RADIOACTIVE PARKER & THE UNEXPECTED DIAGNOSIS

parker's bone scan went smoothly today. he's a brave little trooper and rocked the whole 3 hour ordeal. he received the 'dreaded' injection at 9am this morning and immediately underwent his first scan. this was all completed by 10am and we were able to go home to rest until we were due back at the hospital for the second scan which was scheduled for 12pm.



we decided that we would make this bone scan a 'family bonding affair'. why not, eh? it seems only fitting, with all that is going on in our family, that we'd turn a medical procedure into entertainment...with snacks to boot.


okay...cheap entertainment was only part of the motivation. all the kids have been struggling to cope with everything. parker is scared and nervous - but thinks getting a trip to SF out of the deal is kinda cool. we are amazed by his courage and his continued cheerfulness amidst his suffering. by nature, taylor is a sensitive and caring big brother with a fierce sense of protectiveness. having mom sick and now his little brother sick is a burden that weighs heavily on him. avery has been dealing with anxiety issues over the past couple of weeks. she has had a sudden emergence of an intense fear and worry about tornados and fires. she has been very emotional at school. one day last week, she called home from school and in her sweet, "boston" accent said,

"mommy, i'm not sick but i'm vewy wu-weed (worried) and nuh-vous (nervous) about pawk-ur. i need to come home and be with him."

avery keeping her 'brudder' company

to help the kids cope, we have felt it would be best if we could involve them as much as possible...thus the reason behind the bone scan bonding adventure. unfortunately, as much as he wanted to be there, it didn't work for taylor to come. ironically, he was undergoing his own special photography session today - GRAD PHOTOS. wow. truth be told, one child having to have a bone scan done and one child having grad photos felt equally surreal to me.


the bone scan went well. the second scan took an hour and a half...but a sponge bob square pants movie helped to pass the time. a radiologist was on hand to look over the results. he spoke with graham and i after the scan was completed. he told us that nothing worrisome was seen on the scan. no signs of arthritis, joint damage or inflammation.

sparky boy's groovy skeleton

this news was really no surprise to us. if this is lyme, as it is beginning to more and more look like, than finding 'nothing' is the norm. frustrating to still have no diagnosis...but good to officially rule out others. we were grateful the radiologist gave us the preliminary findings. as well, we were told that the doctor will call us (BEFORE we leave on dec 7 for SF) IF there is anything suspect found after the final report is in. this is an answer to prayer. the more information we can arm ourselves with heading in to our appointment with DR H, the better.

we arrived home from the hospital to an unsettling phone message.
the doctor's office calling to say that TAYLOR'S blood test results from last week had come back and that we needed to see the doctor asap.
ugh. my heart sank and my stomach lurched and my blood ran cold.
something is wrong with Taylor now?!

yeah.
surprise, surprise.
he's been complaining of ongoing fatigue, dizziness and headaches ever since he had the chicken pox in october. he has been missing a lot of school. we all have attributed it to the stress and worry associated with our family situation but we figured it would be a wise idea to just get him checked out. so last week, graham and i took him to the doctor. she decided to run a bunch of blood tests in order to rule out any conditions that could be associated with his symptoms. she said it would only take 2-3 days to get the test results back - and she would call only if there was a problem.

i nearly had a nervous breakdown waiting through those 3 days. (this worry was what part of the wailing in the park was about)...easy for my mind to head to a dark place - escpecially when it already feels so black.

so last night, i realized that it had now been a week and we hadn't heard back from the doctor yet. last night, i conciously breathed a sigh of relief.

and then today dawned and the blinking light on the answering machine taunted me with it's message...and promptly found myself sitting in yet another doctors office with my other son...recieving an unexpected diagnosis.

taylor has Acute Cytomegalvirus (CMV).

which is basically a viral infection that causes mono like symptoms.
fortunately, it is not serious. he will recover. it will just take time.

the biggest concern is that it can cause an enlarged spleen. which is not dangerous in and of itself but can be life threatening if it ruptures. if you have an enlarged spleen you need to take precautions - such as avoiding contact sports and vigorous exercise. taylor's basketball season is just revving up...so the doctor ordered an ultrasound to check his spleen and liver.
he is having that done tomorrow morning.

oh great, more test results to wait for.
excuse me, i think i need to go for a walk.

BONE SCAN

Parker will be having his BONE SCAN done tomorrow (Wednesday) at Children's Hospital. We have to be at the hospital at 8:45am in order for him to get his injection of radioactive dye. The actual scan will be 3 hours later at 12:00pm.

Please pray for him as he is feeling scared and nervous...primarily about the injection. he's sorta had it with needles. i had a bone scan done on my road to diagnosis, way back in Dec 2006. it helps that i know what happens and have been able to explain it all to him in detail. but nonetheless, it is still scary. he finds the whole 'radioactive' idea somewhat intriguing yet alarming at the same time.

the rheumatologist's office has given us an appointment on Dec 22 to go over the results of the scan. that seems an eternity away to wait for results. as well, we were hoping that we would be able to have the results BEFORE we leave for SF to see DR H. the rheumatology receptionist told us that the results will not be in before Dec 7 (which is the day that we fly out to SF to see DR H) but she said she would talk to the doctor and let her know the situation. we are praying that God will expedite the process...

i could say a whole lot more but currently i am just too emotionally, mentally and physically worn out. simply put, this is an incredibly difficult time. last week the stress and grief of everything caught up with me. caught up with all of us. i went for my walks and wailed. it was very therapeutic for me however i'm almost certain my wailing traumatized any wildlife within a 3 mile radius of the park. i'm coping a bit better this week and we're working at putting the necessary supports in place for the kids. we know that God is in control. this would be unbearable if we didn't believe that.

we're gonna be alright... and i'm sure the ecosystem in the park will eventually recover too. in the meantime, i'm contemplating handing out ear plugs to the few remaining animals who have not fled for more peaceful pastures - and i'm hanging on to God for dear life.

"the Lord may not definitely have planned that this should overtake me, but He has most certainly permitted it. Therefore though it were an attack of an enemy, by the time it reaches me, it has the Lord's permission and therefore all is well. He will make it work together with all life's experiences for good."
~ C.H. Welch

FLUFFY-FLUFFY LOSES IT

FLUFFY-FLUFFY took out her navel ring last week.
and
she is so not happy about it



for 16 years it was a part of her
and
now it is gone
and
she is left with a naked, old lady jelly belly

sigh.
fluffy-fluffy has lost it over losing it.
such trauma.

DR H made her do it.
something about the effect of metals on the body's meridians:

"Meridians are pathways of energy in the body. Where-ever metal is present, it distorts the energy flow. If it is located near a meridian, it throws off the meridians and can have a small or even a large effect, especially long term on a person’s health. A more common area of body piercing is the navel. This is right on the meridian for the central nervous system. The central nervous system is responsible for just about every single functioning part of your body. Putting a metal stud there distorts and short circuits the energy. So if you have metal on your central meridian this can obviously have all kinds of effects on all kinds of different parts of your health. One would never realize the preoblems relate to the stud on the navel.

so, in the name of science,
DR H killed fluffy-fluffy's novel navel beauty
and
he thinks its funny she is so distraught over it

but then again, fluffy-fluffy should know better than to expect empathy from a doctor who moonlights as a serial killer on tv.
ha ha

fluffy-fluffy is dubious and skeptical.

but
she'll grumpily give it the good old college try
after all,
what does she have to lose?

only a naked belly full of moon jellies.

112 PILLS...OY!

i had my monthly phone appointment with DR H today.

near the top of my list of things to discuss with him was my ever growing buffet of pills

i swallow 112 pills every day

i asked him if there was anything we could trim down...i can deal with gagging down 30 pills at a time but it's the cost that is getting pretty hard to swallow. only 4 of the prescribed pills are covered by insurance.

no can do
it's all needed
and DR H actually added 6 more pills to my regime today
oy!

it's overwhelming to swallow handful after handful of pills everyday but they are doing what they need to do and that makes it worth it. since starting this regime 8 weeks ago, there is no doubt that there has been an overall improvement in my health and quality of life.

DR H is pleased with how well my body handled my last 2 herxes. the oral meds i am on (tinidazole and malarone) are pretty heavy hitters for fighting the babesia.

but
i am still not 'well enough' to go back on my IV drugs -

currently, my most troubling symptoms are daily headaches, night sweats, shortness of breath, full body neuropathy, losing balance, tremors and shaking chills. during an episode my body temp drops to 95.1F (it used to drop to 92.9F).

not being healthy enough to treat what is making me unhealthy is an oxymoron
and
it is frustrating and troubling

my body is not absorbing the oral amino acids i am on (my pink goo and green goo)
and my lab work reflects this
my AP enzyme that needs to raise in order to help my body eliminate the bacteria when the meds kill it off has not raised at all

today DR H talked about how it is most likely that i will need to undergo the amino acid IV therapy that is done through the doctor in Nevada (DR G). this is a cost and therapy we were really hoping to avoid.

i will have an in-office appointment with DR H in December when we bring Parker down to see him. if my labs and symptomology have not improved by then, we will need to move forward with that therapy.

as we were wrapping up today, DR H mentioned that he had seen the W5 report last night. He blustered on about how he couldn't believe the footage of his interview they chose to air.

He said he thought he looked like a serial killer.

that made me laugh so hard.
and as i snickered, i smugly thought to myself

'if you think that's bad, you probably don't want to see the picture i posted of you on my blog'

i've decided to fax him the picture tomorrow


PARKER UPDATE:

both graham and i talked with DR H today about Parker. his western blot test is suspicious for lyme and it is absolutely necessary that he be evaluated in office. DR H is not jumping the gun, so to speak, on a diagnosis until he can give him a thorough evaluation. we do not want to be "lyme hysterical" but we are "lyme aware" and more and more it is looking like lyme is the culprit. at the same time, we are following through with what the doctors here are investigating. the rheumatologist that we saw at Children's Hospital last tuesday has ordered a bone scan to rule out bone cancer or tumor. parker's blood work is no longer suspicious for cancer (it was initially) but the doctor feels the scan is still necessary. we don't yet have a date but it should be sometime in the next 2 weeks.

parker is currently on the antibiotic amoxicillin. it is a highly effective antibiotic for treating lyme. he was initially placed on it because of his ongoing problem with a lung infection. DR H has asked that we keep him on it until his appointment on Dec 9. the risk of taking him off the abx IF this is lyme is far greater than keeping him on an abx unnecessarily for a few weeks.

he is also on a heavy duty anti-inflammatory and pain meds. they are not helping to manage his pain. (which is often the case with lyme pain) he was only able to attend school for 45 minutes today before he had to come home. in the mornings his joint pain is so severe that he is not able to climb up or down stairs. more and more often during the day he resorts to crawling in order to get around the house. this is incredibly difficult and painful to watch.

please continue to keep us in your prayers.

OUR RESPONSE TO W5s EXPOSE ON LYME DISEASE

you can watch the W5 episode on Lyme Disease, "Out of the Wild" online by going to the following link:

http://watch.ctv.ca/news/#clip235297

The coverage was excellent - we can only hope and pray that it will help to be a catalyst in breaking down the systemic bias that exists against this insidious disease. The following is the letter we wrote to W5.

Thank you for your comprehensive coverage on Lyme Disease. It was accurate and representative of the experience of the hundreds of Canadians that are battling this disease and the systemic bias that exists against it.

Our family has lived and continues to live this first hand. I went undiagnosed for 9 months before I was finally accurately diagnosed with Lyme disease...by that time, my Lyme infection had advanced to my brain and I had severe neurological impairment and was physically disabled. To add insult to injury, my diagnosis and the subsequent lab work that backed up my diagnosis was dismissed by most doctors. I did receive some IV antibiotic treatment from an infectious disease doctor. Unfortunately he stopped treating me prematurely because and I quote,

"I'm taking too much heat from my colleagues for treating you. Your improvement is placebo effect. Therefore I will no longer treat you nor see you as a patient."

We fought for continued treatment here in Canada for the following 2 months. Over and over again, we were told one of two things by the multitude of specialists I saw:

"There is no Lyme disease in BC."

or,

"Doctors who treat Lyme in Canada risk losing their license. I cannot help you."

I rapidly deteriorated once the IV antibiotic treatment was stopped. When I began to lose my vision, we abandoned all hope for securing treatment in Canada. In order to save my life, we HAD to go to the United States for treatment. I am now under the care of the American doctor that was featured in your broadcast. Under his care, I am making great strides on my long, hard road to recovery but it is coming at a huge financial and emotional cost.

One last word:

This past week our child was seen by Rheumatology at Children's Hospital in Vancouver. We asked the doctor there about the possibility of Lyme Disease as a diagnosis.

“Is there any possibility that our child’s symptoms could be caused by Lyme disease?”

This simple inquiry was met with an instantly dismissive and angrily defensive response. and I quote,

"Lyme Disease does not exist in BC. It is IMPOSSIBLE to get Lyme Disease in BC. There are no ticks in BC with Lyme."

Our request for further evaluation for Lyme disease (eg Lyme Western Blot) was refused.

Lyme is a disease that can have a huge Rheumatic component to it. It is alarming to consider that a Rheumatologist seems to be so grossly unaware. Furthermore, it is grievous to us, that this doctor was immediately dismissive and unwilling to consider Lyme as a differential diagnosis - especially when all other Rheumatic conditions have been ruled out.

It's a good thing we know better.

Fortunately, our knowledge means that our child will get the appropriate and necessary evaluation to make an accurate diagnosis.

Unfortunately, we also know that an unbiased and thorough investigation for Lyme will not happen in Canada at this time...and neither will the treatment.

OUT OF THE WILD

when we had our appointment with DR H in seattle in october, we had the privilege of meeting another family affected by lyme. their strength, dignity and irrepressible joie de vivre in the face of the battle they are waging is remarkable. it was an honor to meet Chris and her daughter Nicole. i felt in a way that i already knew them as i have been following their journey through Nicole's blog, BITE ME.

Peter, DR H, Nicole, myself and Chris

DR H prefers to not be "public" so i've creatively protected his identity.
i couldn't help it. i needed a good laugh.

the CTV news program, W5, has been following Chris and Nicole's journey and struggle to get treatment for lyme disease. their story, as well as the struggles of other patients with lyme in canada will be featured in a 30 minute program entitled,

"Out Of The Wild:
Why some doctors are misdiagnosing a crippling disease caused by a shape shifting super bug"

this must see broadcast will air
TOMORROW,
Saturday, November 14th on CTV at 7pm.

if you don't get the channel or miss the broadcast
you will be able to view the program online at the CTV News W5 website
click here for more details

OR

visit our buddy Peter's "you tube channel".
(peter's our 'go to media guy' and his channel has an extensive archived library of news footage about lyme in canada. he will be capturing tomorrow's broadcast and linking it up to his site shortly after it airs)

http://www.youtube.com/user/PvTnetTV

the W5 News Team and cameras were on location in seattle during DR H's visit. they interviewed him and i believe they will be broadcasting some of that interview tomorrow night....so make sure to tune in and watch....

i wonder if they'll protect his identity as creatively as i did?

A PLAN OF ACTION

parker's test results are in.

they show reactivity/positive response to the borrelia spirochete (lyme bacteria)

so does parker have lyme or not?
we simply don't know...yet

it is complicated and difficult to explain,
basically, (very simply put),
he has antibodies in his blood that show that his body has been exposed to the bacteria and he tested positive to 'parts' of the bacteria but not all of it.

in order to make an accurate diagnosis, DR H needs to clinically evaluate him

here is a breakdown of parker's results for my lyme savvy readers:

Lyme IgG
30kDa +
41kDa ++
58kDa +

Lyme IgM
41kDa Ind
58kDa +


parker's appointment with DR H is scheduled for DEC 9
we will be leaving for California on Dec 7

this whole process is so incredibly difficult and beyond stressful
and i have wondered and wondered why it is being so dragged out and taking so long to get a diagnosis
we simply do not know
but we know that we can trust God's timing and direction
and
it is allowing us to process this in stages...
i know that i would not have been prepared for today's phone call on Monday.
but
early yesterday morning, God gave me the very same scripture that he gave me on the day that i was diagnosed with lyme (april 24, 2007)...

"We wouldn't think of writing this kind of letter about ourselves.
Only God can write such a letter.
His letter authorizes us to help
carry out this new plan of action."

God has given us a plan of action
and
we are at peace with it

NO ANSWERS

No answers

LONG appointment
more x-rays done today
bone scan is being scheduled

today's appointment just left us feeling RAW.

went for a walk tonight
and
wept.

Meanwhile, the moment we get tired in the waiting,
God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans.
He knows us far better than we know ourselves, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good.

~ rom 8:26-28

AN UNEXPECTED CALL

we were hoping to hear from DR H today in regards to parker's lyme test.
we did not.

but
we got an unexpected call from Childrens Hospital Rheumatology Department. Parker has been given an appointment for TOMORROW afternoon (Tue, Nov 10). this is instead of the March 30,2010 date we were given last week.

this is an amazing and unexpected answer to prayer... we have been so focused on getting the possibility of lyme ruled in or out that we had not even called the hospital to try and get the date moved up nor had we asked to be put on a cancellation list.

please pray for this appointment and for the doctors involved. we have much apprehension about it.
and we sure would like to hear from DR H before we have to leave for it.
pray for wisdom for DR H as he evaluates parker's test results.

pray for God to reveal what is ailing parker.

right now, we are burdened by the weight of having more questions than answers. to get this unexpected call today has reminded us that God moves in unexpected ways, and he is charting the course and that he is in control.

pray for an answer to our questions...and peace with the results.



a friend, whose daughter is battling lyme, sent me this verse today. boy, was it exactly what i needed to hear. i will end with it as it is what held me together today...and will be what holds me together tomorrow.

"they do not fear bad news;
they confidently trust the Lord to care for them."

