December 9, 2010

Don't be Sorry

I guess you can tell from the first letter of this sentence that it's not Shannon writing. There's capital letters and full punctuation! Hope you can read it!

Sitting here with Shannon. It's Tuesday evening and we're up in our room dripping IV fluids into Shannon. She's crying quietly and I'm trying to figure out what to think, what to say, what to do, how to fix this. There HAS to be a strategy, a plan, a list of things to do to make this better. Someone HAS to come along and say, "here's just what you should do!" That list, that plan, that someone, the rescue never comes. And the void of that sits in my head and screams at me.

When it seems like it's getting better, in many ways it gets worse. It's worse again. Shannon's seizures started at the end of October, and not a lot has improved - maybe 3 or 4 days that she could be up or even out the house. She's been throwing up for nearly a month now, lost about 10 lbs. Seizures are more controlled (by drugs) since they first began but have ramped up again over the past 10 days. Mostly confined to bed, lots of pain. Lots of waiting and frustration. Endless phone calls back and forth to doctors, chasing down prescriptions and waiting for pharmacies to prepare meds that you wonder if they'll actually even help.

Hey, life still goes on even when sickness dictates we don't or can't. Parker's birthday is this month. We had the extended family over to celebrate. Had to celebrate it up in the master chambers (our bedroom). It seemed that not everyone was comfortable with that, but that's where Mom was, and Parker wanted to open his birthday presents. Who would want to miss out on their kids' birthday?

So, is now worse than before? Who knows. I certainly don't know anymore. I don't know if anyone knows. Even her expert doctors.

It seems like an eternity ago "this" all started. "This" is ruining everything. Nothing could have prepared me for "this". I've been at home for the past 4 weeks. My work has been amazing at giving me this time off  to look after my family. But really! What can I do? Run IVs, dispense drugs, drive to appointments, cook dinner etc. All the stuff normal people do except the "look after the sick in the house as the main job". This all consuming sickness that doesn't go away - or so it seems.

Parker has rallied quite nicely over the past 10 days and the Pain Management Team at Children's Hospital is singing full stanzas of "Welcome to Wellness!"  He has made great progress overall and he IS on the road to recovery - but he still faces a marathon of a fight. The ever-smiling folks at Children's Hospital don't have clue what this disease does. Or how it operates. Not a clue. And they've made it clear they really have no interest in learning about it. They have their own "agenda". We've just learned to work with what is applicable- pain management strategies - and politely smile at the BS. We're so sick and tired of trying to explain it to them or to anyone for that matter who really can't be bothered to understand this disease. Parker is not better. He still deals with significant pain every day but he this week he has been able to "do stuff" again. We are glad about that. We haven't wanted to burst his bubble but we did have a frank discussion with him about what happens when he does have a lousy spell again - most likely it will happen. Parker is realistic and optimistic. So are we. He can't wait for basketball to start at school. He's training now.

Taylor has managed to land himself a job at Future Shop. This is a place that I approve of because of my need for electronics. He continues to push through his treatment in own quiet way. That's the way he is. I don't think most of his friends have a clue what he endures on a daily basis. Because of this disease, he's not doing what he would have wanted to do. He has to wait. There's not really a lot of choice at this point.

Shannon is realistic, but not feeling optimistic at this point - again. I don't blame her. She tells me she's sorry. Sorry for what? Who do you blame for this except God? And we're told we ought not to blame God for anything because He knows what He's doing. I get that part, but enough is enough. Enough suffering already.

Have you ever gone to an amusement park? Sure - with your friends. Folks usually don't go alone. It's a lot more fun to go on a roller coaster with friends - so you can scream your collective heads off, to laugh and hang on to each other. TOGETHER, EACH OTHER.

This whole sickness fiasco is like being strapped to a roller coaster that doesn't end. It stopped being fun a long time ago (was it ever fun?), and somehow all your friends have fallen off and they're now doing something different. Some of them have long forgotten you're even there. Some look up once in awhile and offer something, but it's a gesture from far away.

I'm saying that a bit tongue-in-cheek, because in some ways there's some real saints who have tied up their ships alongside of ours during this storm. Really amazing actually. Tying two ships together in calm waters is safe, but throw in some swells, and it gets a bit nasty. In many ways, we're experiencing loss. We've felt like we've lost so much. Because of sickness, we've lost so much of what we thought we could offer to our children, to others, to each other. Because of sickness there's quiet zones in our house. There's closed doors. There's other people picking the kids up from school  instead of Mom or Dad, because they've had to go to another appointment, or because they had to go to the hospital again. There's making arrangements for other families to have our children stay with them because a sleepover at our place isn't really all that realistic. Try explaining that to Avery again and again. But people have been stellar! We're constantly amazed and overwhelmed at the generosity, caring, and stamina of those who are committed to seeing us through this plight.

