Tag: recovery from illness

Counting on Muscle Memory!

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Completing 30 minutes of the Metabolic Effects hybrid workout DVD with repetitively lifting 5 pound weights, reflected the highest level of fitness I had achieved in my life.  The increased upper body strength provided a great foundation for hitting the kayaking season with my River Bear husband just 2 months later.  We would go out with the local, recreational kayaking group virtually every Tuesday night from summer through the Fall.  I even sampled one member’s cookies after a night of paddling:  a sweet treat, in a peanut butter version for health reasons of course!

While everything was not perfect at that time, I mean I still had chronic pain and needed a couple of days to recover afterwards, life was as good as it had gotten.  I was working part time, enjoying gardening in a real home (not a condo or townhouse), and blessed beyond measure with a loving husband and church family.  My father had died earlier in 2011; that was bittersweet.  My dad died  2 months after I got to see him in person for the first time in 30 years!  So while  I was grateful for the reunion, the healing, and the new relationship with him, I was also very grieved for his passing.  And near the end of that year I had begun the Master Gardener classes at our local County Extension Office.   To become a Master Gardener was a new goal borne out of my mother’s love for gardening passed onto me.  All in all, it was a good and important year in my life.

What I did not count on was contracting viral hepatitis after kayaking in a local reservoir October 11, 2011.  I was deathly sick.  I never fully recovered.  After the holidays, my doctor when looking for other reasons for my illness and backed into a clinical diagnosis of Lyme Disease.  Within a year mold illness would also be discovered and a need to completely remediate our home.  The year and one-half of stress, illness, extraordinary expense, inability to work, and social isolation would take their toll.  My body became severely deconditioned as physical activity generally exacerbated most noxious symptoms.  To complete my basic self care, prepare my special diet, and to keep the house clean became my focus in addition to all of the activities related to managing my healthcare:  16 to 18 hours per day!  The remaining hours were crochity at best.  Dialing a phone and pressing 18,000 times the “1” key is not too far from the truth when you have to call so many health care providers, insurance companies and so on!

Today I am counting on muscle memory.  You’ve heard of that before, right?  Wikipedia defines it as follows:

Muscle memory has been used synonymously with motor learning, which is a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for that task, eventually allowing it to be performed without conscious effort. This process decreases the need for attention and creates maximum efficiency within the motor and memory systems.

I am hoping that when I am able to work out consistently, the memory pathways will still be there to get me stronger a little more quickly than if I was starting from scratch.  Certainly I have experienced this, for example, when getting back into my kayak 2 weeks ago, for the first time in a year.  I do remember how to hold the carbon fiber winged racing paddle after all!  And I didn’t fall out of my 19 foot Kevlar Stellar SR surf ski.  Wow.  There sure are sweet benefits to being married to a kayak racer, by the way!  My equipment is very cool and exceeds my abilities for sure.  (With the chronic pain, the lighter, more efficient equipment helped me to participate in a demanding sport.)  Thank you Lord for this cool history and the hope I have in You.  It’s all good.  🙂

One week before this journey began

One order of gratitude coming right up!

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DSCF7927You all who are healthy out there listen up:  you got it good!

I finally had an evening that was nearly normal for most of it and it was indeed good!  Celebrating the wedding of the son of some friends of ours seems like an ordinary part of life to most of us.  The story went  like this:

We met our friends’ kid as a teenager, he fell in love and 3 years later, we were invited to a magnificent wedding banquet in the quaint Heritage Barn out in the country!  My husband Steve and I gratefully got one of the few invitations to the wedding.  We enjoyed holding hands together during the ceremony, gazing deeply into each other’s eyes from time to time while reminiscing own wedding vows not too long ago.  Shortly thereafter we were seated at our assigned place setting in the adjacent hall; a lovely table arrangement of hydrangeas nearly blocked the view of the other guests yet set the stage for a candlelit dinner as night fell softly outside.  The food was delicious and probably even tasted better because of the 3 -piece string ensemble filling the air with classical genre fit for a king.  The newlyweds smooched with a ring of a cow bell and as the mother of the groom squirmed.  All was well with the world.   White-on-white flowered wedding cake followed for the guests in the dance hall, followed by traditional ballroom dancing and some rip-roaring square dancing too!  The building was a refurbished barn so ’tis fitting to end the magical evening with barn dancing for young and old alike.   The couple later departed through a canopy of floating rose petals then drove off in a “smart car” just large enough to contain her wedding gown!  The night ended as the full moon shined through the thin cloud cover of the crisp evening sky.  Congratulations Brock and Hannah!  Your new life together has begun.

