Recovery is a jagged line

Today my words came back to me.  My beloved Steve was comforting with his encouragement that there can be many setbacks even when on the road to recovery.  Ah yes.  The old, “recovery is a jagged line” speech.  I have let those words fly many times when working with my patients as an occupational therapist.  There was the cardiac patient who was frustrated with having to restrict his activity level to basically mope-ing around the house for his first week home from the hospital.  I also recall a lady practically quarantined in a back bedroom of her home with a great view of the surrounding woodlands.  She had a portable refrigerator, phone, laptop, accessible bathroom, hospital bed, wheelchair, walker and many conveniences to help her recover from a knee replacement surgery.  I had to encourage her to push up her jagged line a bit lest she become too comfortable in her hospital room at home!

occupational_therapy_no_limitsOne of the many reasons I enjoyed working in home health care was the ability to use the person’s real-life situations, supplies, and responsibilities as part of his or her occupational therapy.  The role of an O.T. is to evaluate the daily activities of an individual and the skills needed to complete those activities.  When there is a breakdown due to an illness, surgery, mental health problem, developmental delay, disability, or disease process, the O.T. works with the patient and his or her resources to restore function.  I was always amazed at how “resourceful” some patients could be!  I think the farmers were the best.  I’ll never forget the industrious wife of a patient suffering after several failed back surgeries.  The lady of the house had built from scrap wood a rolling cart with a seat on top and rope attached to move it along the floors in her home.  What was she moving?  Well her husband of course!  He was eligible for a wheelchair rental but evidently the subject never came up.  I don’t think they even wanted one when it became available.  The downside:  the gentleman would not likely become independent in household mobility and related activities when sitting on a cart that had to be pulled by others.  Recovery is sometimes a flat line too:  no true recovery at all.

As for me, the recovery is moving forward.  I am 12 days into using high CBD hemp oil to attempt to control daily seizure-like tic episodes.  Today I had a setback for about 2 hours but at least the episode was low grade without a severe neck headache or pain.  And when night time rolled around to my bewitching hours of 9-11:00 p.m. there were pre-tic symptoms and nothing else.  This is the second night in a row with relief!  Every night prior to this and for the past 8 months I have had 2-4 hours of intermittent seizures.  Virtually every day or night for the past 2-1/2 years I have had intermittent waking seizures.   Praise the Lord, the pattern is changing!  At either set intervals or when noxious symptoms start I take a full or partial dose of high CBD hemp oil and get relief.  Nothing has ever done this before!

It’s not like I haven’t prayed, submitted, waited, or tried more diets/supplements/drugs/manual therapies/technologies/chiropractors/testing/remediation than, as they used to say, “Carter has got pills!”  I am actually still preparing to see methylation and biotoxin illness specialists in Michigan later this month.  It is likely that the cause of illness is related more to exposure to biotoxins than Lyme disease.  All that may be clearer sometime down the road.  At this time my husband and I are rejoicing for the relief from our hellish nights.  He just might start getting a full night of sleep before too long!  That is if we don’t stay up for other reasons . . . ;J

If you are curious about high CBD hemp oil then I offer this informational website:  www.mycbdresearch.com  and join the discussion on Facebook at:  www.facebook.com/CBDhempandseizures  There’s hope here for many with seizures and other neurological, intractable health conditions.  For all of us there is one ultimate source of hope that will sustain us whether recovery is a straight, jagged, or invisible line:  a relationship with the Lord, Jesus Christ.  To find Him we only need to get on our knees and open our hearts to His enduring love, His love letters to each of us in the Bible.  I would have never made it this far without my Jesus.  I am humbled and grateful for many aspects of these past 2 1/2 years:  I’m working on accepting the wretched parts.

Meeting you, Gentle Reader, along the way is a sweet gift.  Thank you for being a part of my recovery too.  JJ

And in the meantime . . .

November 20, 2011 around noon.  I was alone when my body began shaking uncontrollably.  I was having difficulty thinking clearly and my speech was strained.  All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening!   It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone.  Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them.  Now I was immobilized and terrified of what was happening to me.  Somehow I figured out that low blood sugar was worsening the symptoms.  Finally I figured out that I needed to call Steve:  he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home.  The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us!  Flash forward about two hours and the episode was over.  I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too.  What had happened to me?