~ psalm 112:7

FLUFFY-FLUFFY & THE GREAT LYMPH CAPER

MEET FLUFFY-FLUFFY...

if you think she bears a strong resemblance to me and my jelly belly you would be correct...

i am fluffy-fluffy and i am a lymphatic mystery.

long ago, i wrote about the antics of my lymphatics (refresher read here) and i'm pretty sure that since then i have belly ached about my puffy status. my lymph massage therapist(s) have often referred to me as boggy, puffy, and other such professional medical terminology.

over the past several months, there is been a lot of lymphatic fluid collecting in my abdomen and my puffiness has soared to new heights. according to my therapist(s), i have now acquired a new status...

i am fluffy-fluffy and i suffer from fluff-itis.
their medical terminology astounds me.

i now have 2 different therapists working on me twice a week to try and drain the fluid from my belly. these fluid filled sacs are subcutaneous (meaning right under the skin) and can be manipulated and moved around my abdomen. you know what they remind me of? the moon jellies we find at the beach we used to frequent. they are the same shape and consistency.


when my therapists move them around, i can feel them moving. it is gross and weird. sometimes in the quiet of the massage room, as i am being worked on, i will whisper to my therapist(s),
"what is that?"
after a moment of disturbed silence, they whisper back, "i don't know...maybe it's an alien. i'll try to push it out of your navel."

no thanks! this is not the movie "Alien" and i am no sigourney weaver!

if my moon jellies are massaged long enough, they will begin to drain into my lymph channels and you can actually see the swelling in my abdomen go down. if i go too long between massages, these sacs of lymph begin to harden (called fibrosis). the fibrosis need to be massaged to 'break it up'. this is very painful. if the fibrosis are not broken up, i get a back log of lymph fluid in the rest of my body. for lack of a better word, i become waterlogged - meaning my face, legs and arms start to swell and astronomically puff up. this swelling can cause a weight gain of 10-12lbs in a few hours.

so weird.
so gross.
so irritating...
and
so mysterious.

apparently no one, not my therapists, nor DR H, nor DR A have ever felt the likes of anything like my abdominal moon jellies. no one can really figure out what is up with my moon jelly belly. it is a cause for concern as there are many different conditions that could be causing my abdomen to fill up with fluid.

DR H wants to get a thorough investigation underway.

there is a whole list of medical sleuthing to do in order to try and uncover this great lymph caper.

stay tuned for the adventures of Fluffy-Fluffy as she embarks on a medical odyssey in a noble quest to deflate her fluffiness.

THE LONGEST WEEK EVER

this may have been the
longest week ever.

or so my puny mind has taunted me

the stress of the kids all being home sick
and
waiting for parker's lyme test results
and
me herxing
have made this feel like the longest week on record.

thankfully avery and taylor seem to be on the road to recovery and both went back to school today.

i am definitely feeling less wretched. i think it is safe to assume i've been dealing with a herx and not the flu. certainly my intense flare in symptoms were my standard, garden variety lyme symptoms. this would make sense as i started the abx, tinnidazole, 12 days ago. of interest (to me anyway) is the flare in symptoms i had a week ago were babesia related (night sweats & manic mind, etc), - this time around my symptoms have been totally lyme (no night sweats, electric pain, arthritis, etc) related. i don't know that i have ever had them so defined and separated before.

parker is a different story. he has not improved...and on tuesday he got one of his migraines and developed a high fever. i wanted to take him to our doc's office yesterday for evaluation, but because he now has the suspected H1N1 flu they gave me the run around. told me to phone the swine flu hot line. after an hour and half of being put on hold and getting no answers from the hot line, we phoned our doc's office back and were told that the doctor would call us.
we have yet to receive a phone call.
he is continuing to spike fevers...and looking more and more ashen each day.
and we are at a loss as to what to do with him.
and fear a trip to the ER would do more harm than good at this point.

we were hoping and praying we would at least get his lyme test results today. that will not be happening. the results are still pending...and will not be in before the middle of next week.

so the agony of this week has been prolonged
the worry is crushing
the apprehension is stifling
the strain is unbearable

i do not even know what i dread more anymore
a positive
or
a negative
result

my mind has been spinning a million miles a minute this week
as i sat down to blog this morning
i found myself a discombobulated litany of fury and anguish and trust
all of it roiling through my frenzied brain
living in momentary measures of peace, faith and trust
yet
bombarded with fragmented thoughts
and disarming emotions of
frustration
anger
fear

i've done a lot of business with God this week
lamenting and venting about our upside down life

and now i have been brought up short,
stopped cold in my tracks,
stopped cold in my typing,
stopped cold in my rebel child soliloquy of ranting and raving and woe is me,
caught in that foot stamping tirade i so easily get swept up in when i see life from my limited, handicapped point of view...

stopped cold by a letter, a cheque and a verse that just arrived in the mail.

For the vision is yet for the appointed time;
It hastens toward the goal and it will not fail
Though it tarries, wait for it;
For it will certainly come, it will not delay.
~ Hab 2:3

stopped cold by the voice of God and brought up short by this tangible reminder that we are not lost to God. He understands our frustration and our anger.He cares about our pain and our despair... and even our unpaid bills. our nonsensical life makes perfect sense to Him.

"For my thoughts are not your thoughts, neither are your ways my ways,"
declares the LORD.
"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."
~Isa 55:8-9

my soul is recompense within me,
my head is bowed in humility
i am so undeserving of the grace that is found in Him
i am so astounded and awed by the mystery of His ways

IN THE PIG PEN

what's with the sudden emergence of peanuts cartoons on the blog? well, isn't it obvious?



i totally relate to the character pig pen! in fact, i think i am pig pen! when i'm out in public i almost feel obligated to shout, "unclean, unclean" - just like lepers had to do in biblical times. but you know, i'm pretty sure that would be unnecessary - i'm almost certain people can see the haze of germs hovering over me.

yesterday morning, i dragged myself out for my 20 minute walk...which in turn rendered me helpless on the couch for the following 6 hours. however, i am DETERMINED to do that walk - of course there is a balance between pushing my body too hard but i know, especially if this flare is part of a herx, that i have to do what i can to assist my overburdened body and sluggish lymphatic system in cleaning house of the dead bacteria. short term pain for long term gain. i know it will help in the long run.

my walks are done in the park that is directly in front of our house. the park is really a big wide open field and most of the path that i walk on is visible from our balcony. normally, i take my cell phone with me - just in case of emergency (sometimes i've ended up having an 'epidsode' mid-walk and am too weak to walk home). i don't generally turn my cell on unless i need to use it (i have a limited cell phone plan) but yesterday, i felt so unstable that i turned it ON because i was concerned at the possibility of becoming either mentally or physically incapable of turning it on and calling for help. yes, it is ridiculous that i went out in this state but doing life this way is the norm. it is called survival, i'm used to it. oh, the stories i could tell...

anyway here is the cool thing. because i turned my cell on, i got a message that i wouldn't have gotten otherwise. it was a text from taylor's girlfriend...a bible verse she had read that morning and had felt the need to share with someone. it's a total god thing that she chose to share it with me.
it was exactly what i needed to hear.

" Because of the LORD's great love we are not consumed,
for his compassions never fail.
They are new every morning; great is your faithfulness. "

God is utterly faithful - and His promises are reliable...even when we're in the pig pen...He is there in the filth, when we are being assaulted at every turn, are up to our necks in the guck and the yuck and are mired down by the impossibility of our circumstance.



yes, God is in the pig pen with us.
i'm grateful for the reminder via text.

i really needed it. this is shaping up to be the longest week on record.

LTTLE WHINE WITH THE SWINE

i started herxing last night...and have gotten progressively worse as today wore on. i am in bed and am once again very limited in my ability to function. my head is too heavy for my body, my neck is stiff and sore, electric like shock waves are running up and down my spine, sweats and chills, my entire body is burning with full blown neuropathy, my bones feel like they are exploding and my joints are on fire...etc. etc.etc.

and
all 3 kids are home sick...and hogging MY couch!

3 little piggies hogging my couch!

avery came down with the cough and fever yesterday afternoon.
taylor has a fever but no cough
parker woke up with a cough but no fever...

graham is healthy...and making plans to flee to a hotel in the middle of the night in order to remain that way.

what can i say?
it is ugly around here...

it is really more than i can bear

i am worn out
and
i am sick and tired of it all...



excuse my whining, but for today, i am choosing to be slightly depressed about our whole sad state of affairs...and i plan on enjoying it while it lasts.




PARKER UPDATE:

He continues to immensely struggle with the debilitating mystery illness that has plagued him for 7 weeks now. at best he averages 6 hours (total) of school a week. some days are better than others. we are hoping the results of his lyme test will be in on friday. it is so very difficult to wait for this as we feel like everything is on hold until lyme can be ruled in or out.

we don't even know how to feel about the whole thing anymore...if it is lyme, we will have a humdinger of a fight on our hands but at least we have a game plan to put in motion. if it is not lyme, well, we 're back at square 1 and will still have a fight on our hands - as the "urgent referral" from parker's pediatric specialist garnered a march 30, 2010 appointment with rheumatology at our local children's hospital.

OINK, OINK

i believe the swine flu has reared its ugly head in our home

it's not confirmed
however
the sudden onset of cough and fever of 102.5F
and one drowsy, achy sad little girl lethargically lying on the couch
is highly suspect

poor baby



she is absolutely heartbroken that she can't go to school tomorrow

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.”

LAB RAT INVADES BLOG

so i figure i need to take a breather from all the needles, tests, and various poking and prodding that has accompanied the medical marathon we've been running for the past couple of weeks. i think we've set a new record here in the goertzen house - 7 doctors, 12 visits in 21 days.


running the gurney gantlet has given us ample opportunity to discover creative uses for surgical gloves but it has also left us exhausted and stressed out.
so when our beloved hamster Walter Warkentin was discovered MIA last week, my first thought was this is the LAST thing we need.
i can't handle anymore drama or trauma, Lord!
thankfully, much to our joy and immense relief, the prodigal Walter Warkentin was recovered alive...he was dehydrated, exhausted and a little gimpy but very much alive!

nice try, Walter

you can waddle...

but you can't hide!

why i feel so compelled to share this with this rest of the world, i'm not so sure...
maybe because i'm just so attached to the stupid hamster or maybe because i know everyone likes to hear a story that has a happy ending
most likely it has more to do with my weird rodent attachment issues and the fact that i'm dumbfounded that little rat had the nerve to run away from me!


and so, without further ado...
i give a nod to the rodent who has stolen my heart...and probably shaved 5 years off my life with his little houdini act.


walter is actually taylor's hamster. a gift for his 15th birthday. (yes, that was really what he asked for) of course, avery and parker are in love with him too. he's quickly become our "family pet". admittedly though, i'm probably the one who will be most traumatized by his demise when it occurs. he's already over 2 years old so i'm bracing for the inevitable and stockpiling tissue.



you know old walter and i have logged a lot of hours together. there is something very comforting about a cuddly, fuzzy animal when one is not well. hamsters are no exception to that rule. he's a pretty fine fellow and he is my buddy. if you give it some thought, old walt and i really have a lot in common. we keep odd hours, sleep for hours, are both past our prime, don't get out a lot, run in circles, see better in the dark, and like to watch reruns of "What not to wear" and Dr Phil. don't doubt it for a minute!


i've seen his ears perk up at the sound of Dr Phil announcing, "this will be a changing day in your life". and i could tell by the glint in his eye and the twitch of his nose, that he is hamster enough for the task! oh yes, during the long endless months when i am more or less a prisoner of my own body and confined to the couch, lucky old Walter has become my 'pet project' more than once. (funny what herxing will do to one's sanity.) i even attempted to toilet train him. many a time. he actually had a fairly successful run at that for a few weeks at one point.
yes, my best friend is a half potty trained, slightly portly hamster.
is it any wonder i have taken his running away so personally that i feel the need to blog about it?

there is great heated debate in our household as to whether or not Walter is brilliant or just brilliantly plump. he's so plump he's nearly gotten stuck in his tunneling tubes several times. we couldn't figure out why he was getting so fat because he 'exercised' so much - then we discovered that he actually just 'pretends' to run on his exercise wheel -no lie - we caught him red handed sitting beside the wheel just turning it round and round with his front paws. now that's brilliant. he is one slick trickster.

and this week he ran away
why?
well isn't that the million dollar question
why, Walter, why?
i've asked him a hundred times
i'm still waiting for an answer...right now he's too ashamed to even look me in the eye



or maybe, just maybe
he's not answering because his answer is top secret and classified
after all
he only ran away to the bathroom
well, that's where we found him anyway...
along with several strands of spaghetti, a couple kernels of rice, some undistinguishable bits and a single, gnawed on WOBENZYME...




wobenzyme is one of the medications that i am on. i take it for my arthritis and joint inflammation. it is stored way up high, on a shelf, in a closet, in a bottle that has a child proof lid.

graham is convinced that walter is moonlighting as a lab rat
who knows?
that would explain why he's keeping so tight lipped on his escape

at any rate, we'll let you know if his arthritis clears up...

WHAT ABOUT SPARKY?

sparky is our nick name for parker.
he's not so sparky these days.

thank you to the many of you who have checked in with us to find out how he is doing. we appreciate the concern and covet your prayers.
at this time, there is not much new to update you with. we still do not have a diagnosis.

we had another appointment with the pediatric specialist yesterday. this to get the results of all the testing he had done last week. both graham and i had a lot of anxiety going to this appointment. based on his symptoms and blood work, we knew what the doctor suspected and what those tests were looking for. Leukemia. that has been a tough possibility to have hanging over our heads.
we were very relieved to find out that parker does NOT have Leukemia.

while there is relief to rule something out, there still remains the mystery of what is making him so terribly ill. yesterday, the specialist indicated that we are most likely dealing with something very serious. we know the possible diagnosis that are being looked at... there is much anxiety over what it may or may not be. however, we are confident that the doctors involved are looking at every possible diagnosis and giving him a thorough evaluation. of course, the process of eliminating possibilities and searching for diagnosis is extremely difficult and stressful. it is scary to watch your child suffer and not know what is wrong.

parker has now lost 14lbs. he continues to fight some sort of ongoing infection in his lungs. this causes him shortness of breath. he has pronounced fatigue and low stamina (but he likes the way that word sounds). he has a lot of joint pain primarily in his hands and legs. his joints are very sore and stiff in the morning. this makes walking difficult.

the school and his teacher have been incredibly supportive. we are incredibly grateful for this. he is doing most of his school work from home as he has only been in school a total of 5 days in the past 5 weeks. this week we have been trying to get him to school for 2 hours each afternoon. it's hard on him physically but it's good for him emotionally. when i dropped him off today, his classmates were all so excited to see him...that did my heart good too!

for the most part, he is one sick little guy - he does have some sporadic days where he feels a bit better and we can catch a glimpse of our old sparky.

we'd like our little boy back full time.

please pray for our little sparky.

BACK TO REALITY

so now that i've duly butchered several fairy tales and pretty much beat the whole theme to death, i shall crash land back on planet earth...

although
the real version of events isn't nearly as interesting when not read as romanticized prose.
the short of it is this:
i had my in office appointment with DR H this weekend...actually he kinda came to me. He was speaking at a conference on Lyme in Seattle (which is about a 2.5 hour drive from our home). super doc that he is he agreed to see me in Seattle and spare me the expense of travelling out to SF to see him. really, i'm not that special - he did this for all his canadian patients (or those that could get there to see him) from what i heard he was booked solid from 8am-5pm for 2 days straight.

we are very grateful for this. we're pretty tapped out financially, so it was a huge blessing to be able to see DR H so close to home. and now given what is going on back home in regards to Parker being so ill, well, you can imagine how relieved we were to not be far away from home nor gone for as long as we are when we fly out to SF.



this in office visit/trip also nicely coincided with our 11 year wedding anniversary. as is tradition we went out for a nice romantic dinner...with Peter.
dinner with Peter? yes.
tradition? no. not yet anyway.
but who knows? after all, he picked up the tab!

and who is Peter? Peter is one of the first 'lyme' friends we made. we met him at the first support group meeting we went to. along the way, he has become a very good friend...and our travel buddy. he is also a patient of DR Hs. Graham, Peter and I have now made several trips together to SF to see DR H.


Peter and i have had a long running burrito bet. each time one of us has our monthly phone appointment with DR H we place bets in regards to how behind schedule he will be. for example, if your phone appointment is scheduled for 9:15am it is not way off to bet that he'll be calling around 11:00am then. whoever bets closest to the actual time he calls, wins. the loser has to buy the winner a burrito.
i happen to have an uncanny synchronicity with the clock that DR H runs by.
so yes, Peter is a stellar guy to pay for our anniversary dinner of burritos.
however
he owed me 2!

as for my how my appointment went...well, i'm not as far as long as i had hoped or thought i was. i think i thought (for the first time) that maybe we would hear that i was well enough to be done with the IV part of my treatment...rather what we learned is that i am actually not well enough to re-start IV treatment. according to DR H i have earned the distinction of being one of the worst herxers he's ever treated. lovely. just the lofty goal i was aspiring to achieve. not!

there have been some herxing exceptions but generally speaking my shortest herx lasted 16 days and my longest lasted 3 months. herxes render me completely disabled - both physically and mentally. my body has just never handled the toxic load that herxing produces. this is nothing we didn't already know. DR H thinks that he has identified part of the reason why my herx reactions are so extreme. some blood work i've had done has shown that my body is running very low on a certain enzyme (Alkaline Phosphatase) this enzyme is made by the liver and assists the body at cellular level to remove and neutralize toxins. we've been working at trying to raise that number for the past 4 weeks. it has not raised at all. DR H has made some adjustments to my current protocol and we are hoping and praying that these will help raise that number...this is critical and crucial - until we are able to raise that number, DR H cannot aggressively treat me.

so where things stand now. my body has 6-8 weeks to start producing AP! if it does not raise with the new therapies DR H has prescribed than i will have no other choice but to move forward with the blood specialist (DR LM in nevada) that DR H referred me to several months back. we are hoping to avoid this as the expense for this is horrendous. please pray for my AP numbers to raise.

other than that there were 2 other areas of major concern:

babesia infection

i have been on alinia and a micro dose of malarone (oral meds) for my babesia infection for the past month. i did briefly herx at the 72 hour mark of starting these 2 meds. 2 weeks ago, i began to experience what i knew was the start of one of my major herx reactions. i immediately pulled off of my meds for 7 days. as stated above, my track record with herxing is horrendous and given everything that we are dealing with at home, i just didn't feel like we could afford to have me rendered incapicitated for an indefinate time frame. at the time, i knew i was playing with fire, but i felt like i made the right decision for my family. DR H disagrees. i will not get well if i do this. in fact, i could make myself even sicker. needless to say, i earned the bad patient award for that shenanigan. of course, DR H understands our situation at home and that keeping me functional is needed but he nearly had a cow. i had to promise and commit to remaining on treatment now.

in one weeks time, i will be adding in an additional micro dose of malarone and switching out my alinia for tinidazole. i've never been on tinidazole before so that should be interesting. please pray for us as we brace for what feels like the inevitable. no time is ever a good or ideal time to herx...but right now, with parker so ill, the thought of me being unable to function, even in the limited capacity i do now, will take a tremendous toll on all of us.

lymphedema -

my lymphedema issues continue to be a major problem. despite our best efforts and all sorts of therapy, i continue to 'puff up' constantly. the primary concern right now is the swelling in my abdomen. it has been getting progressively worse over the past 3 months. fluid filled sacs in my subcutaneous tissues can now be felt. they feel like water balloons. they 'slosh' around like ping pong balls when palpitated. at this point the exact cause is unknown...but there are theories (remember the movie "alien") just kidding.