But I'm tired of this plight. And maybe it's just that right now, it's hard to see clearly. The loss, the ongoing loss, looms larger than anything. There's not a great deal of perspective that I can conjure up right now. Nor can Shannon. I guess I understand when Shannon says sorry. I'm sorry too.

Graham

November 16, 2010

BARNEY, THE BIG PURPLE...

there is a beast in my garage.
a great, big, shiny purple beast
and
his name is barney
barney is our 'new to us', beautiful, purple minivan 





barney arrived today
PRAISE THE LORD for His provision
and
THANK YOU to the pennington's bible study group;
a couple from their group donated barney to us
and 
the rest of the folks chipped in to get barney road ready for us

what a gift!
wow
really
wow

and yes, we really named him barney
after all, naming inanimate objects comes naturally to us
why barney?
do you really have to ask?
there is only one thing in the world that is big, purple and brimming with love
it's almost a no brainer 
have you figured it out yet?


we named him after barney the dinosaur. surely you know him. you know, that great big purple dinosaur who gushes with love and is famous for singing this song:






i love you
you love me
we're a happy family
with a great big hug
and
a kiss from me to you
won't you say you love me too.


see what i mean?
our barney, is just the same
he's a great big, huge, purple hug of love
what an amazing gift 

of course,
the family of squirrels that had taken up residence in barney
are probably not feeling the love
yup
apparently barney had been sitting dormant for awhile
possibly quite a long while...
long enough for a family of squirrels to build a nice, warm, cozy home under his hood
and
due to the high volume of nuts we found in it,
we think they probably had hoarding issues
serious hoarding issues 

(of course, that's just speculation)

when i heard about the nest
and
the nuts
i felt kinda bad 
poor little guys 
after all, we've ruined their home
and
pilfered their food supply

we pretty much kicked them to the curb
our gift is their demise
makes one pause a moment - 
it's humbling to consider
it really, really is
barney's a gift of both love and sacrifice
and we are thankful and grateful and amazed


and the squirrels?
well,

i'm not feeling so bad about them anymore
nope. no way

not since taylor noticed what was scratched into the front hood of barney:




yes
really
no lie
it spells fart

we think the squirrels did it.
(of course, that's only speculation)




November 15, 2010

CURRENT STATE OF AFFAIRS


dare i even venture to post an update - knowing that it is more than possible that anything current could be out of date by the time i finish this post and hit the publish button?

suffice it to say, i will dare.

first let me get this off my chest
i hate this disease
hate it
absolutely loathe it

moving on

PARKER'S CURRENT STATE:

the craziness side of his symptoms aka the delirium has settled down. i say that with breath held fearing that at any moment he could disappear on us again. for the time being, he is only having sporadic and mild episodes. we are very thankful for that.

i am also pleased to report that the bleeding issues we've been having with raymond (his PICC line)  have slowed down to a trickle. we are grateful for that and hoping that all the bleeding will resolve quickly.




on the physical side of things there has been no improvement. his joint pain is still really bad. he is back to having to rely on crawling to get around the house. i am also concerned that his babesia infection (his primary infection) is becoming active again. a large part of his treatment is targeted at the babesia infection. he has now been off both his IV abx (which is for the lyme) and his oral abx (which is for babs/lyme) since last monday (nov 8). within 2 days of being off of them, some of his previously resolved babesia symptoms came back. these are shortness of breath, heat intolerance, body temp dis-regulation and tremors.


currently, we are continuing the intensive detox protocol that DR H put him on. i know some folks are interested to hear what is being done to detox him. so here it is:

500mls of IV fluids a day
IV phosphotydal choline 
cholestyramine 3doses/day 
alka seltzer gold 8tabs/day
benadryl 4 tabs/day
magnesium 3000mg/day

homeopathic tinctures:
mundipur, burbur detox, coro-calm, renelix, viscum


epsom salt baths 


TAYLOR'S CURRENT STATE:


taylor is like the silent partner in our lyme picture. he's sick but not in "crisis mode" sick. he's sick but not psychotically bouncing off the rafters like me. he's sick but not wheelchair bound like parker. he's sick, but as is the curse of most lyme patients, he looks healthy.

