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.”

 

 

Lurking in the tall grass

Here’s a little ditty on Lyme disease that I wrote and was published in the Spring 2016 issue of Canoe News (for the United States Canoe Association).  As it goes to print I just wondered if it may help someone out there?  Take care Gentle Reader, JJ

Lurking in the tall grass

by Julie Horney

Somewhere out there by the side of the river, next to your boatmobile or behind the garden shed may be a menace that could change your life forever. You may see it before it gets to you and you may not. It may be no bigger than the period at the end of this sentence!  Perhaps you have been bitten many times before and think you are immune to its wrath. Maybe. Maybe not. One day that could all change so take heed: this message applies to EVERYONE!

Lyme disease is the fastest growing infectious disease in the U.S. Lyme has been reported in all 50 states although it is most prevalent in the Northeast, Northwest, and Great Lakes areas. The Centers for Disease Control and Prevention reported that there were 300,000 new cases in 2012 and estimates based on clinical diagnosis suggest there are over 1 million new cases yearly.*
Lyme disease (LD) is called a “vectorborne” disease transmitted by the bite of blacklegged deer tick imbedded with the Borrelia burgdorferi (Bb) spirochete. LD is often complicated by Coinfections:  other bacteria, protozoa, and viruses carried by the same ticks. Lyme is difficult to diagnose because fewer than half of all patients recall a tick bite or develop the signature erythema migrans (bull’seye) rash; the routine Lyme ELISA screening test has up to 60% false negativity. Similarly, testing for coinfections is also plagued by a high rate of false negativity.  For example, research by the International Lyme and Associated Disease Society (ILADS) finds that joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter antiinflammatory medications such as Ibuprofen, joint inflammation is often masked. Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages leading to a chronic form of the disease which can prove even more difficult to diagnose and treat.
Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. While it may not be fatal, the consequences of Lyme and Coinfections can profoundly affect the quality of your life. In the words of my own Lyme Literate Medical Doctor (LLMD):
If you don’t treat it then your life will be hell.
Alright so now that I have your attention, let’s dig into the details.  Isn’t there a difference between an acute infection and a chronic infection? The answer is yes. And since only an estimated 50% of ticks carry infection, how do I know that I have been affected if I do not have any symptoms?  Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis but you can still have Lyme and not have any of those signs or symptoms! Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling. The key is in the careful medical evaluation of ANY  suspicious insect bite since they are all capable of spreading disease. (The CDC has stated that mosquitos can carry Lyme disease.)
The diagram below shows the proper procedure for removal of an attached tick.
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Removal of a tick from the CDC website****
Using fine pointed tweezers, grasp it from the side where it meets the skin, and gently pull it out in the opposite direction from which it embedded. My husband, Steve, and I each carry a pair of tweezers in our vehicles in addition to a First Aid kit for this purpose.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment.  (The anesthetic is why you don’t usually feel it biting you!) Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals and a study published last year documented that this can occur in humans as well.*
You may have the tick tested nationwide for free at: http://www.bayarealyme.org/lymediseaseprevention/ticktesting/
Taking a “wait and see” approach to deciding whether to treat the disease has risks.  If you do experience symptoms, you may even need to have more than one doctor evaluate them. Onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system and could be hard to cure. This is one case in which an ounce of prevention really is worth a pound of cure. Work with LLMD to identify the appropriate  treatment option if you have symptoms and if those symptoms persist. There is more than one type of antibiotic available, often beginning with 20 days of Doxycycline or Amoxicillin. Longer treatment is also an option per guidelines at http://www.ILADS.org
Prevention
Strategies for the prevention of tick bites are doable even for the avid paddler who finds himself standing in endemic areas on a regular basis!  First and foremost avoid known infested areas and keep to trails, boat launches, and areas cleared of brush/grass/bushes. Next, invest in clothing treated with permethrin or treat clothing 24 to 48 hours ahead of time with permethrin (which is waterproof through several washings) including paddling shoes.  Tucking lightcolored leggings or pants inside socks or fitted anklehigh water shoes can be helpful; tucking shirts inside pants is also recommended.  There should be no gaps in clothing such that skin is exposed.