April 15, 2012 at 3:00 a.m.  I awakened on my birthday with a nightmare and unusual shaking.  The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed.  I remained awake a long time, unable to fall back asleep.  This incident occurred nine days after beginning to use a Rife machine, six days per week.  (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.)  Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m.  After running 15 minutes of various Rife programs, I was shivering uncontrollably.  My hands and feet felt extremely cold.  Fatigue overtook me and I napped almost two hours.  I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m.  I am suddenly awakened from a post-Rife treatment nap with the barking of our dog.  I am unable to move for almost 30 minutes.  My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again.  I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m.  From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap.  Cast out with calling out the name of Jesus.  Calmed.  Re-started.  Called out 2-3 more times and stopped.”   A two and one-half hour nap followed shortly thereafter!  Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April.  Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day.   Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night.  The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap.  It lasted 1 1/2 hours!  I struggled to keep myself from hyperventilating or stop breathing altogether.  Talking or voluntary movement were extremely difficult and made the attacks worse when attempted.  I cried!  My body temperature dropped and both thirst and hunger pangs increased dramatically.  I was miserable, exhausted, and terrified all at the same time.  While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year.  We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times.  The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli.  I stopped attending worship services at our church since it is a water-damaged building with mold.  A recurrent urinary tract infection required treatment with a series of different antibiotics.  The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic.  My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights.  The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes.  Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes:  a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now:  Candida, mold-free, and low oxalate diet.  I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail.  Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails!  My hair is thinner and so am I!  However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened.  I haven’t worked in two years and am homebound much of the week.  Concentrating on my hobby jewelry business is extremely difficult.  Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook:  Hope Beyond Lyme:  The First Year.  I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too.  When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory!  To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course!  My neck is killing me from all of the thrashing about you know!  I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve.  Will I become disabled or return to work?  There is only One who knows the answers to that question and another big one, “why?”  Gentle Reader, if you have read this blog before, you know what I am about to write here:  it’s o.k.  I’m going to trust the lover of my soul anyways, no matter what happens.  I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month.  High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too.  However, I have been down this road of hoping for a cure before, only to have things worsen.  Yeah, supreme bummer for sure.  Sigh.  It takes what it takes.  Sometimes we wait and sometimes we go backwards.  If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey.  I hope I remember to lean on the Lord when times are good as well as when they are bad.  Please help me keep my Jesus in front of me as He goes before me each day.  Now let’s all get ready for some good news, k!

So where are we now? Much better than “clean and dry.”

I will never forget Julia.  She had a petite frame, a blondish hue to her gray hair and a sweet disposition even with her eyes closed.  She kept her eyes closed most of the time in those days.  Oh what a sweet treasure it was when she would open her droopy eyelids, worn out from the years of looking at what simply did not matter anymore.  When they did pop open, her eyes were as blue as that of a spritely, young thang yet their life was no longer shining through their looking glass anymore.

Julia let you know what she wanted by the gestures of her contracted and weakened frame.  She held her arms in a flexed posture near to her chest and her legs were drawn up above the seat height of the modified geri chair upon which she sat, semi-reclined.  I don’t even think that her feet touched the foot rests most of the time:  pale pink padded foam to match the waterproof cover of the end-of-life bark-a-lounger in which she sat when out of bed.  Julie must have weighed 90 pounds when I met her.  She leaned to the right then to the left depending upon the position the Certified Nursing Assistants (CNAs) had plopped her in until nap time.  The frail bird of a woman was transferred to bed each afternoon at least an hour after lunchtime, to prevent regurgitation you know.  That is also when she would be checked to make sure her diaper was clean and dry.  If not before her nap, the CNAs took care of her diaper change later for a total of about three times per day.  To keep her “clean and dry” was the charge of the nursing staff of the long term care wing and staffing ratios made sure it that it probably did not happen any more than that for tender ladies like Julia who could not ask for more.

I met Julia while working as an occupational therapist in the rehabilitation unit of this long term care facility.  Periodically we would receive referrals for residents whose MDS (government mandated) scores triggered a decline in the functioning of a resident, requiring a screening assessment from a member of the rehabilitation therapy team.  This particular episode was likely triggered by weight loss which may indicate possible feeding issues.  Or it may indicate improper positioning in the geri chair restricting swallowing, restricting nutritional intake.  She was already seated at a “feeder” half-circle table in the occupational therapy clinic at mealtimes so I had seen her while I was eating my own lunch in an adjacent office.  My role would now become evaluating all of the factors in her decline once the screening assessment triggered an order for an “occupational therapy evaluation” then treatment.

Residents such as Julia are very complex for the reasons that I have already stated.  At some level, you must detach from the emotional impact of working with someone in the last stages of his or her life with advanced medical conditions and dementia.  Then again, when I got to see those blue eyes meeting my own brown eyes for a brief moment in time, I knew that there was more than a long term resident in front of me.  I was looking through those eyes to the heart of a woman who once was someone’s mother, another’s grandmother, a man’s darling and petite wife, and someone whom many once loved.  I loved those connections when our eyes would meet!

