Gift idea to encourage those with chronic illness

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life.  In this book, I share some of the more meaningful and encouraging moments of my journey as I sought to draw strength from outside of myself to endure them.  My hope is that you or your loved one will find strength and hope that transcends the often difficult day-to-day experience for yourself or a loved one coping with a debilitating illness.  I also hope that you will consider the hope found in a personal relationship with God.  His presence in One’s life can make a difference in where a person lands when this particular journey of life is over.  Will we have peace or will we have despair?

With a sincere heart it is my privilege to share these short vignettes with you.  Let not these trials of ours be wasted, eh?  Gentle Reader, are you ready for enduring hope that goes beyond what we can see?  If your answer is, “Yes,” then I invite you to read, Hope Beyond Lyme:  The First Year.  May it also encourage you to learn that you are not alone, not today, not ever.

Discover from a fellow sojourner, her most meaningful and encouraging moments to encourage you or your loved one battling a serious illness.  Find in one handy eBook (available in 9 different formats) the best blogs updated from this site plus several Bonus Pages too!  Click on the link below for more information.  Take care,  :J

Hope Beyond Lyme:  The First Year

Hope Beyond Lyme:  The First Year eBook now available on Smashwords and Amazon.com
Hope Beyond Lyme: The First Year eBook now available on Smashwords and Amazon.com

It’s all I have left

I hit another wall today:  one that reminded me of my inability to control or think my way out of pretty much anything.  Have you been there?

Amassed in noxious symptoms after finally venturing out of the house on my own today, I had thought things were going pretty well earlier.  I was becoming sicker so I came home to unpack my stuff from some errands and rest a while before making dinner.  Losing the next 3 hours in bed after coming home was not what I expected.  After all, I am getting better right?  Well I’m not sure just yet.

Sometimes a person just has to stay focused on a moment as small as one breath in time.  At least I could breathe this time when the “non-epileptic seizures” hit.  Gratefully I had my phone with me and the app for Harvest Fellowship  messages would fill my mind with the Word of God.  When there was a break in the action I could get it going, listen, and maybe relax.  The darkness of my spirit lifted somewhat as Pastor Paul Mowery began to speak.  I missed my husband who was away at the midweek church service.  To text him to please come home did cross my mind.  But then I realized that the One I really needed was already here . . .

I cried out to the Lord and He met me there in that dark bedroom refuge.  Our pastor’s words from the Book of John about abiding in the love of Jesus Christ filled me like a cup of warm cocoa running through my veins.  Then when the recorded message began with a recounting of the disciples “visibly shaking” as Jesus teaches of His upcoming death, resurrection, and perfect peace I lost it.   The seizure-like attacks had already been in a continuous pattern of havoc for over  30 minutes.  “Visibly shaking?”  Yeah.  I get it.  Only I am not only afraid.  I am sad.  I am grieving the loss of so much with this illness.  I am broken.

27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.  (John 14)

Yesterday I said to a friend on Facebook that the shortest verse in the Bible is John 11:35, “Jesus wept.”  The God of the universe was displaying His human compassion for the death of a friend and for the terrible wretchedness that we must endure in our earthly lives.  I shared this to encourage her that the Lord sees her pain over the death of friends or their loved ones recently.  This verse speaks to me today too.  My Lord sees my suffering, so much loss (i.e. time, money, fellowship, activities, health, fitness, and intimacy with my husband), heartache, and weakness.  He grieves yet He knows my heart and loves me more than I can ever know.  He is not the God of this world so there will be pain and suffering in this world.  No one escapes these.  Jesus Himself will come again in glory and gather those who know Him to be with Him through all of eternity.  When I die I will see Him and be in His glorious presence forever.  And while I am still here, I know that He will use all of this for my good and His glory too:

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.   (Romans 8)

Right now I don’t feel as bad as I did earlier this evening.  It’s very early in the morning and I feel like some things got worked out this evening.  It’s as if my Lord and King has me cradled gently in the shadow of His wings and that’s a great place to be for restful sleep.  All of the other things that I write about in this blog (my eBook, online jewelry) should never take the focus off of what and Who is most important in my life.  Jesus rocks!

Very simply I’ll close with this:  I love you Lord Jesus Christ and I want everyone who reads this to know you too.  After all, when I do take my last breath it will be all that I have left.  Gentle Reader:  how about you?  JJ

Parking Lot Poem #1

Sure was a tough time in my life when transitioning from married life to single life.  The refining fire was intense, laden with more trauma than I ever thought I would endure in such a short period of time.  Separation, divorce, 5 moves, 4 jobs, 2 injuries, a condo fire, death of 3 family members, and my mother’s cancer story contributed to over-the-top stress.  I have so much to be grateful for these days, that’s for sure!

