Treatment Update

Alas there may come a day when I will not have yet another treatment update!  Yes, Lord willing, I do think so . . .

Rocephin, image, picture, ceftriaxone, infusion, IV, bag, fluids, treatment, pneumonia, outpatient clinic

I got a nasty case of pneumonia within about a week’s time and am in the beginning of intensive treatment.   I understand that if I would have waited then I might have landed in the hospital!  Whew!  What was a sinus infection for my husband was something very different for me.  So a dose of potent cough medicine, nebulizer breathing treatments, Z-Pack antibiotic, and 5 doses of IV Rocephin (with and injection of same to start things off) should take care of it.  Hopefully!

Tis cool that in the background are barely any seizure attack episodes.  (Exception:  stick a nasal culture swab up my nose and all hell still breaks loose!  Ugh.  Those cranial nerves still need more time to heal.)  Increasing the height of my specialized dental appliances  on my own 2 weeks ago appears to have helped improve its overall  effectiveness.  My Craniomandibular Disorders Doctor gave me parameters over the phone to follow in making the adjustments myself.  After about a week of experimentation with a hot glue gun, it was the plastic wing nut screw attached with super glue that saved the day.  And it saved us almost a grand ($$$) in travel expenses since I didn’t need to travel out of State to his office!  The modification looks very weird yet it is working!  I will still need to take a trip to see him before too long to make sure everything in Phase I of my treatment plan is still progressing.  In the meantime, gotter done.

My activity level and tolerance had started to increase some just 10 weeks into this new treatment and before I got sick with pneumonia.  It was actually becoming difficult to judge just how much I could do in a day after having so many restrictions for so long.  In the past I would work in the yard awhile then feel the stress of tasks left undone, wondering if I should keep pushing myself to finish everything just in case I could not get outside for awhile.  I am calling this a “scarcity” mindset that used to be my way of coping for the past 6 years.  I am trying to work in a new way now:  taking breaks along the way, drinking water, stretching a little here and there, and actually stopping early if needed to rest.  In my occupational therapy profession we would call this energy conservation.  Feeling less neuro-irritability is helping me to have the patience to pace myself, to implement these strategies as well.

So there’s a few bits of news of late.  The caregiver role for a family member has slowed some as she vacillates between limited care options and I simply am too hoarse to talk to her on the phone very well.  We will likely connect before too long in person with my husband as well and figure out things face-to-face.  That is really the best way anyways.   She is concerned that my health issues could interfere with caring for her.  That is possible.  I think we can figure things out though as her needs aren’t that great right now.  Continuing to do as much as she can for herself no matter where she is living would make for the best transition and new beginning.  She just needs me to encourage her in this directions sometimes.

Don’t we all need a little of that encouragement, Gentle Reader?  JJ

The Waiter Went the Other Way

So we thought we’d have a little meal delivered

Just the hubby-n-me tonight, no special reason

Placed the order with the coupon of the month

And settled into the night with tummies a grumblin.’

We took care of a little of this and that

Caught up on the news of the day

He has a canoe race tomorrow, me a treatment

Both will go forward on a rainy Saturday.

Surely the restaurant

Was busy or somethin’

As the hours wore on

We hoped we were not forgotten.

But abandoned we were

And the manager had no order

The delivery service never came

And no one got to bother our dog.

Soooooo,

Unfrozen brats and canned green beans

A little granola, some almonds oh yeah

Just add a pat o’ Irish butter dear lad

To fill the bellies ‘fore bed a wee bit unhappy.

The Waiter did not make his Way

To our doorstep this night as hoped

The dog will just have to scare another soul

Or munch the bonus treat they’ll need to bring tomorrow.

He Ain’t Got Drowned, Thank the Lord!

Warning:  Read this until the end!

He left before I woke up and long after I was up in the middle of the night baking him cookies for the race.  Another strange night it was.  I had crashed early in the evening, many hours before my bed time . . . not that there is a usual bed time, that is.  I am still up very late about 2 nights per week yet that is a huuuuge improvement from my years as a night owl.  But my tummy hurt and I just couldn’t stay asleep.  All I could think about was those cookies that I wasn’t able to bake as promised and the risk of my beloved River Bear collapsing in the river the next day.  So I got up and started mixing up the ingredients sometime after 2:00 a.m.  The story was unveiling vividly in my mind as the scent of baking chocolate chips and Irish butter filled the air . . .

