They really need to work on their transfer technique!

Sometimes I simply take for granted the skills I have as an occupational therapist, even when this OT is on an extended medical leave.  Allow me to explain  . . .

The writing was on the paneled walls metaphorically today when an appointment for a medical evaluation by a new doctor turned out to be in a water-damaged building (WDB).  I had a bad feeling when I noted the address of his office:  in an older part of town with offices that were probably built at least 25 years ago.  I knew that another building down the street was flooded during a bad storm last year so it seemed possible that this building could be:  1) older, 2) a WDB, and 3) laden with automatic air fresheners to attempt to cover up any residual odors!  What I did not count on was the receptionist/medical assistant wearing perfume as well!

The scent of Dollar Store air freshener greeted me inside the glass doors of the 70’s style concrete medical office.  The scent was even more concentrated in the tiny office of Dr. O.  I had barely finished the new patient paperwork when the neurological symptoms hit.  Oh boy, here we go again!  I looked up and saw water stains on one of the grayscale ceiling tiles; there was at least one water stained tile in each room I entered this afternoon.  The medical assistant received my completed paperwork and took me back to the patient screening room.  No sooner had I stated my usual precautionary mantra of what to do/not to do if in case of “neuromuscular events” before the random fireworks of tic attacks began.

I aced the eye exam and I was pleased.  Steve and I have not had the funds of late to update our eye exams or corrective lenses for the past 2 years so it was good to know that perhaps not much had changed for me.  Conversely, the nature of my Doctor visit was about to change drastically.  The medical assistant (with great purple-striped fingernails) invited me to sit in the exam room and wait for Dr. O.  As soon as she closed the door, my whole world began to rock-n-roll.  Tic then seizure attacks are a real bear sitting up in a chair because of the whiplash effect on one’s neck.  Everything from the spinal column outward stiffens and voluntary movement diminishes the longer and more frequent the attacks continue.  Things were not looking good at all.

Dr. O entered the room and turned out to be true African instead of Indian as I had surmised by the spelling of his name.  He asked, “why are you here?”  I said I was there for a “medical evaluation.”  He asked a couple more brief and concrete questions and my ability to respond quickly degraded as the seizure attacks became entrenched.  Attempts to speak or move exacerbated the involuntary tremors and shaking; to try and tell him this while my face was becoming constricted and torso was pulling forward in a writhing, flexed posture was quite a challenge.  “I need to stop the exam,” he announced rather emotionlessly.  I encouraged him to wait a moment.  He persisted with something about not being able to do his exam with “all this” going on.  Yeah, I knew that but it was better that he said it and not me.

Two things happened next that amazed me.  First and gratefully, the medical assistant and Dr. O realized that they needed to get me outside for some fresh air.  They brought in a wheelchair and asked me to get into it.  I replied that I could not move!  Through extremely strained vocal cords, jaw, and body posturing I indicated that they would have to help me.  The absolutely crazy part was discovering that they had no idea how to transfer a patient from a chair to a wheelchair!  I guess I take basic skills like transfer technique for granted.  It’s taught in 3-week Certified Nursing Assistant training classes and most workshops on back injuries.  And yet there I was, an occupational therapist with 30 years of experience in a completely debilitated state, instructing 2 experienced healthcare professionals how to get me the heck out of that chair so I could get some fresh air.  Eventually they realized they needed to lock the brakes, flip up the footrests, and so on.  I just couldn’t utter all the details that were needed at the time ya know.

The second amazing thing was what happened next.  Once outside and all the way through the ordeal I kept uttering apologies, thanking them for helping me, and trying to regain some type of control over my physical faculties to no avail.  I simply had to wait it out and focus on just breathing.  I let them know the latter.  It was in the mid 90’s F outside and it felt great in the shade!  Fresh air at last!  At least the air was fresher outside than on the inside!  The two healthcare professionals made a plan for what would happen next since they had other patients to see (but I did not see any in the waiting room) and could not leave me outside the building in a wheelchair alone.  The sweet gal with the fingernails called my husband at work and he was now on his way to rescue me, take me home.  However the plan also included transferring me from wheelchair into my truck so I could wait there and not in their wheelchair.  Using the same ersatz technique, they moved me like a sack of potatoes into the elevated seat of the passenger seat of my truck, turned on the ignition and air conditioner, locked and closed the door, then retreated back to their office.  Geez!

I gradually shifted my tender “sack of potatoes” body around to support my wrenched head and neck.  The pain, the fatigue, the grief reaction, the embarrassment, the horror of it all began to sink in.  I could barely move my arms to wipe the tears and snot running down my face.  My central nervous system was still in “tic mode” so any efforts to move flared the remaining shakes.  I wiped my face with my sleeve anyways.  From here I simply had to ride out the rest of the storm until Steve arrived.  Such is the very inconvenient hell of Chronic Inflammatory Response Illness.  On 1 1/2 hours of sleep from the continuous tic attacks the night before and now after surviving a 3-hour ordeal at this ol’ medical office, my beloved found me an graciously took me home.

