Pursuing The Next Big Thing

Well I gave a detailed rationale in a recent post for me pursuing TMJ/TMD treatment to help alleviate intractable seizure attacks that have plagued me for the past 6 years.  Basically if the cranial nerves that exit the brain at the top of the neck are pinched from tight or misaligned muscles and tissues around the face, neck, and jaw then pain and a myriad of neurological problems can follow.  A physical trauma, especially auto accidents, often starts the problem.  Dental professionals who specialize in this area can provide relief for movement disorders such as Tourettes Syndrome, Parkinson’s Disease, tics, dystonia, and atypical seizure disorders using various dental appliances and therapies.  My research into this began a few weeks ago after an Ear Nose and Throat Doctor suggested I look into issues related to one of the twelve cranial nerves (vagus); I found that my symptoms involved seem to relate to several of them and require a broader, more functional bio-mechanical perspective.

Sooooo, since TMJ pain began for me after an auto accident in 1996 and worsened with convulsive episodes beginning in 2012, I brought up this topic with my chiropractor and brilliant primary care doctor this week.  Both agreed that specialized dental appliances are a good avenue to pursue.  Both have provided supporting medical documentation to support my case and the latter reviewed the Curriculum Vitae of the Dental Specialist that I have selected (after interviewing 13 dental professionals from around the country!).  My hubby and I are prayerfully preparing to proceed accordingly, with faith and confidence that the treatment will be effective in due time.

Once we made the decision, we had no idea what would happen next.  There are significant unknowns in this process, not the least of which is a significant financial commitment for specialized care out-of-pocket and for out-of-state travel for nearly 3 weeks.  We just knew that I needed a new treatment direction and that these new interventions seemed compelling to address many problem areas (’cause hey, even chewing food can trigger episodes!).  The next steps were for Steve to approach his employer for an extended leave of absence and for me to start scheduling appointments, making campground reservations, contacting family in the area, and so on.  Gentle Reader, it’s only been two days and the following blessings have already come to light:

Steve’s employer granted his request for a leave of absence and will provide a company computer so that he may work remotely while we are away.  Harris’s company headquarters is about 2 1/2 hours away from my new Doctor’s office by car and for the second week of our trip, Steve will be able to share an office there with a former coworker he knows who transferred there 2 years ago.  Awesome!  And guess what?  His employer is located near the Kennedy Space Center where Harris will be launching a ROCKET FROM CAPE CANAVERAL right in the middle of the 4 days we will be staying in the area!  Holy cow!  How cool is all of that?

Just a week ago, I finally was able to get in touch with a best friend from my childhood with whom I have not spoken in around 37 YEARS.  Guess where she, her sister, and her Dad live?  Very close to the same town where I will be having my treatment!  They were a huge part of my growing up years, especially after my parents were divorced when I was barely a teenager.  Tammy and I spent hours playing house or school on her back patio after dragging outside a myriad of furniture and supplies from both of our homes.  Sometimes we had just gotten things set up and her mom would come home from work so we had to put it all away again!  Then there was the backyard carnival we made to raise money for the Muscular Dystrophy Association.  Her little sister, Patty, dressed up like a gypsy to give words of wisdom in the “fortune telling” pup tent!  Their Dad was so very sweet to me when I would see him working in the yard, carrying tools along the sidewalk between our houses.  His kindness was very comforting at a tender time in my life.  All are good memories indeed.  I look forward to seeing each of them!

Halloween, 1960s, 1967, front porch, Linville, Warren, Michigan, Kids, children, costumes

From right to left: Julie, little brother Rob, Tammy, Tammy’s little sister Patti, and another neighbor at Halloween in 1967 or so!

If that wasn’t enough, we also hope to see an Aunt of mine who has lived in the area for decades.  Steve and I last visited her 5 years ago when I was near the beginning of this illness.  When I talked to her on the phone about maybe seeing her, she disclosed that she is struggling with a serious brain disease and having difficulty functioning.  My heart sank.  She explained quite candidly that her ability to perform activities of daily living has become increasingly compromised over the past year such that she doesn’t want to live alone anymore.  She has not been able to obtain assistance from her medical providers in obtaining the supports she needs.  It is not clear how aware my two cousins are of her condition; I may be the first person to visit her home for many years as all of us live 1,000 miles or more away.  My heart is breaking for her while my mind as a licensed occupational therapist is churning with the possibilities of what this all means.  Steve and I will start to sort this out by going to visit my Aunt with the goal to simply love on her, bring a meal, and visit for awhile.  Lord knows what will follow thereafter, likely some phone calls to my cousins up north . . .

Gee, if all of this has transpired in just 2 days, I wonder what awaits us in the next week?  We are praying continuously about everything mentioned here as we begin to make our travel arrangements.  There are repairs needed on the travel trailer and much to do.  What is certain though, is that our Lord Jesus Christ is already paving the path before us.   He always does, of course, and this time we are in awe as we can see it unfolding as we speak!  Very likely we will need to raise some funds for my care so stay tuned for the details and please pray with us as we embark on this magnificent adventure.  I have been through dark times before and have seen the Lord miraculously “restore the years the locusts had eaten.”  (Joel 2:25)  Sure looks like He is moving again in our lives right now in a big way.  Thank you for coming along side me with each post here, each little tear.  You make a difference just being there reading this, tracking my story.  God bless you for hanging in there with me!

Gentle Reader, I have hope again.  :J

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

 

I got to Walmart today

Days where I just exist

Give way to tears

More often than not

Everyday now.

Waiting no longer suits me

Although it is my garment

Worn through hopes dashed

Threadbare to no end.

I study like a school girl

Not sure where the letters lead

Thinking this is “it”

And it is not.

Surely it is darkest

Before the break of day

That is my hope I guess

And my Lord too.

So little do I do

As the grass grows tall

Alone too much too

At least I got to Walmart today!

Walmart, shower, Target, Meme, pajamas, old man, glasses

The Long and Winding Road

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 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