . . . Silent night, holy night.

Christmas required extra rest before a simple celebration with my beloved: no decorations or fancy foods just some gifts and an appreciation of the meaning of this day that was more apparent for me this year than decades ago. Simplicity does that. Christmas is measured in moments, however small, when you focus on the love that comes from our Savior, Jesus Christ. The traditions are lovely when you have them too. I tried to be positive and loving to my amazing man who has been faithful through so much heartache and sickness from me. How can I possibly sweat any small stuff when he always gets the big stuff right?

Little did we know that we would both become very sick with the flu within 3 more days. We had an errand to run together, at the end of which my beloved was already fading with illness. I joined him within a day and gratefully after some cleaning and making a pot of soup for us both. We still had not gone grocery shopping which didn’t matter since neither of us could eat hardly anything. That didn’t change much as the worst of this flu lasted FOUR DAYS!

Steve has started to surface back into life as he did some online studying; today was my first day I could stand in the kitchen long enough this evening to roast some chicken apple brats in the oven. Yeah, finally I wanted to eat a little more again after incredible pain and nausea lead to the loss of 3 pounds. I started to talk in complete sentences today while bracing my neck, rib cage, and abdomen when out of bed, yeah, afraid of making worse the new hiatal hernia and gastritis diagnosed 2 weeks ago. Can you say “I feel like a basket case?”

By the grace of God we survived our Christmas holiday. My beloved spent half of his vacation time from work battling the flu and barely seeing his adult children visiting from out of state; I never really recovered from this whack-a-this-or-that. This Winter illness is going to take me a few more days from which to stabilize . . . but interestingly the seizure attack episodes that flared at the beginning of our holiday week are down again. Yes, they are down! I have just found a way to take some nutrients that have been critically and chronically low and which are likely a major contributing factor to the convulsive episodes. To become seizure-free would be my desired earthly gift this new year. Thank the Lord we made it to 2019!!!!!!!!

We have been here before, you and I, Gentle Reader, dozens of times with my stories of hope and heartache and hope and heartache again. Call me a Weeble that Wobbles but she don’t fall down, I guess. Are you hanging in there with me too? Jesus makes the overcoming all possible in the end you know. (Please excuse my wee bit of humor, my Lord. Unlike me, you never falter.)

Gentle Reader: I pray that you did a bit more than survive this Christmas too. Happy new year? Oh yes, happy new year it is going to be! JJ

This but that, but this!

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The plan began with a desire to see my husband’s family for an upcoming holiday.  But gathering in Texas would require 2 very long days of driving for us, pulling a travel trailer.  One family member suggested we meet in Arkansas instead which would be closer to the university where a younger family member is studying.  Cut off one full day of driving for us?  Yes, let’s go to Hot Springs, Arkansas instead.

This plan continued with the hope that we could camp at the RV Park inside Hot Springs Village.  My Mother-in-Law has a house in the Village and we would be closer together.  But the campground will be under construction for the months of November and December to have sewer hook-up lines installed.  It’s going to be closed!  Yes, let’s go to an RV Park about 30 minutes away on top of a picturesque mountain top instead.

The plan originally included having Steve’s daughter travel with us then the idea popped up to have both of Steve’s daughters stay with us in our travel trailer.  Oh what a blast that would be!  We now have the room to accommodate them but I simply cannot do so at this time.  I was devastatingly sick for 4 days this past week when some new fragrances triggered my worst symptoms of Chronic Inflammatory Response Syndrome.  Geez, we don’t even know how we will have family over during the Christmas holiday let alone have them visit overnight when both are back in town.  (Our attempt in September failed.)  But to stay in closer quarters of a travel trailer while away from home in a less-controlled environment?  Yes, we want to be together but no, let’s at least travel and stay separately this time.  Again really.

This plan got even more complicated when planning our trip scheduled for departure not long after that horrific flare up last week.  I saw my newer Functional Medicine Doctor who spoke frankly and clearly:  I don’t think you should travel now.  What?  She said it would set me back even further, even if she could find a replacement for a treatment that contributed to the flare-up last week.  So her recommendation posed a dilemma for my saint of a husband who wants to see his elderly parents-n-family AND be with me.  Did I mention that our wedding anniversary is coming up?  But I really don’t want to be alone on a holiday much less our anniversary!  Yes, we want it all and may need to split up the holiday into a shorter trip, a shorter anniversary celebration.  We are used to compromises.

