A marker of insanity

Look closely at this picture:

sheep, chair, hoof, trimming, animal, vet, husbandry, parasite, treatment

Did you know that you can purchase a heavy duty chair for a sheep?  Crazy stuff!  I cracked up when I saw it in the midst of researching online sources for parasite treatments.  This chair is for trimming the hooves of sheep.  I THINK I NEED ONE TOO!!!

“A sheep or a heavy duty chair?” you ask.  Who knows, maybe both!  Because that is just how insane things have gotten over here, trying to diagnose and treat a serious illness without a clear path to follow.  The latest example is trying to treat for parasites.  They harbor metals and toxins so it makes sense that my treatment would be so complicated, especially when markers for metals and toxins have been high for me at some point.  But try and define which parasite you have after numerous tests are inconclusive, you end up going down a dark hole of guessing or worse yet relying on alternative energy testing — neither one of which are appealing to me.

But I have seen parasites over here.  The worms you can see; the microscopic protozoa you cannot.  Over the past few months I have been treating them with a variety of herbals or limited doses of medications.  Some symptoms got better and my worst symptoms got worse for a day or two.  So what is it:  protozoans or worms?  Both?  Where would I have picked them up anyways?  Why have I gotten temporary relief with some symptoms and violent convulsive episodes and headaches with others?  The answers don’t come easily yet it appears that it is because I am on the right track after all.  Inflammation and brain swelling follows die off of parasites if they are in your brain, your central nervous system.  Many helminths can cause seizures.  Fortunately/unfortunately, brain scans have not found any cysts.  The only remaining diagnostic tools are more obscure labs or a lumbar puncture to test my cerebral spinal fluid.  I had spinal injections many years ago.  I don’t want a lumbar puncture!

So here’s how insane things have gotten lately:

  • If my Doctor’s office cannot find the right labs to process additional parasite testing then I am responsible to search for them nationwide and provide the office with all of the information, facilitate the referrals, and obtain the test procedures.  By the way, experience tells me that very likely I will have to follow up on getting the results to the Doctor’s office, confirming receipt as well figuring out how to fit reviewing them into my appointments already limited by cancellations 25% of the time by their office.  New appointments are 5 months from now . . .
  • The trial-n-error of a variety of herbal, over-the-counter, and drug options for treating parasites has left me having to manage virtually every aspect of this potential cause of illness.  Research continues to dominate my waking hours, trying to find the best review articles and treatment strategies for those that may apply to my care.  Thankfully my Doctor, after much resistance and lectures on his liability  concerns, will review this literature and make recommendations in light of it.  The newest step in me having to find appropriate laboratories seems too much to bear.  I guess I have no choice but to proceed and hope I find the right information online somewhere, Lord willing.  More time and dozens of more seizure attacks will follow daily in the interim.  At least Ibuprofen is helping now with the headaches!
  • The billing of two of three past treatment situations are my “special project” each week.  Looks like I just got the first one resolved from an ambulance trip in January so hey, let’s add two more, eh?  Getting pre-auth for a special injection and getting reimbursement for a specialized test in July remain.  No problem.  This is why we go through so many reams of paper around here dontcha know?  Printing out the documentation for tracking everything, following up, yada, yada, yada fills my days.  Just doin’ my job, ma’am!
  • My latest dilemma is the most crazy:  if I am convinced that parasite treatments are needed but I am unable to obtain the strongest ones via a traditional medical route then others in my situation have ordered medications from veterinary or international sources.  Ordering meds online scares the heck out of me!  Members of certain Facebook groups claim both are very safe options and have worked well for them when their Doctors poo-pooed their requests for treatment.  I just dunno about this . . .Systemic parasitic infections are often a clinical diagnosis just like chronic Lyme.  The latter seems to be more acceptable in illness-focused groups than the former.  But the evidence is growing (pun intended!) that one of the strategies opportunistic infections use to stay alive inside of you is to hide in larger parasitic organisms.  The body may even harbor parasites to keep these smaller organisms from killing us.  And the research confirms that parasites harbor toxic metals in possibly yet another symbiotic, protective mechanism. At some point you have to address both the chicken-and-the-egg in these toxic relationships.  Kill the parasites and out comes other toxins both organic and inorganic.  Talk about a “herx!”  At least now I have an Ultra Binder to minimize the herxheimer reaction.
  • Very simply, the only rescue remedy I have remaining to stop the worst of the convulsive episodes is a high dose of steroids.  Nothing else helps for more than a few minutes.  The problem with this is that my Doctor won’t prescribe but a few doses because of osteoporosis (that likely came from antibiotic treatment for chronic Lyme last year).  I understand his thinking.  However, he doubted me when I told him that I only used it sparingly even though I showed him the bottle with remaining doses still in the bottle!  He decided that it would be appropriate to use steroids when the convulsive episodes exceed 7 hours.  SEVEN HOURS!  That was what I did a week ago Saturday.  It was hell!  If I did not have those remaining few pills left, I would have landed in the Emergency Room again.  Holy cow.  Holy sheep?  What an insane treatment plan.
  • So I continue to stay up very late at night most nights because sometimes it lessens the convulsive episodes.  Often there are breakthrough spikes while I sit here with you and while my beloved sleeps soundly just beyond the door without me . . .

