When the hospital comes home

We all need our spaces, our places of retreat.  Is it that corner where you curl up with a favorite magazine or book?  Maybe there’s an oasis in the backyard, coffee shop, or park down the way that brings a bit of renewal sometime during the week?  Perhaps in a busy household a mother of small children finds solace in the bathroom behind a closed door when sitting for a spell?  During a stressful transition in my life I would drive to downtown Chicago on a Sunday just to “see water” along Lake Shore Drive.  Yes, those moments are precious and necessary for sure.

For those with a special love to share one’s life, the hours alone together can bring refreshment in a whole new way.   Take a moment to enjoy the words of Christopher Marlowe who invites his lover to come hither to a far away place . . .

 Come live with me and be my love,
And we will all the pleasures prove
That valleys, groves, hills, and fields,
Woods or sleepy mountain yields.

And we will sit upon the rocks,
 Seeing the shepherds feed their flocks,
 By shallow rivers to whose falls
 Melodious birds sing madrigals.

And I will make thee beds of roses
 And a thousand fragrant posies,
 A cap of flowers, and a kirtle
 Embroidered all with leaves of myrtle;

A gown made of the finest wool
 Which from our pretty lambs we pull;
 Fair lined slippers for the cold,
 With buckles of the purest gold;

A belt of straw and ivy buds,
 With coral clasps and amber studs:
 And if these pleasures may thee move,
 Come live with me and be my love.

The shepherds' swains shall dance and sing
 For thy delight each May morning:
 If these delights thy mind may move,
 Then live with me and be my love.

The Passionate Shepherd to His Love
Christopher Marlowe

Ahhh, the delight of romance!  Is there any greater pleasure in life?  Well maybe yet perhaps we can agree that there are very few?  😉

During these years of serious illness, my refuge is largely our home.  For now what was once our retreat for romance and the stressors of life has been transformed into a place for a different kind of healing.  Indeed we have created a safe haven from noxious exposures that can make me quite ill elsewhere in the world.  I have become increasingly grateful for the work I had done a few years ago to decorate our dwelling place in pleasing colors with a lovely landscape to view out each and every window.  Little did I know when we were settling in here that I would spend most of the past 4 1/2 years housebound.  Little did I know that right when I started to get a little better, the comfort I found at home was about to drastically change.  I really don’t like it.  See what you think.

Three days per week a nurse comes dressed in medical garb to administer IV infusions.  Our living room morphs into a hospital outpatient clinic for nearly 3 hours with linens draped over the furniture to protect me, to protect her.  Packages arrive via Fed Ex at least one morning per week with bags of drugs on ice, medical supplies, and no presents, no card from mom.  The pup with the big brown eyes is sequestered in a back bedroom lest her presence or fur flying through the air risk breaking the sterile field needed to access the power port in my chest wall.  She whines and yelps for a time then drifts off to slumber as the drip, drip, drip of the IV bag empties into my body.  Gratefully my nurse is very skilled and unassuming.  She has the perfect temperament for all this stuff too.  I just wish we were out shopping instead, ya know what I mean?

I have tried very hard to pack everything up afterwards and in between home care visits.  The IV pole goes behind a door in a spare bedroom and the supplies fill a couple of bins and boxes in our office.  The laundry quickly goes into the washer after Michelle leaves to diminish the fragrance of her favorite laundry soap that lingers no matter how hard we try to avoid it.  Her shoe covers and all the used medical supplies get tossed into our makeshift trash bin and sharps containers.  Within the hour after my “visit” ends there is no trace of the intrusion that these treatments bring to our private spaces (except for the wooden sauna that rests where an entertainment center once was, that is!).

Oh well.  Thereafter with a foggy fatigue and soreness above my breast (from accessing and deaccessing the port each time) I make my way to bed for a very long nap.  The seizure attacks are coming down giving way to a time of rest.  At least I can retreat with a little more peace to the one place that remains undisturbed!

Perhaps one day I will find an internal space that refreshes when those around me can’t quite get it done.  Oh wait, yes, there it is in the shelter of the wings of my Savior, Jesus Christ.  He protects me and refreshes me from the trials, the troubles all around.  With Him I can face another day with renewed strength and courage.  You are my resting place, my hiding place, my refuge, my shield, my home.  Sigh.  This is good.  This is really good, thank you my Lord Jesus. With you I am truly home no matter where I am.  JJ

Psalm 142:5 (NIV)

I cry to you, Lord;
    I say, “You are my refuge,
    my portion in the land of the living.”

 

 

The glove on the sidewalk

In Christ there are no “coincidences,” just Divine touchstones:  those events orchestrated by the Lord for our good, for His glory.  Sometimes we get to see His hand and sometimes we don’t.  And other times things look too dark to come from our loving, sovereign, holy Father.  These can all be quite mysterious this side of heaven, eh?  Less so for me these days.  My faith has grown to trust the Lord in all things (even the ones I don’t understand).  Allow me to elaborate from my world of late.

I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage.  I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar.  Yes, it was the glove I had “temporarily misplaced” last week!  But how could it have remained here in this sort of prominent place unnoticed for seven whole days?  Who knows?  Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement.  The staff person in the office helped me figure it out.  I was dumbfounded!

Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home.  When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this.  Today was treatment day number 2!  Whew and thank you Lord!  I have been taking more naps since it all came together probably due to the stress of it all more than anything else.  There is still more to do but hey, no worries.  I’m on it!

Huber needle

The research the Lord empowered me to do has become another blessing.  First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port.  My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3.  No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon.  Now that’s service!

home, infusions, IV, treatment, Rocephin, ceftriaxone, home care, home health, nursing, port, power port, hospital, treatement, Lyme, disease, chronic
My new treatment space!

In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic.  The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately.  This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions.  As it turns out, I tolerated the combined treatments just fine.  So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps.  I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead.  Cool beans.  But all this still does not mean that I want to become a nurse ya know!

The Lord is in the details of our lives, Gentle Reader.  He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too.  Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff.  We need to move the space from “God is nowhere” to “God is now here.”  He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials.  The trials may be the very place when we may see Him the best.  Take a look this week and be sure to tell me about it, k?  JJ

Psalm 139.17.18

 

 

A New Project to Keep Me Sane

An idea for a new project has come to mind so when I’m not here, I’m brain-dumping in Microsoft Word.  The topic:  helping others with chronic illness with the day-to-day practical barriers to living.

My career in occupational therapy included evaluating the daily “occupations” in the lives of my patients and the skills he or she needed to get through the day.  Occupations can include homemaking, pre-driving skills, functioning on the job, and more.  When the person was unable to complete the steps, tasks, and activities needed to perform those daily occupations then O.T. was offered.  Treatment began during an inpatient hospital or rehabilitation facility stay and continued in outpatient or home care therapy sessions.  I have had the privilege of working in all of these settings.  My favorite was always home care.  When you are working with a patient in their own living situation, the evaluation is often more accurate and the remediation more meaningful.   This was my part time work when I became sick on October 11, 2011.  Within a few months I was unable to continue.  Since then the remediation has focused on my own home and health!

I am grateful for my 30 years in occupational therapy practice.  The Lord led me to a profession as a high school graduate that would provide a fulfilling career my entire adult life.  I enjoyed serving others in both psychiatric and physical rehabilitation settings, with adolescents to older adults alike.  I have been with a patient just moments before she passed away and another when he realized that his disabilities would be permanent.  To look into the eyes of someone about to lose their independence because of his medical condition and another who needs a little nudge to realize she is ready to return to work are equally humbling experiences.  And these days when I look into the mirror, I have some of those same discussions in mind as I consider the challenges of my own life these days.  Gratefully, I have a rich variety of experiences and resources upon which to draw.  In many ways I have not had to struggle as much as my patients because of my training as an OT.

For example, I intuitively know the importance of planning ahead in the evening for the next morning.  If I wake up with seizure attacks and my husband is alone, I generally have a plan in place to meet my basic needs in case I would be unable to leave the bedroom.  The night before, I usually pack a breakfast with my a.m. medications, enough water and food (following my special diet) to make it through the first part of the day.  Low blood sugar can exacerbate my symptoms so this strategy has become one of numerous methods employed to cope with my limitations of late.  I am grateful to the Lord for the skills He has giving me, His help in my time of need, and His leading me to a profession that has allowed me to cope through many trials in my life.

So why don’t I see what I can do to help others with this knowledge?  When I did a preliminary search on coping strategies, I found a great deal of resources on the topics of emotional, psychological, and social skills for persons with chronic illness.  This was a great discovery and I benefitted from reviewing these blogs, articles, book reviews, and so on.  But where were the day-to-day strategies for example, in preventing falls when dizzy because of a medication side effect?  In my role as an OT, I could point to many disease-specific organizations that might have such resources, for example the Alzheimer’s Association or Multiple Sclerosis Society.  This information is also easy to find within the disability community.  But what about a person with Lyme disease?  Sick building syndrome?  A temporary illness?  Persons with a serious, multi-diagnosis, ongoing illness numbers in the hundreds of thousands or more.  I see them on Facebook forums, WebMD, and the like.  I would like them to know that there are simple strategies to reduce their daily struggles, improve their ability to function, and in doing so also keep myself sane while on the path to healing.

We have a saying within the therapy profession that goes like this, “therapist, heal thyself.”  While this is not entirely true, certainly a therapist can do pretty well at rallying some resources to get the healing process going.  My hope is that by sharing some practical information with others I will not only keep myself sane as I write but also gear myself up for returning to a productive life someday soon.  The complications of my own illness make it difficult to concentrate, use various thinking skills after several episodes per day.  The challenge of writing, editing, researching, and publishing my first eBook did help fire some neurons in a meaningful sequence here and there!  I’m thinking I’ll try it again.

If this resonates with you, please let me know what you would like to see in such a handbook.  The current outline begins with the morning of a typical day and continues through all of the activities of daily living until bedtime.  I will include information on fall and injury prevention with references for sample adaptive equipment, such as a sliding tub transfer bench or automatic night lights.  Many of us will be familiar with parts of the information.  My hope is that by systematically reviewing a person’s typical home environment that there will be new insights:  a little something for everyone and his or her caregivers.  I have seen the power of a simple strategy in making the day a little brighter in the life of a person battling a serious illness.  Maybe this will even lead to a forum where there will be an exchange of information as well.  I am looking forward to the possibilities . . .