On the Cusp of Many Changes

Here’s a post from last week when I almost didn’t know where to put my focus at any given moment.  Maybe it’s time for a brain dump, prayer, and some quiet before the mayhem?

Inside

The bout of pneumonia is largely past now with occasional coughing spells and nasal rinses to get me through the occasional flare-ups.  Unfortunately this illness has exacerbated the seizure attacks when trying to go to sleep.  It is definitely time for an adjustment to my specialized dental appliances however the trip to go see my Craniomandibular Specialist got cancelled due to the pneumonia.  Oh well, the fact that it has been raining in Florida virtually every day for the last few weeks including a tropical storm this week makes me glad we were not camping in all that mess.  Ever camp and travel in hot, muggy, wet conditions with a large dog?  Yeah, it would have been a moldy, muddy mess for sure!

Outside

We are in the process of selling our Livin Lite Camplite 16 DB that has served us well for the past 4 years.  We very likely will need to accommodate one or more family members during some upcoming travel so we are pursuing the financing of a more suitable travel trailer.  This is a week of finalizing the sale of our “Tin Can Ranch” and the purchase of the new unit, Lord willing, requiring many tasks and 2 long days of travel:  one day this past weekend to scope out the new travel trailer and another day soon to go pick it up.  Travelling a total of 4 days to my medical appointments in Florida was out of the question yet 2 shorter trips over the period of a week was more doable yet very tiring.  No problemmo.  My beloved River Bear is a skilled “bus driver” too!   The cancellation of medical and other appointments this past week (because we were supposed to be out of town!) has allowed for plenty of time for rest-n-naps!  Hopefully the new owner of the 16 DB will be able to solve her delays soon as well.

Things got crazy when late Sunday night in the middle of the Memorial Day weekend we found the perfect travel trailer and price point for our situation!  Within 24 hours of the posting of the listing and us finding it, we were on the road and ultimately making an offer.  Do you think that the Lord cares about the special thingies of our lives?  I submit to you that He does.  The morning of Memorial Day that we were scrambling to take a day-long road trip to see the travel trailer, Steve sold a performance surf ski for his River Bear Racing!  We delivered it to a gentleman along the shores of Lake Erie then headed south to check out the new Camplite.  A week later it was in our driveway!  However, the timing of this transition has found us with TWO travel trailers, much paperwork, a couple of trips to the Bureau of Motor Vehicles, yada, yada, yada.   We are a little nervous but trusting the Lord that things will also be resolved in time for our first camping trip in June . . .

Family

Looks like my family member in Florida will be visiting us for most of the month of July.  It’s still a month away yet many travel arrangements and accommodations are needed to both get her here and have her in our home.  Steve and I still must practice extreme avoidance procedures (changing clothes and showering when coming home from being away) which is tough on an older family member who needs care.  We will make as many preparations as we can before she leaves her home (in a moldy State), have initial provisions for her when she arrives, and hope for the best that her clothing can be sanitized and de-fragranced so she can travel and visit with us in July.  She has many fears, concerns, demands, yet is asking to come.  That is kind of weird since she has traveled with virtually no care just a few months ago and did alright.  So I will be very busy taking care of many details.  Thank the Lord I am less reactive to fragrance and trace amounts of mold, etc., and my activity level has increased some overall these past 2 months!

Home

Getting out in the garden continues to be a great therapy for me in many ways.  The vegetables are now in the ground including a new asparagus bed . . . until the bunnies find it of course!  No worries as I am working on my rascally rabbit defense system as we speak.  Overall I am still months ahead of schedule for Spring clean-up as compared to the past 6 years battling a serious illness.  I am humbled and grateful.  When my days in the past focused on basic household chores and a plethora of medical appointments and treatments.  Was really nice yesterday to sell a piece of medical equipment that I no longer need and then drive directly to a local nursery with the cash to purchase a lavender plant!  The rains today shall nurture the earth and my garden refuge wonderfully.  Thank you Lord for the lovely view out our windows to encourage me on my recovery journey.  You are soooooo good!

I am in awe of the overall goodness of these changes happening in our lives.  Steve an I are grateful and humbled, tired and excited, stressed and energized all at the same time.  So I’ll end with my happy place that provides refuge through it all.  (Can you find the pup in the photo?)

Thank you Lord for your blessings and goodness, love and care.  Gentle Reader:  He is so good!  JJ

Front Door 6.18

 

Slow But Sure

What will it feel like to be almost normal again?

Will the days fill with meaning, the nights rest with pleasure?

Alas I know not what tomorrow will bring —

So it’s it will be in the smaller moments that I will define who I am, who I will be.

At least as long as it is up to me . . . and little is of course . . .