DR H has prescribed an injectible medication to try and deal with my weirdly abnormal lymph condition. i'll have to give myself subcutaneous injections 3x/week. he also suggested that i remove my navel ring from my jelly belly...i've had that piercing for 16 or so years so it seems a bit of a stretch that it could be contributing to my lymphyness. DR H admitted it is somewhat of a long shot but he did yak on something about naturopaths and body/metal connection...i can't quite remember exactly what he said as my mind was still reeling from the trauma of hearing i have to start injecting myself...but i will do as he says and remove my navel ring for 3 weeks to see if that makes any difference - but not before i find me some fishing line to preserve my piercing!

that's pretty much the gist of things. or what i can remember right now.
oh yeah. we found out my kidneys are in pretty rough shape. i've named them fred and ted. please pray for fred and ted.

one last thing
i took my green goo with me to my appointment...with the intention of giving DR H a taste of his own medicine. ha ha. i daringly plunked it down on the desk in front of him. he looked at it. he looked at me. he jotted something down in his in legible scrawl. he paused, the he thoughtfully gazed out the window, tapped his pen on the side of his head. he turned back to me with his game face on and said in a vaguely threatening sort of way,
"you know, Shannon, i know this doctor who actually chews and vomits up goo for his patients..."


i'm pretty happy with my manufactured green goo now.

OFF TO SEE THE WIZARD

prince charming swooped in and whisked snow white off into the southern sunset of a foreign land. his sturdy, reliable silver steed carried them down the i-5 to the emerald city to see the wizard. prince charming would have preferred to rocket straight to their final destination in the land of OZ but gallant knight that he is he sacrificially swerved off the directed course to indulge snow white's fixation of hunting for treasures and the cheapest of finery in a ross dress for less. he patiently waited next to his practical 7 seat steed whilst snow white gaily yet gingerly skipped into the store.



"yes," sighed he in one resigned heave..."what's a guy to expect when married to a modern day snow white?"

really quite funny how love works that way .... when 2 worlds collide in a match called love it tends to unite polar opposites from the ends of the earth. this fairytale is no exception to that rule, after all this one united a multi-pierced and tattooed modern day city girl with a clean shaven missionary man who avidly loves the great, wild outdoors...and, i might add, he's 8 years her senior. and not for a minute does she ever let him forget it!



once back on course, prince charming and snow white beat a straight path to their temporary residence in the land of oz. there was nervous anticipation on both their parts as to what they would encounter at said destination.

why? say you to i.

one might suggest securing accommodations through priceline.com is a risky venture at best. snow white being the industrious maiden she is, snow white's bid was an offensively low ball offer...one could only imagine what kind of place you could get for really that cheap.
boy oh boy do our characters hope that their home away from home will not have them lamenting 'there's no place like home, there's no place like home'

and just what might you ask, has driven our characters to the insanity of blindly bidding for cheap hotels in far off lands? if they can't afford luxury why not just stay home?

sigh. this is where the tale turns ugly.



enter the antagonist - the tiniest, teensiest creature of all, a minute little bug whose venomous bite left snow white with an insidious infection called lyme.
yes, lyme leaves snow white bedridden for weeks at a time. in a blink of the eye, lyme can morph snow white into a scarecrow, a tin man and cowardly lion all rolled into one.

this is where this tale goes from ugly to evil nightmare.
enter the villains, too many to name. but one thing for sure, there are winged monkey warriors screeching the myth they fervently perpetuate,
"you can't get lyme in the east or the west or the great white north."

and munchkins galore who condescendingly mumble,
"lyme doesn't exist in canada at all... it's all in your head if you think you might have it."

they are all loyal gate keepers of the truth they suppress...or maybe they fear putting their reputation or riches on line or maybe they are just puppets in a much deeper, more dark and sinister plan at play.

whatever the reason, imagine our characters disgust and dismay to hear so many doctor's say, " i can't and i won't help you at all... to do so would put my livelihood on the line"

"but this is my wife and HER LIFE you are so coolly dismissing" screamed prince charming over and over again.

his panicked pleas did nothing to melt their hardened cold hearts

"take her away. maybe they'll help her in the land of Oz...but forget about canada...we're just not your guys."


and so the choice became clear...
with snow white rapidly ailing and losing her sight, they knew they had no other choice but to seek the help of a wizard in a foreign land.
email and internet and modern day conveniences quickly found them a wizard (one who was not all smoke and mirrors)
and so with their faithful GPS companion, Mortimer, at their disposal, they set off to see the wizard of Oz...
if only it was as cheap and simple as the tap, tap, tap of little red shoes
but
snow white is no dorothy
and to date, the trips to the wizard have been many. too many to count.
turns out, snow white is a complicated and costly dame... and quite frankly, can't afford red ruby slippers


"whatever!" she sighs, "I much prefer the comfort of my high top chucks anyway"

now back to our story, after all, snow white and prince charming are about to discover what 50 bucks a nite will earn you in this day of age...

and so with bated breath, they hesitantly made their approach, rounded the corner and lo and behold, before them lay a most beautiful courtyard and the prettiest hotel...does it really matter that it bordered the freeway?
nope, not at all.



once in their room, perched high above the twinkling lights of the cars speeding by on the freeway below snow white opened the window and with arms flung high, she exuberantly declared to the subjects of the emerald city below,

"i am queen of priceline.com!"

satisfied that anyone in ear shot had most certainly heard her proud proclamation, she turned back to catch a glimpse of prince charming, exhausted and snoozing on the comfort of the enormous, pillowy-soft king size bed. a tear caught in her throat...poor prince charming most assuredly got more than he ever bargained for when he made the traditional marital vow in his most unconventional way...

"i promise to pretty much hang around with you til i'm dead"

wonder of wonders, it's 11 years today since prince charming took snow white as his wife. through thick, thin, 3 little dwarves and all things lyme, him and snow white have stuck it out together. yeah. he's snow white's knight with the shining chrome dome and she'd be so lost without him.

yes, 11 years of wedded bliss and happily ever after.
harumph. happily ever after?
i'm pretty sure our characters never quite imagined 'happily ever after' would include a tale this twisted and bent.
but really,
could anyone ever even dream up a twisted fairytale such as this?

what kind of twisted fairytale is this?
it's the twisted tale of the reality of life BUT our characters cling tight to the promised 'happily ever after' that awaits them in the hereafter.
and oh what joy to know that the promise of heaven is no illusion, tall tale or fairy tale story.
and so for the time being,
between now and then, prince charming and snow white know they serve a king they can trust so in spite of it all...or maybe because of it all, they have found joy in this crazy journey they travail...

HI HO, HI HO...IT'S TIME TO GO

snow white is tired of sharing her great big convalescing couch with...

sleepy, dopey and wheezy & itchy, bashful and grumpy

snow white has decided enough is enough
HI HO, HI HO...IT'S OFF TO SCHOOL YOU GO!

i wish.
sighed she.

itchy, bashful and grumpy (taylor) is significantly recovered.

itchy, bashful and grumpy is nicely crusting over - he had some new spots crop up yesterday but if no new spots have appeared overnight then hopefully he can go to school on friday. we are fortunate that the doctor we saw started him on anti-virals and so his pox haven't been as bad as they could have been. of course, he contentiously argues that. he thinks it's been pretty bad.

sleepy, dopey and wheezy (parker) is not recovered. every few days or so, he seems to be rallying but any improvements are short lived. yesterday afternoon, we sent him to school for 2 hours. this was not an easy thing for us or him to do. he is pretty dopey from all the meds he is on and is weak as he has lost about 9lbs in the last 2 weeks. but at this time, we feel that he needs to have a little bit of normalcy - and he misses being with his friends - we are very proud of him for sticking it out even though he feels so sick.

at this point, all we can do is wait on all the test results. we are waiting on the results of multiple blood work ups, the chest x-rays and tomorrow morning he has an appointment at the hospital for an abdominal ultrasound. currently, his symptoms are suspect for several different conditions. we are praying that all the test results will be accurate and definitive...and that IF there is a diagnosis that needs to be made, than God would clearly reveal it. and IF there is a bridge we need to cross, that we would have peace and strength to walk it. right now, we are just taking it one day at a time. it is incredibly difficult but we are trying not to worry about what tomorrow may bring. today is challenge enough.
AND, until proven otherwise, we are choosing to believe that he has just had a really bad run with a nasty viral infection that unfortunately has just really knocked the stuffing out of him.

my littlest dwarf (avery) continues to thrive amidst the microbes swirling through her environment....

in my books, she'll always be the fairest maiden of all.

and how is snow white fairing in all of this?
well, the fact that i am correlating our family to a fairy tale might suggest that i am somewhat delusional or in need of an escape from reality.

after experiencing a positive climb in my White Blood Cell count, this week it all came crashing down to flagged and low numbers.
this was very discouraging.

i continue to be very symptomatic but we are managing to keep my symptoms at manageable levels. everyday i live with episodes of uncontrollable muscle twitching, night sweats, shaking chills, air hunger, fatigue, word retrieval and memory issues, noise sensitivities and pain, pain, pain...but,
all things considered, i am doing remarkably well. as wierd as it may sound, i have a sense of well being that i have not felt in years. i am being able to function at a level that i have not experienced since getting sick. for this i am grateful. my boys have needed me and i have been able to be there for them.

of course, there is tremendous concern that the stress of what we are dealing with will undermine my progress. stress even in the healthiest of individuals weakens the immune system and can be detrimental.

but along the way i've learned that TRUST in God is a phenomenal stress reliever...

Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life.- phil 4:6-7

hi ho, hi ho....it's off to God i go.

IT'S NOT MONO

we saw the pediatric specialist this morning.
the secondary testing parker had for mono came back negative.

parker does not have mono

quite frankly, we are stunned.
last week one of the doctors parker saw was very confident that he fit the clinical picture of mono. based on his symptoms and duration (4 weeks so far) of illness we too felt that mono made perfect sense. this was very reassuring and comforting as the symptoms that he is experiencing are worrisome for us.

at this point, we do not know what he has.
the viral panels they ran on him last week have all rendered negative results.

the pediatric doctor is doing further testing.
chest x-rays were done this morning (he is having difficulty breathing)
and he will also be having an abdominal ultrasound done.

additionally, we are still waiting on the results of 2 other tests that were done last week.
these results should be back by the end of this week.
we will be meeting with the doctor again next wednesday when all test results should be back

we are asking that you continue to pray for us...

that god would direct our path, lead us to the right doctors and that test results would be definitive and accurate.

naturally, this is a very stressful time, however, we are trying to take this one step at a time....after all, parker may have nothing more than some weird bug that is just taking an extended vacation at his expense...

one of my wise aunts reminded me the other day, "KEEP STARING AT THE TATTOO!"
which made me smile

i'm pretty much totally cross eyed now... yup, my visual reminder to keep trusting is sure coming in handy ;)

DROPPING LIKE FLIES

yesterday afternoon taylor came home from school complaining of an itchy rash on his shoulder.
i took a look and concluded that it was probably hives.

last night, his hives spread down his back.
this morning, his hives were popping up on his arms, legs and face.


this afternoon, we found out his hives are actually the chicken pox.

nice.

doctor has said he must stay out of school for at least a week.

nice.

parker home with mono.
taylor home with chicken pox.

you know, at the start of september, i wasn't at all ready to send my kids back to school.
i think i've changed my mind.
this is getting ridiculous.

and really this could just be the beginning...
neither avery nor parker has had the chicken pox yet.
and
because of my weakened immune system, the doctor said that i am at risk to develop shingles.

nice.

currently, i am psychosomatically itching out of my skin
but
we'll keep you posted.

BACK TO SCHOOL?

First day of school

Wow!
October 1st already?
where does the time go?
along with the rest of the world, i am aware that i am number/date illiterate. this is not one of those 'moments'. i do realize that i am blogging about back to school practically one month after school started.
however, we're still waiting for parker to start school.



he made it for the 1st hour of the 1st day...
came home sick
and has been back less than 4 full days since.

currently he has a clinical diagnosis of mono. (despite having an initial mono test come back negative). he had a ton of tests done yesterday and will be seeing a pediatric specialist on monday. we would appreciate prayer...
1. obviously for parker as he is one sick little guy
2. that we would receive a definitive and accurate diagnosis
3. that i wouldn't get it!

it appears that parker will be home indefinitely. last nite was meet the teacher nite at his school. he suggested that he come along...so he could meet his teacher! his teacher has been wonderfully understanding and supportive. she's put together a whole package of school work for him to work on so that he won't fall too far behind in his studies...

so it looks like we'll be hitting the books at home for the time being.
he's not so thrilled about that.
and me?
i'm horrified...most of the work she sent home was MATH!!!



this is a pivotal school year for our family. taylor is graduating, avery is starting her first year of full time school, and parker, once he gets to school, is in grade 5.



didn't know that grade 5 could be considered a pivotal year?
well in my world it is...

grade 5 was not my best year. i think i spent more time in the principal's office then in the classroom. i won't elaborate less i further incriminate myself but let's just say that the thought of being the parent of a grade 5 kid makes me a little weak in the knees.

grade 5 is that year where you exchange the "primary" class for "intermediate" and in this day of age, are graced with the label "tween". of our 3 kids, parker changed and "grew up" the most this summer. it feels as if in the blink of an eye, he left little boy behind and entered this funny little "tween" stage of life. it has been quite remarkable to watch him morph before our eyes. this summer, he suddenly developed an awareness of the emotional differences between the sexes... his humourous observations about such things have left us in stitches.

one evening i was watching a 'girlie' show (Say YES to the Dress) and long suffering parker was keeping me company on the couch. a young bride on the show remarked, "oh, every girl dreams of shopping with their mom."
beside me Parker snorted and guffawed aloud, "lady, i can assure you,NO BOYS have EVER had that dream!"

yes, my quiet, shy middle child is rapidly changing and we are seeing a humorous, scientifically oriented side emerge. he has a keen sense and thirst for the mechanics of how and why things work. this was best evidenced in a 2.5 hour discussion we had on 'puberty' this summer. the general 'birds and bees' overview was not even close to satisfactory for his scientifically inquisitive brain... NO, this child wanted a university level tutorial which meant that his inquisitive questions such as "what is the name of the hormone that signals the brain to produce testosterone?" had me "googling" for the answers every 5 minutes.

this summer he made the rather astute observation that girls and women say the word "cute" ALL THE TIME.
and you know what?
he's right.
since he pointed it out
i noticed
i have "cute-itiss"
and so does the rest of the world
the word cute is everywhere!

even on the stapler in the tattoo shop!
Poor Parker nearly had a coronary when he saw that.

and now on to my bookends, taylor and avery




avery has adjusted well to grade one. or maybe i should say that grade one is adjusting to her! with a zeal and zest for life that is truly her own she has enthusiastically embraced this the start of her full time school career.

en route to school on the first day, she asked,
"so i just want to be clear about this... i'm still not allowed to kiss boys this year?"

oh my.
what a girl!
she keeps us on our toes but puts joy in our hearts at every turn.

First Art Work of Grade 1
"on summer holidays i climbed a big mountain with my family."

taylor is in grade 12.
i can hardly believe it...i don't want to believe it.



a couple of weeks back, graham and i accompanied taylor to the army base where he will be undergoing his training for the reserves this year. we met with his 2nd lieutenant, were introduced to his platoon leader and were given a tour of the base. at one point during our tour, we rounded a corner into a hangar that was a bee hive of activity. military vehicles and personnel were everywhere. i was completely overwhelmed with the sight of so many soldiers dressed in full fatigues. i think in that moment the full gravity of this hit me hard. or maybe it was the 2nd lieutenant saying words like "afghanistan, road side bomb, armored vehicles..." at any rate, i left that base feeling anxious (and went home to shed a few tears in private) - while graham and taylor excitedly exclaimed over the guns. sigh.



at the start of every new school year, i have always taken time to consciously choose to enTRUST my kids to God. somehow it always seems an appropriate time of year...i guess there is something about releasing them from the safey and security of your home and "sending them out into the big, bad world" that can do that. this year trusting their future to God has a whole new level of significance. yes. this year the world seems a whole lot bigger and badder.

TRUST FOREVER

"never doubt in the darkness what God has shown you in the light."

we successfully fulfilled Taylor's birthday adventure today...



we've been planning this adventure for a very long time...but before i explain the story behind it, i might as well just go ahead and reveal the results first ...figure most of you are going to scroll down before reading anything anyhow...


we both got TRUST tattoos.

mine is on my wrist.

they both have lyme green stars.
green stars symbolize HOPE.

Taylor's is on his forearm.

the idea of permanently inking ourselves with the word "TRUST" was conceived already about a year and a half ago. our desire in doing it was two fold. one - it was to be our special way of celebrating god's faithfulness in fulfilling his promise of healing. secondly - we felt it was a unique way to share with those we meet the story behind the word TRUST.

the initial plan was that this would be something we would wait to do until i was 100% healed.

of course, we never expected that this journey of TRUST would still be raging on.

this summer i experienced some of my darkest moments of doubting and questioning God's promise to me... His amazing grace and tender mercies are what brought me out of it. God is so faithful to meet us even in our darkest moments because he is trust-worthy. just shortly after that, taylor and i were talking about just how challenging it can be to continue to believe what God has promised when it feels so very dark and hopeless. it was during this discussion that taylor said, "you know, mom, we need to get our TRUST tattoos now."

it was exactly what i had been thinking.
it was exactly what i felt i NEEDED to do, too.

yes...inking TRUST before the fulfillment of it is complete is in a way our statement of faith in what God has promised. our way of saying,

"yes, even in the midst of the darkness, i believe God's promise! I believe that what he has said He will do, HE WILL DO!"

and lastly,
about that 2 day delay!
we're still not exactly sure how that mix up occurred.
however,
i now know why...

i sat down to do my devotions this morning - i read from a book called "31 days of praise"
i opened it up to DAY 24
and
the verse for today, Sept 24th was OUR TRUST VERSE!
so amazing!

TRUST GOD
from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!