The planning behind the scenes for this month involved a recall notice for our new-to-us travel trailer.  We bought it after the original owner had it for about 3 months so we never got the national recall notice; it was for a safety feature that could pose a grave threat if not corrected.  We found out about the recall in a Facebook group!  Nineteen phone calls over the past 15 days resulted in a plan to have the recall work done at a local RV repair shop.  But it got too close to our potential departure date to get the trailer to the shop-and-back:  2 trips of 3-hours of travel each time.  Yes, we are no longer travelling with the travel trailer so we have more time now to get it fixed!

This trip required me to get the oil change and tire rotation for my truck that was coming due.  We just figured out that we were not travelling cross-country but I decided to get the maintenance done anyways.  On the way to dropping off my truck at the shop last night I HIT A DEER!  The impact trashed the right-front quarter panel and headlamp of my Nissan Frontier.  The turn signal stopped functioning correctly.  There is no way we could travel cross-country (which always includes nighttime travel for us) with a damaged headlamp.  Yes, you can see now that the door to travelling this holiday is now fully closed.

Nissan Frontier, deer, impact, hit, accident, crossed the road, Coldwater Rd., Fort Wayne, Indiana, white, truck

The plan may change to include my hubby travelling alone for a shorter time while I rest up; we are holding our breath for now.  But what if it snows?  He needs new tires on his car before the next time it snows, according to the professionals.  Yes, we will find $800 for tires if we need to . . . That’s about how much a longer trip would have cost anyways, if we helped with housing for Steve’s daughters.  Which we would offer, of course.

This but that, but this!  Such is life in this fallen world in which we find ourselves.  Many times I have said that when the trials have come, seemingly often of late, that I am holding out for the hope of heaven.  Heaven indeed.  The late Pastor Billy Graham wrote:

Paul wrote, “If only for this life we have hope in Christ, we are to be pitied more than all men” (1 Corinthians 15:19). But our hope isn’t only for this life! In the midst of life’s storms, our hope in God’s promise of heaven is “an anchor for the soul, firm and secure” (Hebrews 6:19).

He said that if we are ever going to live for Christ, then do it now.  I was reflecting on these themes when I was emptying the trash the other day.  I hit my head leaning over to remove the top of the can as the can was positioned between the toilet and the bathroom sink cabinet.  The top slid back behind the toilet, my head brushed against the toilet paper dispenser, and something fell back there too.  I wondered if in heaven things like emptying the trash would always go smoothly?  Then I realized that there is no trash in heaven!  We know this from Revelation 21:4 that tells us:

He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

I imagine that there will be no long days of driving with cracked headlamps, recall notices, endless phone calls to make things right, separation from loved ones, suffering, cramped bathrooms or travel trailers, worn tires from roads traveled, nor heartache in the dwelling place of our Lord, Jesus Christ.  This is a plan upon which we can depend for those of us who believe.  Now that’s a trip I’m already on.  How about you Gentle Reader?  JJ

The Trip That Wasn’t

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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

 

The Long and Winding Road

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Paul McCartney wrote the famous ballad entitled The Long and Winding Road when inspired by the farmlands around his Scottish home.  He wrote it during a time of tension between band members of the Beatles and then it was published in 1970, just after the break up of the band.  I remember being very upset that they were no longer together after changing the popular music scene forever.

This is a sad song.  Tonight I understand the many sentiments expressed within the lyrics that go with this sweet melody:  melancholy to a sense of unmet longing:

When the road goes on too long before you reach your destination or you never really reach the destination you set out to find . . .

Where the twists and turns push you beyond the roadways onto the rough gravel, shaking you up quite a bit . . .

Who comes along with you sometimes wishes they were not there at all then comes around to being alright in your company after all the weary miles together . . .

What you find dashes the dreams you once had, leaving you with emptiness before the Throne of Grace where all roads eventually will arrive anyways . . .

And you shed deeper tears than you ever knew before in your pain and anguish . . .

Such is the song in my broken heart tonight.  All I can say to the God above or beyond is, “I need you now more than ever.  Please lead me back to your door . . . let me know the way.” JJ

The way it should be

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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