Sometimes you spin your wheels

“It was the best of times, it was the worst of times . . .”  Charles Dickens

I have so much for which to be grateful this day.  Despite the absolute insanity of my days, I can still rise above the mud and muck and see the sun shine on a few blessings.  I get to see that the Lord goes before me, ordering my steps even before I realize that I am not stumbling but walking humbly in His grace.  I am so glad that He is gentle with me.  After a rough night there is usually a great nap within a day.  After much confusion, the Lord uses a new friend to point me in the right direction.  After a very long wait to see a medical professional, there is a sweet phone call to another dear friend while waiting in the lobby.  After contracting a serious illness, there are new sojourners to acknowledge me, walk with me, light the way to hope.  And after so much unrest there are peaceful moments that transcend my understanding!

Nothing is truly wasted in God’s economy if we but keep our eyes focused on Him.  We must press on.

If your situation stinks, get your mind out of the muck and consider coming to Jesus.  Get into His Word, the Bible, and you will find what you need.  He is waiting.  You can have an eternal focus that will transcend this day.  Seriously.  Psalm 23 lifts me up every time.

Nissan Frontier on a bad day!
Some serious mud on a bad day!

 

Now that's better!
Now that’s better!

Treatment Scorecard

In January of 2012 I was diagnosed with Lyme Disease by a brilliant Lyme Literate Medical Doctor (LLMD).  I had never fully recovered from an episode of viral hepatitis after kayaking in a local reservoir in October of 2011 and my LLMD went looking for answers.  The diagnosis of Lyme Disease was made.  A year later, additional testing revealed mold illness and we remediated our home from January to March of this year.  During the interim, I’ve been treating for Lyme Disease initially with antibiotics and subsequently with a Rife machine and boatloads of pharmaceutical grade supplements.  Recently Candida was added to the diagnostic profile and I further restricted my diet, started on a supplement specific for Candida.  Now for the heavy hitters from recent blogs:

Let’s see, about 2 months ago I was all excited about vasoactive intestinal peptide or VIP.  It’s used to treat Chronic Inflammatory Response Syndrome, a complication of mold illness which presents a significant neurotoxin challenge for recovery from Lyme Disease.  Basically this means that I react to most noxious sensory stimuli very negatively.

Update:  I’m still at one nasal spray per day and am unable to increase it without tremendous fatigue.  The seizure attacks (which began in March of 2012) are of a shorter duration when present and present one less time per day.

Shortly after starting VIP, my LLMD prescribed Losartan, a blood pressure medication.  Losartan lowers TGF beta-1, a hormone that can cause chest compression-type symptoms, another complication of mold illness.  The symptoms have been a daily issue since March, interfering with sleep and causing my breathing to stop at least once per day temporarily during seizure attacks.  Frightful indeed.  My LLMD tested me for asthma and lung disease; he prescribed Albuterol, an inhaled medication.  Geez!  I’ve used the inhaler once.

Update:  It’s now a month later and gratefully the chest compression, pain, and restricted breathing episodes are relieved at least 65%.    The addition of this second medication may be why I am not able to titrate up the VIP yet.  In Dr. Shoemaker’s protocol for mold illness (reference:  www.survivingmold.com) the TGF beta-1 level should be treated first.

The most recent setback was a flare up of a persistent urinary tract infection and possible interstitial cystitis.  By the grace of God, this time a specific bacterium was found in the culture:  citrobacter feundii.  This bug is common in those who are immunosuppressed.  Yeah that’s me.  With a CD-57 of 17 (supposed to be above 160) denoting severe Lyme Disease, it makes sense.  I don’t like it though!  The treatment is typically from a class of antibiotics that I have not been able to tolerate.  In March this meant three straight days of intermittent seizure attacks.  No thanks.  I am not going there again!  Turns out that the LLMD prescribed one of those same types of drugs and the pharmacy did not catch it either.  In the back page of a computer file was a notation that got missed . . . By the grace of God I caught it and got my 40 cents back as I returned the bad boys.

Update:  My LLMD prescribes Doxycycline.  Now those of you familiar with Lyme Disease know that “Doxy” is the drug used for treatment when people first get bitten by a tick.  Sometimes it’s used at the beginning of a chronic Lyme antibiotic protocol or pulsed in rotation with other medicines.  I had never used Doxy.  Whoa.  I was scared!  What kind of herxheimer reaction would follow?  (Herxing is like a detox reaction when on a cleanse protocol.)  I’ve read that Doxy can trigger every kind of symptom under the sun.  I’ve also read that it’s going for $400 or more around the country.  At the time of this writing I am 5 1/2 hours after the first dose and I am feeling better.  The UTI symptoms are subsiding already.  The cost was cheap at my local pharmacy.  Whew!  One dose down and nineteen to go!