My beloved would be paddling a new-to-him Wenonah J203 carbon-fiber marathon canoe, probably putting him at the back of the more accomplished river rats on Saturday.  They all would be pushing their limits in the cold and rainy weather, trying to get back into shape for the upcoming race season.  RB would be no different.  The only difference is that he would be competing with a sinus infection on top of some chronic breathing issues.  The  realization of the risks was just enough to drive the mind wild of a kayaking-turned-canoeing “widow.”  Yeah, I don’t see him much during the Spring-Summer-Fall racing season so temporary paddling “widow” I become!

Today was especially of concern.  If he got a coughing spell when on a remote part of the river, spread out for miles over the course with the other dozen-or-so racers, there’s a good chance that only a real bear in the woods would have heard him struggling.  His  brown, furry cousin probably would not have minded my beloved’s residual garlic breath as he munched on his serendipitous, soggy lunch feast.  But that was not the worst of my worries.  More likely another racer in an equally tippy performance kayak would see my beloved slumping forward, splash into the water to save him, and be unable to do much of anything about it.  I foresaw in my mind’s eye that probably would be LB, of course.

She in her 4-foot 10-inch frame would jump out of her boat, neither one wearing a life jacket despite the cooler water conditions, and wrestle with RB’s muscular/lifeless body as it flopped into the current of the Tippicanoe River:  he almost 70 pounds her senior and her struggling to keep both of them afloat.  The river would win and down he would go.  She would be traumatized and exhausted from the fight against the swirling water, the soaked mass of a man, the expensive boats and paddles flowing downstream, the desperate feeling of not being able to save him no matter how hard she tried.  I could see it all in my mind’s eye, of course, in an instant.  I had been in a similar situation myself just 8 years ago during my first encounter with a performance sea kayak on the Allegheny River.  I feared for my life!

Back at the boat launch or maybe when she could signal for help, LB would desperately reach out.  The fellow racers would leap into action, scouring the shoreline for signs of the man who teased them hours earlier with a craft beer for any seasoned canoeist who could beat him on his maiden voyage that day.  They may or may not find him or his gear.  The rescue boat would eventually arrive, find and take his body to a local hospital for the fateful pronouncement.  The paddlers would stand in a circle at the take-out speechless, none volunteering to call the wife over 100 miles away who had sent along home-baked cookies for the annual meeting afterwards.  No one would be brave enough to call her or maybe the Fire Department would at least leave a message?

Do they ever really tell you all of the news anyways that you need to know when you get a dire phone call at a time like this?  I would then be in my own racing seat as I made the 2-hour drive to the Lafayette area, wondering if I had the right name of the facility where my RB was being held under refrigeration.  Perhaps I would drive from facility to facility searching for my loved one?  And what would they tell me when I found him?  Would anyone be there to tell me the story of what happened?  Would the racers have taken a luscious cookie but gone on home anyways, themselves suffering from the trauma of the friendly competition gone wrong?

And what would I do next?  What about the pup at home, the phone calls that needed to be made?  I would probably have to stay over a few nights to release my hubby’s body to return to our home town on Monday morning and begin preparations for the worst event of my life:  a funeral!  I have done this in the past a few times and it is exceedingly and painfully difficult.  Oh dear, what would become of my elderly family member out of state for whom I have become a measure of a caregiver?  Where would my beloved’s children stay, what would I say when they arrived grieved beyond belief from all over the country and 2 foreign countries?  Holy cow.  Maybe I would just sink and die myself right then and there rather than deal with it all.

Or maybe not.

*************

Twelve hours and 2 naps later, I heard the side door open.  My River Bear was home!!!  I was in shock.  Where did I just go in my mind and my heart for way too many hours?  In what or where have I placed my trust?  And why the heck am I so very needy, so weak, such a worry-wart when the Lord has been faithful to lead me through horrible tragedy dozens of times before.  Is this mental exercise really helpful at any level?  The answer:  NOOOOOOOOOO!!!

I have come to realize that there are a couple of coping mechanisms that come with enduring serious illness for many years that don’t work very well at all in a fit brain.  One of them is living each day with a sense of impending doom.  When virtually every night and every morning for the past 6 years was met with violent convulsive episodes, I lived every day with a sense that bad things were always going to happen.  It was just a matter of time before they did.  Well guess what?  The convulsive episodes don’t happen every night or every morning anymore!  I have got to let go of this “stinking thinking” as we used to say in my 12-step group days.  Husbands virtually  always come home.  And if they don’t right way, they usually have an amazing story to tell that makes you fall in love with them even more!

