Frequent Flyer Miles

Hospital Christmas Tree, hospital, medical, ID, identification, patient, band

Travel frequently with any major airline and before long you will accumulate Frequent Flyer Miles.  Gather enough points and you can start planning a getaway weekend to someplace warm or maybe remote enough to forget the cares of everyday life.  Oh how I want to cash mine in soon . . .

So I walked into our neighborhood hospital for a test and the gal at the reception desk greeted me by name!  She had my red radiology folder already in-hand, clearly expecting me at any moment (with most of my “HIPPA” paperwork already started!).  Talk about customer service?  Er, no.  More likely it’s a function of my frequent visits to medical practitioners and departments within the past week:  SEVEN OF THEM!

It’s the week before Christmas so I thought I would photograph a few hospital I.D. bands within the bright green branches of a Dwarf Mugo Pine.  Kinda looks pretty, doesn’t it?  Ugh.  I digress. I’m alright, Gentle Reader.  The choking coupled with increased nightly seizures turned out to be symptoms of a sinus infection and all are gradually subsiding with a course of antibiotics.  I’m getting back to baseline.  Too bad they don’t award Frequent Flyer Miles for taking care of yourself or enduring a bumpy flight!

Overall, I am grateful to have these healthcare “destinations” to guide me along my journey towards recovery.  Various medical appointments are my daily occupations of late, mixed in with wrapping a few gifts and trying hard to focus on serving others in this season of giving.   It really does help to put your eyes on the needs of others to help lessen the burden you may be carrying.  I was reminded of this in the middle of this past week, sitting alone in the chapel of our local hospital.  Ever visit one?  They are a sweet oasis when needed.

Thank you my Lord, Jesus Christ, for meeting me there in my own time of need.  So glad you always take a flyer on me when I call . . .  JJ

 

The Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

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

Gratitude for the little big things

So it’s Thanksgiving and nothing went as we had hoped: our trip to Texas to be with my hubby’s family got cancelled after my recent ER visit with severe back pain, alternate plans never materialized, and we had to cancel dinner reservations for tonight due to seizure spikes for most of the afternoon. Today is our wedding anniversary too. When I apologized for wreaking havoc on my hubby’s holiday, his response was, “well we’re saving money left and right!” And now you see who I am so thankful for this holiday.

I love you Steve.  Happy anniversary!

And Godspeed Gentle Readerfb_img_1480031316027. :J