On the way home I realized that only once during the entire ceremony and reception was I aware that I am battling a devastating disease that could take years to beat.  Only for a moment did I wonder if I would find anything to eat from the dinner buffet that would match my Candida Diet requirements; the al dante’ green beans and baked chicken breasts would satisfy my hunger just fine.  Only once did I leave the dance hall to retreat to the stone fire circle where a bonfire covered me with as much warmth as my coat might have but it was in the car parked somewhere in the field beyond.  Only once did I wonder if the music was too loud for me only to realize that I would not be having seizure attacks upon returning to the car at the end of the evening.  The usual noxious after-affects of too much sensory stimulation, having not enough food that I could eat, smoke from the bonfire, sitting in an old restored building, and being out late would not bother me very much at all.

Wow.  You who are healthy and never think about such things got it good!  And tonight, so did I!

Thank you Jesus for an edifying wedding ceremony that focused as much on your sacrifice and saving grace as the wedding nuptials of two of your precious children.  Thank you Lord for working out so many details through the work of so many people and your Holy Spirit to bring such a lovely wedding ceremony together for all of us to enjoy.  Thank you my Jesus for allowing me to experience the wonderful fellowship of our friends in Christ as we celebrated this wedding tonight.  I am humbled and grateful for this afternoon and evening.   This taste of goodness reminds me of Your goodness.  It was and is just the right encouragement I need to keep going when the times are more difficult.  For your glory and in Your name I pray.  Amen.

Then I Saw Her Face

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“Then I saw her face.  Now I’m a believer.  Not a trace . . . of doubt in my mind.”

If I followed the lyrics to this song by the Monkees, it would lead to a love song.  For me, these words do not communicate “love” today.  They communicate understanding.

It began with violent twitching of her limbs, marked by cramping that pulled her right hand into a claw.  No  matter how she tried, she writhed but could not get the fingers to straighten or get the twitching to stop.  She waited, apologized for delaying our medical appointment, and her symptoms did not change.  Somehow the involuntary movement pattern eventually broke enough to begin the special testing protocol for me and for which she was trained.  It is her job to help others with chronic illness but now she is in need as well.

Pain created postural rigidity that was visible as marked stiffness as I sat near her.  The degeneration of her spine escalated the pain that was already present that day.  Words of encouragement only encouraged me as I stayed with her and as the episode unfolded into new symptoms.  Administering the testing procedures which required operating a computer and test  equipment were impossible; she could not hold the probe or operate the keyboard accurately.  She wanted to help me, to proceed, and could not.  She leaned up against the wall as she offered to talk about my health concerns.  Perhaps we could turn the visit into a consultation of sorts?  She had tremendous knowledge to share from her expertise in electodiagnostic testing, alternative health research, and recent work with a masterful local physician.  Together they had helped many improve their lives.  That same doctor had encouraged me to return for testing.  It simply was not to be today.

I asked her a few questions and appreciated the information that just might give me as much insight into the next steps of my own health challenges as the testing might have done.  O.k.  So we were both getting somewhere for a moment.  Perhaps she could rescue the appointment that is her vocation and livelihood and I could go forward with new insights into my treatment plan?  Nope.  Not meant to be.  Within moments, she was unable to speak, straining for words.  Attempting to speak or move, worsened the lock down on her ability to function.  The internal tics were visible to me sitting near her.  There was nothing else to do but pray.  So calling upon the Father in the name of Jesus Christ, I prayed for her, for me, for all who deal with chronic illness.  Her symptoms softened.  But the damage was done.  It would take her hours to recover.  Our visit was over.  Into my truck she hobbled, and into her house she limped.  The office staff would graciously drive her car home sometime later.  The appointment and her day were now over.

This is another face of Lyme Disease, multiple autoimmune disease, chronic inflammatory response syndrome, chronic pain, and the consequence of living in a fallen world.  Some of us have an easier time as we journey through life and some of us do not.  All of us will suffer loss, some type of emotional or physical pain, and unwelcome changes during our lifetime.  I have come to know that how we handle it may not be determined by the extent of the trauma.  Oh it seems insurmountable a the time.  How we handle it can be determined by the extent of our faith in a plan and purpose for our lives that transforms our life experience.

