THAT FAMILIAR FEELING

the better part of last week was pretty rough.

i had a sharp increase in the intensity of my symptoms. it generally came on around 4pm and lasted until 9 or 10am the next morning...then for the most part i was able to push through the day until 4pm rolled around again...
but between 4pm and 9am was pretty brutal...drenching night sweats,shaking chills, tremors, comatose like fatigue, non stop headache, that gruesome internal pressure that slowly ebbs it's way up your spine until it has a vice like grip on your neck and your head feels like it will implode, and my brain turns to complete mush - i feel it coming on - much like you can see the misty fingers of fog rolling in over the ocean, so the fog creeps over my brain until it is a fuzzy, encapsulated entity of inability to reason, process (as in, 'i can see you and i can see your lips moving but i have no idea what you are saying') or cope with the noise or hustle and bustle around ...

reality is blurred out and insanity reigns...
and that familiar feeling of "this nightmare will NEVER end" is a hysteria that seizes your heart and threatens to knock the fight out of you

sigh.
all classic hallmarks of babesia
so was it the babs being active or the babs actively dying off (which would mean this could have been a herx?)
i am loathe to label this a herx
that would just be far too exciting a prospect to consider!
huh? how so?
well for starters i'm used to herxing leaving me bedridden for weeks on end
this one was relatively short lived and was relatively easy to cope with...of course, if you had asked me when i was in the throes of an episode last week i might have told you differently

but
i'm used to THINKING i am dying
rather
than just FEELING like i am dying

trust me, that alone is a huge difference!
dare i hope that this was a herx indeed ...and my body just more effectively handled the toxic load of a die off?
that would be so cool
and
it would certainly be in keeping with the progress i have been making since starting my green goo

and there has been progress
massive progress
and given the high level of stress we are dealing with in regards to parker, the fact that i am experiencing any level of progress, let alone such a remarkable amount of progress is nothing short of miraculous.

since the beg. of sept i have managed to go for a 20 minute walk almost everyday. in the beginning it was a stretch - by the time i'd get home my joints would ache, i'd be exhausted, have blurred vision and i'd be swollen and puffy. this was probably most likely due to the exercise helping to release toxins from my system.
as the weeks have progressed, my symptoms have become less pronounced and i've been able to slowly increase my walking pace. now i'm working on increasing my time from 20 to 30 min.

i've been to church. i had not been to church since early spring...and now i've gone 4 sundays in a row.
and
i've even made it to our Bible Study group. 2 times. i only made it to bible study a total of 2 times last year.
and
i've even seen a return to some of my ahem, "domestic skills"...like having the energy to make school lunches (when i don't forget, oopsy!)
and having the brain power to navigate a recipe and bake?
yup, been there, done that this week.

i made cookies for our bible study group.
disturbing? yes. appropriate? probably not.
bet they're glad i'm back.

yes, all this progress is awesome
and scary

i want to embrace it yet i hold it at an arms length
am i finally, really, truly at the place where my herxes will merely be speed bumps on my road to recovery rather than the cavernous pits they have been up til now?

it is overwhelmingly awesome and scary.

i've made progress before only to have ability ripped from my grasp time and time again...this recent progress has me experiencing a new found level of wellness. oh, how i yearn for THAT to be the familiar feeling.

i hate that i can so easily fall prey to that familiar feeling of "this nightmare will NEVER end"
but
but i will keep trusting that progress is being made...even in the moments when it doesn't feel like it.

ONWARD. UPWARD.

CROSSING THAT BRIDGE

today we crossed THAT bridge...we had parker tested for lyme


his blood was drawn here and was sent to the lab in the USA that specializes in testing for lyme and other associated tick borne diseases.
i think it will take about 2 weeks to get the results


it took a lot of courage to cross this bridge today...and not just for parker who had to endure this - his 3rd needle stick in 2 weeks. it's taking courage for all of us. i've spent a lot of time over the last couple of weeks asking and seeking to hear God's voice in this. petitioning Him to give me (us) something to hold on to for my (our) kids... just before we headed out this morning, i read the following in my devotions...

"what a joy to know that You are the same today as You were centuries ago in isaiah's day, when You promised to rescue Your people in a hopeless looking situation, when the enemy seemed to have prevailed. how i love the words You spoke to them: 'those who hopefully wait for Me will not be put to shame...even the captives of the mighty man will be taken away, and the prey of the tyrant will be rescued...