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

An important decision came to me today that surprised me.  Oh there were the impossible ones that came in the hours beforehand which could be the subject of a tragic drama-blog here (ie. how to handle the seizure attacks overnight, sleep deprivation, heavy burdens, pain) but all that changed when I was catapulted awake at 8:17 a.m.  Could I make it to that appointment after all to the eye doctor?  They didn’t really cancel my appointment from that frantic message I left at 4:57 in the morning did they?  Well I was about to find out!

I pulled on some clothes; rushed back and forth throughout our humble abode; threw together the records, food, and drink I had loosely assembled the night before; and was practically out the door before my hubby emerged from shaving in the bathroom!  I’ll call the office on the way, I thought to myself.  And lucky for me my appointment time was still open for 8:45 a.m.  Holy cow.

Lord only knows how I function on days like these.  The headache pressed sharply into my skull with the plethora of medical testing and related tasks that fill my very full (medical) “work days” lately.  (That is a story for another time!)  Diarrhea delayed the first few steps of my eye exam as the technicians escorted me to rooms with various equipment, administered those dilating drops, etc.  So now my vision had become as blurry as my mental status.  Neat huh?  Sish.  Soon it was time to make some decisions about contact lenses and the potential replacement of eyeglasses.  Three years had passed since my last exam.  Clearly vision care has not been my priority of late!

I don’t even know her name yet her face will be memorable for many weeks to come.  The Optician in the big room with all those designer frames was an older lady with exquisite taste, professional temperament, mastery of her craft.  She quickly knew that I would benefit from some coaching in my selections and did so with style and grace.  I liked her eyeglasses, Silhouettes she called them, and decided it could be a new style that would work for me.  But was I ready for it?  Suddenly I realized that I was deciding about more than a functional facial dressing . . . no, I was crafting what presentation did I really want to make with my eyes, my facial expression to the world these days?

Makeup doesn’t work for me most of the time.  I do keep my hair colored and trimmed fairly regularly, styled about half of the time.  My clothing is rather casual favoring comfort not the fashion trends of the last decade.  Rarely do I adorn jewelry even though I had my own business making and selling colorful macramé jewelry for almost 3 years. My face has aged considerably.  The summer tan has faded.  I no longer wear contact lenses which used to give others direct visual access to my eyes, my soul.  My current eyeglasses with red and black frames are my only adornment, providing a little bit of covering behind which I can hide.

Soon I excused myself to the bathroom yet another time for a little moment of reflection.  Would I choose a new style behind which to mask my true self a little longer?  Yes it really does feel like that.  Would it be frames where the focus is on the shiny rhinestones or metallic finishes instead of the tender woman peering out from behind them?  Only after a few tears later did my choice become clear.  I selected the ones like those my teacher was wearing today.  Kind of like I did with Mrs. Heitkamp back in the 5th grade.  (Oh how I loved her so!)

Far be it from me to miss a moment where I can slowly but surely find a little extra meaning in what is happening and move forward too.  I really do want to be well some day and by golly I hope that my attention to the little things will help me to get ready for that day.  It’s just a pair of eyeglasses right?  Maybe so.  Behind them this time will be a little more of me and a little less of something else blocking the view of the woman inside coming back into view.

1 Peter 3:3-4 New International Version (NIV)

Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.

If you are in a battle right now too, Gentle Reader, please do not lose hope.  Please don’t hide.  Our Lord Jesus Christ yearns for fellowship with each of us as He dresses the heart, infuses the spirit, loves the broken, and leads us to His throne of grace full of splendor beyond compare.  We are beautiful in His sight!  One day I pray that we will see these truths ever so clearly as the pains of this world give way to His richest glory forevermore.

And for that we are definitely going to need sunglasses, eh?  JJ

sunglasses, hiding, worth in Christ, Christian, woman, identity, self worth, self esteem, illness, disability, overcoming, recovery, getting well

 

 

 

 

The way it should be

We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.  The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.  Someone named “John” supposedly signed for it but it was never found.  They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.  Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.  Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes.  In the end it’s not about the individuals really.  It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”  Yes indeed.  Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.  We are to love everyone else as unto the Lord.  Only He will never forsake us, never fail us, and deliver right on time every time. 

Alrighty then.  This rant is now over.  It is just before sunrise and my nurse will be here in a few hours to administer my care.  I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.  Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.  I will trust that the Lord’s will will be served once again.  So before I stop making any sense at all, I will end here.

