One step closer to something good

HOPE eBook Cover

So grateful to release the cover of my upcoming eBook!  Enjoy the most encouraging and meaningful blogs updated and all in one place with Bonus Pages too.  Preorders will be available FOR FREE for a few days before it goes live!

Gentle Readers always get da best ya know.

Be sure to watch this blog for upcoming announcements and just a little enthusiasm coming from my home to yours soon!

Take care, Just Julie

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?

Keeping Calm

Jesus Calms the Storm

22 One day Jesus said to his disciples, “Let us go over to the other side of the lake.” So they got into a boat and set out. 23 As they sailed, he fell asleep. A squall came down on the lake, so that the boat was being swamped, and they were in great danger.

24 The disciples went and woke him, saying, “Master, Master, we’re going to drown!”

He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm.25 “Where is your faith?” he asked his disciples.

In fear and amazement they asked one another, “Who is this? He commands even the winds and the water, and they obey him.”  (Luke 8)

This is such a great story isn’t it?  The newbie disciples did not know that there was no way that they could drown with the God of the universe in the boat with them!  And further, the story illustrates the omnipotence of God, that even the raging seas obey Him.  This story also reminds me of a message from Pastor David Jeremiah in which he taught the truth that a person in the middle of God’s will cannot perish until the Lord’s work is completed in him or her.  “Cannot perish!”  Wow.  Sure makes my fears and worries worthless.  If I could just remind myself of these truths in the midst of my own storms then surely I would be a better instrument for the Lord . . .

I might have made some progress last night.  Allow me to explain.  When reeling from 1 1/2 hours of relentless seizure attacks, I eeked out to my husband, “I need help.”  Within moments were on our way to the emergency room of a local hospital.  All I could think about was, “thank you” to Steve and, “I’m going to get help.”

Getting that help took a long time.  First there’s the registration, then the review of the bazillion supplements, compounded medications, and meds, and the $100 emergency room co-payment.  The ER Doc asked a few questions, called my family doctor, and a nurse started an IV.  200cc of fluids and some pain meds began to flow through the sore IV line in my frail forearms.  And amazingly within about 20 minutes, the seizing stopped.  Praise the Lord!  I actually started to feel sort of normal.  Even the neck headache from the thrashing of my head went away.  Wow.

What I did not expect was the diagnosis.  While I am not going to go into the details here, I will say that I was shocked.  Both Steve and I did not agree about what was written on the page.  Sensing the anger rise up within me, gratefully, I started to pray instead:  Lord, help me to handle this as you would.

I asked to speak to the ER Doc and expressed my concerns.  He said that to change the diagnosis would be fraud.  I believe that I respectfully disagreed and stated that as a licensed healthcare professional myself, I understand both the responsibility of medical documentation:  to get it right and to respect the future implications for the patient.  I thanked him for the treatment that stopped the seizures.  Later I chose to “qualify” my signature on the discharge instructions in a way that indicated that while I received the discharge paperwork, I did not agree with its contents.  Then we left.

It is now 28 hours later and I have not had another seizure-like episode!  Praise the Lord!  The “seas” remain calm and I was able to get some restorative sleep; I even caught up on a few errands this evening with my pup in tow.  I have begun some online research related to my experience of the past day and started pounding electrolyte replacements to keep myself hydrated.  My Lord is the only one who knows what the next day holds for me . . . will I make it to an unrelated doctor appointment tomorrow or even a quick outdoor outing with my hubby mid-day?  Or will the attacks return as I lie on the bed a few minutes from now?  The latter has been my life for virtually all of the past 1 1/2 years . . .

Keep calm.  Keeping calm.  Trusting that the Lord who calms the seas can not only get me from this evening to the morning, He can get me through all of the stormy days of my life.  Oh Lord, care for my beloved Stevers as well and restore Him from the stress of riding things out in the rocky boat with me.  May we both keep our eyes fixed on you with amazement for all that you have done and all that you have yet to do in our lives.  Thank you for the help.  I will entrust you with the details as I lay them at Your throne of grace.

Goodnight all,  Just Julie

Psalm 121

psalm 121 3

Her Color is Lyme

I am pleased to share with the Gentle Readers of New Hope Beyond Lyme, a second guest blog interview!