An insecticide containing DEET is the standard repellent to use. The Centers for Disease Control maintains that repellents with the active ingredient of picaridin or oil of lemon eucalyptus are as effective as DEET for mosquitos but make NO CLAIMS for their effectiveness against ticks. Similarly, the EPA registers several essential oils and other natural remedies for safety but not effectiveness! Limited alternatives are available by searching their site.**  Assist children in the safe application of all insect repellents and skin checks too. And do remember to protect your pets: dog and cat fur can act like a “tick magnet” carrying ticks inside your home. Consult with your veterinarian about tickprotection for your pets throughout the year.
When outdoors, periodically inspect your clothing and skin for ticks.  Wearing lightcolored clothing will make tick identification easier.  Brush off those that aren’t attached and remove any that are with the method noted earlier. Some keep an adhesivestyle lint roller handy to pick up loose ticks on clothing or pets.  Once you are home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect your skin. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places including groin, armpits, back of knees, belly button, and scalp. This may seem strange but a quick skin check when sitting on the potty can be done anywhere, right?
Why bother? A Quick Story 
Perhaps it was the tick Steve removed on me about 6 years ago or maybe it was the zillion mosquito bites I’ve had over the years that caused my four years of hell with Chronic Lyme Disease?  We are not sure. At first we thought that when I got really sick it was the consequence of a biotoxin illness (exposures to blue green algaeinfested water when kayaking then mold at home). For four years I sought medical advice from traditional, functional medicine, and alternative health practitioners; we spent tens of thousands of dollars out of pocket to no avail. We found secondary issues to resolve that often go along with what becomes a “chronic illness” such as mercury toxicity, Candida, parasites, dental issues, food sensitivities, hormonal issues, and more. Several doctors gave me a psychiatric diagnosis; others attributed it to “fibromyalgia.” Oy vey!
Convulsive episodes every day for 2 to 5 hours has created a living hell for both of us. Sometimes the seizure attacks are triggered by environmental toxins or fragrances and other times it’s the simple act of going to bed or waking up in the morning. The thrashing has created secondary orthopedic injuries that require their own treatment.  Relief is generally temporary until the next round of torture coming within hours.  I had become largely homebound with a litany of noxious symptoms and until recently, bedbound for most of the day, a minimum of four days per week. Extreme dietary measures including a ketogenic diet did nothing. Family visits still require extreme avoidance procedures.
Less and less was I able to cheer my beloved River Bear by the shores of the waterways here in Indiana . . . “gooooo Steeeeve.” I thought that my paddling days, ability to work, and ability to function normally at all were largely over. Welcome to late stage, neuro Lyme . . .
Tis funny how nothing is wasted for those who believe in the Lord’s sovereignty over one’s life.  Initially I did have 5 weeks of antibiotics for a “clinical diagnosis” of LD even though virtually all of the fancy lab tests were negative. That first round of treatment in 2012 nearly killed me. I decided it wasn’t for me. But after treating all of those other conditions over the subsequent 5 years I would eventually become ready for intensive treatment of chronic Lyme disease with high doses of IV antibiotics.
At the time of this writing I am about 3 months into treatment. Placement of a power port by cutting into my chest wall was needed when the treatments got complicated. Neat huh? And at last there’s good news: the big turnaround has begun! Praise the Lord I am getting well!
Fellow paddlers, please take the prevention and treatment of Lyme disease seriously!  Chances are good that someday this will touch the life of someone you know.  Let not my experience be wasted!  Share this information with your friends and family. Take precautions then let’s get on down the river, the beach, the intercostal waterway to enjoy the sport we love.
Perhaps soon you’ll see me as the  one in a Stellar SR Multisport. :JJ
*Source: International Lyme and Associated Disease Society at http://www.ILADS.org
** https://www.epa.gov/insectrepellents/findinsectrepellentrightyou
*** Video for removal of a blacklegged deer tick: http://youtu.be/0wotB38WrRY
****http://www.cdc.gov/ticks/removing_a_tick.html

 

 

 

OC2 Blue Lake7.4.15b