Even episodes as severe as the one I describe here can be transformed into grace when we understand that our lives are not about comfort, good stuff, fleeting happiness.  It takes what it takes to turn our eyes back to the One Who made us and understands what is going on when our lives, when our world make absolutely no sense to us.  And He will not allow frustration forever or unmercifully.  In His Word, He promises that all can be used for His glory.  In time and in the end, we will see that our suffering is not wasted . . .  The path to this type of faith and understanding comes from seeking Him through His word and not this blog.  Or any blog.  Go to His Word, my friend and there you will find rest!

I have great compassion for this dear child of God and the experience that I witnessed on Friday.  I have experienced much of the same symptoms in my own seizure attacks.  Gratefully I don’t have the same type of cramping or mixed motor control issues.  I am able to recover enough after an episode to drive home if needed and to care for my basic needs.  The episodes come most days for me yet are generally of shorter duration than before my husband and I  remediated our home for mold.  Further, the Lord has provided the time, a loving husband, and just enough finances for this season of my life.  My dear friend struggles more than I in these realms.  I pray that she will seek her Heavenly Husband who will exceedingly provide for her too through Christ Jesus.  In Christ, we both will ultimately find peace and hope.

Yes, on Friday I did not only see her face but the face of my Lord Jesus.  In His face we will find all for which we long.  What will you see?

Are we there yet? Part 1

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When the going gets tough, many gals go buy shoes.  Today I think my response will be to go buy dog food and printer cartridges.  Geez!  I gotta get a life, eh?

My husband says that our current living situation (living in a hotel while we remedy my allergy to our home) reads like the childrens’ book Fortunately, Unfortunately.  In the book, fortunately a character gets to fly in a plane but unfortunately, the plane starts to crash.  Fortunately the passenger has a parachute but unfortunately it won’t open, and so on.  Yeah, this is the story of my life of late:

Fortunately, Steve had plans to go to Florida for a United States Canoe Association meeting in January but unfortunately he had to cancel due to the severity of complications of my battle with Lyme Disease.

Fortunately, I got energized after praying with our doctor and discovered I could have a few more food items but unfortunately he told me not to drive and I needed to go to the grocery store to get those items.

Fortunately, after Steve’s daughter, Christina, drove me home, I had started to feel better so I took a risk and drove myself to the store.  Unfortunately I was too weak to walk well and had to hang onto the grocery cart to make it through the store and back to my truck, my home.

Fortunately,  by this time I had figured out that I could stay in the house without seizure attacks and neurological collapses if I kept the windows open but unfortunately it was 20 degrees outside.  So I turned up the furnace and dragged my way through cooking enough food to sustain my special diet a few days on the road.   We had just cancelled a trip then reinstated it just hours before leaving town for over a week.

F:  within 48 hours of leaving town I was 25% better from all symptoms!  U:  The home we first stayed at had a history of water damage and mold, continuing my risk for exposure, noxious symptoms, and difficulty sleeping.  But the recovery process was now underway!

F:  within 3 days, I was 65% better as we continued to travel.  By Friday, I was grateful to be able to kayak in our two-man outrigger  canoe with my Aunt Lori on a bayou off the Gulf of Mexico!  From dying to living once again!  U:  it rained our last full day there and I had a resurgence in symptoms sleeping in the room with the windows open.  F:  the couch in the living room was next to a closed window and I was able to sleep about 2 hours.

F:  we were able to continue our trip to see some friends at their log cabin in the woods of South Carolina for some sweet fellowship and wild boar cuisine.  Hog is a menu item in my special diet and SC is the capital of hog hunters’ heaven, so to speak.  U:  fog rolled in the second night and kicked up the mold spores in the sleeping winter landscape triggering another setback.  Oh well.  We had a great visit anyways and I got another hour of sleep after we closed the windows, again.

F:  I was able to reserve a hotel room back in the Fort Wayne, Indiana area so my beloved could drop me off in a clean environment for our first two nights home.  This would give us some time to figure out a temporary living situation for me while we began the process of mold remediation in our home.  U:  I didn’t get to be with Steve again overnight until three days later.  He would begin commuting back and forth from home to the hotel, transporting needed items back and forth, taking care of the dog, visiting Christina (before she left town for 3 weeks) and so on.  Fatigue set in for him; stress began to mount for both of us.