It’s probably the way it should be?  JJ

 

The times of the day

In my profession of occupational therapy when I specialized in mental health, I often asked my patients to describe a typical day in his or her life.  A practitioner can learn a lot by the presence or absence of structure to one’s routine among other characteristics.  Someone who is depressed, for example, usually starts the day later with a disrupted sleep/wake cycle and has difficulty keeping a meaningful routine.  The days often lack variety, physical activity, creative pursuits/hobbies, social activities, appropriate self care, and regular breaks (for sleep and relaxation).  This can lead to a lack of satisfaction with how a person spends his or her time, an altered sense of identity in the absence of meaningful roles with which to identify, and can even erode the structure needed for at least part of the day that is needed to manage everything from daily habits (self care routines, for example) to emergencies.  The person spends an extra amount of energy just getting through the day and the day lacks enjoyment as well.  A person with an anxiety disorder or an addiction often presents with a completely opposite activity schedule generally characterized by chaos!  Perhaps the mental health issues came first?  Or was it the challenge of achieving a balanced lifestyle in one’s living dysfunctional environment that eventually compounded the issues?  It was my job to figure out the answer these questions and to design an occupational therapy treatment plan accordingly.

I have written on the topic of time management before but not within this context.  And not this personally.  I’ll leave out the assessment forms, graphs, charts, comparison tables, high math, and excruciating detail that would afford me a truly cathartic experience but provide you with a very boring blog post!  Perhaps this summary will be more meaningful than a formal occupational therapy evaluation?

This is what it is like to center one’s life around recovering from a serious illness.

Trying to get enough sleep to function:                   10 hours per day

This includes time that feels wasted trying to fall asleep, waking and go-to-sleep convulsive episodes, recovery time from the latter of those two, ruminating if I should take nap or not during the daytime (increase the hours if I am too chilled/sick to make a decision), waking up in the middle of the night to use the bathroom, additional episodes trying to go back to sleep after getting up, waking up when my beloved is snoring post exhaustion from caring for me, more additional episodes trying to go back to sleep, bedtime preparations (donning the blue light-blocking glasses to foster melatonin production, experimenting with bedtime supplements, arranging pillows and other positioning devices to minimize pain, pre-heating the mattress pad heater to minimize the shock of cold sheets that can trigger seizure attacks), preparing my emergency “lunch” bag of waking supplements/water/snack (to manage blood sugar drops, dehydration, and remedies that sometimes help), struggles to enjoy nighttime snuggles with my beloved husband until the episodes start, and most definitely:  talking to Jesus!

Medical appointments and treatments:                   3.5 hours averaged per day across the week

Medical activities include appointments with my Family Practice Physician/Chiropractor, other Doctors and professionals, IV antibiotic treatments at the hospital 3x/week and recovery time before I can go home, transit time, scheduling, communication (phone, internet, text, and messaging), coordination of transportation when needed, various lab test procedures, detox treatments, pain management-related services, and preparing all food/records/water/supplements/detox materials needed for each appointment.  “Treatments” also include various methods of detox; foot baths; salt/mineral baths; skin brushing; liposomal, topical and oral supplements; updating my daily treatment log; medical filing/billing; special nebulized and dissolved supplements; and an occasional use of essential oils.  (For the past month I have had an average of 7 medical appointments per week!  Eeeek!)

Food and nutrition                                                              3.5 hours per day

Includes making dinner and lunches for my husband daily; making separate, special diet for myself every meal (!); shopping/ordering/freezing/processing groceries from 7 or more sources; planning (research and list-making); portioning-and-freezing (since no cooked food can be stored for more than 24 hours); recipe conversions/managing recipes; updating quick reference sheets of current protocols to keep myself sane and moving forward; and symptomatic adjustments as necessary.

Research and learning                                                     1.5 hours per day

Online medical research dominates my thirst for both information and recovery.  I also include here the review of professional literature and various publications, blogging about various health topics at http://www.justjuliewrites.com, and the investigation of various treatment approaches and providers via a variety of outlets including social media.

Socialization                                                                          2 hours per day

Whether connecting with my really smart and beloved spouse (Steve), texting/messaging/emailing friends, talking with friends or family on the phone, sending someone a card, or the rare chance I get to meet with someone in person, socialization is a highlight of each day!  Skyping with a couple of gals regularly for prayer, scripture, some laughs and tears has become a treasure!  Social isolation plagued me for about 3 years of these past four years of illness when I had to stop everything:  Bible studies, church activities, womens’ retreats, visiting, most travel (when all of our family is out of State), etc.  For a long time my most regular communication outside of our home was largely limited to superficial chats on Facebook!  Many people have left my life . . .  Thank the Lord for those faceless acquaintances on Facebook who were there when I was awake in the middle of the night!