Another coping mechanism that got exercised in writing this story was that of always needing a contingency plan.  More recently, every time I would plan to do an activity at home or elsewhere I set up alternatives in my mind of what I would do in case I got sick.  I told RB my plans for the day, I had every “rescue remedy” I could think of in a lunch bag with me, and kept running errands until I was exhausted — just in case I was too sick the next few days to leave the house.  As you can see from the bit of paddling fiction above, I listed a few of the questions running through my mind but in my head, many more options and scenarios were playing out in my mental tool box.  What a colossal waste of physical and emotional energy!   While a “scarcity” mindset may work in times of famine or flood, I really don’t need it with me anymore.  Me and the Lord will figure out whatever may come my way.  Geez!

Of course an obvious failed coping mechanism is last on my list today:  a false sense of control.  I cannot predict anything that will happen, good or bad, and neither can you.  If I truly trusted the Lord with my life in times of tragedy and triumph then I would not need these fantasy games to cope with the fact that I have a REAL MAN who LOVES ADVENTURE no matter if he is sick or well.  That makes him who he is!  And his passion for life makes him the man in whom I fell in love over 10 years ago.  No wimpy dude over here!  He pushes the limits to the admiration of his peers and sweat of his competitors because that is just how he is wired.  I guess I am still understanding how different we are, how different the Lord wired each of us.  It is a beautiful thing really.  And, Lord willing, my beloved will always be home at night in pretty darn good shape too, I will add!  :J

Proverbs 3:5-6 (NIV)

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight.

So the next time my man goes out to do that which he is called to do, I will pray for him and for me both!  I will not respond with fear but anticipation of some great stories in which I may one day join in, Lord willing, as I get stronger each day.  The day is coming soon when I will want to venture myself out into newer, uncharted waters, so-to-speak knowing that my Lord and King is already there, cheering for both me and my River Bear.  This could really be a fun summer after all.  I often cheer, “Goooooo Steeeeeve” from the side of various rivers when my beloved’s paddle hits the water at the sound of the starting gun.  Maybe it’s time for a little, “Gooooooo Julie” too?

Stay tuned.  There’s always another story waiting to be told around here for you Gentle Reader.  The water awaits!  JJ

Stellar, SR, paddling, woman, kayak, kayaking, wing paddle, carbon fiber

Me in my Stellar SR surf ski in 2011

Scorpius, outrigger canoe, OC1, Hawaiian, boat, man, paddling, life jacket, racing, buoy, turn, marathon, River Bear

My River Bear leading the pack at the bouy turn on the St Joe River, Fort Wayne, Indiana in July of 2015

2013 Livin Lite Camplite 16 DB for Sale!

Camplite, Livin Lite, aluminum, travel, trailer, camping, camper, available, mold avoidance, clean, chemical free, avoidance, sabbatical

 

As we explore our options for some upcoming changes in our lives, we are placing our beloved Tin Can Ranch up for sale.  This Livin Lite Camplite 16 DB is virtually mold and chemical free making it ideal for folks who are taking a health sabbatical or travelling with persons chemically sensitive.

Here is the listing.  Please contact me below with your email address with inquiries.  Take care and happy travels!  JJ

2013 Livin Lite Camplite 16 DB for Sale

Clarity Came to the Caregiver

Sometimes the moments of frustration break away to clarity and decision.  Gratefully, the crisis is over for now in our care-giving responsibilities.

Recently I vented about the stress and trials of caring for a family member at a distance.  She is having difficulties making decisions.  She is having difficulty trusting anyone to help her despite reaching out to a few family members to do just that.  Then she changes just about everything after you have helped her establish according to her wishes at the time.  I am concerned for her safety.  Mostly I have been concerned for my own sanity and stress level, caring for a lady for whom nothing is quite good enough.  What a tough place for us both to find ourselves.

So we will back away for now until she finds that she really needs us.  Her summer visit is now cancelled.  Her indecision really is a decision of sorts!  My beloved saint of a hubby and I will see this family member within a month where we will regroup in person.  Until then I will focus on the tasks of recovery from my own serious illness.  More about that next . . .

Fiji, water, patio, covered porch, Indiana, Spring, garden, relaxing, healthy food, carrots, Bible reading, prayer time, shade sail, flagstone