So how did I cope?  First my faith in the Lord grew stronger.  Second, I needed counsel and found it through a few remaining close friends and a professional or two.  Three different support groups related to grief and divorce convinced me that it was not me who was going crazy:  my life circumstances were crazy!  I began journaling more regularly too.  Perhaps if blogging was in vogue in 2004 I would have started mine back then as well.  But one of the most useful tools was the smallest:  a little spiral notebook in the console of my car . . .

I’m not quite sure where the idea came from to journal in my car.  I found a small pocket-sized steno book called the “fat lil’ notebook” and kept it with me for making notes to myself.  One day it hit me when I felt completely lost that maybe I needed to write a little something more to clear my head, right there in the parking lot on June 10, 2004.  The first entry that I can find went like this:

It’s another parking lot poem this noon

Alas a month later in the rainy part of June.

My new job must end to save my integrity

And the work ethic I’ve carried with me for decades.

So now which way to turn, oh Lord

The great authority and provider of my life?

This makes no sense and yet it does:

To trust you no matter the chaos my days do bring.

For in the end or looking back when down the road,

I’ll see this day as one leaned on faith

And be glad I knew you when and where

I napped in the parking lot before a great swim once again.

 Years later it all made sense to me why the parking lot poems were so meaningful to me.  When we take a drive somewhere, we park our cars and go into a business or residence of some sort and leave our vehicle for a time.  We return later, put our belongings somewhere near us, turn the key in the ignition, and take off for our next destination.  The time in the parking lot or driveway is a point of transition from one destination to another.  We have completed one activity, gathered our things, and prepared to make our way to the next location.  During the short time when we are sitting and stationary, we might have a quick thought about what has transpired (did we accomplish something or did we encounter difficulties?) and think about where we are headed next (how do I get there and who will I see/what will I do there?).  The brief moment allows us to re-group, re-gather, re-launch until it’s time to go back home again.  This time goes quickly for most folks, I reckon.

That time did not go quickly for me at all.  I often got stuck in the parking lot when I was trying to move from one activity to the next.  I cannot explain it exactly.  I just know that the overwhelming burden of my life at that time made it nearly impossible at times to make transitions, change activities, or gear up for the next item on my “to do” list.  Have you ever experienced this Gentle Reader?  I just could not move on.  I couldn’t even tolerate music or news on my radio as it became like noise in a crowded bus terminal laden with diesel fumes.  I would often sit there in my little black race car (aka Honda Civic) in silence for what felt like a long time before I organized my thoughts and initiated the steps to get going again.  This is where the Parking Lot Poems changed everything.

Poetry is a looser form of communication than prose.  There aren’t as many rules in free form poetry, you can stop and start at any point, and emotions can blurt themselves onto the page in incomplete sentences.  It gets the words out quicker, eh?  Do you want to hear something else crazy?  After that 3-year period of time when writing poetry was such an instrumental tool in coping and healing, I stopped writing poetry.  I guess I didn’t need it anymore.  Oh I tried a few times but the words simply did not flow freely.  No more parking lot poems for me!  My favorite poem that was initially written in a parking lot became part of a 9-foot mural on a wall in my home, the one with the custom window treatments I wrote about earlier this past week.  I’ll save the story about “The Wall” for another time.

For this early morning writing, I’m just using my newer friend of blogging instead.  I am having trouble sleeping this day due to some noxious events.  Sure got some good thinking done tonight though and for that I am grateful.  Better go park myself back in bed before the sun comes up and try to make a go of sleeping again.

Thank you Lord for your gift of words.  Your Word is how we know you and fall in love with you.  Hmmmm.  Reminds me of a song.  May I sing it in my heart to you Lord?

Words

From one extreme to the other

So much of the self-help genre coaches the weary traveler in achieving a blissful and balanced lifestyle.  When I was an occupational therapist working in psychiatric hospitals, I would often lead a patient group in a goal-setting exercise entitled, “Achieving a Balanced Lifestyle.”  It was always my favorite therapeutic activity to do.

Each patient received a worksheet with the title at the top followed by two large circles, one at the top of the page and one at the bottom.  Both circles were divided into the same 5 sections labeled:  Physical, Emotional, Social, Intellectual, and Spiritual.  The exercise began with the group members filling in each section of the top circle with activities that fulfilled that particular need.  For example, Social might include visiting friends and Spiritual might include Bible study.  Often patients struggling with mood disorders had very little in the emotional and social areas.  Persons with depression had very little on the page at all.

