HAIR, HAIR, EVERYWHERE!

i asked graham what he thought were some of the most pertinent symptoms i should discuss with DR H during my phone appointment last week.



"YOUR HAIRBALLS!!" came his immediate response
all 3 kids unanimously and loudly echoed his request.

oh, really, the hair loss is that bad,eh?
yeah. it is.
it is true. i am a hairball machine.
i am routinely 'producing' 6-8 hairballs a day.
my hair is EVERYWHERE... but on my head.

it is really gross and it is freaking me out
and

grossing out my family!

(and i suppose, grossing out all of you now)

i have had problems with hair loss ever since getting sick. i can't remember why, but for some reason, i have always attributed my hair loss to my babesia infection. it has been a pain to deal with but i have never discussed it with DR H. considering the plethora of symptoms i experience, my hair loss has fallen to the bottom of the list of pertinent concerns. somehow when one is experiencing difficulty with seeing, breathing or mobility, the fear of going bald doesn't register as that overly crucial.

i've just learned to live with it and have dealt with it - by giving myself more and more bangs. and taking comfort in the knowledge that, according to past hairdressers, i have enough hair for 10 people. however, in the past 3 months, it has gotten significantly worse. handfuls of hair fall out everyday, all day long. my hair for 10 people has lived 9 lives and can be found in the form of hairballs that frolick across our floor like tumbleweeds blowing through the desert. i fear i may end up with one big fringe, if i cut any more bangs to hide my bald spots.

so yes. i put hairballs at the top of my list of things to discuss with DR H.

he did not attribute it to my babesia infection.
he actually said that he suspected that i am iodine deficient.
wow.
the simplest way to test for iodine deficiency is by swabbing iodine on a small area on the arm. remember good old fashioned iodine? that nasty smelling disinfectant that stains the skin orange? if the orange stain fades in under 8 hours, you are iodine deficient.

i swabbed.

within 20 minutes the stain was already fading

it was completely gone in under 90 minutes.

guess, i'm just a tad deficient.
the solution?
MORE PILLS.
of course.

SPARKY'S NEW WHEELS

Parker got a set of wheels today.



we certainly never would have expected parker to get a set of wheels before taylor did. funny the curve ball life throws at us sometimes...

we were able to get the wheelchair through the red cross at no cost. phew! are we ever grateful for that. his chair is a pretty sweet ride and he's already pretty adept at maneuvering himself around. it is giving him some level independence back - not too mention it will give his poor knees a break. for the most part, he has primarily relied on crawling to get around over the past 8 weeks...and he has the battle scars to prove it.


we're hoping his wheels will help get him to school on a more regular basis. he is not able to do a full day of school because his level of fatigue and high pain levels. he has missed most of the past 3 months. for the most part, i am home schooling him. ha ha. me teaching grade 5 with a brain that lyme has hit the "off" switch on? i'm just grateful the math text book includes the answers. it is certainly a struggle and challenge. some days i am very overwhelmed with it but we're slogging through it the best we can. it helps that parker's teacher is so calm and understanding. back in october, i blogged about my own grade 5 year and how i spent more time in the principal's office than in the classroom. i'm assuming i must have missed some crucial piece of my education...maybe that is why God has me 'repeating' grade 5 this year.

parker's classmates each made him a get well card...

the goal right now, is to get parker to school for the afternoons as much as possible. he feels a little bit self conscious about being in the chair however that mostly stems from an inability to tell his friends what is wrong or why he is sick. we're working at giving him words to explain this - and praying that we will have some answers after we see DR H. it is difficult for him but it helps that his classmates are genuinely excited to see him and he is enthusiastically greeted whenever he gets to school. his teacher's have played a huge role in making sure that his classmates take his mystery illness in stride. they have been incredibly insightful and shown a remarkable sensitivity to his needs. we could not have picked better teachers for both avery or parker this year. they are in the classes that God intended them to have - with teachers who have been an amazing source of support and encouragement to our entire family.

pink is his favorite color - so sweet that his friends remembered that.

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