Introducing:  Jennifer Steidl, a WordPress blogger from the State of Washington I met after we “liked” each others blogs a few times!  What interested me in reading Jennifer’s story is her devastating exposure to mold biotoxins as a child then her battle with several other serious illnesses including Lyme disease.  What kept me coming back was her gentle way of communicating her experiences and her faith in the Lord.  Please check out her blog at:  http://www.jeanvieve7.wordpress.com/ for more of her story.

And now let the interview begin:

1.  Tell us about your life before Lyme and the development of mold biotoxin illness.

It is actually hard to recall life before illness, we moved into a mold filled house when I was 11 so my (our) health deteriorated after that point. It started with fatigue, sinus infections, and various other symptoms. It took years to discover the problem was mold. We lived in the house 6 years, and after moving out our health started to get better for a time before auto-immune symptoms started to make themselves known.

2.  What role does your faith in God have in your recovery process?

It has been the essential element. I had times when I felt so terrible physically, and was so depressed I think I would have given up all hope if it weren’t for God. And knowing (even if it was only deep down at my core) that He had a plan and a purpose for me brought me through the darkness. I trusted that He led me to a team of doctors that knew what they were doing, and He would not have done so if it were not for the purpose of healing.

3.  How can I keep from blaming God or others for my illness or the things that are going wrong in my life?

I can honestly say I have never blamed God for years of struggles and illness. Been frustrated, angry, depressed, desperate, confused…yes, but not angry at God. I am not being arrogant at all, but rather I had to resort to what I knew was true of God; His character, and the way He works. I am a weak feeble-minded human being and I have doubted these truths many times….but somehow not at my very core. Dive deeply into His Word, pray fervently and honestly, don’t be afraid to ask Him why you are going through these struggles, He will reveal it to you in time. Be open to learning whatever He has to teach you during this time, and what He has given you to teach others.

4.  What are your favorite verses of scripture or Bible stories these days?

  • A Couple of my favorites:  Hosea 6:1-3 “Come, let us return to the LORD. For He has torn us, but He will heal us; He has wounded us, but He will bandage us. “He will revive us after two days; He will raise us up on the third day, That we may live before Him. “So let us know, let us press on to know the LORD. His going  forth is as certain as the dawn; And He will come to us like the rain, Like the spring rain watering the earth.”
  • 1 Peter 1:6-7 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ.

5.  What works the best for you with the difficult symptoms of Lyme and mold treatment?

It has changed over time depending what stage of treatment I am in, but one thing that has made the biggest difference in energy and weight loss has been Cholestyramine. It is used to rid the body of toxins that the liver alone can’t deal with, especially mold toxins.

6.  What 2-3 things do you look forward to the most when you are well?

In some ways it is still scary to hope too much (the fear of not getting to do what I want to do), but that is something I am slowly getting past. On a small scale I would love to really get back to biking. I have a goal of riding 50 miles in one day. Also I would love to get back to yoga. On a large scale I have always desperately wanted to travel, with New Zealand being my number one destination.

7.  Is there anything else you would like to share with the Gentle Readers viewing this blog post?

I hope with all my heart you have a good doctor or team of doctors that really know how to treat Lyme, it’s co-infections, and especially the secondary illnesses that accompany it; heavy metals, candida, parasites….If you do know that what you are feeling now is temporary, and it gets worse before it gets better. You can make it through. Don’t be afraid to ask your doctor/s the tough questions. Do lots of research and know your illness as best you can. Reach out to others both to learn and be learned from.

Don’t let yourself battle this alone. I think this is one of the top struggles of Lymies because so few people are able to understand what you are going through. But be honest about your physical and emotional struggles with those who love you, don’t try and do it by yourself. No matter how terrible you feel at this moment, allow yourself to accept that you are in a privileged place (crazy I know). But God is drawing you closer, so let yourself be drawn into His arms of grace. There is abundantly more for you at this moment in Christ because all else has been taken away, hold onto it, embrace it, don’t let this moment pass you by.

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Thank you for sharing your story, your heart, and your hope today Jennifer.  I pray that the Lord will bless you on your journey and see your through to complete healing and wholeness.  Take care lady, :J