The lower circle was for goal-setting.  My hope was to help the individual begin to see beyond the crisis that led them to the hospital and think about what he or she might do during the day to use time effectively as a coping strategy.  I only asked for one activity in each of the sections.  Of course we had already brainstormed a list of activities as a group and these were written on a large white board at the front of the room.  Eventually each person had a plan and something to share with the rest of the group.  Since so many things are discussed in a person’s life during a short hospital stay, I asked each person at the end of the session to name just one activity as a starting point.  Virtually everyone was able to identify something, a place to begin.

Geez, if I were to complete my own plan for achieving a balanced lifestyle, I wonder where I would begin?  Let’s see, I’d have one worksheet for a sick morning and one for a stable afternoon.  Then there would be another for when I’m most likely to be functional in the middle of the night and another during IV magnesium treatments at the hospital three times per week.  I might be tempted to tear the page in half and add various goal-setting scenarios based upon my feelings at any given moment.  IN OTHER WORDS, setting goals sometimes just doesn’t work!  My best intentions are often met with a 180 degree turn of events.  This requires me to live in the moment on a moment-by-moment basis!

Last night was a crazy example of this.  At 9:00 p.m.  I was with my husband sitting around a campfire outside at our friend’s house roasting hotdogs over the fire.  Within the hour we all were wielding shovels and pitch forks emptying the bed of my back truck of yard waste into a ditch on his property.  But within another hour I was writhing on a bed seizing with convulsions, unable to speak or move very much at all!  The next hour was filled with my husband providing virtually all of the physical care needed to transport me to the bathroom, wash away the sooty residue from my hair and tender frame, and bring nourishment for me to eat huddled under the covers in bed.  Sigh.  So what was my goal by the end of the night?  Get up to use the toilet with my own strength.  Check.  Goal achieved for the Physical section of my paper-and-pencil exercise in my mind.

Almost every day is like this.  Yes, I’ve had 3 days with no seizure episodes in the past 3 weeks and there are about a half a dozen fewer episodes per week overall.  I guess if I could stay in my safe home bubble, I might be able to knock down a few more.  Yet after 2 years of illness I tend to forget and “go for it” when I feel stable, trying to get out of the house to do something meaningful not realizing that the setback pushes me back to “Ground Zero” of the recovery process.  The goal is to not react at all.  Each reaction re-sets my immune system at some arbitrary level, sensitizing me to be more vulnerable to the next exposure.  I may be able to anticipate that exposure and I may not.  Sometimes the cause is hidden.  When our friend placed a log covered with some type of blue fungus on the fire, I had a feeling something bad could happen at some point . . . but we were having fun  . . .

Such is life in the world of Chronic Inflammatory Response Syndrome when you have a genetic disposition that is vulnerable to mold illness.  I have no idea anymore where the Lyme disease fits into the matrix of illness.  Right now the focus is on the mold illness.  And today the focus was on recovery.  Then this evening I got a do-it-sick burst of energy and spent 3 hours washing the composted dirt out of my truck!  Later I made dinner, kale chips (yes & they are pretty weird actually), and a lamb/turkey meatloaf for tomorrow.  I’m sitting here sore, pleasantly fatigued, and sensing a pre-tic syndrome rising up from within.  And so it goes from one extreme to another once again.

Perhaps a better exercise than filling out a worksheet would be to meditate on some Words of wisdom:

5 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.  (Proverbs 5)

Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails.  (Proverbs 19:21)

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  (Jeremiah 29:11)
In their hearts humans plan their course, but the LORD establishes their steps.  (Proverbs 16:9)
So I end with my charge in all of this:  Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ.  (Philippians 1:27)  Whether it’s with tears hidden in the soapy shampoo water or standing outside in the dark soaked with silt-laden overspray from the tailgate of a truck, I will lean into my Jesus for the strength to carryon.  This kind of power is supernatural.  There is no way I could endure all of this and persevere on my own; I am too broken.
I wonder if you have been there too, Gentle Reader?  Have you been in a place where you must do something but you cannot do anything?  This is the very place to come before the throne of grace and meet Jesus, face-to-face.  His infinite love will transform the moment beyond what we could ever imagine, ever wish for, ever plan for.  We only have the moment in which we are breathing anyways.  When your time comes as I have described mine here, I do pray that you will reach for the One who understands and can make a difference now and forever in the course of your life.  His loving presence will transcend the circumstances and lead you forth, with purpose and meaning.
He did it for me.  He does it for me every day.  Perhaps He has carried you before you even realized Who or What was guiding you?  He is here for both of us, transcending the extremes of our times.  I can think of no better way to achieve peace.  Can you?

Helps to laugh!

Seizure cartoon