F:  some dear friends offered me a lovely room-with-private-bath and generous kitchen privileges so I moved in.  U:  I had a few hours to kill in the afternoon between the time when a CPR class ended and they would be home.  All my earthly possessions to carry me through this time was in the bed of my truck or king cab.  The outside temperature was zero.  I simply couldn’t get warm and had no where to go.  I was beyond exhaustion, frustration, exasperation.   I went to a coffee shop to warm part of me then the library to use the computer and kill some time, cry a little.

F:  The lady of the house I was to move into called and offered an earlier time to move in and I was delighted!  This couple provided a place for me to stay 5 years ago when I was dating Steve; so many happy memories from that time.  U:  as soon as I saw them, instead of relief, I began to cry and could not stop.  The stress of my nomad life and uncertain future overwhelmed me.  Their love provided the safe place to let it all out . . .

F:  I had the best nap ever soon after I moved in.  U:  at 4:30 the next morning I had low grade seizure attacks that would not cease.  I got up and prepared a snack and sat at the kitchen table for awhile, hoping our friends would wake up and help me sort this out.  What went wrong?  We never really figured it out.  They had successfully resolved a water damage situation 9-10 years earlier and had “iron bacteria” in their water.  What was going on?

F:  since I had not reacted to the hotel, I made a reservation and went back for 2 more days of respite.  U x 2:  the room temperature vacillated, finally dipping to 58 degrees on a frigid winter night.  The maintenance guy was gracious to attempt a repair however a wire fried when he tested the system spewing smoke into the room.  F:  we were able to open the windows to air out the room and he brought a space heater to warm up part of the room.  U x 2:  the smoke smell was never fully eliminated and I woke up with marked seizure attacks at 2:00 a.m.   We called the office and relocated to another room just to sleep, in sub-zero weather.  More attacks followed in the freshly cleaned, highly chemically-scented room.  What now?

F:  a sweet family and friends offered for me to stay with them.  I packed up again and divided myself between various available spaces in the home for my luggage, food, supplements, and so on.  I had definitely gotten my routine down by now, made dinner and enjoyed visiting with them and their daughter.  She is such a cutie and playing with her was a great distraction from the events of late.  U:  seizure attacks returned as I awakened the next morning.  Guess I wasn’t meant to sleep in my cocoon in the gun room after all.  But I just couldn’t bear to move again.  Tried sleeping on the couch the next night and it didn’t go so well.  My hips hurt so badly I had difficulty walking.  Sigh.  I really enjoyed staying with them!

F x 2:  The very first room I’d stayed at in the hotel (where I did fine) was available so I moved back the next afternoon.  Some dear friends gave us a generous gift to help cover some of the hotel expenses, taking off the time-pressure, stabilizing my situation, so we could start focusing on remediating the house.  U:  almost every time a large item, number of items, or new smell was introduced into the studio room of the hotel, I would have a setback.  Multiple chemical sensitivity had set in and limits the progress.

F:  By this point I’D HAD A 60-HOUR INTERVAL, 72-HOUR INTERVAL, 60-HOUR INTERVAL, AND A FEW 48- HOUR INTERVALS without severe symptoms to date.  Praise the Lord for these, His provision, some sweet times in the hotel room with my “married man” and reuniting with my dog whom we brought to the room as well.  Puppy therapy rocks!  The healing process can also be rocky.  It is now here!

Stay tuned for Part 2:  The Fortunately, Unfortunately story of our home remediation.  This too has been a rocky process with some sweet possibilities as I write this.  Without my faith in Christ, I would be lost right now.  As it turns out, I’ve been displaced due to extreme circumstances twice before in my life.  I have seen the Lord, “restore the years the locusts have eaten.”  (Joel 2:25)  I will choose to “trust the Lord and lean not on my own understanding” for the promise that “he will direct (my) paths.”  (Proverbs 3:5-6)  I will, “press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. (Pillippians 3:14)

Someone once said that life is either a wild ride or nothing at all.  I think I’ve got one of those kinds of lives!  And we aren’t even “there yet.”  Hang on with me, k?  :J