The last update is a minor one:  my response to noxious mosquito bites.  I seem to be a magnet for mosquitos, day and night, getting bitten through my clothing and in any spot not doused in DEET-laden bug spray!  Fifteen mosquito bites this past Saturday set off 36 hours of seizure attacks and sickness including Father’s Day.  Bad timing.  Oh well.  Nothing would soothe the inflamed bites either.

Update:  Monday my LLMD office recommended some Rife programs for Lyme and a specific co-infection called Bartonella.  Within a few minutes of running just 90 seconds of each program, the itching subsided.  Praise the Lord!  They returned later but were diminished overall and this occurred in less time than I had noted using various over-the-counter remedies/baking soda.  Yeah God.

I think I’m only going to go outside during the daytime when it’s cooler and I’m covered.  Besides, photosensitivity is a severe side effect of Doxycycline so I better stay out of the sun for the next 10 days!

Sure has been a crazy Spring and Summer so far.  Well actually the whole year has been insane!  I gotta tell ya that I am actually very encouraged this day so I hope that you will be as well.  Seems like the worst setbacks have always given way to the best insights and new directions.  I haven’t a clue why the Lord has allowed this crazy journey in my life.  My husband is a saint!  I do know that the breaks in the illness are very precious times between me and Steve.  I do know that I find myself grateful for smaller and smaller miracles that I might have missed if my life was “normal.”  I have already seen that my experience can benefit others as I have benefitted from theirs too.  I love to blog and make jewelry and had never done either before.  I have finally made some close friends here in Indiana.  And in the end, it is clearer than ever before that the promises of the Lord Jesus Christ bring more hope than any temporal experience in our days.   (Reference:  Psalm33)

Sure, Lyme Disease and all the rest are a drag.  So is the State of the US government!  We are all stewards of our experiences (good and bad), our time, our resources, our talents, our opportunities.  We can waste them, idolize them, or let them distract us from the eternal things that really give meaning to life.  “Whatcha gonna do with it?” is the bigger question really.  Well?

Jesus is Enough

Jesushugginggirl

 

Here is where I am at today, in the arms of my Lord.  Tough night.  Tough day.  And He knows and cares for me always.  Thank you Jesus!

 

 

 

 

 

 

 

 

 

 

 

 

 

Enough Weirdness Already!

I realize the last posting was a bit weird.  Please forgive me.  This is how my mind works sometimes:  trying to be funny, sincere, and well, express myself in some creative way.  The result this week:  an odd blog posting!

And now for today.  The Lord is laying on my heart the reality that I may not be able to return to my profession of occupational therapy.  To work in healthcare requires an incredible ability to serve others under stressful circumstances; work in environments laden with noxious smells, microorganisms, temperature and sound variations; meet a wide range of physical demands from extensive sitting to heavy lifting; and to continuously learn, apply, and re-evaluate extensive amounts of technical/scholarly information on a daily basis.  This is impossible with the ongoing neurological complications of Lyme Disease and Chronic Inflammatory Response Syndrome.  On the positive side, the need to be adaptable, resourceful, and creative in OT has graciously remained during this time of illness.  These skills have been instrumental in helping me cope with the chronic illness that continues.  The other skills come and go.  Maybe they will come back?  Who knows.  This is a big realization.

Thankfully I do not need to make a decision about my career this evening!  (However I do keep my licensing and continuing education requirements current, you know.)  The Lord is also laying on my heart my next project within my home business, Trinity Jewelry by Design, so I will focus on that for the next few months.  I’m thinking of developing some sports-related products that may be attractive to the kayak paddling community.  If some additional research looks promising, I may move forward quickly now that it’s canoe and kayaking season in much of the United States.  I do continue to learn a lot about using the internet, my online shop, networking, and the administrative requirements of a home business.  Watch this blog for new developments as you will be among the first to get the news!

Since Steve and I never really know the stability of his employment as they undergo more changes this year, we remain open to the larger issues of where we will live and what work will carry him into retirement.  We are not concerned about these types of unknowns, really.  It would be challenging if the Lord leads Steve in any career moves at this time in our lives yet we both have experienced successful job changes and relocations under a variety of positive and negative circumstances.  Jesus is already there, ahead of us in space and time with a plan for our lives.  So glad for that!  For example, I lived in the suburbs of the 3rd largest city in the US (Chicago) before I moved to marry Steve in the Fort Wayne, Indiana area.  In a city .04% the size of the Chicagoland area, I found the best husband, best doctor, best home, best quality of life, and best Bible teacher that I have ever had in my life!  I had no idea all this was possible!  Wow.  God is amazing and provides for our every need no matter where we are on the map.  (Proverbs 3:5-6) Very humbling, for sure.

So enough of the weirdness.  Enough of the need to know.  Enough of the need to control this or that.  Enough of the worry and strife.  I am going to stay in the moment and enjoy the crazy thunderstorm outside no matter what affect it may have on my illness or even if it blows out the power and this blog is lost forever.

I think I will be prudent and sign off now . . .  :J

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!