~proverbs 3:5-8

P.S. a small note of importance: our tattoo adventure was discussed with DR H. obviously i had concerns about whether or not this was a wise choice at this time - he gave me 'permission' and the complete "A-Okay" stamp of approval :)

TAYLOR'S BOGUS BIRTHDAY ADVENTURE

today is (was) taylor's 17th birthday.
wow.
my son is 17.
hard to believe.



this year's celebration (his birthday gift) has been in the works for sometime...

careful planning
hours of preparation
nervous anticipation
weeks of counting down

and finally, finally, finally
today was here...

we arrived at our appointed time,
announced our arrival to the woman behind the counter
only to be met with a blank stare
and then came the all too familiar, ominously ironic response,

"ah, are you sure you've got the right date?"

"oh yes! today is his birthday! there is no way i'd have messed up this date!" i confidently exclaimed.

"i don't think so. our books say your appointment is for the 24th. do you have your appointment card?"

i pulled out said appointment card with shaking fingers

i stared and stared and stared
in bug eyed bewilderment

sure enough card reads "sept 24"

heart sinks
gut lurches
brow drips
mouth gaping
no sound
head in hands
complete fail

but should we really be surprised?

"wow! mom! seriously!"

OH IF THIS WASN'T SO TERRIBLY DISAPPOINTING...it would have been hilarious.
really! in my defense, we all know i am completely retarded with numbers. so why in the world do we continue to let me book appointments?

i should be completely banned from calenders!

that part of my brain, no matter how hard i try, just does NOT WORK!

unfortunately, the venue was fully booked so there was nothing we could do but count it a loss (oops, can't do that either!) and come back on the 24th!

so desperately anti-climactic!
and
i-ca-rumba!
i was already nervous about this birthday adventure.... and this delay has left me rattled and significantly more nervous about the whole thing!
add to that, graham jokingly bellowing, "it's a sign! it's a sign!" - as in "we shouldn't go through with it!" - has done nothing to alleviate my anxiety over the whole mishap...

yikes! there is no room for error on this one! none. zip. nada.

and poor Taylor!

albeit, he was (is) an amazingly good sport about the whole thing. it really was a huge let down...there has been so much build up leading up to today and this event was (is) our birthday gift to him. not to mention that last year's birthday, his BIG 16, was very disappointing for him. quite frankly, it was one disaster after another. it all worked out in the end ( after a month long delay) and ended up being worth the wait however his actual birth day dealt him several difficult letdowns.

so this year, i wanted everything to go off without a hitch and to be perfect...oh dear, quite frankly when it comes down to it, when it does happen it has to go off without a hitch AND be perfect! this delay had better be the only glitch!

sigh.
yeah, we're both feeling a little deflated over it but we're just "trusting" there was a reason for it to be this way...aside from my retarded brain!

and i keep reminding myself (and him) that it is the imperfect moments that make for unforgettable memories!

TRUST ME, mom...i will never let you forget this one!

THE LAST 2 WEEKS ON THE FEARLESS FRONT

Here's what's been happening on the fearless front over the past 2 weeks:

"courage is standing at the bottom of the mountain, knowing that the climb is going to hurt like hell and climbing anyway."

there was much to explore on top of the mountain (in Whistler)
there were breathtaking views of the valley below
and
the snow capped peaks of the mountaintop that still towered above us
and
there was a craggy, boulder strewn hill before us



it wasn't long before the kids were wanting to "hike" up it
no one expected me to go along
no one even dreamed that it was possible

however
i was profoundly aware that i had to climb it

i didn't know why
i didn't know how
but
i knew i had to do it

i had to do it for my family
i had to do it for me

i had an innate sense of God's calling;

"TRUST me to give you the strength to climb this mountain."
and so i climbed.



when i reached the top, taylor remarked;

"wow, mom. all summer you were practically bedridden and now you just climbed a mountain."

it was (is) remarkable. it was (is) miraculous.

i climbed because i was called to
and
now i know why

conquering that rocky, boulder strewn hill on that mountain top is our family's tangible, visual symbol of the victory that is ours through Christ.


we can trust him to give us the courage to face the mountain and the strength to keep climbing until he ultimately gives us victory over it.

"one day at time - this is enough. do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. live in the present and make it so beautiful that it will be worth remembering."

since starting my pre-digested goo, i am continuing to see a steady improvement. my blood work is continuing to show improvements. better than that, i can feel it. i am experiencing some semblance of "wellness" for 2-3 hours just about every day.

yes, little by little i am making progress.
it's quite remarkable.

physically, i no longer feel like i have one foot in the grave...yet after living in the valley of the shadow of death for so long, it is challenging to fear no evil.
it is not an irrational fear to have. it is perfectly understandable

while i hope the remarkable improvements that i have experienced over the past 4 weeks, mean that the worst is behind me, i recognize that i am not out of the woods, that there is still more mountain left to climb - and just how big, how high, how rocky and jagged it is remains to be seen. and i carry with me the knowledge that what lies ahead may be just as painful as what lies behind. abilities gained and improvements seen may once again be (temporarily) lost.

yes, everyday, i have a moment (or 2 or 3 or 1,000) where these fears overwhelm me just as surely as my everyday episodes of pain, fatigue and general retardedness do. i can look at my life - what is has been and what it is and what i hope for it to be and i can become easily overwhelmed with the mountain that still lies before me...and i fear plummeting back into the darkness and pain of the valley...
and i am not alone in feeling these fears
my kids
my husband
my family
feel and face these fears too

living in the valley brings with it a mountain of grief, pain, sorrow and loss for each of us - and some days that mountain can feel just as insurmountable as my physical fight.
yes, we're in this fight together
while we can claw, climb and fight our way up it together
ultimately
healing in the valley and victory over the mountain
comes only through complete reliance and trust in God

just as surely as i must
TRUST Him to carry me up this mountain
i must also
TRUST Him to carry my family up it too



here's a small picture/video montage of our mountain top experience:

THOUGHTS FROM THE WALL

WALL OF HOPE
September 17, 2009

"a peaceful, quiet gathering of people held annually across our nation, in acknowledgment of those suffering with Lyme Disease and in remembrance of those who have died in their struggle with this insidious disease."

Vancouver Lyme Support Group's
"Wall of Balloons"
each balloon had the name of someone (in our area) that is living with lyme and was either too sick to attend, or out of country getting treatment or have lost their battle -

graham and i attended the Vancouver Wall of Hope on Sept 17.

it was a good day
it was a difficult day

it was great to be able to connect with some of the "old crew" from our support group. i haven't been able to make it to many meetings over this past year so it was wonderful to catch up with these amazingly courageous folks. it was wonderful to finally get to meet (and hug) my internet friend "LN"...a friend and fellow lymie whose emails of encouragement have meant so much to me.

furthermore it was hope inspiring to hear that some were not in attendance because they were at WORK.
recovered enough to work
now that is hope-inspiring!

treatment works.
period
it is horrible
it may take years
but
it works
people are regaining quality of life because of prolonged antibiotic therapy.
treatment works.
and sadly
people...MY friends
are losing their lives because of misdiagnosis and lack of treatment.


MY friends
are losing their lives to a disease that is preventable, treatable and curable if caught early.



their stories are my story



their stories are our stories...



and

their stories are why
the fight for better diagnostic testing and access to treatment IN canada is a matter of life and death

TAKE A MOMENT...

to say a prayer for my friend Tracie who lost her sister Leslie on November 2, 2008

Leslie Rae Wermers

remembered always

Saying Good-bye to a Warrior

TAKE A MOMENT

to visit this Lyme Memorial
a website dedicated to honoring those who have lost their battle

WALL OF HOPE

WALL OF HOPE
ACROSS CANADA
LYME DISEASE EVENT
Thursday, Sept 17/09

What is the Wall of Hope?

"It is not a militant wall...it is not a political statement...It is people, standing shoulder to shoulder, to share the burden of this illness and to remember those who did not have anyone to share the pain. We (Those of us with Lyme) all have the same story. The only difference between stories is each is personal...it happened to us...other than that we could put one story on top of the next and with the exception of small jigs and jags they are carbon copies of each other."

The Wall is for people...sick people...and their families and friends. It is not for activism or making a statement other than,

Help Us.
Stand with us.
We need you to join us so we can share the pain and the abuse.'

The rest of the story behind the Wall of Hope can be found here:
http://drerniemurakami.com/forum/index.php?topic=968.msg4769#msg4769


VANCOUVER, BC

We will be holding our Vancouver Wall Of Hope at the BC Centres For Disease Control (BCCDC).
They are located on 12th Avenue, west of Cambie St.

WHEN: Show up at 9:15 AM, next Thursday, Sep. 17th.
MEET: Corner of 11th Ave. West & Heather St. in the park.
(2 blocks west of Cambie, 1 block north of 12th Ave.)

We will be inviting the media, so turnout is very important. Please commit to show up!
This is THE Lyme event of 2009. Bring family, bring friends.

A strong turnout can get us on the evening news and spread our message to tens of thousands of people.
This is a great chance to turn the tide in our favor.


Wear green.
Pack an umbrella.
Bring two other people.
And your broken, indomitable heart.

VICTORIA, BC

Wall of Hope
Front Steps of the Legislation building
501 Belleville St
10-11:30am

KELOWNA, BC

Wall of Hope
Interior Health
1340 Ellis Street
(please note this starts at 1 PM)

TORONTO, ON

Wall of Hope 2009 -
Queen's Park / 17 Sept 10:00am

We are very pleased to announce that Dr. Jozef Krop (LLMD) and Ms. Helke Ferrie (medical/science author) will be speaking at the event. We will also be making a formal presentation of our petition to an MPP, which will subsequently be read in the Legislature.


SEPT 19

LETHBRIDGE, AB

Wall of Hope
Galt Gardens at the fountain
1pm - 3pm

OUR BONUS DAY

today (sept 4) was officially our last day in whistler
(this was confirmed by reliable sources)

since we thought yesterday was supposed to be our last
i guess you could say today was our bonus day

a whole extra day of holiday
yippee....not!
seeing as our bonus day now includes a gondola ride
i'm thinking i should a left when i had the chance!

i spent most of the morning worrying about it
my stomach in knots
bile rising in my throat
my mouth an acrid desert
my knees weak
and my heart pounding in my ears
whenever
i thought about getting on "the ride"



i'm not kidding either
i really considered hanging back today
yikes, don't say 'hanging'

back and forth my mind and spirit sparred
i did not want to scale that mountain!
no way
no how
no can do
however
it was not lyme that stood in my way

i am well enough
i am able enough
i am strong enough
no it is not lyme that would impede my ability today

it is FEAR
the choice is clear
how can i even consider allowing fear to hold me back?


my yesterdays have included the use of a wheel chair
my tomorrows may include many more

but
TODAY I AM ABLE...ain't nothing going to stand in my way!

"Come to the edge." he said
"We can't. We're afraid."

"Come to the edge." he said
"We can't. We will fall."

"Come to the edge." he said

And they came...

And he pushed them....and they flew.

-(Guillaume Apollinaire)

our bonus day...
has been so much more than just a breathtaking ride up a mountain

our bonus day...
has been about facing whatever mountains stand in our way and trusting God to give us the courage and strength to scale them.

"when faced with a mountain, i will not quit! i will keep striving until i climb over it, find a pass through, tunnel underneath or simply stay and turn the mountain into a gold mine, with God's help."

our bonus day?
well, i wouldn't trade it for the world

THE PRACTICE CHECK-OUT

this morning (thurs, sept 3) we checked-out of our hotel.
only to discover
we are actually booked in until friday (sept 4).

ha ha
all the stress of packing up and hauling all our stuff
groceries
toys
bike gear
clothing
taylor's library of books

all of it piled precariously high and dragged into the lobby on a luggage cart
all of it for not!

oh well
practice run, i suppose
at least we'll have it down to a fine art by tomorrow morning

graham and taylor dragged all our stuff
back up to our room
(grumpily moaning and groaning all the way)

and how could this happen anyhow?
easy
i got left in charge of the itinerary again
what were we thinking?
we weren't. obviously.
i, with the brain infection and lesions
i, with the lyme that impedes my ability to decipher numbers and dates, was left in charge of numbers and dates
what were we thinking?
especially after the missed flight disaster of hawaii
you'd think we'd learn!



this being what we thought was our last day we had planned on splurging and having a meal out
yes, throwing caution and my green goo to the wind, i planned on EATING FOOD today
REAL FOOD
ahem
more like fast food loosely defined as real food
NACHOS
yum, really good and really bad for me
i love nachos
and
they have world famous nachos in whistler at restaurant called Merlins
i cannot resist them
seeing as i couldn't eat for my birthday
we planned this as sort of a belated birthday dinner

we're thrilled that graham's cousin and family (who live in Whistler) were able to join us for my epic nacho binge

4 little goertzens,
4 mischievous little grins
not sure this mountain is big enough to contain all 4 of 'em!

we had a good time with Rod and Tanya and their 2 little cutie patooties, Zayden and Quinn. we've really enjoyed getting to know them better over the past couple of years. we appreciate their friendship ...and those boys and their smiles make me giggle.
(if you're ever in Whistler and in need of a good laugh or some really good licorice - make sure to pop into their store - Upper Village Market)

thanks to their generosity, we now have tickets to go up the blackcomb gondola tomorrow for our real last day

we've never done this before
graham is super excited
the kids are thrilled
and me, well i'm trying not to vomit at the thought of coming down the side of a mountain on an open air chairlift!
i am not a height person
freaks me out!
eek
the thought of me or my kids dangling miles above evergreen alpines and bears?
no seat belts to tie us down with?
ack

tomorrow, the hills will be alive alright... with the sound of my retching and shrieking

GET YOUR NOSE OUTTA THAT BOOK!

a huge reason for our desire to get away for this holiday was because we know that this could very well be our last summer with taylor home

this summer Taylor completed all qualifications for joining the military reserves and we just received word today (Sept 2) that his file has been accepted by the head recruitment office in Ottawa
sometime in the next couple of weeks, his status will be made 'official' in an enrollment ceremony

he will train with the reserves this year. then immediately following his graduation from high school in june, he plans to leave for boot camp in Ottawa and begin his career with the Armed Forces of Canada.

shriek
swallow hard
hiccup
hold back flood gate of tears threatening to erupt from my eyes

alright
enough with that
i'm on holiday and don't want to dwell on this just yet
i really can't
it is too painful
letting go bites
and besides he's with us now
and
so before i cue the sad violin music
i shall pull myself out of this sad reverie,
i shall BE in THIS moment,
i shall bond with my boy....or at least attempt to!

can you believe the boy has had his nose in a book for most of the past 3 days?

reading in the hotel room

reading in the village

reading in the hot tub

this morning i finally snorted and demanded,

"taylor get your nose outta your book and bond with your momma."

"wow, mom! i'm not rotting my brain playing video games or watching tv. i thought you wanted an electronic free holiday? sheesh, here i am expanding my brain by reading and you are telling me to stop?" came his piously cheeky response

argh
forget my soulful repartee on letting go..i want to strangle the kid!

72 HOUR MARK

last night was really rough.
.
fevers, chills, night sweats, joint pain and hallucinations.

i slept very little...
kidneys were working overtime
which meant hobbling to the bathroom every 45 minutes all night long

and the times in between?
they were spent hallucinating and enduring night terrors...any time i did manage to fall asleep i was pretty quickly jolted awake by my own screams

i have a rather large repertoire of varied hallucinations...
occasionally they are rather exciting - like the time Todd Bertuzzi showed up in my curtains
but generally speaking,
they are pretty scary and terrifying - i "see" all sorts of things
last night i had a tarantula fly off my bed onto the wall
and
sometimes they are weird (big surprise) - like last night the blankets in our room were illuminated in a strange green glow
made me think of superman and kryptonite.
too bad superman never showed up


somewhere in the wee hours of the morning, it dawned on me that these are hallmarks of a babesia herx for me
quick check of the time line confirmed it
it's been about 72 hours since i started my meds to fight babesia
i have always herxed at the 72 hour mark
just a little "baby herx" which is manageable and bearable because it is over relatively quickly (lasts about 24 hours) and is much milder than the "granddaddy of herxes" (can last 3 days or up to 8 weeks) that generally hits around the 14 to 21 day mark...

so baby herx behind me, the next few days i should see some general improvements in well being


yesterday avery announced that she had decided that we should have a 'girls only' breakfast on the balcony for this, our first morning in whislter

how many folks can say they've enjoyed a green goo girls only breakfast on a balcony in whistler (or anywhere in the world for that matter!)

NO BOYS ALLOWED.
she was very adamant about that

boys exiled to indoor dining.

after the night i had, it was a struggle to haul myself out of bed...
but it was so well worth it




after all, my girl can put a smile on face no matter how rough i feel

OLYMPIC SIZED FAMILY BONDING

we've decided to take full advantage of this streak of wellness i am experiencing and head out of town for a little holiday.
we are in need of a little family bonding
this has been a tough summer

my last streak of wellness was back at the end of june when we attended the YFC National Ministry Conference in Edmonton, AB.


Graham, Parker and Avery embarked on an epic 13 hour road trip to Edmonton.

parker and "pretend mom" somewhere in the wilds of alberta

parker, avery, "pretend mom" and our good friend joan -
who graciously opened her home to my crew and put them up (or put up with them) for several nights

parker takes "pretend mom" canoeing

"real mom" would have loved to join my family on their epic road trip however doing so would have come at great physical cost to me. thanks to the generosity of friends, i was able to fly to Edmonton. we were so grateful for this gift as it allowed me to spend my limited energy on being and doing rather than traveling. and do we did!



Our National Ministry Conference was awesome. Tony Campolo was one of the speakers (need i say more?) it was a great time of encouragement, building, refreshment and renewal and re-connecting with friends from around the country.

we were incredibly grateful that i was able to attend the conference at all, let alone take in as much and do as much as i did. i made it to morning and evening sessions by taking marathon naps of 4-5 hours in between. this was the most functional i had been in quite awhile

we spent a few extra days "holidaying" in the Edmonton area after the conference ended, visiting with some dear friends and spending a day at the world famous West Edmonton Mall Water Park



thanks to MY DRY PRO PICC LINE COVER
i was able to even go for 2 water slide rides with Parker and Avery



all in all, it was a terrific holiday
and
a much needed time of family bonding
however
taylor was not with us
(he was in costa rica on a 2 week missions trip with our church youth group)

welcoming taylor home! so very happy to have him back!

his presence was immensely missed and it left a huge crater sized hole in our family
we all missed him terribly

upon our return from Edmonton, i had a HUGE crash
and aside from a handful of 'functional days' that included an outing to our local aquarium, a trip to the beach, and a sprinkling of visits with friends and family, i have spent the majority of the rest of this summer fairly home bound and unable to participate in many activities with the kids

one of my greatest fears is that the most prominent memory my kids will have of their childhood is mom being sick, mom lying on the couch and mom herxing...it is a fear i am learning to surrender and trust our heavenly father with...

and i guess in part, it is that fear that motivates me to make the most of life when i am able and create meaningful memories for my kids to carry with them

so, as you can imagine, after spending my 3rd summer in a row of seeing more couch than beach,
i have had a huge need to spend some intensive, concentrated family bonding where the 5 of us could just BE together...with no expectation of 'doing' other than just being together -
and being away from the distractions of everyday life...

xbox
cell phones
texting
TV
email
snail mail and the bills and invoices it delivers
basically i wanted a place to nest with my family away from the distractions of modern living,

yes, in a moment of insanity,
i was envisioning a remote (preferrably ocean front) locale where we could light a fire, gather round and all sing kum by yah
one small problem
i don't camp
and
remote ocean front cabin get-aways are not cheap (seriously!)

and the kids were less than thrilled with the idea of doing without modern convenience...family bonding is enough torture for them.

amazingly enough, they were so opposed to the idea that they had an immediate meeting of the minds and ALL agreed there was one place where they ALL wanted to go.

their chosen destination?