he's had some improvement since starting aggressive treatment this past summer. he spent most of the summer couch bound and rarely left the house.
since september, he has been able to get out with friends, he attended and completed his first course thru our church's Bible school, and he was (sometimes) been able to get to his military training one evening a week. but aside from a day or two a week, he still spends a large portion of his time at home. not that i am complaining about that. it's nice to have him hanging around. and his girlfriend mara is a frequent guest. i love that. i love that we get to hang out so much. we all love him and her dearly. but a large part of me grieves over this - because even tho' he's feeling a little bit better his, his life resembles anything but that of a healthy young man.

i am concerned that we have hit a bit of a plateau in taylor's recovery. while he is improved since the summer he has not had any discernible herx since august. if he is not herxing, he is not killing bugs. 10 days ago, he started a cyst buster. the job of this abx is to target the bacteria that is hiding. he's been feeling a little 'off' since starting it and has had an increase in his pain, fatigue and cognitive function. this week, DR H added in another new med. hopefully, he will be able to get started on this one sometime this week. then we'll sit back and brace for impact.


we're hoping that when it hits, his herxing won't include any sort of psychiatric component. he's far too big and too strong to restrain. nuttiness aside, i worry about my son. a lot. i know he doesn't think so but i do. i know he'll get through this but i know he suffers in silence. most of the time. part of that is because i know he doesn't want to add to our stress. part of that is because that is his MO. he tells EVERYONE that he is fine. even me. 

and he is not fine. 
he is sick. 
most days, he struggles with intense pain, fatigue, insomnia, headaches, and diminished cognitive function.
he is hurting.
his friends are moving forward while his life, his dreams, his plans have been sidelined indefinitely.

he's beginning to feel hopeless as the timeline for getting better keeps getting pushed forward.
he's frustrated 
with having to somehow make his life fit within the confines and constraints of lyme
he's struggling
to find some type of work that fits his unpredictable world


from where he stands, pretty much everything in his life is moving backwards or not moving at all
and his self esteem is taking a beating
magnified by being at an age where the predominant struggle and feeling is that no one understands you
then
couple that with a having a disease that (nearly) no one understands
and
well, that's an awful and lonely place for someone to be
he's bearing an awfully heavy burden
and
he suffers in silence


when he is out, people ask him how i am or how his brother is. it is a rare occasion when HE is asked how HE is doing. do me a favor? if you are someone who is in contact with him, the next time you see him or talk to him, ask HIM how HE is doing.
and when he tells you "he's fine"
ask him again
REALLY ask him
let him know that "i'm fine" isn't enough of an answer for you



i have no doubt that one day he will be fine. i know that he can get through this. i know that he will.
but he could really use some support and encouragement along the way.



SHANNON'S CURRENT STATE:


as aforementioned, i HATE lyme disease.
that is my current state of mind.
however, that is probably an improvement over my state of mind a couple of weeks ago.
at least i'm not completely bonkers anymore.


apart from crazy side of things, i'm feeling really wretched. i've spent the past 4 days flat on my back in bed. which has been beneficial for my blog but not for me or my family. psshhttt! i don't even know what to say anymore. or think. it's just hard to be so brutally sick again. part of me is surprised. part of me isn't.



i really haven't had a chance to recover since my limbic seizures started the end of october. i was barely out of my own craziness before parker's week long run of delirium started. in order to deal with that, i was running on sheer adrenaline. certainly, this barfing business isn't helping or conducive to my recovery. last week, i only had one barf free day.  so, in addition to a flaring of my physical symptoms, i am wasted from all the barfing. but i've only lost a couple of pounds so i must be keeping something down. it is a very weird feeling to have to make one's food choices based on how it will taste coming up. sick.

currently, i am off my IV meds and only on oral abx - and then just ones that deal directly with the bartonella infection. however, given my barfing state, i'm not always keeping down those meds. the IV alternative to the orals is not available in canada. DR H is giving things a few days to settle but if i'm still barfing so much, than we'll have to go across the border to get these new IV meds. we haven't even checked out the cost yet. but based on the cost of some of the other IV meds i've been on, we're figuring the cost will be somewhere in and about the "i'm going to have a heart attack" range.

so the count down is on. in the meantime, i'm flat on my back - for reasons i can't really figure out. who ever really knows why? it's not just from the barfing. sure that has weakened me but i've also got intense nerve pain that radiates from head to toe, headaches, shortness of breath, muscle fatigue, dizziness, wonky eyesight and joint pain. is it a herx? am i keeping enough meds down to even herx? is it a flare? i simply don't know.


did i mention i hate lyme?

