New Sport: Thwarting Disaster!

So glad the Lord gave me the presence of mind to cancel a Methacholine Challenge Test today.  I feel exhausted from the prospect that I could have died had I gone through with the test . . .

In the process of diagnosing asthma, a Doc orders a pulmonary function test.  If your lung capacity is deficient for either the intake or exhalation of air, you may have a problem warranting treatment or at least a rescue inhaler.  Since I started having severe chest pain and compression symptoms at the end of March, the LLMD ordered this test for me.  I completed it about a month ago with findings suggestive of mild asthma.  Hmmmm.  I’ve never had breathing problems before and the onset coincidentally occurred during the stress of relocating back to my home after mold remediation.  I was scared.  A lot was at stake.  We had spent thousands of dollars to remediate our home, much of it not covered by insurance or the gift of friends.  How was I going to do after 76 days away from home?  Turns out that I did o.k. initially then the noxious symptoms gradually returned.  Oh well.

We have continued to narrow down and eliminate the potential triggers over these past two months so I can get well.  This takes time and there have been some successes and failures alike. As long as there is an underlying Lyme Disease process (that I am not well enough yet to treat directly), I will have some sickness every day.  But the bottom line is that I did not have difficulty breathing or feel like an elephant was sitting on my chest until the last week of March, 2013!  The LLMD ruled out a heart attack.  Then a negative lab finding for a complication of mold illness suggested that I might benefit from a particular prescription medication, not covered by insurance.  I tried it and am receiving some benefit, gratefully.  The chest pressure is less most of the time.

Today was an exception.  I had a particularly severe reaction to our ol’ church building last night resulting in about 45-minutes of intermittent seizure attacks and marked chest symptoms.  I was still pretty sore today despite taking the medication for the latter symptoms.  So when hearing the risks of the Methacholine (MC) Challenge Test today including a full blown asthma attack, I got really scared.  The MC progressively constricts your airway while a respiratory therapist takes measurements of your breathing.  Holy cripes!  If your values go down 20% then they give you Albuterol to open your airway.  Well isn’t that dandy.  I was given Albuterol as part of the test protocol during the Pulmonary Function Test last month and did not notice any difference in terms of breathing easier.  Thankfully, I had a respiratory therapist who was willing to talk with me in detail today about the test, his experiences, my PFT findings; we agreed about the extreme likelihood that I would react negatively . . .

I feel like I stared death in the face today.  If I would have reacted, it would have not only been a full blown seizure attack AGAIN, but the risk of respiratory arrest.   Holy crap!  Remember the cartoon I posted awhile back about feeling like a lab rat?  This lab rat could have been no more.  I crossed out my name on the consent form and wrote, “patient declined test.”

When I have a seizure attack with chest compression, I do not breathe for several seconds.  It is by the grace of God alone that my breathing re-starts!  If I try to initiate active movement, such as trying to inhale, the volitional initiation of movement triggers another seizure attack.  A similar reaction happens when trying to talk or move as the attacks are occurring.  Eventually I collapse and need to rest.  Much time needs to pass thereafter before I can function on my own or someone else has to lift me up and begin to move me.  Sometimes I can initiate fine motor movements and not gross motor movements (such as walking or bearing weight on my legs).  Usually my biggest challenge is simply trying to breathe again.  Hyperventilation comes first then deep breaths and labored respiration.  Normal breathing is last.

O.K., does that sound like asthma to you?  Perhaps some aspects of it are like asthma.  I don’t think that most of it is asthma.  Google it and see what you think!

So my new sport this evening is first to write until my exasperation with the complications of Lyme Disease are more on the computer screen than in my head.  Sorry for you, the gentle reader and spectator.  This day was a bad one.  The sport of living with long term illness continues as I try to listen to the Holy Spirit and all the advisors/coaches He has sent to get through the game of life.  I am crying as I write this.  You the spectator have witnessed the athlete getting injured.  Not only is my chest still sore but my heart is bruised as well.

I talked to my precious husband on the phone from the parking lot of the hospital this afternoon.  God bless that man!  I was exhausted and barely realizing the significance of my experience inside that building when his kind words soothed my soul.  Steve has asthma and has had a Methacholine Challenge Test in the past.  He was worried for me, praying for me.  He agrees that it was too risky to complete it and ’twas better to have refused it.  After we talked I still had a few errands to run, prescriptions to pick up, supplements to purchase, and of course:  just a couple more plants to take home from a mom-n-pop nursery.  So glad Young’s had the Sweet Marjoram I haven’t been able to find anywhere else in the area.  Just saying the name,  “Sweet Marjoram” makes me feel better.

Now that all of this is “off my chest” I can go do what I do best.  It is dark now but that never kept me from gardening before.  Besides this time it’s planting two planters and I can do that in our garage on my very cool potting bench.  My husband’s son, Daniel, gave me that awesome bench 5 1/2 years ago.  Love it.

Sounds like Steve’s home.  Sigh.  All is well.sweet marjoram

VIP New Treatment Tracker: Day 1

VIP47900-24-3With the rather loud barking of our pup, the mail lady delivered the foam cooler today containing vasoactive intestinal peptide.  Wow.  It is here!