WHISTLER, BC
official alpine skiing venue for the 2010 Olympic Winter Games
and
official site for the 2009 Olympic-sized Goertzen family bonding

really it is rare for the kids to all be in agreement
they presented a very unified front on Whistler being "the place to go"

initially i was less than thrilled...
the thought of navigating Whistler in wheelchair conjured up all sorts of death defying yet horribly hilarious scenarios

whistler 2006

and it was on a holiday in Whistler 3 LONG years ago (above photo), when i had one of my first inklings that something was really wrong with me. all i can remember from that trip was being in an incredible amount of pain, experiencing monumental fatigue and feeling as though i was being poisoned and electrocuted.
but you know prior to that,
we had been going to whistler for a number of years (my folks have a time share there)
and we have some pretty fond and wonderful memories
so pretty quickly i warmed to the idea

2 OLD FAVORITES

taylor & parker
whistler 2001

taylor, parker & avery
whistler 2006

and now
i just have to trust that i will remain well enough to be able-bodied for this trip
and
if not
well, i will just "roll" with the punches if they come

at any rate,
the kids are in for some olympic-sized family bonding...whether they like it or not!

"expect the best, prepare for the worst, plan to be surprised...
and capitalize on what comes."

THIS WEEK ON THE FEARLESS FRONT

friday (aug 28) saw me knock back my first round of ABX since the end of June
given what it has taken to get me back to this point
you'd have thought i'd have had a ceremonial moment of something or other to mark the occasion...
i don't know what exactly
maybe some sort of ceremonial salute...

dance a jig?
let loose with a shrieking war cry?
shadow box with my pill box?

not sure what i expected to think or feel...
maybe some sense of impending doom, apprehension or dread (after all a herx is now imminent)
or
at the very least,
i'd guess i figured it would take some herculean effort of mind to work up the nerve to face the fight again

but no
i just woke up
popped an alinia and a malarone
and
washed it down with some lovely green goo

no big moment
no dramatic hoopla
nope

just dove in with both feet
with nary a second thought

it was so anti-climatic that it was almost disappointing!
almost
except for this

God-breathed peace and courage raining down on mel

in my finest hour,
i could never will this kind of peace
in my strongest moment,
i could never summon this amount of courage

³You will guard him(her) and keep him(her) in perfect and constant peace whose mind [both its inclination and its character] is stayed on You, because (s)he commits himself(herself) to You, leans on You, and hopes confidently in You.

⁴So trust in the Lord [commit yourself to Him, lean on Him, hope confidently in Him] forever; for the Lord God is an everlasting Rock [the Rock of Ages].

Isaiah 26:3-4

WEIRD & WONDERFUL DISCOVERIES

****please note dates to avoid confusion ****
this posting should've been up 2 weeks ago but i've had some technical difficulties...
hopefully i'll have all entries from past 2 weeks up in the next 24 hours

this week (Aug 25 - 26), we took our weirdness south of the border

in keeping with what has become a family tradition we headed to the Seattle,WA area
for our annual
"shoe and zoo adventure"

the shoe thing is for Taylor....
we indulge Taylor's shoe fetish and (thankfully the nike outlet sells size 13s at a semi-affordable price which makes this a wise indulgence!)
and
in return he endures the zoo with us



yes, it is probably the world's worst disguised bribe...
but hey Taylor had a rather unfortunate incident at a zoo when he was younger!
(the dramatic tale includes a rather large and annoyed black panther which possessed a rather amazing ability to take aim and "spray" the brash, young lad who was taunting it from 15 feet away - Taylor still is suffering some residual trauma -
however he learned a valuable lesson - cats actually do have feelings.)

we're glad he endures the zoo for us
after all, our family is just not complete without him... and his feet!
but not one of us stands anywhere near him when observing any wild felines.



this year, we deviated from our traditional trip to the Woodland Park Zoo instead opting for the smaller Point Defiance Aquarium and Zoo.
(which was nice but in our humble yet professional zoo viewing opinion Woodland Zoo is better)
however

i quickly discovered some of the most fascinatingly weird and wonderful signs along the way...



...and i might add, i discovered signs that were profound...


and signs that i could only wish applied to human species....




yes, i was almost more intrigued by the signage than the animals and my kids thought my obsession with photographing signs was very weird...


and so they mocked me every chance they got...



i just happily reminded them that weirdness is genetic.

note the sign behind us:
"Alien Invaders"
hee hee

we combined our great shoe and zoo adventure with a "drug run"

what is a drug run?

a huge portion of my medications prescribed by DR H are ordered and come from the states
the majority of them cannot be shipped across the line

therefore we have them delivered to a USA PO box just across the border from our house (thankfully just a 30 minute drive from our home)
and then
when orders come in, we pick them up at the PO Box, 'declare' them at the border and physically bring them across the line

we call these 'drug runs'
just a little lyme humor
obviously we do not refer to our drug runs as drug runs when speaking with border guards

b/c i am just getting this whole new treatment protocol underway, i had an order waiting for me, so on our way home we stopped by our PO box to pick up my latest shipment of drugs.

when the border guard asked us what we had to declare
we told him we were bringing back prescribed meds and supplements
we then declared the monetary total
it is a lot of money
a ridiculous amount
fighting lyme is not cheap

the border guard did a double take and disbelievingly queried, "HOW MUCH?"

once again graham told him the total

to which the border guard jokingly responded,
"WOW! What are you bringing back....medicinal marijuana?"


wow. a border guard with a sense of humor?
weird.
very weird
and
very funny

and then to top it off
all of sudden from the back seat of the van,

Avery yells at the guy,
"Hey, you, mister man, i sure bet you have to pee like crazy after being in that little booth all day!"

the border guard burst out laughing and said
"wow. that was random. you are free to go. see ya."

there you have it.
we declared our weirdness at the border.

one last weird and wonderful discovery to share:

this is a picture of a tidy room.
this is a picture of Taylor's room.
Taylor is a teenager

tidy room + teenager = weird... but wonderful discovery

FINE DINING WITH DR H

i had my monthly phone appointment with DR H today.

i was hoping he would take me off my pre-digested food diet.
no such luck.
when i complained about the limited amount of pre-digested goo choices available,
he quipped back that he was pretty sure he had some pre-chewed food lying around his office.
he cheekily offered to send me some.

then he ventured to add even more pills to my ever growing smorgasbord of pills, enzymes and extracts.

MY FINE DINING BUFFET
-compliments of DR H

ok, i don't actually use the martini shaker, i just threw it in for the fun of it
but i do drink my detox meds out of the martini glass now - they go down much smoother!

i am not currently able to eat any food without my body reacting to it - (i "puff up" 5 to 10lbs overnight) for this reason, aside from small amounts of veggies and fruits, my buffet of pills and liquids makes up my entire daily diet.

now back to my appointment with DR H

here's the good news:

DR H started me on this pre-digested diet of amino acids, minerals and therapeutic enzymes (endearingly known in our home as "The Goo that smells like Poo") at the beginning of august.

ah, yes, plug your noses kiddies,
'cause
the goo is staying
but with your free hand
gimme a high five
'cause
the goo appears to be working!

most notably there has been a significant increase in my energy and stamina levels, my mood swings are less severe....and my toxicity levels are slowly getting better

my weekly lab work is even starting to reflect this stabilization
over the course of this month, there has been a very slow, but definite improvement with my WBC (white blood cell count) and an increase in my WBC differentials

my WBC which is almost never within normal range, is now within range and steadily increasing.
amazingly my neutrophils and lymphocytes which are chronically very low, ("flagged" on lab reports) have slowly but steadily risen since starting "the goo" too

that is exciting news

here's the tough news:

at the same time that there has been marked improvement, in other areas there has been a steady decline in my health.

my babesia (BABS) infection is growing stronger.
BABS is notorious for infecting and destroying the RBC (red blood cells). this is reflected in my blood work and the steady increase in my symptoms that are associated with an active BABS infection.

most notable symptoms are drenching night sweats, hallucinations, insomnia and fractured sleep patterns (meaning i never have a deep sleep - even when i am "asleep" i am aware), tremors, ever-present headache, and shortness of breath episodes.

other symptoms that are getting stronger are related to both my BABS and Lyme infections

i am having rheumatoid arthritis like flares of swollen, stiff and painful joints, arrythmias, CNS disturbances, internal head pressure, neck stiffness...etc.

but
aside from that,
i feel pretty darn good... lol...
and
in spite of all that,
"i don't look sick"
actually,

i'd venture to say i still manage to look good...

...aside from some alarming hair issues, that is.

here's the wait and see news:

in january, when i saw DR H in office, he noticed a pattern of symptom cycling that occurs with me. it runs in an 8 week cycle. meaning for 6 to 8 weeks, my symptoms and level of disability greatly fluctuate between very severe and intense (which means bedridden) to barely bearable (my couch-ridden days) thrown in that time frame is a smattering of random semi-functional days. (and of course, if i am on meds to fight lyme or my other tick-borne infections, than herxing is thrown into that mix)
then
lo and behold
roughly around the 8 week mark, i will have a good run of semi-functional days. it lasts anywhere from 1 to 2 weeks. during this time, provided i take frequent rest breaks, i am able to do much more than usual.
DR H says this is the way that BABS plays.

i am currently experiencing the upward swing of one of these cycles.
so
the question becomes
am i experiencing some relief and more functional days "just because"
or
is the goo really making a huge difference?

only time will tell
i must wait and see

the foreseeable future and prayer requests:

1) i will remain on the goo for the next 3 to 6 weeks
this should be enough time for DR H to assess whether or not my improvements are 'real' and not just part of my 8 week cycle
if improvements do not continue, i will be forced to go from the oral goo to all of it run through IV

so if the oral goo is so gross and smells like poo then wouldn't IV formulations be more preferable?

yes and no.

the answer is complicated
but
the short of it is this

the IV formulations are extremely costly and complicated
but they are a more exact science
i (actually my blood) would undergo numerous nutrient/biochemistry testing
based on the results
specialized amino acid and mineral IVs would be formulated by a doctor who specializes in cellular nutrition
all of this would need to be done in the states

however
while the pre-digested goo is not exactly cheap it is more accessible
but
it is a lot of trial and error to find the right combination for my body's needs
and
iit's success is dependent on my body's ability to absorb it through the digestive track rather than bloodstream.

there are pros and cons to both.
DR H has this other doctor (DR G) on stand-by should we need to move forward with these specialized IVs.

please pray for God's provision should this treatment become necessary.

2) DR H does not feel i am strong enough yet to return to aggressive IV treatment for my lyme. this is concerning because i have now been off of all IV medications since the end of May.

HOWEVER

he has re-started me on 2 meds for the BABS infection

3) on Friday, i will start alinia and malarone for my BABS infection
i am on a full dose of alina and a micro dose of malarone

re-starting meds to fight my infection
means that
herxing will commence shortly

herxing is an unimaginable horror to endure. it is not explainable - unless you have lived through it, it is impossible to comprehend.

please pray for me (and my family) as i (we) prepare to live through this difficult yet necessary part of the healing process again.

historically speaking :)
hey, after 2.4 years of herxing cycles i can refer to it as historic,
i have a very strong herx at the 3 week mark of starting meds
taylor's 17th birthday is roughly 3 weeks away
i was completely bedridden for his 16th birthday last year

please pray that i will be well enough to celebrate his birthday



there is more but for now that is the bulk of it.
and
besides
i'm about due
for another round of goo.
and so
i must go

i cannot type and write rhyming prose
while drinking goo and plugging my nose

too-da-loo!









.

THIS WEEK ON THE FEARLESS FRONT

so i'm just one week into my return to blogging about the fearless front on Sundays'
yet here it is 10:45pm sunday nite
and
i haven't posted yet

oh dear!
night tme is not my best time for deep thinking!

mornings are better
however
my family stayed home from church this morning
which was wonderful
lovely to have their company
but not so conducive to quiet, contemplative thinking

this afternoon my buddy (& fellow lymie) Peter dropped by
he brought me some of my favorite chips
such a nice guy!
graham and i both appreciate what a thoughtful friend he is

Peter taught me how to "Twitter" today
so i guess
"i'm tweeting" now
maybe or maybe not
the whole thing confuses me
but
i refuse to be too scared to try!

yes.
i have courage to try twitter
if you are a fellow tweeter, you can find me on twitter as trust358


anyhow
fearless twittering aside
another week of fighting lyme lays before me
many of you have asked whether or not i am on abx
i am NOT.
DR H still has me OFF of all abx (both oral and IV)
currently, i am on that pre-digested goo he prescribed
as well as a detox protocol that includes a lovely buffet of 85 pills a day
but NO abx
however
i am anticipating that that may soon change... given that my both my babs symptoms are returning and my lyme arthritis is steadily getting stronger
i have a phone consult with DR H on thursday to discuss this and make a game plan for my next step in this fight.

i read the following devotional this week and it was great to be reminded to keep believing that my break through is coming, keep trusting that my healing IS coming....it could just be around the corner - the only way i'll find out is if i continue to fearlessly fight lyme.

“…He said to the paralytic, ‘I say to you, arise, take up your bed, and go to your house.’ Immediately he arose, took up the bed, and went out in the presence of them all, so that all were amazed and glorified God, saying, ‘We never saw anything like this!’” (Mark 2:10b-12, NKJ).

In Mark chapter two, the Bible talks about a man who was paralyzed. He heard that Jesus was in town teaching at another house and knew that He could heal him. The paralyzed man convinced four of his friends to carry him on his bed over to where Jesus was. When they arrived, the house was so packed that they couldn’t get in. Do you know what happened next? Instead of just giving up and going home, the man was so determined to get his miracle that he convinced his friends to climb up on the roof, cut a hole in it, and lower him down to where Jesus was!
Now this man understood that you are closest to your victory when you face the greatest opposition. A lot of people would have just given up. They would have seen the crowd and gone home—even though they were just a few feet away from their miracle. Don’t let that be you! What are you believing for? Don’t give up just because there is opposition. Don’t let others discourage you from seeing your miracle. Keep pressing through today because you are closer than you think to the victory God has in store for you!

Prayer for This Week:

Heavenly Father, today I release all of my cares and anxieties on You. I trust that my breakthrough is coming. I choose to press in and stand strong. I believe Your Word, and I believe that You will reward me as I diligently seek after You. In Jesus’ Name. Amen. (source found here)

PUBLIC WEIRDNESS

we are a weird family
i know that
however
i tend to forget just how weird we are because most of the time i am home with the weirdness
tucked away from the scrutiny of the general public



this week i've had a few days
where i was well enough to get out of the house
which has been wonderful
and
weird for my family who has gotten used to doing things
and going places without me

so I'm well enough to go out this week
and where do we as a family choose to go?

home depot
weird choice
sad but true

off to home depot we go
graham kept looking at me
and
every once in awhile
he'd turn around, do a double take, give his head a little shake
and
repeatedly say
"whoa, this is weird. it's just so weird to have you with us."

"thank you" i sighed
"you've now mentioned that multiple times."

"well, its weird but nice." his reply was accompanied with his cheesiest grin.

"thank you for clarifying that."

when we hit the return section
the gal behind the counter asked graham why he was returning the closest organizer.

"and the reason for the return, sir?" she queried

"ah, there is a dead squirrel in it." graham calmly replied. total poker face.

the poor girls eyebrows hit the ceiling and her jaw hit the ground.
5 minutes of dead silence followed.
graham just nonchalantly stood there .

"ah, pardon me, sir?" the girl finally sputtered

"there's a dead squirrel in it." graham repeated.

by this time the poor girl's eyes were nearly bugging out of her head.

i figured it was time to come to her rescue and let her know he wasn't serious.

"he's kidding. honest. it's okay." i clarified

it still took a few moments for her to really believe me...once she finally realized he wasn't really serious, she had a really good laugh.
we all did.

"is he always like that?" she asked

"yeah
and can you believe he has the audacity to claim that it's weird to be out with me!"

"We are all a little weird and life's a little weird
and when we find someone whose weirdness is compatible with ours,
we join up with them and fall in mutual weirdness...
and call it love."

(source -Think Exist Quotes)

BACK TO THE FEARLESS FRONT

i'm working at a return to the fearless front.
didn't know there was one to return to?
me either
er, well i did
i just forgot about it

let me explain
once upon a time
a long time ago
when i first went public with my blog
i tried to do an entry every Sunday called
"this week on the fearless front"
it's not often that i am well enough to join my family in church
so Sunday mornings often finds me home alone
in order to make it a 'special' day
and different in respect to my standard daily devotions
i intentionally focus on the fearless aspect of my trust journey

somehow
along the way
blogging about the fearless front was lost
an unintentional casualty of the realities of living with lyme;

lost to the challenge of brain fog
lost to the challenge of endless weeks of herxing
lost to an endless list of challenges

and
lost to the ever present challenge of finding fearlessness and choosing hope
in the midst of a time of perpetual night

however
my recent God-inspired collision with courage
happened to jog my memory about this whole business of fearlessness
after all
fear has no business encroaching on my journey
no matter how dark, painful and hopeless it can leave me feeling

The LORD is my light and my salvation;
Whom shall I fear?
The LORD is the defense of my life;
Whom shall I dread?
When evildoers came upon me to devour my flesh,
My adversaries and my enemies, they stumbled and fell.
Though a host encamp against me,
My heart will not fear;
Though war arise against me,
In spite of this I shall be confident.

