Tag: mold illness

Sending in the big guns

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As the old Kenny Roger’s song, The Gambler goes, ya gotta know when to hold ’em, know when to fold ’em, know when to walk away, know when to run . . . .

Today I chose to  . . . RUN!!!

Yes, it’s time for another crazy Lyme story.  Grab a cup of coffee and here we go:

The sharp neck headaches continue to be menacing, even with the recent slight slowing of intensity, duration, and frequency of seizure attacks.  Six months of intense daily episodes and a total of 1 1/2 years since they first began have taken their toll on my deconditioned frame.  It’s like having a little fender bender several times per day in a car that’s a little too small to support your head and neck correctly:  thrashing around, repetitively in one direction then another.  Enough is enough already!

Enter into the picture a new chiropractor.  He was referred to me by Dr. N because Dr. N thought he would provide a more comprehensive approach to treatment.  Dr. N has a no nonsense orthopedic practice that offers spinal decompression and traditional chiropractic care.  Dr. N had taken a long time to contact my Lyme Literate Medical Doctor (LLMD) so I kind of wrote him off after the first 7 treatments.  I wanted Dr. N to coordinate my care with the LLMD since I was experiencing so many tic and seizure attacks during treatment.  Paradoxically, even though I had seizure attacks during every chiropractic visit, I was feeling better!  The neck headaches had diminished, my range of motion had significantly improved, and I was back to taking short walks despite the ongoing episodes in the office and at home.  At least part of my body was functioning better!

But by the time Dr. N finally called me to share the results of his consult with my LLMD, 3 weeks had passed.  Dr. N referred me to another chiropractor whom he felt had a more “comprehensive” approach.  He was convinced that Dr. H could help me.  Seriously?

After meeting with Dr. H today it is pretty clear that they probably barely knew each other.  Dr. H had worked in the chiropractic building that Dr. N purchased when Dr. H opened his practice over 10 years ago.  I doubt that Dr. N knew much about what Dr. H really did as a chiropractor.  Today I met a wacko pervert salesperson who barely knew typical chiropractic treatment lingo, for example, pushing off an “automatic activator” as a type of chiropractic care.  The device looked like a football mouth guard with rubber tips attached to an electric handheld jigsaw.  Frightful.  I wondered if he had made it himself?

Shortly into what I thought would be a chiropractic exam, Dr. H asked if he could pray with me.  He had already professed to be a “Christian” and pointed to the pictures with scriptures on it in his waiting room.  Well that is nice.  Usually I look for the framed college degree certificates and a current professional license document — I did not see either, anywhere.  I said, “I guess so,” about the prayer thinking that I would learn a little about what he truly believed.  I had already disclosed that I was a Christian.  Ever notice that so many people throw around the term “Christian” and it has nothing to do with a heart surrendered to Christ?  The prayer was nice.  Then the “shoe salesman” song-and-dance began.

Dr. H’s sales pitch began right away guised as checking acupuncture points whilst holding a bottle of this or that supplement.  Later I recalled that he seemed a little nervous and displayed a very intense affect touching the pressure points around my rib cage.  I have seen many different chiropractors and acupuncturists in the past perform a similar exam so this one was not unusual, except for the collection of bottles.  His mannerisms were also unusual however.  He had started my visit 20 minutes late while finishing up with another patient.  (That patient left with a big bag of new supplements.  Hmmmmmm.)  I had mentioned at the beginning of my appointment that I needed to leave at a certain time (to go to the hospital to have my external IV flushed) so before long he started speaking faster and faster:  repeating himself, referring to the time, and bringing out a few more bottles.  Dr. H pressed for agreement with his assessment:  that the chiropractic adjustments would not hold unless I started a heavy metal detox protocol before my first adjustment.  The appointment today would be for “just talking.”  Would I like to start the protocol today?  Could I come back tomorrow to finish up the physical exam?  Or how about later this afternoon?  He could even meet me at his office at closing time!

Did I mention that his prayer sounded good?  Yes, it sounded like a typical prayer except for one word:  undressed.  He prayed to the Lord something about wanting help to “undress” the issues that I was having to be able to help me.  Undress?  The word stuck in my mind throughout the appointment.  What kind of a prayer is that?  Undress!  What kind of a medical term is that?  Undress.  Where the h*%$$ is your mind Dr. H?  I certainly am not a bombshell these days and was dressed very plainly with partially wet hair.  I would assess he is approximately the same age as I am.  SO WHAT.  And where is your office receptionist?  Do you always see female patients alone in your office in a more secluded part of the office park?

I did what I could to state that I would not be interested in any additional products at this time since I had just started IV treatments and could not risk ingesting anything else new.  I was interested in chiropractic care by a chiropractor who was skilled in manual adjustments of the spine.  He mumbled something about “manual” adjustments.  He could do those too but sometimes a patient needs the mechanical treatments of a device like the “U” jigsaw device.  I gathered my things as he was speaking and prepared to leave the office.  I paused and clarified if I needed to make a payment for his “consultation” and he said “no.”  We were “just talking” and I could take care of that in the follow-up appointment.  I said that I would need to call him back and went out the door.