I quickly gathered myself together with a quick prayer, reading of the instructions, and sipping some water before ceremonially administering the first dose.  A quick spray in one nostril delivered 50 mcg of VIP in a stable saline solution.  It must be stored in the refrigerator so I found a special spot for it shortly thereafter.  Here we go again on another great adventure:  another promising new treatment approach to lessen the burden of recovery from Chronic Lyme Disease and Chronic Inflammatory Response Syndrome.  Like Mach I with your hair on fire, no?

Within an hour I had a slight runny nose that quickly resolved.  No problemmo and this could be expected from a nasal spray.  The stress of it all brought fatigue so a nap will follow shortly.  Then maybe I will shower for the day.  It is beautiful outside today after all.

(For more information on VIP, head to the References section of this blog.)

My Lord goes before me this day and always.  To Him be the glory for the results of this new treatment approach.  He will be the author of the story that will follow, not the pharmacy, doctor, nor myself.  He allowed me to stumble upon this information again and participate in my LLMD prescribing VIP for me.  Thank you Jesus for preserving my mind this past year so that I could respond when a new modality presented itself.  Thank you for continuing to lead me, walk with me and see that this whole ordeal not be wasted.  There are many blessings You have brought me despite the dark days  that began October 11, 2011.  Your light is forever before me no matter the outcome.  Lord help me keep my eyes fixed on You.  And if it is your will Lord, heal me.

In Jesus name,  amen.  Just Julie

Partner with Me in Recovery

If you would like to partner with me in covering the extensive out of pocket cost of recovery, I would be most grateful!

The donated funds will be separate from the “Trinity” home business account and applied only to the costs of medical care.  Current costs are a minimum of $110 per week and are not covered by insurance.

  • Medication
  • Pharmaceutical grade supplements recommended by my Lyme Literate Medial Doctor (LLMD)
  • The initial investment in the Rife Technology treatment machine
  • Weekly medical appointments (LLMD and physical therapy co-insurance payments) and
  • Special dietary requirements as recommended by my LLMD.

Your donation will be considered a non-tax deductible gift and not a Foundation or non-profit/501(c)3 donation.

To make a donation, click on the “PayPal Donate” button above and you will be directed to a PayPal account that I have set up under Trinity Jewelry by Design.   Enter the amount and log into your Pay Pal account to complete the transaction.  You may also make a donation with a credit card by clicking on the “PayPal Donate” button above, entering the amount, and clicking the blue letters “Continue” at the bottom of the page.

Thank you for your consideration in helping me finance the cost to recover from Lyme Disease and the clinical presentation of Chronic Inflammatory Response Syndrome.

Natural Health Tips that Make a Difference with Chronic Lyme

Health Tips
Health Tips

Faith in Jesus is Critical

Yeah so it’s the message I put on the metal template of my new jewelry.  Of course.  It’s not just a trend for me.  Faith in Jesus is critical to my survival these days!

I think I slept  2 hours, twice last night, awakened by demonic influences, seizure attacks, and a massive headache.   Somewhere in the middle of these 2 episodes of sleep, I pushed myself out of bed to eat, drink, and read . . . my husband’s Popular Mechanics magazine, of course!  Reading about the most innovative inventions of the past year is sport for a re-budding entrepreneur like me.  I love creativity in virtually all of its forms.  We all have creativity in us, I believe placed here by the Lord of all creation, the master Creator.  And somewhere in the middle of reading about these inventions I developed a theory about my seizure attacks (formerly known on this blog as “seizure-like tics.”)

:J
Here goes:  if I have seizure attacks when falling asleep and perhaps in a unique stage of the sleep cycle then can the attacks be caused by disease in the sleep center of the brain?  I have pulsing sensations behind my eyes at times, perhaps near the hypothalamus which is part of the brain’s sleep center.  If this dysfunction is localized I wonder if it is possible to use my Rife, Beam Ray machine to target the frequencies of these particular tissues?  Cautiously I may even consider medications or supplements (although I have already tried several of each!).  My brain MRI was normal so there’s no structural issue.  Hmmmmm.  Looking forward to my next appointment with my Lyme Literate Doctor; we have so much to discuss!

:J

The Lord gave me and you the ability to create.  The Lord gave me and you the ability to use our minds to solve problems, reason, remember, learn, and experience emotions.  These are called executive functioning skills.  We are unique from all animals and plants in this regard and with these gifts comes stewardship.  I will only ask the question for myself:  am I using what I have, where I am, with what abilities I’ve got?  Better said is as follows:

1 Peter 4:10-11

New King James Version (NKJV)

10 As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God. 11 If anyone speaks, let him speak as the oracles of God. If anyone ministers, let him do it as with the ability which God supplies, that in all things God may be glorified through Jesus Christ, to whom belong the glory and the dominion forever and ever. Amen.

So I create.  I try to figure this Lyme stuff out.  I also wait on Him for answers, inspiration, healing, grace, mercy, everything.   In the middle of the night, when I can do nothing because of the wretchedness of Lyme Disease, I simply say the name, “Jesus.”  In the end, faith in Jesus is critical.

:J
Thank you Lord for increasing my faith.  Thank you Lord for meeting me in the middle of the night last night.  Thank you for the comfort and faith I can feel in the arms of my Steve.  I humbly submit to your will and purpose.  And if something good comes from this wretchedness, may You alone receive the glory.   In Christ’s name, Amen.