"for i will contend with the one who contends with you, and i will save your sons."

god has given us the courage to cross the bridge today. we don't know what is on the other side but we know that He moves ahead of us. we don't know what to expect - i think, as weird as it sounds, that we will be totally shocked by a positive OR negative result. until we know... we take comfort and find peace from knowing that nothing surprises God. absolutely nothing. and no matter what the outcome, we can look back on this day and these pictures and say,
"remember how, in spite of how hard and painful that day was, we felt God's presence there with us?"

JESUS CALLING - 33 MILES



over the course of the last couple of weeks, we knew that it was important (and necessary) to rule out the various suspected diagnosis that parker has been so symptomatic for... however we were painfully aware that time is of the essence if what we were dealing with is indeed lyme. i want to give a shout out and thank you to a special lady who assisted us in moving on the testing in a timely fashion.




we had ordered the testing kit from the US lab 3 weeks ago...and are still waiting for it to arrive (most likely because it has been tied up in customs). yikes! last week i put out a request for a kit on a lyme forum. hoping that someone in our area might have an extra testing kit on hand. a lovely lady responded to my request and then went out of her way to send us a kit. of course, personal info had to be swapped to make the drop and that is when i learned that she reads my blog...and we just happen to share a special affinity for crows.



and thank you to those of you who are spending time on your knees on behalf of our family. your prayers are felt. i have been overwhelmingly moved to tears by the messages...some that included phrases like "storming the throne for you", "on a daily basis we are battling in prayer for you", "our Father hates to see suffering".

thank you to those of you who are petitioning our Father with such heartfelt cries.
we are blessed.

DARK CLOUD OF SUSPICION

we still do not know what is causing parker's continued illness
last week the doctor suspected tuberculosis
and immediately sent us to public health to have parker tested for it
that was a 3-day wait for negative results

at the start of this week, parker was beginning to finally 'look' and 'act' like himself again. even though he was very tired and in a lot of pain, he went to school both monday and tuesday for about 2 hours. we were hopeful that he was finally on the road to recovery. then wednesday rolled around and he was down for the count again. yesterday he felt a lot better. today he is not so hot at all. he's up, he's down and so the yo-yo goes. while he has definitely shown some signs of improvement this week, any improvements have been sporadic and not lasting.

this is a difficult post to write

we continue to live under a dark cloud of many suspected diagnosis
riding out that emotional roller coaster of testing and waiting and 'ruling out'
at this point, we know a lot of what it is not - but nothing of what it is
but we find ourselves suspecting the unthinkable

the possibility that what is ailing parker is lyme

there are many reasons behind this suspicion...right now, i just do not have the strength to get into all that. i will say that this is not a new-found suspicion. this possibility has been on our radar for a long time. we have known that we would have to cross this bridge at some point...yet have desperately hoped that we never really would have to.

now that time has come.

right now, a diagnosis of lyme seems to be a strong possibility.
DR H has been consulted and has recommended we move forward with testing parker for lyme.
we will be doing that on monday.

we are endeavoring to approach this as "just one more test that will rule OUT a possibility".
yet, with each passing day, the knot in our stomach grows. on a good day, when parker seems to be getting better, it is easier to treat this as such and keep our fears in check. despite the knot in our stomach, we can be calm and face all of this in a matter of fact sort of way. on a bad day, when he is pale, fatigued and has to crawl to get around, well that knot in our stomach churns its way up our throats and grips our hearts in crushing fear. please understand that for us, facing diagnosis x, y or z has been nothing compared to facing this possibility. from our perspective, a diagnosis of lyme is a worst case scenario.

we take comfort in knowing that we have one of the best LLMD's on board. in the unlikely event that our suspicions are confirmed with a positive test result, we are one plane ride away from immediate and aggressive treatment.

more importantly, we take comfort in knowing that God goes before us on this too. He's crossing this bridge with us. He is our light in the darkness and we can trust Him with this journey too.

Psalm 91:1-6, 14-16

Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
This I declare about the Lord:
He alone is my refuge, my place of safety;
he is my God, and I trust him.

For he will rescue you from every trap
and protect you from deadly disease.
He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.

Do not be afraid of the terrors of the night,
nor the arrow that flies in the day.
Do not dread the disease that stalks in darkness,
nor the disaster that strikes at midday.

The Lord says, “I will rescue those who love me.
I will protect those who trust in my name.
When they call on me, I will answer;
I will be with them in trouble.
I will rescue and honor them.
I will reward them with a long life
and give them my salvation.”