Sitting in my truck I felt a strong tic zip rip out of my frame and jerk me around.  At this point I was aware that the session I had just endured was very intense and that there was a strong essential oil-type scent in the office and even stronger in the examining room.  Dr. H denied the use of any scented products and had opened the two windows for me, after which I expressed gratitude.  He also said that he was not aware of any water damage to the office (that would indicate a latent presence of mold).  So what was I reacting to now?  A short seizure attack followed.  I was pretty shook up that I’d had another attack in the middle of the day!  Why is this happening when I was not bothered at the time by the herbal scent in Dr. H’s office.  Of course I was definitely upset about Dr. H however!

I sat for awhile to allow time for my psyche and sensorium to recover.  Sometimes I never really know what sets off an attack.  Much later this evening I characterized the experience, the incident at “Health and Wellness” something or another as a form of spiritual warfare.  That guy was a fraud and weird!  He never smiled.  And he pushed products before ever completing a traditional chiropractic exam.  Yes, he completed a clinical interview of my history, reviewed the information that I provided on his intake form,  and threw up my x-ray films on his light box.  Yes there were two models of a spinal column on display in the corner and the typical educational posters on the wall that you might find in a chiropractic office.  But everything else was odd, was inappropriate.  Nope, I won’t be seeing Dr. H again.

One problem remains:  my x-ray films are still at his office!  I had not retrieved my films in my state of recovery after the seizures and time pressure to get to the hospital.  Well after talking to my husband about the whole ordeal tonight, what needs to happen next is perfectly clear:  it’s time to send in the BIG GUNS!  Steve graciously agreed to pick up the films for me.  Yes!  For me to go back could be an abusive encounter.  For my 6 foot 1 man of steel to go back to the office would be a different encounter altogether.  Tee hee!

Yeah, I was wrong when I was single, joking with my spinster girlfriends just 7 years ago:  sometimes you do need a man.  Sometimes you need to send in the big guns.  And this time I am grateful to have had some wits about me to get out of there before I made a bad decision or something worse happened.  As it turns out, Dr. H’s chiropractic license is current with the State of Indiana.   He has no sanctions or restrictions on his professional license.  Good for him.  Too bad for his next female patient.  I guess I’m going to have a neck headache a little longer.  This other headache is history!

They really need to work on their transfer technique!

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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?

Wolfie, the bee and me

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You might think that an Advanced Master Gardener who tested as understanding about garden insects would be a little less squeamish about bugs than the average person?  Er, no.

You might think that scaring the wolf spider who fled under the passenger’s car seat, and the “barrier” of the light of a flashlight and a floor space clear of travel garb in which to hide would make the back seat a safe haven for the 6-hour drive home?  Er, no.  I opted for the trunk of the station wagon!

You might think that I’d be used to a sweat bee pestering us at the outdoor dining patio of a small town restaurant since it’s a common phenomena for late summers in Indiana?  Er, no.

And you might think that the gnat in my wild rice was no big deal since I only planned to eat 2 tiny bites due to dietary restrictions; I’d already eaten them so I shouldn’t care right?  Er, no.

Yeah, you might think that a 15-hour road trip to pick up my River Bear husband’s new kayak would be uneventful for the dutiful wife passenger . . . er, no!  For me it was the little things that meant a lot when they were crawling and flying too close to my personal body parts, facial orifices, and comfort zones!  Perhaps the 7 or so tic and seizure attack zips during the afternoon put me a little on edge for the first leg of the trip from Fort Wayne, Indiana to Erie, Pennsylvania.  I had brought ample snacks, blankies, and a pillow for maximum cushy; the lush countryside as we travelled from the flat soybean fields of our homeland to the foothills of the Appalachian Mountains made for ample eye candy in between rest stops as well.  I guess I didn’t do so well after all.  I just wonder why spontaneous adventures like these can no longer be, er, “normal?”

Sorry for the down mood.  I spent most of the day in bed today recovering from our day trip.  Gratefully, Steve has a beautiful Epic V12 surf ski in mint condition now, for a steal-of-a-deal price:  $500 below the boat he sold to get it.  My guy sure knows how to trade boats!  As for me, I missed attending a meaningful wedding this afternoon with my beloved and many of our friends from church; I had more tic attacks and convulsions plus an additional 4 1/2 hours of sleep instead!  I woke up worthless except for the intact ability to cruise the internet in bed for hours.  Gratefully I’d made dozens of veggie turkey burgers two nights ago to sustain me with the intermittent, partial bag of Beanitos chips.  Ahhhhh, such is the life of a person lost in the recovery from Lyme Disease.

So where am I now?  I’m more stable as I’ve passed my bewitching hour of 9 to 11:00 p.m. when I usually have a noxious episode.  Thank the Lord I already covered that one earlier today!  My husband has graciously attended to some house chores and provided an occasional kiss of encouragement here and there.  I, too, would have liked to have hidden in the dark under the “seat of life,” buzzed about aimlessly until I found what I was looking for, or curled up next to the softness of a mound of carbs . . . I guess from here I will proceed otherwise.

It’s time for me to crawl like the slow-moving sow bugs on our hardwood floors, before the Throne of Grace.  I need Jesus.  I need an infilling of the Holy Spirit, nothing else.  I need to go it alone at what ever miles per hour it takes to drive home into my heart that this too shall pass.  My thoughts need softening and only the Lord can bring this gently, lovingly, perfectly.  Oh my Jesus, meet me here this night.  Let there be Your light and nothing else.  Thank you Lord for hearing me.

Just Julie

Her Color is Lyme

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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

 

So where are we now?

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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