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?

And then there was a better night

Unbelievable!  To fall asleep without being tazored by seizure attacks.  To wake up without over 15 minutes of tazoring.  To start the day with just a trace of a headache.  To get outside and work in my garden in the morning!  To be looking forward to an afternoon nap in anticipation of a gathering with some friends at the home of one of them on a lake.  For this to come together on a beautiful day.

Yes, praise be to the Lord.  The last 12 hours have been relatively great.  Thank you Jesus!

The trip of faith that made a difference

DSCF7473You will find a tale of two contrasts in the top photo:   Aunt Lori and I in our outrigger canoe paddling in a bayou, Tarpon Springs, FL; and photo below:  wearing a respirator mask in my home.

Here is evidence of the victory over illness that began when we traveled last week from our home in Indiana.  I was able to paddle a decent length for the first time in over a year!  And paddling in our OC-2 was particularly sweet as my husband had just finished repairing the hull.  (It was damaged at the USCA Nationals in 2011.  The risk of racing, I understand!)

The escape of faith started with a lovely visit with my husband’s cousin, Christine Oswald and her family in Atlanta, Georgia.  Their four girls are adorable!  From there we travelled to Florida so my husband could participate as the Indiana delegate to the United States Canoe Association.  Meanwhile I gratefully enjoyed having lunch at Hellas on the Sponge Docks:  authentic Greek food that matched my narrow dietary regime.  Amazing.  From DSCF7517Tarpon Springs we made our way to remote Patrick, South Carolina (near Florence) to the hideaway log cabin of Ed & Kinsey and little Gunnar Artfich.   We really enjoyed some meaningful fellowship and are pretty sure we now have the answers to Obamacare, gun control, and preparing for the End Times.  Thanks guys.

Preparing for the trip was a nightmare as I had a neurological collapse earlier that day, two medical appointments, was recommended not to drive, drove anyways to the grocery store, and cooked my special foods for hours with the windows open.  The latter was to attempt to minimize the exposure to mold enough that I could prepare the special anti-seizure diet and pack as needed to get away for a few days.  I was sooo sick!  The Lord gave me a supernatural dose of adrenaline to start the process then finish the next morning despite a “hammer headache” and seizure attacks.  This gal was getting out of town if it killed me!

The trip did not kill me.  The trip began to restore me.  Within 48 hours, all of my symptoms had either diminished or temporarily reversed.  The antibiotic and fungal medications started to work (thanks to a run to CVS pharmacy at 2:30 a.m.!  Too bad the credit card got cancelled because we were out of State.  Sometimes I wish computers didn’t think so much!)  I had mini flare ups here and there.  HOWEVER, THE PATTERN OF DAILY 3-4 HOUR SEIZURE ATTACKS AND COLLAPSES WAS NOW BROKEN!!!  This is the miracle for which we desperately prayed in the doctor’s office on January 8th.  We praised the Lord and had a great time.  I finally started to sleep a little more too.  Amazing.

We are now in the reality of returning home.  My last post reflects the crying and feeling of being overwhelmed that has characterized these last three days.  I arranged to stay in a hotel-with-a-kitchenette for two nights beginning at 4:30 a.m. when I got there.  Steve went home as he was getting a sinus infection and needed to take care of things at our home then return to work the next day.  Turns out that I would not see him again for almost 2 days, too long.  While traveling, we were without internet access for the first half of out trip then was finally able to share a prayer request of our need for a place for me to stay.  We are one accord that I cannot live in the house that is killing me!  We had begun the process of filing a claim with out homeowner’s insurance since the mold causing the severity of this illness was from an incomplete clean-up of water damage by a restoration company in January of 2009.  The immediacy of the housing need and time of arrival back in Indiana necessitated a hotel expense.

After much prayer and consideration in my “lost” state of mind, I selected the home of one of two friends that appeared to meet my needs:  no water damage, no chemical fragrances, kitchen access, and distance from the internet router (an issue for some folks like me with Lyme Disease).  I unpacked, made a late dinner, and went to bed around midnight.  At 4:22 a.m. I was awakened by severe seizure attacks that would not subside!  Oh no!  Fear gripped my heart.  I don’t want to go back there!  What shall I do?  What is causing it?  I stayed up for 2 hours then went back to bed, hoping to catch my host couple in the morning.  The seizure attacks returned and sleep alluded me.  The old “hammer headache,” ringing in my ears, stomach ache and more began to escalate.  We really never figured out what caused this surprising setback:  was it the iron bacteria in the water or some residual from a basement flood 9 years ago?  With sadness, I had to pack up and head back to the hotel.  There I was able to sleep peacefully once again, albeit a short time until the next appointment this afternoon.