When I started writing this account of my day today, I intended to tell a really funny aspect of what had happened.  I guess I needed to vent first.  This was a very difficult experience as you might imagine.  Probably the only good thing that will come out of it will be that there is absolutely no way that Doctor can say that this illness is all in my head after what he witnessed today.  I’d experienced a couple of “MDs” lately who tried to suggest that these seizures are psychological.  I was thoroughly disgusted!  I’d have to be a real sicko to imitate over 200 episodes of wretched and painful pre-tics, tic attacks, seizure attacks, and convulsions in a recent 44 day period that I tracked for my medical record.  Who would do that?  The answer:  no one.  I must trust that Dr. O will write what he saw and nothing else.  No “armchair psychiatry” welcome here please!

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Funny thing happened on the way back to my truck after a medical appointment today:  I started to notice a host of crazy paradoxes despite my wretched situation that are quite humorous if I just changed my perspective a bit.  Here’s where I’m going with this.  Imagine these headlines for my story today:

Female medical center patient coaches physician and trusty assistant in wheelchair transfer technique to keep them from tangling her feet in the leg rests of the rolling and rickety wheelchair.  It’s a good thing that she’s been working in rehabilitation 30 years, eh?

Compromised patient slumped in non-ambulatory state must get back into her mid-size king cab truck loaded with dirt from a garden dig earlier this Spring.  She’s weak but her 2-ton truck is strong for sure.

Collapsed wifepoo recovers in her air-conditioned vehicle while her maximally machismo husband drives up to rescue her in his Dodge Magnum RT speed machine loaded with a 21-foot racing surf ski on his roof.  The dude looks like he could fly the stud mobile into orbit and launch a Tomahawk missile into space from the heavy duty aluminum racks bracing the sleek white projectile.  When she recovers, she and her co-pilot River Bear will fly shotgun in their 24-foot outrigger canoe on the roof one day soon.  Story at 11.  

Yeah, that’s more like it!  What a way to get a story, eh?

Let there be light

I am so glad I stumbled upon a videotaped performance this evening of the talented and zany Christian communicator, Patsy Clairmont.  My own strength is waxing and waning at the moment so she provided the little something extra I need to make it through to tomorrow.

In her show, Patsy described her search for words to comfort a dear friend battling cancer and found it in Genesis 1:3.  Here God reveals to us through Moses the beginning of the story of life as we know it:

1 In the beginning God created the heavens and the earth.Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.

And God said, “Let there be light,” and there was light. God saw that the light was good, and he separated the light from the darkness. God called the light “day,” and the darkness he called “night.” And there was evening, and there was morning—the first day.

Patsy points out that the first words the Bible records of God speaking are for there to be light.  Ah yes, light dispels the darkness and guides our way; light is a symbol of God’s glory and presence throughout the Bible, and so much more.  Intended as a meditation for her friend, the simple message of the verse, “let there be light,” became a joyful encouragement to both of them.  I invite you to view the You Tube video for the moving story:  http://www.youtube.com/watch?v=-HpRO8g9Qds

This evening was a dark one for my beloved husband, Steve, and me.  He’s exhausted from the demands of work and his heart breaking as he watches his wife thrash about with convulsions every night.  I am broken, depleted  and in a good deal of pain most evenings from the same and the seemingly lack of direction in my treatment.  It seems that every time I start on a new course of treatment for Lyme, Chronic Inflammatory Response Syndrome or the myriad of related conditions I get sidetracked or have to stop due to increased convulsions.  The current pattern of some form of these “seizure attacks” is for them to occur about three times per day on average with one miraculous 23-hour break earlier this week.  Go figure.

I need the verse, “let there be light” to wash over my burdened soul this night.  I need my Jesus to be the light of my sore heart, the light of my weary steps.  I need my doubt to be transformed by blind faith in His shining light.  I need there to be light.

And so I say to you as I write this in the middle of the night, scared to go to bed for fear of more attacks, “Let there be light.”  And to my heavenly Father, “Let there be light.”  And to those exasperated by the duration of my illness, “Let there be light.”  And to all of those who are weary, “Let there be light.”  Together we can find His light and know what that means in our own lives as the night gives way to the day . . .  zzzzzzzzzzzzzzzzzzzzz

So where are we now?

Driving+steering+wheelWhen I wake up from a nap while travelling in the back seat of my beloved’s Dodge Magnum, I often ask, “so where are we now?”  We may have been on the road travelling for hours when I finally settle down enough to fall asleep then wake up in a daze and ask this question.  Perhaps I could sound like a kid who would go the next step and ask, “are we there yet?”  Well since I’ve already used that question for the title of another blog post, I opted to go with the first question!