GRAHAM'S CURRENT STATE:


uh, yeah.
frazzled, fried, exhausted, angry, sad, burnt out, numb, exhausted, tired, hurting, lonely, exhausted, fed up, stressed out, run down...


i needn't go on, i'm sure you get the picture...


i do what i can, when i can but for the most part, all of this crap is pretty much solely his burden to carry. and now he's got a dog to 'pick up' after. he'd never publicly admit or cop to it but we've all overhead him calling harrison his baby boy.



even if i was the epitome of health, it would not have been possible to care for parker alone over the past week and a half. he needed nearly round the clock monitoring - our only break being the 6 hrs the meds would knock him out for at night. we are beyond grateful that graham's work has given him some time off. his supervisor has been unbelievably supportive and compassionate. we are incredibly thankful and appreciative. graham's work is in incredibly important to him. he works with kids. youth. and he loves them. in his perspective, being off work is tantamount to abandoning them. it is difficult for him to stay away. lyme has required so much sacrifice of himself and it has taken away so much - his interests, his friendships, his down time, his plans - and for now, hopefully just for a very temporary, short time, his job. we are incredibly grateful for the time off but it sucks that this is what needed to happen.


AVERY'S CURRENT STATE:

avery is struggling. 


she has seen a lot of craziness over the last couple of weeks. it is starting to take it's toll on her. she has become very quiet. and that breaks my heart. she has always exuded a special joy and that little light has dimmed as of late. 



HARRISON'S CURRENT STATE:


he has gas.
really bad gas



but
so long as we're wearing nose plugs, he really has been and is the hugest, biggest, fluffiest albeit stinkiest source of comfort...

November 13, 2010

SURVEY SAYS...

"Our lives begin to end 
the day we become silent about things that matter."  
                                                -Martin Luther King, Jr.

several weeks ago (week of oct 19) there was a media blitz about lyme here in BC. information came to light that proved the BC Center for Disease Control (BCCDC) has been suppressing the actual number cases of lyme disease in our province. the information stems from a survey that the BCCDC conducted in 2007. it was a survey about lyme disease. the results?  BC physicians had diagnosed 221 cases of LD in 2007. publicly, the BCCDC reported that there had only been 13 cases that year.

explosive information.
the survey also showed that only 60% of BC physicians even knew that LD was a reportable disease.
again. explosive information.

we've known that the BCCDC was suppressing this information. members of canlyme have been fighting to bring it out in the "lyme light" for a long time. the BCCDC claims that these results were made public and were readily available. yet, they denied the multiple public requests for the results. in fact, they didn't release them until the request was made under the Freedom of Information Act (FOI). and even then, it took them 9 months before they finally coughed it up.

when the story broke in the media in october, we were hopeful that it would force the BCCDC to acknowledge their wrong doing. or so the irrepressible optimist in me thought. the one that believes and hopes that folks will own up to wrongdoing. how can they not? with the proof right there in black and white. in a perfect world, that would happen. then again, in a perfect world, lyme wouldn't exist. neither would lying. cheating. outright deceit. in a perfect world, integrity, truth and honesty would be upheld by everyone - including those in power. 


obviously, we don't live in a perfect world. 
and moral conscious is ignored when it is confronted with the (inconvenient) truth.

unfortunately, CBC, the media outlet, that broke the story didn't hold the BCCDC accountable for their obvious breach of public trust. somehow they managed to weasel their way out of it. i don't know how. the explanations given were so contradictory and their excuses were nonsensical. 
it would be (almost) laughable... 
if this disease wasn't so radically life altering 
and 
if our blood was not (literally) in and on their hands.

the day this information was released to the media, i made sure to forward this on to the reporter at the Richmond News. the same one who had covered our story back in may. back then, he (and the paper) did a 3 part series on our family and lyme.



SMALL BACK TRACK INTO THE NOT SO DISTANT PAST HERE:

i'm not sure if i actually posted them or not so here are the links to them.
the BCCDC's response (in the 3rd article) to our story was appalling. i was furious that their spokeswoman would make it personal by attacking us and  our lyme literate doctors. the reporter ended up hearing through the grapevine that i was super upset and contacted me. this 3rd article was supposed be the final article in the series but he gave me opportunity to respond to the BCCDC.

i responded with a letter and the paper printed it. the following is the link to that letter:


ARTICLE #4
"Placebo Effect" isn't helping us get our life back


POST SCRIPT:
There was huge response to the paper's articles. and they recieved many letters as a result of the articles. they published many of them. you can read them by going to their website home page and entering "lyme disease" into the search engine on their home page.