Our “ace-in-the hole” to meet a housing need for the estimated 2-months needed for the mold restoration project was the newly renovated home of another couple we know.  Sounded like it would be ready within 2 weeks and sitting empty until it would be sold in the Spring.   We toured the sweet, older home by a lovely wooded park; everything inside was to be new.  Unfortunately we found an area of drywall in the basement that had been cut away due to mold damage.  All it took was our friend tapping on the tattered insulation in the basement-smelling basement and I was in crises.  I went outside for some fresh air, stepped back inside by the screen door, then hurried back out before the major collapse ensued.  Gratefully I was able to yell for Steve.  By the time he reached me in the side yard, my gait was stumbling, I was crying, and the seizure attacks were ramping up.  All I could do was blurt out, “I’m sorry, I’m sorry” and yield with horror to the loss of control of my body.  Steve assisted me to the car and transferred me back into the passenger seat.  Decision made:  can’t live here!

Sometimes a burger at Five Guys Burgers is just the ticket.  By the time we got there, I was slowly regaining motor control and my speech rate was returning to normal.  The headache was subsiding and the embarrassment, well, still there.  Thank the Lord that beef is o.k. on my diet once per week!  Five Guys Burgers are organic beef you know!  Even sipped my husbands cherry coke twice.  I needed comfort big time!

It’s now evening and I’m sitting at my home computer with my new respirator mask digging into my face.  This is the only way for now that I can do anything in my home of the past five years.  I gathered a few more things to take back to the hotel room and am grateful that Steve will be joining me tonight.  Oh how I miss him when he is away!  Thankfully my Heavenly Husband was my companion when I needed him to make most of these moves with all my provisions and luggage, up a flight of stairs.  Thankfully I own a truck which makes it all a lot easier.

This continues to be a wild ride.  And yet, the miraculous answer to prayer is here.  With great expectation and no clue as to the next chapter in this saga, I will leave my home again tonight.  Sure miss being with Steve each day and even my dog, Elle.  I do know this, that the Lord knows the desires of my heart and has granted them in marvelous ways in the past.  Exceedingly.  He has not changed and never will.  Thank you for joining me in prayer and faith.   (Reference:  Proverbs 3:5-6, Jeremiah 29:11)

Flexibility is Key

Yellow roses and purple irises for our anniversary!

Today is the five year anniversary for my husband, Steve and me.  I struggled to try to figure out how to “celebrate” since  I am still battling Lyme Disease and don’t feel well most of the time.  Let’s see, a little creative flexibility would be in order:

Dinner at Biaggi’s:  we checked local restaurant menus online, made a couple of calls then decided on Biaggi’s as there’s enough on my allergy-free list to comprise a dinner.  Once there, the host seated us in a quieter section of the restaurant (without even asking!) and the waiter was able to turn the music below my sensitivity level.  And yes, the waiter was able to have a salad made for me, picking and choosing from all the acceptable ingredients on the salad menu.  The coconut yogurt dressing came with me, packed in my purse.   Result:  a romantic anniversary dinner with my beloved Steve.

Movie date:   started having a headache (the pre-seizure attack kind) on the way to the theater so we stopped at Walgreens for some OTC meds.  Then we sat in the parking lot until the headache subsided but the seizure attacks came anyways.   I cried and Stevers drove us to two Red Box DVD dispenser machines.  Only problem was that most of the movies were either obscure or rated R.  Next, we came home with mixed emotions and Steve’s daughter, Christina mentioned that you can rent and download DVDs at Amazon.com for $.99.  Seemed like workable alternative then the seizure attacks returned.  (Guess the other unknown ingredients in the dinner got to me?  Hard to say . . .)  The attacks ended and we relaxed for awhile before staging a movie theater in the office with a ton of pillows and comforters. Result:  Pixar flick “UP” made for a sweet movie date.

So you can see how grateful I am for so many things this evening.  Steve takes even the weirdest, ugliest, most stressful things in stride; these qualities make a HUGE difference in this time of illness.  Oh how I am blessed to be his wife and partner in this life.  I hope that when I am called to serve him that I will be as gracious!  Just finally figuring out what to do to celebrate our anniversary was a huge gift since I wasn’t sure we could do anything at all.  Thank you Lord for guiding us and providing a sweet evening together.

Flexibility is key in celebrating an anniversary in a time of illness or trials.  Flexibility is key in living everyday with gratitude and hope.  There is sweetness not to be missed, we just gotta look for it and go for it!  If it don’t work one way, try another.  We can celebrate so much more than the special dates and events.  And if we have faith in the Lord and we let Him guide our paths and bunny trails, well, the outcome is Providential indeed.  Let’s see, what can we celebrate today?  :J

Habakkuk 3:17-19

New International Version (NIV)

17 Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,
18 yet I will rejoice in the Lord,
I will be joyful in God my Savior.

19 The Sovereign Lord is my strength;
he makes my feet like the feet of a deer,
he enables me to tread on the heights.