I would have despaired unless I had believed that I would see the goodness of the LORD
In the land of the living.
Wait for the LORD;
Be strong and let your heart take courage;
Yes, wait for the LORD. - psalm 27:1-3,11-14(NASB)

trust in God
faith in God
hope in God
are foundational to my life and my journey

"Faith (Trust) in God generates courage to face facts and deal with reality. True faith acknowledges the facts but recognizes that God’s truth supersedes worldly facts, and that faith-full action can change things.

Faith (Trust) in God generates the courage to look at the hopelessness of circumstances and yet remain expectant and hope-filled that God will provide a way."

my blog is titled
"ticks and trust - fighting lyme with a fearless heart"
courage is a synonym for fearless
yet somehow i never ever equated my trust journey with courage
isn't that strange?

funny how when God gives you a divinely inspired word
you begin to see it and experience it

in everything i do
everywhere i go
and everywhere i look
i find courage

it's in so many of the verses that have
comforted, inspired and kept me sane
over the past 3 years
it's on the homepage of my blog
it's even in the song
that inspired part of my blog title
"fighting lyme with a fearless heart"


(FEARLESS HEART - Point of Grace)

For even the most trusting soul
This world can be a scary place
So much that we can't control
In every moment that we face

When a thousand what ifs
Whisper in our ears
We remember who's we are
And watch them disappear

I wanna live with a fearless heart
Courage that's coming from trust in God
It's constantly guiding me though the road may seem dark
I wanna live, wanna live with a fearless heart

There are worries chasing everyone
It's evident in times like these
But I have found the confidence that comes
From time I spend on my knees

There's a truth I'm holding onto
As these days unfold
Greater is He, that is in you
Than he that's in the world

I wanna live with a fearless heart
Courage that's coming from trust in God
It's constantly guiding me though the road may seem dark
I wanna live, wanna live with a fearless heart

He's my strength, He's my shelter
He is with me all the way
He's my light and my salvation
Of whom shall I be afraid, of whom shall I be afraid?


i'm getting back to the fearless front
after all,
focusing on what God has to say about it
is what
gives me the courage to fight lyme with a fearless heart

remind me if i forget!

GRINNING LIKE A CHESHIRE CAT

Had another visit with my doctor this week.

i have been really struggling with a sharp increase in joint pain and stiffness over the past 3 weeks.
primarily my hands/fingers, shoulders, elbows, hips, knees and feet.
i guess, suffice it to say, just about every joint has been affected.
to say the pain has been unbearable would be an understatement.
i have spent the past 3 weeks gobbling down pain pills like they are candy...and at best, what i've been using has only knocked the edge off the pain.
i need something stronger.
i WANT some heavy duty pharmaceuticals!

i have never been a fan of using pharmaceuticals....says she who has a picc line in her arm.
oh the irony!
i loathe putting "pharma-chemicals" into my body
always have
even now and even before i got LD
prior to getting LD, i was so anti-drug that i even opted for natural child birth with all 3 kids
no drugs.
no pain management.
no big deal (okay, admittedly my longest labor was only an hour - but, hey, it was still labor and resulted in a 9 pound baby!)

pain is relative
mind over matter.
or
so i used to say.

i changed my mind this week.
i want drugs.
thank you very much.

off for a visit to DR A
where i was frank and to the point;
"i hurt real bad. i want drugs."

now he's a compassionate and lovely fellow
but he is also a responsible doctor
so before pulling out his magic rx pad
he spent some time examining my swollen, red joints
and of course we had a little chat about drug options
unfortunately my choices are somewhat limited because of my current toxicity issues
and then there is the minor problem of the whole tricky factor associated with LD
tricky as in
often many drugs have little effect on symptoms if they are LD related

but there are some viable, non-addictive options
anything is worth trying at this point

so DR A wrote me a prescription
god bless him
and
he also gave me some FREE samples to try

my friend Tina, who often chauffeurs me around to my various appointments, was waiting for me when i excitedly came hobbling out of the office

"what's going on?" she asked with brow raised suspiciously, "you're grinning like a cheshire cat!"

"i got drugs." i giddily replied. "i even got some for FREEEEE!"




so that was tuesday.
too early to tell if they are working yet.
last couple of days i've had better joint mobility and less pain
whether that is just because of the natural waxing and waning cycle of this disease
or
that the drugs are actually helping
i couldn't tell you
only time will tell.
until then
when i feel the need to smile
i look at my little boxes of narcotic freebies
and
grin like a cheshire cat.

MY BIRTHDAY OVERHAUL

LAST friday was my birthday.


i am now closer to 40 than 30. which is fine by me. aside from the effects of gravity, aging doesn't much bother me. i figure why sweat it, you know? after all, it's inevitable. albeit, the toll that gravity has on my body occasionally gets to me but then i just remind myself that there are a bevy of iron clad undergarments on the market to combat that...and they are making advances in that technology everyday.

all kidding aside, i actually like getting older. the Wikipedia defines ageing as:

"aging is the accumulation of changes in an organism or object over time. Aging in humans refers to a multidimensional process of physical, psychological, and social change. Some dimensions of aging grow and expand over time, while others decline. Reaction time, for example, may slow with age, while knowledge of world events and wisdom may expand. Research shows that even late in life potential exists for physical, mental, and social growth and development."

i love that. i love to think of aging as an accumulation of changes that ADD dimension to a person...and that the older i get the more multi-dimensional i get. if you let it, aging can be a wonderfully refining and beautifying metamorphosis. some of the most beautiful people i know are well-developed in years!

obviously, aging isn't exactly a bed of roses either. i get that...after all, i've spent the past 3 years trapped in a body that feels old. really, really old. i'm not big on that. i often joke about the possiblity that i might finally get well...in time to retire and acquire all the aches and pains that go with it. in all honesty, sometimes i worry that i could spend my whole life feeling old.

yes, sure would be nice to actually FEEL my chronological age this side of retirement.

alright, stop with the aging requiem already.

my big outing for my birthday was a visit to the doctor. other than that, i was home on the couch. would have liked it to be different however this is my life right now.
naturally, i had some moments where i felt really sad and alone because of that but for the most part i was able to accept it and make the best of it.

i was happy that we could be together as a family...
and they all made a considerable effort to make my day special...

graham reminded me that i am still way younger than him...and added that i am still younger than many of the trees in the forest.
taylor had the audacity to snicker at that.
i put taylor in his place by gleefully reminding him that a couple weeks back, he got asked if i was his sister.
(i also reminded him that it would be wise for him to be nice to me as it is not completely out of the realm of possibilities that one day we may be in the same nursing home together. after all, the age difference between us is not astronomical. ha!)
however, even though he made fun of me, i am just grateful that taylor spent the entire day at home with me. i recognize that that is a big sacrifice when you are sixteen.
parker, bless his heart, massaged my aching hands and feet whenever i asked him to. he gives the best hand/foot rubs ever.
avery, our resident, self-professed "What NOT to wear" fashionista was adamant about giving me a make-over for my birthday.
Avery is 6.
with no prior make-up experience.
and has limited points of reference, given that i rarely have the energy or inclination to bother with make-up anymore.

i figured this makeover had the potential to have an incredibly hilarious end result.

avery took the task at hand with complete seriousness.

before she got started she gave me a cursory, once over. then with a roll of her eyes, she raised her hand to her forehead and sighed,

"Boy, do i have my work cut out for me! this could take awhile."

apparently i don't just need a make-over, i need a complete over-haul.

ha! can you believe i agreed to posing for a BEFORE photo after hearing that!

"BEFORE"

we're both thinking, "What have i gotten myself into?"

anyhow, much to all our amazement, she actually did an incredible job.

obviously, one should never estimate the magical powers of a fashionista - no matter what their age!

"AFTER"

PURPLE PRINCESS POWER

my birthday overhaul also included a manicure:

worlds longest overhaul - is Parker asleep or passed out?

so apparently because my makeover was such a challenging task, (which i was told at frequent intervals) it ended up taking FOREVER. by the time i was deemed successfully over-hauled, it was dinner time.

of course, because of my fairly rigid dietary restricitions, i couldn't actually really eat anything
however
i am just grateful that i could even SIT at the dinner table with my family...recently, i haven't had the strength or stamina to do that very often.
and
we made my pre-digested dinner as special as possible...

pre-digested "pre-dinner cocktail" and "4 course dinner"

"my birthday cake"




"The overhauled purple princess bids a fond farewell to her early 30s."



"Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are be renewed day by day " 2 Cor 4:16

THE COURAGE TO HEAL

"pain is temporary. it may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. if i quit, however, it lasts forever." -lance armstrong

pain can also be very motivating.

my pain levels have reached an all time high.
and once resolved symptoms are now returning.
amidst the pain, i have had a light bulb moment of realization.

treatment really was working.

duh.

not only did my pain inspire that Oprah-esque "A-HA" moment
it, also, motivated me to finally put in a call to DR H.
given my body's current state of treatment revolt, i wasn't sure what exactly could be done but at least i was willing to FINALLY TRY to do something.

so, last Monday morning found me armed with a new treatment plan from DR H...

no abx for the time being. my body is too weak to handle a herx...so right now, we're working at building up my body, pain management, and dealing with my toxicity issues. my toxicity levels are high. dealing with this is currently the top priority because they are now effecting my body's ability to process food. for this reason, DR H has put me on a pre-digested diet - yes, it is as gross as it sounds.

DR H is an amazingly smart doctor. his level of knowledge about both traditional and less conventional medicine often leaves me astounded.

his latest treatment plan is good. it's comprehensive. it makes sense. seems do-able. yes, even the pre-digested part is doable. barely.

however
despite my confidence in this new plan
following through with it is so very difficult

obviously, the physical aspect of choking back 50+ pills a day and the foul liquid diet is a challenge
but even more difficult to stomach
is the emotional war that has churned and roiled within me.

over the past couple of weeks, i knew that God was moving me towards further and continued treatment under the care of DR H.
in fact, through all manner of ways, he made it pretty crystal clear,
ABUNDANTLY evident, in fact, that right now

treatment is God's prescription plan for me

I KNOW IT
but
i don't like that
not one little bit

however, like it or not,
i was finally seeking and trying treatment!
and so in essence, i was following HIS plan for me, right?
sure. great.

except

I KNEW
that it was crippling arthritic pain, fear and panic
that had fueled my desire for treatment

I KNEW
that moving forward was not based on an authentic obedience nor was it born because of an unwavering faith that this agonizing process of treatment is what God is using to heal me.

and for that reason, i became a quintessential study of neurotic contradictions:

i can, i can't
i will, i won't
i do, i don't
i will win, i will lose
choose life, beg for death
cry without ceasing, too numb to cry
see light, be completely ensconced in deepest, depressive darkness
laugh once or twice, scream mercilessly
rebel, surrender

(congratulations, you've just survived the last 30 seconds of the dialogue that is raging in my head.) oh what fun! this exhaustive neurotic, analytical storm has brutalized my mind 24/7 for the past several weeks.

it is difficult to even put it all into words
however
i read a quote today on a dear friends FB page that put an eloquent spin on the craziness that plagues my being....i have no idea the context of it but hoo-yah did it speak to my soul...

"the war isn't because of a lack of not knowing what to do. The war is overcoming all the physical and circumstantial evidence contrary to our hope that sways our emotions. Having believed something in our hearts, the war is now in our souls; it is the struggle between thought and emotion."


i don't want this journey to include treatment anymore.
anything but more treatment, lord!

i do not,
have not,
cannot see,
how this can even be
i do not,
have not,
cannot understand
that this is healing me
anything but more treatment, lord!
why i'd even try green eggs and ham!
(ok, slightly random, but it seemed to go)

my body is weak
and
my mind is wary
and
my spirit is weary

with arms contemptuously crossed over a heart that was both stubbornly petulant and softly surrendered, i have begged, pleaded, raged expletives, prayed fervently, and refused to pray. i have quietly pondered and furiously wondered out loud. i have spent days devouring and scouring the scriptures, and spent many other days maniacally staring my bible down... all in a desperate attempt to find a different answer; to find a more do-able plan of healing than the one i know he has chosen for me.

he didn't change his answer
nope
BUT
he did give me something huge.

the anecdote to my fear and panic

through Him and in Him,
i received the
COURAGE to follow HIS treatment PLAN for me.

COURAGE
to face the insurmountable

COURAGE
to do the impossible.

COURAGE
to keep walking this agonizing journey

COURAGE
to keep trusting

COURAGE
to move forward in an act of faith in the midst of an impossible situation

COURAGE
to heal

"Courage, daughter. You took a risk of faith, and now you are well." - Matt 9:22

A PIVOTAL DAY

Today has the potential to be the start of HUGE, PIVOTAL change in the diagnosis and treatment of lyme disease. please pray for the landmark hearing that is going on in Washington, DC in regards to the diagnosis and treatment of lyme disease. pray that the truth would finally be revealed.

Historic Hearings On Most Controversial Disease in US: Lyme Disease

Lyme Patients Gather in D.C. and Around the World to Push for Better Treatment and Recognition of Chronic Disease

Story Summary:

• What happens if a tick borne illness is missed, or left untreated? Millions of patients say they suffer from chronic (or long term) Lyme disease. But gatekeepers in the medical community refuse to recognize illness.
• Connecticut Attorney General sued gatekeepers (Infectious Disease Society of America, or IDSA), forcing the oversight panel to review its controversial treatment guidelines that bar patients from getting a chronic Lyme disease diagnosis and treatment.
• Hearing to review long suppressed scientific evidence that Lyme disease can become persistent and debilitating.
• Lyme disease patients from around the world will watch the DC-based hearing via webcast & participate in an international Twitter Chat to share reactions

"The medical establishment will be forced to consider the strong scientific evidence that Lyme disease can become persistent and long term infection that may require more aggressive treatment than what is allowed in the current treatment guidelines", says Dr. Daniel Cameron, President of the International Lyme & Associated Diseases Society (ILADS). Cameron will join several doctors, scientists and patients testifying at Thursday's hearing.

The Infectious Diseases Society of American (IDSA) holds this hearing in response to an antitrust investigation by Connecticut's Attorney General Richard Blumenthal. In his groundbreaking lawsuit, AG Blumenthal charged that the IDSA guidelines for Lyme disease prevent many seriously ill patients from getting necessary treatment. A 2008 settlement resulted in the IDSA agreeing to create a new panel to review its guidelines.

Doctors treating Lyme disease aggressively with long term antibiotics are targeted by medical boards and insurance companies and face losing their license."READ MORE HERE.


the IDSA guidelines that are under review are the exact same guidelines that the Canadian medical community has adopted as practice. in fact, in Canada, these American guidelines are emphatically adhered to at the detriment of thousands of Canadians. (READ HERE and HERE about some of my own experiences with this biased attitude...)

the ONE leading lyme disease doctor we had in ALL of Canada that was willing to treat lyme outside of the stringent IDSA guidelines was harassed for 7 YEARS by the BC College of Physicians and Surgeons. In January 2008, he finally succumbed to the enormous pressure and was forced into retirement. this meant myself, along with thousands of other Canadians (were) and are now forced to seek treatment in the US.

click on link to watch - BC LLMD FORCED INTO RETIRMENT

ultimately, it was this systemic bias and prejudice that eventually forced me into seeking treatment in the US and THE LYME LIFE FLIGHT was the end result

unfortunately, my case is not the exception to the rule.

so, as you can well imagine, today has the potential to be incredibly pivotal moment for change. please pray for the long suppressed medical research to be given fair review. pray that the truth would finally be revealed.

we need for this disease to be recognized, across the board, as the chronic, persistent, debilitating, life threatening infection that it is.

we need access to treatment. we need the doctors who are willing to treat LD, to be able to do so, free from the threat of recrimination and harassment.

ultimately, we need more research done to find a cure.

many people's lives, mine included, depend on it.

SOLACE IN LIMBO

I AM IN LIMBO
i continue to be off of all treatment.
i continue to slowly deteriorate

i don't know what to do
but
i know where to turn

i know God will lead me out of here
He and i
well we're about to mambo out of this limbo
it's just a matter of time
er, hold up a minute,
may be advisable to scrap the mambo,
after all, i'm mennonite
and
mennonites don't dance
however
mambo and cha-chaing aside
i know he'll make a way out
from between this rock and hard place
this limbo state of being that i find myself in

don't know how
don't know when
until then
i am in limbo

in limbo,
i am free
from popping 40+ pills a day
i am free
from running IV 3+ hours a day
i am free
from the agony of herxing

but
i am not free from lyme
it is always with me
despite
my prayers for it not to be

in my limbo state of being,
i have days i can
i have days i can't
on the days i can
i do
on the days i can't
i struggle to do even the simplest tasks
like walking up the stairs
or
pouring a glass of milk
or
holding a fork

in my limbo state of being,
i keep hoping and praying that the
can do days
will begin to out number the
can't do days
but the opposite is true

i keep hoping and praying that
the way out
does not include
more treatment
more meds
more herxing

i don't feel like
i can do that anymore
more than that
i don't want to do that anymore
but
more days than not
i think that that is indeed what
He is calling me to do

but
i keep hoping and praying
that i'm hearing wrong
so
i keep listening and listening
and
i keep hoping and praying
and
i really don't know what to do
and
so i remain
in my limbo state of being

and
amazingly
He gives me solace in my limbo

in my state of " i don't know or maybe i don't want to know" limbo

God knows
and He consoles me

he knows my heart
my aching desire to do His will

he knows my fear, my trauma, my heartache,
keeps me stalled
in this state of limbo
and
my solace is that he understands
and
my solace is that He is here
with me

limbo
can be a scary place to be
fear of the unknown
fear of the known

limbo
is not knowing
but God knows

solace
is knowing that God knows
and
solace
is knowing that the unknown is known by God

and because of this,
my state of limbo has become a place of solace
a place of refuge
a place of rest

limbo is
a place of surrender
and
a place to be still

"Be still and KNOW that i am God." - psalm 46:10

in Him, i am still
in Him, i find solace in the stillness that is my limbo


"thank you that I can be still and know that You are God...that you are in control...and that i can restfully depend upon You and absorb Your strength and joy and peace. thank you that i can give myself up to be led by you...that i can count upon Your working in me and through me as a FACT, totally apart from sight or feeling... i praise you for the gracious way you will infuse me with inner strength through Christ...so i will be ready for anything you want me to do, and i'm equal to anything you allow to happen in my life..." (-Ruth Myers 31 Days of Praise)

SO WHAT'S NEXT?

i have been off of all meds for just over 6 weeks now.
initially, it was necessary for my doctors to stop my treatment because my body was just not tolerating it (as evidenced by my crazy labs and haywire symptoms)

while we were waiting for the results of my tumor testing, DR H wanted me to re-start my oral meds for my babs infection. i tried to re-start my orals however, even small doses, made my body too toxic and with quick succession i would land right back on the couch or in bed full time.