So if you are a gracious reader who has been following my story of recovery from Lyme Disease, Chronic Inflammatory Response Syndrome (CIRS), and Fibromyalgia, you have read in three prior posts about some new treatment directions (reference April 29th, May 11th, and June 20th of this year).  You have also read perhaps with horror of my battle with my most noxious complication of illness:  seizure attacks and all of its variants.  After 16 months since the “neuromuscular events” began, I have some good news for you:  beginning two days ago, the pattern of seizure attacks has started to change!  Hallelujah!  Hallelujah!  Hallelujah!

What prompted the new direction?  It appears that I’m close to landing on:  1) just the right dose of Losartan (an off-label application which has lowered TGF beta-1 levels and chest-compression pain) and 2) VIP (vasoactive intestinal peptide for CIRS which causes me to react negatively to most intense sensory stimuli in any form).  Additionally, a fifth type of antibiotic taken in the past 7 months is reducing the symptoms of a urinary tract infection within a matter of hours after taking it; nothing else has come that close, a la natural or by prescription.  While I am also still feeling spacey, sick, low level headaches, aches and pains, ringing in my ears and a host of other symptoms, the bottom line is that I am starting to get better!  The violence and frequency of the seizure attacks/pre-tics/tic attacks is coming down.  Praise the Lord!

I wouldn’t write about these things if it didn’t feel real to me.  I have had false hope many times before only to have my hopes dashed with more sickness.  Still I have kept the faith and persisted with the strength the Lord has provided; to Him be the glory if any good has come from this blog.  It’s time now to acknowledge that it is too early in this new direction to say any more than I already have written here.  So now I will end this post.

For today, please join me in being encouraged that after 16 months of hellish suffering, some relief has come.  I wish I could hug you out there for standing by me.  Thank you.  Just Julie

Too Pooped to Punt? Try Another Way!

When the ravages of illness keeps me from working out, I hunt for alternatives to get my heart-a-pumping!  I recognize that even when we are sick we must keep our bodies moving for the benefits of exercise we all know and to prevent further complications, such as blood clots from inactivity.  This is a constant battle for me these days.  How about you?

In times like these I am hoping that even walking the dog to the mailbox and back counts as physical exercise!  Well, almost.  Exercise at the moment sure takes on a different form, gets performed at different times, and gets done with different strategies fer shure!  For example, twice this past week I got on our elliptical trainer for 10-15 minutes at 2 in the morning!  It actually helped me to relax before bedtime and took the noxious symptoms down a notch that can be worse if I am stressed in any way.  I am very grateful to have an elliptical trainer in my living room just for this purpose!

When I am able to do exercise with a little more intensity, I turn to my garden chores.  Digging in the dirt burns tons of calories but more importantly, it becomes resistive exercise for my lower torso and “lifting” for my upper body as well.  O.k. so I’m not recruiting all of the muscle fibers within the limited range of motion of scooping-and-throwing.  I’m hoping that the diagonal axis of movement actually counts more than the up and down motion of most curls, presses, lunges, and squats?  It’s more like a hybrid exercise that combines the core muscles, upper and lower extremities at the same time, right?

A gal has gotta do what she has gotta do for a time such as this.  That goes for you guys too.  If I have just enough energy on a Monday to lift some weights or re-dig a border around our pine tree, the pine tree is going to see me first!  I just make sure that I use the best body mechanics I can muster during the job, like lifting with my legs, keeping the load close to my body, and so on.  After all, I still am an occupational therapist deep down inside you know and this is the stuff I’ve been teaching patients for years.  The stuff applies to me too and preventing injury is important now when I am more deconditioned than conditioned!

And when that extra measure of energy-grace appears, I do not need a reminder to get out the foam roll, 3-10 pound weights, theraband, weighted bar, or therapy ball.  I still crave exercise!  Gratefully I am able to place these exercise tools within reach in our living room for a quick few reps at, well, 2 in the morning!  As long as it’s a shorter workout, those few reps still won’t keep me from going to sleep.  By the way, like most folks battling Lyme Disease, it’s common to be nocturnal.  The noxious symptoms are the lowest in the middle of the night so that ‘s the time I use to make jewelry for Trinity Jewelry by Design or get my office stuff done too.

I look forward to the time when I can have both a traditional schedule and a traditional work out routine.  Just before my time of illness began on October 11, 2011, I was completing the Metabolic Effects (ME) workout DVD a few days per week, kayaking with my hubby, and our local recreational group and either going for long walks or riding my awesome, custom fitted hybrid, cross bike every week.  I was at the highest level of strength, of fitness of my life at middle age.  Wow.  As I posted in a previous blog about returning to my prior level of fitness, I am Counting on Muscle Memory!  Lord willing, I’ll get back there.  Lord willing, I may even exceed my former level of fitness.  And this is entirely possible if I have less chronic pain in the future.  Wow.   This hope actually keeps me going during the trials of “bothering” to recover from Lyme Disease and Chronic Inflammatory Response Syndrome.  Someday I very likely could be older, wiser, and better than ever.  Cool beans.