Christ-centered activities                                                  1 hour per day

Here’s another improvement in consistency that includes listening to our pastor’s messages online (since I cannot be in the building due to sensitivities), reading my Bible, prayer, some blogging, and the reading of inspirational Christian publications (ministry newsletters, etc.)

Extreme avoidance activities                                           1 hour per day

Extra loads of laundry, additional cleaning, wiping surfaces with a diluted ammonia solution, management of various masks, preparation of barriers to minimize exposures in public places, nasal washes, and a myriad of other activities not reflected above.

Physical activity                                                                  .75 hours per day

This is the newest addition to my daily routine and comes in the form of more regular housework, walking our dog once per week, 10 minutes on a stationary bike once per week, and some gardening.  This figure is divided by the total over 7 days:  lately I can move around a little longer about 3 days per week for more than a few minutes in a row, yeah God!

Self care                                                                                   .5 hours per day

The time spent caring for myself has only recently increased to improve my appearance sometimes.  It feels good.

Recreational and Creative Endeavors                          .25 hours per day

Herein lies my greatest weakness and greatest area of improvement since starting treatment for chronic Lyme disease.  Until now there hasn’t been much fun:  sewing was limited to mending (!); I couldn’t tolerate listening to music, was too sick for kayaking with Steve (my River Bear), and reading consisted only of my Fine Gardening magazine, my hubby’s war-hero novel, and a few monthly local gardening newsletters.  I sold my jewelry business last Fall and my creative juices stopped as the illness got worse.  Maybe this summer I will actually be able to work in the public garden for which I have volunteered?  Stay tuned!  Things are looking up!  This past week I was able to work in our own garden for 3 hours:  a very physical activity as well as something that I love!

So putting on my occupational therapy hat for a moment here is my brief O.T. Assessment:

The loose schemata above reveals my obvious need for more physical, non-medical self care, in-person social, and recreational/creative activities to achieve a balanced lifestyle.  Incorporating other people into the ones that I am able to pursue will probably make everything more fun and meaningful in addition to increasing social time.  Success will depend upon the ability to avoid noxious exposures until my reactivity goes down; gratefully we are entering into the warmer months here in the Midwest so doing things outside is more possible.  As I eventually spend less time in medical and medical research activities, I hope to pursue more of a primary occupational role either by developing my Two Step Solutions business or returning to traditional employment in a suitable environment.  Volunteer work perhaps at our local Extension Office may also increase.  Keeping my occupational therapy license current, continuing to learn, developing some internet and e-commerce skills, and writing, Lord willing, are strengths that may add to the possibilities without too much additional retraining.

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

I am grateful to my fellow sojourners who have kept me sane when things have been out of whack! I look forward to finding a way to give back to them and others; perhaps this would be by sharing how the Lord crafted this story or simply living a meaningful life after serious illness.  I will definitely take the time I need to make a good transition knowing that there will be some good days and some that are less so.

Overall, can you hear the hope in my voice, Gentle Reader?  Yup.  Lord willing, I am getting well!  JJ

The Missing Needle Nose Pliers

 flat nose pliers, jewelry making, o ring, jump ring, making jewelry

Husband asks:   Where are my needle nose pliers?

Wife answers after a long pause:  I might have sent them to Minnesota . . .

And then another looooooong pause follows with:  silence!

Sometimes the logic of the moment doesn’t make sense to anyone else but oneself.  Know what I mean?  Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need.  I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings?  Besides, I did ask him about it didn’t I?  He did not remember me asking him.  I did not remember it exactly either.  Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?

Well maybe not.  Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart.  Win!  Win?

We employed a similar rationale four years ago when I never really recovered from acute hepatitis.  For more on that story, see the About Julie page here.  It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill.  Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin.  There would be no easy solution(s) to this complication.  I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves.  A dozen or more local folks using their own machines noted benefits.  I did not.  I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes.  This weekend there have been 3 major and several minor wretched episodes within the last 24 hours.  Lord have mercy!

Beam Ray, Rife, sound, light, wavelength, alternative medicine, Ray Rife, Lyme disease

Beam Ray Rife machine

 

As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners.  I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth.  Even so I feel like a beaten puppy!  But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months.  Seven weeks into the treatment I can tell you that there are some positive changes.  Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall.  This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks.  (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.)  I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult.  Whew!

So there ya go.  A funny story, an update, and a little hope beyond the saga of late.  Lord willing, I am going to get well!  And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden.  By the way, Spring weather is forecasted for this week .  Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday.  The garden pup is ready.  You could say that I’ve traded the needle nosed pliers for an aluminum shovel!  So let’s get to it . . .

I wonder how those carrots are doing that got left in the ground last fall?  Having a little extra time in the soil should make them as sweet as candy by now dontcha know?  :JJ

life began in a garden