it took close to 4 weeks off of all my meds for the intensity of my symptoms to let up and for me to experience some relief. it is just in the last 2-3 weeks that i have been able to have some semi functional days.

loosely defined, "semi- functional" can mean a variety of things. but currently in my world, 'semi-functional' means that if i am at the top of my game and having a really, really good day, then i am able to be "up" for anywhere from 1-3 maybe 4 hours before having to retreat to the couch or bedroom to recover.

i am grateful that i had a good run on some semi-functional days at the tail end of June/beg of July. this happily coincided with me being able to join my family and attend the YFC National Ministry Conference. (more about that at a later date).

currently, if i take any of my meds, i am not functional at all.
if i remain off of them, i have some semi-functional days.

and yet, those semi-functional days are becoming sparse and few between. last week, i found myself almost exclusively "couch-ridden" again. I was weak, exhausted, twitching, aching, and struggling with severe shortness of breath. yesterday and today, my symptoms were more manageable and so i could be semi-functional again.

the frustrating thing about this is that even though i am currently more functional off of treatment,
it is still profoundly clear that i undoubtedly need to be on treatment
without treatment, there is a slow but unmistakable progression of deterioration in my overall un-health

so i feel like i am between a rock and a hard place
treatment -
can't live with it;
can't live without it

quite frankly that sucks
it's a depressing and discouraging place to be

things feel pretty impossible right now

so what's next?
well, i know what my doctors want
one way or the other
they want me back on treatment

DR H is frustrated and perplexed
but he has a couple of new strategies he'd like me to try
he wants me to try a new IV medication
he also wants to add another doctor to my team;
"DR L" is a cellular nutritionist/ blood specialist
my recent crazy lab work would indicate that i could benefit from her expertise

it all sounds good
at least i still have some options left to try

however
I DON'T WANT TO TRY
period

to be frank and honest
i have pretty much lost faith in the treatment process
i just don't know anymore
do this, do that
take this, take that
i do and i do and i do
i endure and endure and endure
and yet there is no end
this fight goes on and on and on

i have now been on IV meds for 15 months
and bottom line is that
i don't feel as if i am any better now than when i started treatment 2.4 years ago
and
any improvements i do experience are short-lived
improvement is neither consistent nor is it lasting

so what's next?
not only do i not want to try
even if i wanted to, i don't feel like i could

both my mind and body are rebelling

so what's next?
what happens when your body "can't", your mind says "quit" and your will "won't try"?

this is a difficult time
ah, yeah, major understatement

this is also an incredibly difficult thing to write about
to admit
and
to acknowledge
and
to put 'out there'

it's hard to be vulnerable
it's hard to be authentic with my pain and struggle and hopelessness
and sometimes i worry that sharing the darkest parts of my journey might have a negative impact on someone else

but let's face it,
i am no pollyanna
(not that i ever aspired to be)

i don't think it comes as any surprise to anyone that
i have moments, days, weeks
where all i see is hopelessness

this is nothing new
i have been visited by hopelessness many times during this journey
and on my own,
i know i cannot raise myself out of it
in order to CHOOSE hope
(and it is a choice)
i must continue to choose God
seek God
pursue God
TRUST God

that works
remarkably well
imagine that

i know that
i have lived it
i have experienced it

so why now, after all this time, do i find myself so profoundly communing with my hopelessness rather than with my God?

even after all He has done for me,
i doubt
i question
i beg
i plead
i cry
and
i wonder
why hasn't he healed me yet?
how long must i suffer?
i stomp my foot in indignation
and scream
at the unfairness
the endlessness
the hopelessness

i kinda thought that the further into this journey i get, the EASIER it would be to continue to TRUST Him but i am finding that just the opposite is true.
the longer this goes on, the harder it gets

i trusted him with this journey when it began
and
i trust him with the end result

but do i trust him with the part of the journey that is between the beginning and the end;

do i trust him with the barrenness of the indeterminate, desolate middle space that endlessly stretches out between His promise to heal me and it's fulfillment?

do i trust his plan is good, even if the fulfillment of that promise is 5, 10, 15 years down that road?

that possibility terrifies me but why? i don't know if i can or even want to go there.

if i truly Trust Him and his good plan for my life, should the time frame really matter?
and if i truly Trust Him and believe in his promise to heal me, then how can i so readily and easily embrace hopelessness?
isn't that total hypocrisy?

well, i've been questioning and wondering about that a lot lately.

bear with me
as i delve into the chasm of my hopelessness;
and
plow my way through this sink hole of self pity, doubt, fear, panic, discouragement and disillusionment

last week, i truly wondered if possibly i may have misinterpreted my promise of healing
maybe God meant that i would be healed in death not in life
and so
i prayed for death to come
i begged him to take me
maybe even part of stopping treatment
has come from a desperate, messed up desire for that to happen

if that offends you
that is okay
it offends me
and i'm the one that has prayed it

how can i pray that?
how can i have the nerve to even desire death when i have a family?

feeling that way, at least in part, is the reality of the depravity of this disease
but even more so,
it reveals the depravity of my own human condition

in my humanity;
i only see the mother i am not able to be

in my brokenness;
i believe i am more burden than partner to my husband

in my pain;
i see only the scars that this disease inflicts on my family,
i see only what it takes from us,
and
i see nothing good coming from it

in the depravity of my human condition;
i do not see clearly
in the depravity of my human condition;
i fail to trust in God's good plan for not only me but for my family

i have spent a lot of time questioning and wondering and trying to understand God's purpose and plan in all this
and
i've spent a lot of time asking,
"So What's Next, God?"
but if i'm honest, rather than listening for the answer
i've been spending a lot more time
telling him what i think should come next

i know what i want
i want this to be over NOW
i think this has gone on long enough already!

i am tired of trying
i am tired of fighting

i am tired of the emotional cost
i am tired of the physical cost
i am tired of the financial cost
and
i am tired of not seeing a return on my investments

so, what's next?
well, if i had it my way,
i would want him to heal me NOW

Heal me, heal me, heal me!
i have begged and cried and pleaded
in the face of what feels like treatment failure
wouldn't a divine healing rather than a medical recovery glorify God all the more?

i am sincere in my desire for my journey to glorify God.
however
is my desire for instantaneous healing born from a sincere desire to glorify him or an understandable yet selfish desire for this suffering to just freaking be over already?

the bottom line is that
when i step out of my call to Trust Him, i fail to glorify him
when i step out of my call to Trust Him, i become a self-centered, know-it-all who shrieks,
"i need, i want, and you better do it!"
when i step out of my call to Trust Him, i have the nerve to tell God what i think he should do next!
imagine the audacity!
of ME TELLING HIM what would be best for me;
of ME TELLING HIM how he should best fulfill His promise to me

so what's next?
i'm not entirely sure
but
i know i'm finally ready to listen for His answer to that question


One Day At A Time
(Jeremy Camp)

One day at a time I will walk this road I've traveled so far
One day at a time well I know I will carry on
One day at a time I can see you took my life this far
One day at a time I will take this faith along

All this hope I breathe is given by the hand that carries me
Until I'm complete and I'll take all I will
To understand this plan you have for me, for me

I've been
shut up, shut down
held out, held down
In ways I never knew I would
But
I can feel your fullness in my life

Well I've been
burned out, broken
torn out, torn down
In ways I never knew I would
But
I can feel your fullness in my life

one day at a time

One day at a time I will take these words you've given me
One day at a time I will rest in knowing you
One day at a time I will share this gift you've given me
One day at a time I will walk these valleys through

And all I know is that I see
How much my heart is longing to be cradled by your side
Yeah, I'll give all I can
To one day soon be held by your hand, by your hand

I've been
shut up, shut down
held out, held down
In ways I never knew I would
But
I can feel your fullness in my life

Well I've been
burned out, broken
torn out, torn down
In ways I never knew I would
But
I can feel your fullness in my life

In all these things I will press on, yeah
I'll be with you I know it won't be long

one day at a time

THE LAST 2 WEEKS

"I cannot bear it!" said the pewter soldier.
"I have shed pewter tears! It is too lonely and melancholy! Rather let me go to the wars and lose arms and legs! It would at least be a change. I cannot bear it any longer!"

i've spent the past 2 weeks waiting for test results.
the wait has been beyond hard
beyond stressful
beyond painful
and
it has been excruciatingly slow
and
agonizingly long

over the past several weeks i have had to have a plethora of tests done because of some seriously whacked and abnormal lab results.

the preliminary findings were indicative of a parathyroid adenoma.

adenoma is a fancy word for benign glandular tumor.

i was told that,
"90% of the time these lab findings are indicative of a parathyroid adenoma"

90%!!! yikes.
needless to say, with odds like that, and the fact that my doctor not only had 'the look' when he told me this (he had that same grim look when he delivered the lesion news - he'd never make it as a poker player!) but he also crossed the room and sat down beside me to tell me this, is it any wonder that i have spent the past 2 weeks on the verge of a nervous breakdown? trying to reconcile all of this in my mind, in my heart and given that i am still trying to process the whole shock of the unexpected brain lesion diagnosis - which still has me completely rattled, i have fully expected and feared the probability of an adenoma lurking in me.

lovely
a benign tumor
hanging out in my neck
Lyme, Lesions and Now a tumor?
lovely
i need that about as much as i need a shot in the head

i finally got the results on monday
and i pretty much had a nervous breakdown
bottomed out
hit the ground

i do NOT have tumor
i repeat
i do NOT have a tumor
and yes
i was hysterically upset by this news

rather then feel relief, i freaked
i cried
i raged
i sobbed and sobbed
i grieved

i've spent the past 2 weeks scared to be diagnosed with an ADDITIONAL condition and now i'm upset that i DON'T have it?

i am certifiable!
girl, give those lesions in your head a shake!
seriously!

pretty messed up, eh?
yup
not really rational thinking
but as messed up as it sounds,
at least that condition had a foreseeable, predictable END....and straightforward treatment...yes, i would have faced surgery but that would have quickly ELIMINATED the problem and rapidly relieved this barrage of new symptoms that i have been plagued with for the past 6 weeks...(my latest symptoms masterfully mimic the symptoms associated with parathyroid tumors)

but now
no, no, no
there is NO relief in sight
and i have had enough
enough
enough

everything, all of it,
my lesions
my symptoms
my pain
this never ending cycle of pain and disability
of madness, insanity and relentless agony
up and down, up and down, down, down
all of it, every last bit of it is
lyme
the disease that won't lie down and die
argh
wretched frustration
utter exhaustion
when will this end?
i am so sick and sad and tired of it all

despair
and
hope

hope
and
despair

breathe in hope
breathe out despair

what i know
and
what i feel
are 2 different things

act on what you know
not on what you feel

i feel the impossibility of fighting this disease
but
i know that God has promised to heal
and so i wait


breathe in hope
breathe out despair

A GOOD TEAM

I have a good team.
a stellar medical team.

Both DR A and DR H are amazing doctors.
i consider myself incredibly blessed to have these 2 docs on my team.

Considering all the controversy surrounding the diagnosis and treatment of LD, and then add to that the fact that it is an incredibly tricky and downright complicated disease to treat, well, right from the get go, I have KNOWN how very blessed i am to have to have these 2 doctors in my corner, working hard to get me well.

and now given all that is going on, i am becoming even more aware and appreciative of their level of expertise. God has placed me in the hands of 2 very wise men. Very wise albeit very different. DR A and DR H are pretty much polar opposites when it comes to personality. DR A is quiet, soft spoken, and compassionate. DR H is an interesting balance of jaw dropping 'wise guy' humor and confident renegade. But BOTH have a healthy respect for the profound and mysterious workings of the body and a staggering knowledge of medicine...both are incredibly gifted doctors.

i had appointments with both DR H (by phone) and DR A (in office) this week.

DR H has continued my 'cease - treatment order'. NO IV meds - only some orals to keep the LD and babesiosis in check while they try to discern what exactly is going on with me.
at this point, both doctors are more concerned with my abnormal lab results and what these results may or may not mean. currently, my brain lesions are taking a back burner to my lab results. according to DR H these are a much bigger and immediate concern than my brain. (ha ha)

as goes the recent norm around here, my second round of lab tests have come back with 'abnormal' findings.

there is some urgency with the investigation into what these results may or may not mean.
which means i'll be back at the lab tomorrow morning... my third visit in 10 days
(i am racking up frequent visitor points at the lab - too bad they don't have some sort of reward points program)

it has been upsetting to hear what these type of findings 'normally' mean in 'normal' people
however
i am not normal
that is well established
so i am just hoping that this will all turn out to be one of those wierd, unexplainable lyme things

in the mean time i am just trying to take one moment at a time
pray my way through the anxiety and tears
i am scared
BUT
i know that God is in control
He is the one who led me to these 2 incredible doctors
i am in good hands
divine hands and medical hands
yes, i have a good team!
it's God's good team!

and now on a lighter note,
speaking of teams,
today was sport's day at Avery and Parker's school.
and i was able to be there for part of it.

i am so happy about that.

and i am so happy that it was SUNNY and WARM today! i think this was the first year in the history of the 8 years of sports days that i have attended which didn't require either an umbrella or down filled parkas.

and i am so happy that neither Avery nor Parker's team won. phew! i question why they put siblings on opposite teams...that has the potential to seriously upset the sibling rivalry balance of power, you know...and it makes for some challenging and creative parental cheering!
phew! who'd have thought sport's day could be so strategic!


i am not so happy that Parker was disgusted with the day. he was on the 'losing' team for the 4th year in a row. losing is very hard when you are 9! however, the Pittsburg Penguins won the Stanley Cup tonight which completely redeemed the day for Parker.

i am not so happy that i didn't have a camera with me...fortunately my friend Tammy graciously managed to snap some shots of my children...in between capturing 6 of her own kids!
hopefully, she'll send me some of the pics soon...(ahem, yes that is a hint!) ...and then i can post them here....
but until those arrive,

here's some shots from last year:

"i'd run, but i'm frozen solid."

"ah, mom, i think my eyelids are frozen shut"

"oh no, i'm not cold at all!"

and while my young ones put their competitive spirits to the test, my eldest spent the morning 'competing' for a position within the Canadian Armed Forces. Yup. Taylor continues to work towards his goal of joining the military and pursuing a career with the Forces.

Earlier this month, we learned that his application had been accepted and he had passed the pre-selection process. Today, he spent 3 hours undergoing rigorous testing. somehow, despite the warm, balmy weather today, every time i said a little prayer for my eldest baby, a little shiver ran up my spine. A little shiver that is a mixture of pride, excitement, and fear. My baby could be a soldier some day soon.




Above all else, i am so thankful that we are all part of God's team...and can TRUST Him with the game plan!

ABNORMAL IS MY NEW NORM

since my ABNORMAL MRI results came back
abnormal has become my new norm

last week, i spent the better part of a morning in the lab
donating what seemed like half my blood
tube after tube drained from my arm

and now the test results are rolling in

ABNORMAL test results.

which is new.
most lymies look healthy on paper.
i'm used to feeling like death warmed over
yet
having labs and tests
steadily yield 'normal' results.

apparently, things have changed.
abnormal is the new norm

still not sure what any of it means...
probably won't know until all results are back

having more tests done today

i continue to be off of treatment
waiting to hear from DR H whether or when we will re-start.

i had some 'ok' days over the weekend which was a nice change...
given how horribly horrible the last several weeks have been
having a few bearable days actually felt strangely abnormal...but nice.

abnormal is my new norm

abnormal and worrisome
abnormal and anxious
abnormal and scary

abnormal and questioning
abnormal and waiting
abnormal and wondering

abnormal BUT trusting
abnormal BUT fearless (for momentary moments!)


abnormal is my new norm

Isaiah 43:1-2,5

¹ But now, this is what the LORD says—
he who created you,
he who formed you,
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.

² When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze...

⁵ ...Do not be afraid, for I am with you

I WILL WALK BY FAITH

"we walk by faith, not by sight" - 2 cor 5:17

Blindsided. Shell shocked. Disbelief. Numb. Reeling.


MRI results came back today.

i have 2 lesions in my brain.


one in the frontal region

the second in the lateral ventricle

they are small but they are there

in there
in me
in my head


i am screaming a silent scream.

i was not remotely prepared to hear this.

nope.

not in a million years.

i knew it was a possibility but i didn't believe it would really be


what exactly IS a brain lesion? click here for a brief explanation


many questions but not many answers at this point.

couldn't think, couldn't ask, couldn't process


2.5 years ago, i had a 'clean' MRI
now i don't

how? why? now what?



all i can recall,
i will need follow up MRIs to track them

and thru the fog, i heard DR A solemnly say that while it is never good to find these things, these findings do support my lyme diagnosis. so this is good from that perspective.

GOOD?
oh, i know what he meant and it's ok he said that - he was authentically compassionate and solemn and gentle as he broke the news to us
but still
finding any part of this good?
easy for him to say...he's not the one with brain damage


left DR As office with graham in a state of shock

yup.
i am dazed and confused
(and have the scan to prove it!?!)

teetering on the brink of tears but too numb to cry

"this has to end. this has to end. i can't take it anymore."

one brief moment of hysteria
"get it out of my head. no. no. no. i don't understand this. i don't get it...and that has nothing to do with brain damage!"

i sob without tears
heart pounding in throat

search for peace amidst pounding, grieving heart

"oh, that's right. i don't have to get it. i'm not expected to."

i just have to

trust
trust
trust

found a lot of comfort at the praying for lymies site this week

tonight the words of this song were just what i needed to hear


WALK BY FAITH
click here if you'd like to listen to the song

Will I believe you when you say
Your hand will guide my every way
Will I receive the words You say
Every moment of every day

Well I will walk by faith
Even when I cannot see
because this broken road
Prepares Your will for me

Help me to RID my endless fears
You've been so faithful for all my years
With the one breath You make me new
Your grace covers all I do

yeah, yeah , yeah, yeah, ya

well i will walk by faith
even when i cannot see
because this broken road
prepares your will for me

Well I'm broken- but I still see Your face
Well You've spoken- pouring Your words of grace

Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me
(Repeat)
Well I will walk by faith
Even when I cannot see
Well because this broken road
Prepares Your will for me

Hallelujah, hallelujah


I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith
I will walk by faith, I will walk by faith,
I will walk by faith


"now, FAITH is the reality of what is hoped for, the proof of what is not seen" -Heb 11:1

PRAYING THRU THE ABYSS

"Thank you that i am part of a vast army of people who live in full faced touch with your son and move your mighty hand to bring about your gracious purposes. thank you that our influence and our victories are not by human might or power but by your spirit."
(31 Days of Praise - Ruth Myers)

i am grateful for the prayers of so many.

they were definately felt on tuesday when i went for my mri. it was a long and difficult day but i also recongnize that it could have been a lot worse.

i've had several folks touch base wiwth me this week to let me know that they have committed to praying for our family everyday. i cannot even begin to express how encouraging i have found this. i am amazed to still have people willing to stand with us through this nightmare.

this has been a tough week. REALLY, REALLY HARD. at times, this journey is so beyond difficult. and overwhelming. and painful. and lonely.
incredibly lonely.

so it is good to know there are people earnestly praying.

it is comforting to hear that.

in the last 36 hours there has been some improvement with my mobility issues and air hunger, but other issues are arising...and they have caused great concern

it is quite apparent that my body is just not holding up under this recent attack -

bottom line, my body is screaming in distress - whether this is due to the disease or the treatment or a combo of both is not known...

but today the decision was made to cease my treatment

my condition will be re-assessed in a week

how do i feel about this?

to be honest, i am struggling with it.

i'm conflicted yet at peace?

if that makes sense...

albeit i don't know that much of anything ever makes sense with this disease.

lyme is an excruciatingly cavernous abyss of unknowns...

it is only thru the power of prayer and praise that i am able to keep trusting god and find refuge in this abyss

Have mercy on me, O God, have mercy on me,
for in you my soul takes refuge.
I will take refuge in the shadow of your wings
until the disaster has passed.