What an insane treatment plan indeed.  So gather ’round anyone lost in the sea of forgotten medical mania and serve up a tincture of sheep elixir for a sorry night of seizing under the moon.   Or maybe not.  I have no idea at this point.  But I gotta tell ya that wrapping up in a nice wool blanket on a bark-a-lounger sounds pretty good right now.  Move over Sheepy.  This gal’s gonna need to rest more than you do right now . . .

JJsheep, flower, bug-eyed, big eyes, lamb

 

 

Don’t confuse happiness with joy

In the words of Billy Graham:

Some people think Christians should always be smiling and happy, and something is wrong if they aren’t.

But this isn’t necessarily true.  Jesus stood outside the tomb of his friend Lazarus, and we read that, “Jesus wept” (John 11:35).  As he approached Jerusalem “he saw the city and wept”  (Luke 19:41) because of it’s spiritual blindness and guilt.  He knelt in the Garden of Gethsemane and was, “. . . in agony [and] his sweat became like great drops of blood” (Luke 22:44)

Don’t confuse happiness with joy.  Happiness comes with happy circumstances; joy wells up deep inside our souls as we learn to trust Christ.  Joy does not mean that we are never sad or that we never cry.  But joy is a quiet confidence, a state of inner peace that comes from God.

Life’s troubles will rob us of our happiness, but they can never rob us of the joy God gives us, as we turn in faith to Him and seek His face.

The joy of the Lord is your strength.  Nehemiah 8:10

From “What is joy?”  in Hope for each day, (2002).  Thomas Nelson, Inc.  p. 338.

I get this and hope you do too, Gentle Reader.   Few things can rob your happiness like waking up in the middle of the night 8-10 times with convulsive episodes and a massive headache.  It probably wasn’t nice for my beloved husband Steve either, awakened from a sound sleep lying next to me.  The aftermath for me felt like I banged my head in every direction against a wall.  Not fun at all!  Gratefully the dream I later woke up in the middle of (after more seizure attacks falling asleep)  was a reasonable one.  I mean that we had experienced something similar just under 2 years ago so it wasn’t that bad really.

I dreamed that Steve and I had moved temporarily into an apartment while some work was being done on our home only to have all of our belongings and the inside of the apartment become covered cascades of dust!  Yeah, that was not good for someone multiply chemically sensitive like me knowing that mold is often lurking in dust.  The situation was beginning to resolve when I woke up.  Phew!  It was just a dream!  This time the headache was less and the convulsions were replaced with less violent seizure attacks.  They actually helped clear my head some . . . and yet I still felt beat up.  The next few hours were meaningless . . .