I am grateful to say that I don’t think that I ever lost sight of these defining “occupational roles,” the presence of one of God’s children placed before me, when asked to evaluate and treat a person entrusted to my care.  I am grateful for even the somewhat gross experience of feeding a shell of a person (which would have been required through the course of my intervention) even though she would likely spit up some of the pureed foods presented to her.  She probably smelled rank at times after an episode of incontinence when she could not communicate her need to “use the ladies’ room” after dining with the other “feeders.”  Arrrgh!  How I hated that label!

I would have initiated taking Julia to her hospital bed with one of the aides and assisted with “toileting hygiene” even though it was a “feeding assessment” because that care became a part of my job description too:  it would help me to evaluate Julia’s sitting balance/tolerance/posture, level of arousal with gross motor stimulation, righting and equilibrium reactions and more that influence a seated posture for the “activity of daily living” called eating.  How better to evaluate someone than within a real-life activity than to transfer her onto a vinyl mat . . . smelling like feces?  Helping Julia become “clean and dry” before the aides had time to do so after their smoke break always seemed noble as well . . .

Julia’s story had a sad ending.  I watched her continue to decline long after our occupational therapy sessions and staff training were completed.  Julia continued to require maximum assistance with feeding and eventually accepted less nourishment from the aides at mealtimes.  An astute and skilled nurse who loved the patients in the long term care wing determined that Julia had a fecal impaction and notified the family.  Julia had a “Do Not Resuscitate” order on her chart and the family were ready to let her go.  Perhaps the heartache of seeing her endure this end stage of life was just too much for them to bear anymore?  But the illness that resulted in her death was not a major medical event.  It was a fecal impaction.  The end of her life was gross and undignified.   The gracious nurse personally assumed the responsibility of keeping Julia “clean and dry.”  This time the toileting hygiene that was needed was in her mouth . . .

Perhaps you can imagine what I am describing here without having to write another word about it.  Many who knew and cared for Julia were deeply grieved at her passing.  To discuss her quality of life, the anguish of an end-of-life decision, or the crises of the skilled nursing industry is not the intent of this article.  My intent is to tap into the compassion I once felt on a daily basis that brought gratitude for the opportunity I was given to serve others in their time of need.  I did what I could, with what I had, to the best of my ability at that particular time in my life.  Caring for others kept my mind clearer of the whining that can occur for my own limitations, unmet needs, illness, and sorrows.  I don’t have that caregiver role right now.  Even so, I will never forget my experience with Julia and it is good to remember her on a day like today.

No, the hope I had that my pattern of noxious symptoms was changing did not last for more than two days.  Oh well.  I thought about deleting the blog from August 2, 2013.  If I had deleted it, I would have missed reaching deeper into my heart to find the memory of Julia who had taught me so much about life so many years ago.  In the larger scheme of things, two days with a few hours of relief is barely enough time to do anything, experience anything of lasting significance anyways except maybe a trauma of some sort.  I shall hold out my hope for two months!

In the meantime, I will open my brown eyes and see if I can find something else to focus on today.  Six-thirty in the evening is a great time to take a shower in the “p.m. shift” of my daily schedule so I can present myself clean and . . . pretty for my husband when he returns home from more noble activities.  It’s a lovely evening so maybe there is something I can do with it, even if it is sitting within view of the pretty gardens outside my window.  Oh how I wish you could see them!  There’s a hummingbird who is coming around a lot more now too.  Very cool.

See there?  I think I’ve landed in a better place after all.  We are “there” and it is meaningful after all.hummingbird

What you didn’t say I’m glad I didn’t hear

Lyme myths posterWhen someone says to me, “you look good today,” I’ve decided to simply take that as a compliment.  The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above.  Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week?  No one sees me when I don’t feel well because I don’t leave the house!  Oh well.  As a friend of mine named Carol used to say, “it’s better to just leave it alone.”

When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.”  If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments.  That usually brings silence so I quickly change the subject to his or her job or other  primary role in life.  My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them.  I do enjoy getting to know others so his approach works well.

When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well.  I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth:  a negative litany of symptoms that has gone on for 1 1/2 years!  This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers.  (I told you I’m Polish right?!)  I appreciate the question, acknowledge it and turn my attention to the other person.  It’s pretty clear when a person cares for more information and sweet when this happens.

When I do get to share a little more of my story, I try to end it with gratitude.  There is always something for which I can be grateful, for which we all can be grateful.  Today was a day that stunk until about 1:35 p.m.  The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period.  In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that.  The sweats episodes did not diminish until later in the evening.  I am however grateful for two cool things that happened today:  1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers.  Cool beans.  Steve and I had a sweet evening together later after finishing our respective projects today.  Thank you Jesus!  Lord willing, I will worship His holy name tomorrow at church . . .

Recovery from a long-term illness thang isn’t for wimps you know!  Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse.  I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior.  Rejoice if you see me out working in my garden!  I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways.  We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life.  I just get it more often!  Eeek.

DSCF7968

Ahhhh.  That’s better.  Happy Spring y’all.