I cry out to God Most High,
to God, who fulfills {his purpose} for me.

He sends from heaven and saves me,
rebuking those who hotly pursue me;

God sends his love and his faithfulness.

I am in the midst of lions;
I lie among ravenous beasts—
men whose teeth are spears and arrows,
whose tongues are sharp swords.

Be exalted, O God, above the heavens;
let your glory be over all the earth.

They spread a net for my feet—
I was bowed down in distress.
They dug a pit in my path—
but they have fallen into it themselves.

My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.

Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.

I will praise you, O Lord, among the nations;
I will sing of you among the peoples.

For great is your love, reaching to the heavens;
your faithfulness reaches to the skies.

Be exalted, O God, above the heavens;
let your glory be over all the earth.

-Psalm 57

MRI AND ESCORTATION

I am going for my MRI tomorrow

please pray for this

obviously, i have some anxiety over what this could reveal...

but
at this point
i am more concerned about just making it to the appointment and enduring the MRI

i cannot move around without incredible pain
walking is agonizing and fatiguing
being upright leaves me breathless, sweaty, shaking, twitching
and makes my heart race uncontrollably
if i push myself hard, i can tolerate sitting up for about an hour MAX

the only thing i have been out of bed, off the couch or out of the house for in the past 10 days is my detox and doctor appointments
all of which have required ESCORTATION

OK
i doubt escortation is actually a word
but sometimes my brain malfunctions and i say wierd things or can't find the right word in my head
so apprently the other day i said "escortation" when i meant "escort"
after graham figured it out, he thought that that was very funny
ha ha. not.
but stress can make you a little hysterical.

anyway
after "correctly" using "escort" in a public setting...as in saying...

"i need an escort";
"i'm going out with an escort";
"i am waiting for my escort to pick me up."
"your pillow is in the car. your seat is reclined. your escort is ready for you."

that sounds far more scandolous and embarassing to me than using a word that is non existent in the english language....

voila, escortation is born.

and well, i have to find a way to laugh about this otherwise i'd just cry

i hate this
i cannot drive
i cannot walk without help and support
i hate feeling helpless
but
the reality is that we NEED help
i need help
heavens, i need an entire "escortation team"

i've had to rely on my mom, my M-I-L, my friend
and of course Graham
when 'heavy lifting' is in order
(me being the 'lifted' -but, EXCUSE ME i'm blaming the heavy part on my lymph fluid)

my escortation team is such a blessing
everyone is very gracious
but i know that they are overwhelmed by the need
and stressed out and tired out

and with no relief in sight, we could all use a whole lotta prayer




PS
thx to those of you who have sent messages of encouragement in response to my last post, your encouragemnt and support mean more to me and lift me up more than i can adequately express.
xoxo
s.

WHERE IT'S AT

WHAt you see is what you get!
***this is me in my unedited, upspelled checked lyme glory - past 2 weeks my neuro symptoms have gone haywier - i'm too tired to correct and make pretty - this post has taken me a week to rite as it is!! hopefully its legible enough for fokls to get***

WHERE IT'S AT?

Where it's at is well hard to say...
i guess, where it's at is all over the map

locationally, i'm back home - thankfully, i had freedom from my most troubling symptoms and ironically was the 'wellest' i had been for the entire trip on our flight home...thx to those of you who prayed for this, given what i dealt with while in SF i am so grateful i had some relief for our flight

unfortunately, this relief proved to be a temporary reprieve
like
the lull before the storm
or maybe more like
being in the eye of the hurricane

we arrived home LAST friday nite, and ihave ben more or less bedridden since then

so
where it's at is...
i'm back in bed or couch FULL TIME
whther herx or relapse, no one can really say
there is speculation that it is a relapse
however
i'm just referring to it as a "set back"
sounds less ominous

where it's at...
physically:
well, to be blunt, all hell has broken loose
here's the "short list" of my symptoms:

lyme encephalitis
severe sore/stiff neck
fevers
perpherial neuropathy (numbness, burning, tingling in arms and legs)
tachycardia and arrythmias
Shortness of Breath
full body internal vibration
visible neck and hand tremors
chest pain and pressure
joint pain-feels like there is gravol in my joints
unrelenting headache
kidney pain
blood in urine
rectal bleeding
visual impairemnts and hallucinations
noise sensiitivities
sleep disturbance, insomnia
mobility issues
difficulty tolerating an upright position for more than 45 minutes
etc...
etc...


where its at...
mentally
hmmm...that's a tough one right now
based on the results of DR H's assesments, my neurological and cns (central nervous system) is severly impaired
these abnormal findings of his tests are indicative of lesions forming in my brain and/or spine

i will be undergoing an MRI in order to assess whether or not this is the case

i would like to believe that this disease has not done permanent damage
i had a discussin abou thtis with my cnadaian dr and he believes that it is not permanent whish was reassuring to hear
but, nvertheless
i wold appreciate prayer as some anxiety over this still remains


where its at...
is not where i want to be!
the reality is that this really sucks
its excruiciating place to be
and it is terribly hard formy famiily

these times take us from survival mode and throw su into crisis mode
crisis on overdrive
how long will this last this time?
impossible to know, impossibel to predict
much scrambling needed to do to make life keep moving forward

graham is run off his feet
how do we get the kids to shcool
and get me to necessary medical appointments
who do we clall to help

we are forced to lean evne ;harder on our already exhauted ffmaily and friends for help
and that is hard
asking for help is HARD
i hate being a burden

you'd think after all this time i would be better equipped to deal with this
and yet i am not
each time anixiety levels rise
there is som much unknown, un-answerable
much emotions surging to the fore front
understanably
everything and everyone is left feeling discombobulated during these times
tempers flare and overall coping mechanisms fly out the window
and i am the worst offender

HOWEVER,
aside from that

i feel pretty good
lol

all joking aside

where its at...
is not what its about!
thankfully god is bigger than all of this

AND
for the most part,
emotionally i am well
flood gates haven't opened up on me
and i am not depressed
god is sustaining me
through his word and through song

and for that i am incredibly grateful


yup
where its at...
is not where i would choose to be
but god is here with me!

i had some super deep moments of discouragment while we were in sf
cried out for god to giveme something to pick up my spirits
it tooka couple days kept coming up empty in my devotions
but finally break through came during our drive up the coast line....

"how great thou art" and "it is well with my soul"
(click on songs if you'd like to listne)

yes, breakthru in the form of these 2 timeless songs,
their lyrics and melody co-mingling, intertwining and melded together in my lyme twisted brain as i veiwed his great world from the car winjdow:

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

It is well, with my soul,
It is well, it is well, with my soul

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;.

The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul

this disease robs me of my mind and body
and at times,
it crushes my spirit
however it
will not,
has not,
CANNOT ever rob me of my soul,


where its at is....
it is well with my soul

"it is in the quiet crucible of your personal, private sufferings, that your noblest dreams are born and God's greatest gifts are given in compensation for what you've been thru" (-wintley phipps)

Sleepless in Pain in San Fran

Yesterday we spent on the coast near Half Moon Bay. Very pretty area, great pizza at a joint called "It's Italia".

Not a good day otherwise. Shannon is feeling like crap again, and it's dreadful. She's in a ton of pain. No sleep either.

We both anticipated that this visit to San Francisco would be more enjoyable with her recent upswing of energy. However, something has returned with a vengeance.

What exactly might that be? Who really knows... maybe that we ran out of Alinia - that has been back-ordered, and will be at least another week.

Then again, it might not be just that. She's dreading the flight back home this evening. And the days that follow...

Frustrating, and waiting for this pain to go away. Pray for, and keep praying for her.

- Graham

THOSE DARN BUGS

Spent a LONG afternoon at DR Hs today.

He's pleased with my progress however it is VERY S-L-O-W...and this he is frustrated with. i'm with him on that.

he feels my progress is so very slow b/c my body is very poor at eliminating the endotoxins that are produced from the bugs dying.

basically the bugs, both the LIVE ones and the DEAD ones are a major problem for me. how ironic. those darn bugs, eh?

my babesia infection continues to be of greatest concern...and along with the toxic effects of the babesia dying off is causing my shortness of breath, vision problems, arthritis, myalgias and headaches and neurological deficits.

upon exam my nervous/nruological systems are of major concern with DR H stating several tmes "this is bad. very bad."

but i shall remember that overall i have been doing so much better.
jsut so happens that right now i am not so hot.
pretty bad
i have steadily declined since we got here on monday
i haven't been this bad in at least several weeks...severe nite sweats and pain so bad i'm not getting more than 4 hours of sleep....
so DR H is not seeing me at my best, right...yup....

i left my apointment with him with a total of 5 NEW prescriptions....mostly to drugs to fight the babesia

of the 5, i will be seeing a return of mepron to my treatment protocol.
and i cringe at facing this drug again (even DR H cringed onmy behalf and apologized)
mepron produces death defying herxes

so there's more but i'm just too tired and too sore
and i supose somewhat discouraged

not so much from the appointment, i don'thtinkg, more to do with just feeling so terribly rotten...i had pretty big expectations for this trip....was really hoping that this time would feel like a 'vacation' and we'd be able to do a few 'touristy' things....can u believe i couldn't even handle being in Target??? I mean seriously, target, I love target and i didn't WANT to be in Target!

but yuo know, tomorrow is another day...we are planning on takng a little drive up the coast to have a visit with Marie. i'm really looking forward to seeing her and the beautiful california coastline.

IN SF

Hi
we're here
and
im vary tired

post more later
see DR H on WEd @ 1pm

thx for yor pryers for JEN - she's doeing well

xoxo

IN HIS TIME

one of my greatest struggles in my journey with lyme, as i have waited for healing, is trusting God with His timing.
i know that his timing is perfect...
from my perspective, it has been and is an agonizingly long wait
filled with grief, desperation, disparity
despair and hope so intricately intwined

i first wrote about this challenge in Dec 2007

as this journey goes, those emotions are still with me today. some days more than others.

today is one of those days

Jen and I

at 8am this morning, my dear friend Jen will be wheeled into surgery, to undergo a 5-7 hour operation to remove her cancerous kidney tumor
and me
well, i'll be on my way to the airport to catch my flight to SF to see DR H.

from my perspective that is BAD timing

despite the fact that Jen totally understands and actually told me it made her happy to know that i will be working on my recovery, i was devastated to learn that i will be gone, far away from her as she faces one of the biggest, scariest times in her life.

away away away
why why why
i have cried and questioned
it has truly broken my heart

i don't know why
but i do know that God knows
i don't understand why
but i know that God does

and i know i have to trust him, seek him, praise him
and
relinquish my futile attempts to control the timetable

"i praise you in advance for the part these difficult and painful things are going to play in your good plan for us - in eventual deliverance and growth and fruitfulness. i'm grateful that in all these things, the battle is not mine but yours....and the final chapter has not yet been written. Thank you that these trials force me to trust you more!

you are a God who acts on behalf of the one who puts his hope in you. thank you that you are at work to answer my prayers in your good way and time. thank you for the past victories you have won in my loved ones' lives and for the victories we will yet see in the future.

i praise you that as time goes by, in new ways you will show us your goodness in the land of the living."

(quoted from "31 Days of Praise" by Ruth Myers)


i am so grateful that He graced me with supernatural strength
so that i could spend a special evening with Jen and some of our dearest and OLDEST (tee hee) friends



a time of laughter, prayer and tears

Jen, although a Canadian, may very well be Barack Obama's greatest supporter. and so it was only natural that we give her an 'obama' inspired anti-cancer party

And so "The OBAMA Campaign" was born:

Oh God
Beat
All
McCain-cer
Amen

"the campaign box"

"contents of the campaign box"

FYI: Orange is not Obama's favorite color (at least not to my knowledge)
but it is the Kidney Cancer Awareness color

BEAT CANCER?

YES, WE CAN!

YES, YOU WILL!

please, please keep Jen and her family in your prayers


You can get updates on Jen by Clicking Here

MY MOM IS MY HERO

my mom is not just my mom, she is truly my best friend.
my rock. my strength. my cheerleader. my shoulder to wail on.
my mom is my hero.



she has modeled to me a remarkable faith; an unshakable belief in the sovereignty of God and and an unwavering belief in the Promises He gives us.

recently i came across a link to a website called "Shades of Grace" It is the story of a young woman named Natalie who is battling lyme. Her story is both heart wrenching and inspiring.

http://shadesofgrace.org/video/other/other1.wmv

i've spent the last 2 weeks perusing her sight and listening to the audio segments of her story. last weekend, i listened to Natalie's mom, Sandra, share how she survived her daughter's journey.

The Challenge to Sandra's Faith in God's Promises
How did you survive it as a Mother?

it wasn't until i listened to Sandra share, that it hit me just how painful this journey has been for MY mom. i don't think i have ever truly understood what my illness has cost her...sure i've been aware and have recognized (and appreciated) all that she does and all the sacrifices that she has made on my behalf. but i have been too wrapped up in my own suffering to fully appreciate that she has suffered right along with me.

what has it cost her to make the sacrifices she has made
to come week after week to help care for me and my family
what has it cost her to carry the burdens she has endured on my behalf
the hours she has spent doing laundry, cleaning house, making meals
or the times she has needed to mother my children rather than 'grandparent'
or has whipped me around the mall in a wheelchair so i could do my Christmas shopping
(okay that was actually a fun day)

what must it have cost her when she spent HOURS listening to me endlessly wail into the phone
marathon phone calls where ALL i did was weep into the phone
so weak that the phone was propped up beside me on my tear drenched pillow

what has it cost her to put up with me when i am miserable, grouchy and mad at the world
and yet when i have been at my ugliest
a puffy, snotty, drooling, gasping, shell of my former self
she has told me i am beautiful, strong, courageous and loved
what has it cost her to 'lose' her daughter over and over
i cannot imagine what agony this placed in her heart

what has it cost her to hear me beg God to let me die
what must it have cost her to have me beg her to pray for it to end
when my depth of despair has been so profound and the pain so agonizing
and the journey has felt so frightfully hopeless
what has it cost her to not be able to kiss it all better

when there is no end in sight, no cure to be found
when there have been no answers only endless questioning
when all hope has been dashed and i have been broken
she has been the one to remind me that there is hope
my hope, our hope is in God and His Promises
she has been the one to remind me that he promised to heal me
that he is faithful and He WILL fulfill his promise

and when she tells me that God will make good on that which he has promised it has meaning. it has fortitude. it has power. it has strength. it has credibility.
it is believable because she has lived it, she has modeled what it means to cling to God's promises throughout my life. God's promises to her have gotten her through incredibly desolate and painful times. promises that seemed impossible and unbelievable but through persistence in prayer and faith, she has persevered long enough to experience the fulfillment of those promises.

God is faithful to keep His promises.

and so,
i know,
and
i believe
that the day will come when my lyme will be dead and buried - and i will be healed.

Mom, thank you for the countless times you have reminded me that that day WILL come. Thank you for silently suffering alongside of me on this journey of life and lyme.

mom, did i ever tell you you're my hero?
you're everything i would like to be
you are the wind beneath my wings



i can only pray that i would be able to mother my children with the same grace, courage, strength, wisdom, persistence in faith and perseverance in prayer that you have modelled to me.

i love you.

please listen to the song in my heart:

WIND BENEATH MY WINGS

I HATE PANTYHOSE!

It's my baby cuz' s wedding today
and i am well enough to go!

and rather than just basking in the joy of being able, i am preoccupied with a serious dilemma.

to hose or not to hose
that is the million dollar question

i HATE pantyhose with all my heart
however
the RESULTS that putting on a pair of pantyhose can deliver are none to one

it is truly a miracle the degree of constriction and compression that can be attained by their torturous silky sheerness.

but even still,
i HATE pantyhose
glorified body armor is what they are
oh the things that us women endure for the sake of 'beauty'
psshhtt!

i'd like to think after everything that i have been through in the past 3 years that by now i'd be a little more evolved than to worry about such frivolous and superficial things as sucking in and smoothing out or lifting and seperating my cheeks from my thighs...

and in all seriousness that thought actually gave way to a moment of self reprisal
until it dawned on me...

the fact that i actually care about how i look
is actually another sign that i am getting better
and
the fact that i would even remotely consider or entertain the thought of giving up comfort for the sake of looking good?
wow, after spending most of the past 3 years in oversize t-shirts and baggy track pants, the panty hose dilemma is actually a healthy sign!

but i'm not quite there....
anything too tight or constrictive just isn't tolerable or doable....yet

and so
in a fit of deranged rebellion, i have cut up all my control top pantyhose, and in an act of womanly defiance and divine inspiration, i turned those fishnets into a blinged out PICC Line cover


and now excuse me if you will, i'm about to shove my swollen bare toes into a pair of killer heels and march myself and my uncontrolled jiggly bits to my baby cuz's wedding...

and i will laugh and love and live
why?
because i am ABLE...

and i am so very excited to get to spend an evening with the incredible extended family that i simply adore

and you know what?

i know they love me, too....jiggly bits and all


PS

EMILY - you were simply stunning...and seeing that i was hose-less i can honestly say that it was YOU who took my breathe away!

Congratulations and much love to you and Rob!

xoxo