Regardless, I have joy!  How is this possible you may ask?  Well, it’s just like the quote from Billy Graham noted above.  I have learned to trust Christ in all things, wretched or not.  Of course I cry in sorrow when a new treatment intended to help me makes things worse for awhile.  Call it a healing crisis, herxheimer reaction, or the like.  It’s a bite in the shorts any way you slice it!  But that doesn’t change anything between my Savior and me.  He meets me on my bed of sickness and weeps for my suffering.  This is not His intention for me yet at the same time my suffering will not be wasted because He has a plan for my life.  Maybe one part is this:  I am hoping that my suffering provided an illustration here of HOPE IN ACTION.  I pray that it will encourage someone out there who is suffering too.  HE CARES FOR YOUR SUFFERING TOO and will see you through it!

One day all of our strife and worry will be over as He makes our joy complete when He comes again in glory:  with unimaginable happiness too!  This promise holds true for those who love the Lord and call Him Savior.  If you are suffering, please do not let that stop you from seeking the best hope you have in your pain:  the person of Jesus Christ.  His love covers ALL.  In Him, you will find a joy that will transcend it all.  Gentle Reader, please do not confuse happiness with joy.  JJ

Jer 29.11

Some things remain a mystery, some not.

An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.

An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.

Today I am recovering from a terrible setback.  Turns out the herbal remedy from New Zealand with promising research is horrible for me in my battle with Candida Enteritis.  Will go back to my gentler protocol while I await results from testing that I will submit this week.  Thereafter I will schedule with a new clinic and in many ways, start over.

Sometimes, the dinosaur wins.

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

And then the dog threw up

Elle's Bone

Elle’s Bone

It’s all over now.  The Lord sustained us through another crazier than imaginable 24 hours.  If all things work together for good for those who love the Lord and are called according to His purpose (Romans 8:28), then all is well in this moment.

From Steve’s side:  he worked all day yesterday, drove to our home (undergoing mold/dust restoration), moved furniture, gathered a few things from Julie’s short list, ran his clothes through the dryer (to remove the noxious dust), showered, then drove back to the hotel room to meet his bride around 12:30 a.m.  Dinner was waiting and so was elusive sleep . . .

From Julie’s side:  I had endured days of noxious neuromuscular events (aka “herxing”) as a side effect of a new round of antibiotics, completed a medical appointment and Lyme treatment, arranged for the furnace to be cleaned in the hotel room, made dinner, and tried to get myself to sleep after making/cleaning up from dinner.  Seizure attacks interrupted my sleep and woke up Steve a few times as well, unfortunately.  I felt terrible for him!  Headaches and a myriad of yucky symptoms returned for me and I was unable to get up and take an Epsom salt bath to help mitigate the symptoms.  By 4:15 a.m. I was too numbed out too be bummed.  Perhaps that’s grace, I suppose.

The alarm went off to attempt to wake me from whatever sleep had transpired.  Steve turned it off and I drifted off to sleep for a moment until the sound of our dog gasping then heaving awakened both of us.  Yuck!  I dragged her into the bathroom just in time for the lamb bone from yesterday to make it’s reappearance.  Well, we were both out of bed by this time!  Happy Wednesday.

Steve decided to go into work a little late today and went back to bed.  As for me, the dentist appointment was a disaster.  This is recovery from Lyme Disease on a bad day.  It ain’t for wimps!  Even the maximum amount of nitrous oxide was not enough to prevent re-triggering seizure attacks as the procedure began.  The dentist and hygienist were gracious in employing every coping strategy we could muster to get me through it; the warmed water in a syringe for rinsing and the blue “blanky” helped some.  What was to be two procedures in two hours turned out to be one procedure in three hours plus 10 minutes on straight oxygen, 30 minutes in the lobby, and 30 minutes in my vehicle in the parking lot.  Whew.  I guess that I’m just on a different time table that’s all?

I do believe the NIKKEN Kenkotherm comforter with advanced magnetic technology is calling me for a nap about now.  I’m on a new antibiotic and I feel more stable.  Thank you Lord for my coconut yogurt treat when I got back to the room. And I love the feel of my warm puppy at my feet as I’m writing this to you from the hotel lobby.  The staff is so nice here.

********************************************************************

Nope.  Still not “there yet.”  Just endured another temporary setback that’s all.  Still haven’t arrived at “the station” noted in the Part 2 blog and may never fully “get there.”  This moment is good.  It’s all I have anyways.

You know, I think I need some chips too.  :J