I am grateful to my step daughter-in-law, Kate Horney, for introducing me to a way of working out and of eating that has kept me from gaining weight during this time of illness.  She probably didn’t know that I was tracking her work on  Facebook, long before her successful fitness business.  More on that in a moment.  And when I would need to eliminate all forms of sugar in my diet due to Lyme Disease, because of my familiarity with what the ME folks call the fat-loss diet, the transition went smoothly.  Again cool legumes, not beans!

While I had followed a “protein-fat-vegetable diet” many years ago to eradicate a candida infection, the process in the past was very difficult.  I lost a lot of weight very quickly and was weak/shaky/miserable.  Using the ME approach to exercise more recently actually helped control my cravings for carbohydrates because of the hormone-balancing effect of resistive exercise.  This helped when I was exercising more two years ago and it helps now as well because I did not have to go through a rough transition again when eliminating simple carbs from my diet; they were already gone!  I was also already gluten free as well.  To be sugar and gluten-free are both are very helpful in battling Lyme Disease.  The spirochete bacteria of primary Lyme seems to feed off of simple sugars; gluten-laden foods makes everything worse as it can increase inflammation in sensitive individuals.   Wow again.  It’s like the Lord was preparing me for victory two years ago!

For more information on Kate’s work I invite you to check out her website at:  Beyond FitPhysiques.   While her latest book is titled for new moms, I found that it contains incredible weight and fitness strategies that can help all of us ladies who have bodies in transition, hormones adjusting to illness or post-partum changes, and who need a boost to get back on track.  Check out 101 Tips for Post-Natal Fitness and the Metabolic Effects Diet books by using the links under the NEW HOPE FITNESS RESOUCES in the right hand column of this blog.

Just writing this has energized me to do more than I thought I could do earlier today.  Gee Kate, I hope washing the hardwood floors counts too?!  :J

And then it gets real . . .

It is now 6:39 p.m. on a beautiful Saturday and I am grateful to be able to function at a low level once again.  Sometimes your own posts become your best medicine!  I am so glad that I had the opportunity to explore the topic of suffering before two hellish nights.  Sigh.  Perhaps this suffering shall pass in time . . .

Low Dose Naltrexone, a compounded medication used off-label to raise a person’s pain threshold and boost the immune system of someone with an autoimmune disease, is now ruled out for me.  Just 1.75 mg taken at bedtime the past 2 nights was enough to set off violent seizure attacks!  Oh yeah, I’ve had some of these attacks more often lately, but not for 1 1/2 hours in a row with hardly a break to breathe!   The duration was much longer this morning with longer breaks in between additional episodes.  After 2 hours then 3 hours then 4 hours of sleep, “I am able to function at a low level once again.”  This saga is a bite in the shorts for sure.  I AM FRIED.

So what did I learn here?

First, it’s time for more than one-half of a day break after completing one treatment regime before beginning the next one!  Healing from a chronic illness is a process, not a race.

Second, it’s time to simplify my daily routine even more.  Cleaning the entire house every week is just not going to happen for awhile.  This is a bummer since I am paranoid about dust accumulating, since we completed the mold remediation of our home.  Maybe the dust is cleaner now?

Third, it’s time to ask for help when I need it and not just from my husband.  A few ladies have offered assistance over these past 2 years of illness and I have rarely accepted it.  Maybe I could use help with a few things during this particular time.

Fourth, I must continue keeping my mind filled with scripture, Christian music, Christian messages and uplifting images to ward off the temptations and lies of the Evil One.  I must not fall into despair.  I must not keep apologizing for the effects of an illness that are clearly out of my control.  I must live as though the Lord is creating a masterpiece from the fragments of my shattered life, picking up each piece as if it were a treasure and not another burden.  God will use this for His glory and my good.  I must hang in there for the finished work.

Fifth, I must keep writing, including the good, the bad, and the ugly.  And when I do, I will continue to leave my gentle readers with hope by the time I reach the last period.  To write has been an incredible salve for my wearied frame, my wearied mind.  My soul, well that’s already in the hands of my Savior.

I am hungry again!  But it’s more-than-time for an Epsom salt-and-baking-soda bath and a shower!  Perhaps the Beanitos chips and unsalted dry roasted whole cashews I just ate for dinner while writing this will tide me over just a little longer?  Hope so.

Seeya next time, perhaps with better news.  :J

Elle gets a real job
Elle gets a real job