Richmond News Homepage

OR

This link may take you directly to all lyme articles, i think :)






BACK TO PRESENT DAY:

obviously, that type of longevity in media, in and of itself, is quite remarkable.  so i doubted anything would come of me emailing the reporter this latest information. but i held on to hope and with a click of my mouse forwarded on the media press release to the reporter.
then i held my breath.
and
held my breath
and 
held my breath
and
held my breath
and
then i started having seizures (maybe, i shouldn't have held my breath so long. ha. ha.)
at any rate, with this onslaught of new symptoms intensified our private battle with this horrific disease
it consumed us whole
and
swallowed our ability to give any time or energy, let alone thought, to the public side of this fight
3 long weeks went by
and then,
in the midst of the mayhem, came an email from the reporter
turns out he had been working on the story all this time
and
had been in dialogue with the BCCDC about the survey
and
he wanted my thoughts and reaction to their emailed response
ASAP!
could i call him right away?

i didn't have time
i didn't have the energy
i didn't even have the desire 
i didn't want to deal with it at all



i am so utterly tired of it
all of it
the public and the private battle
i just want it to go away
all of it
and
i didn't want to read through the all too familiar BS of the BCCDC
but
i was grateful for this reporter's continued interest
and
painfully aware, that too many lives have been turned upside down by this dreadful disease
one that it is preventable and curable (in early stages)...
- BUT ONLY if you know about it -
awareness is the key

and, as i see it, speaking out is making a difference
maybe not in the political domain (yet)
but the word is getting out
every article written
every story published
every time the news reports on lyme
it results in public awareness of this disease
and
awareness and knowledge about lyme is saving lives
and
so i opened the email and subjected myself to the BCCDC's BS response
and
it hurt, as i knew it would
it infuriated me, as i knew it would

it deeply grieved me, as i knew it would

how can they keep lying about this?
don't they care that people are LOSING THEIR LIVES as a result?

it cost me to confront it again
but
i did it anyway
and
then i called the reporter
and
i said, "we are in crisis mode right now. i've got 15 minutes to give to this."
and then, in a flurry of emotion,
i blurted out my gut reaction 

here's the thing:
give me a few hours,
and
i can articulate myself decently in written form 
but
i do not think well on the spot

i inarticulately babbled on and on to the reporter for 15 minutes
and
after i hung up, i felt like not only had i failed to speak intelligently, i had not done the story justice
and i really, really, really wanted to sit down and think it all thru 
and THEN email him THAT response
but
i had no time or energy 
and 
i really didn't want to THINK about it
i did not want to dwell on the anger
and
so, with some effort, i let it go
(and the teeniest, tiniest part of me hoped the reporter would let it go too)
but
somehow he made sense of my scattered responses
and
he wrote an incredible article
it made the FRONT PAGE of the newspaper on friday

Disease expert's excuse is "hogwash" 
or
(this is the link to the digital copy of the paper)


i just noticed today that, in addition, to the above front page article, their "editorial opinion" was about this survey too.

Survey on Lyme worrisome


so there you have it - some, ok, a lot, of leisure reading for a sunday afternoon.






November 12, 2010

REMEMBRANCE DAY

yesterday was remembrance day.
a day to honor our veterans
a day to say thank you 
a day to remember
and
a day that i view with a very different perspective now that my son is a soldier.

last january, taylor joined the canadian armed forces.






today, is my first remembrance day as a "military" mother. if it wasn't for lyme and company, taylor would've completed boot camp this fall. and just like the young soldier who marched beside him today, he too could be shipping out to afghanistan tomorrow.

i can't imagine.
i really can't.
it scares me
but
i am so proud of this young man. this soldier who is my son.



remembrance day should be a part of every day, don't you think?




November 10, 2010

IT IS WHAT IT IS


parker has not been lucid since saturday and his pain levels have sky rocketed.

we've spoken with DR H every day since this started. we knew to expect a big herx at the 6 week mark of IV but this insanity we never anticipated. how could anyone? it's beyond comprehension.  it feels like this disease has swallowed him up. gone is parker. our gentle, sweet, tender hearted, soft spoken, quick witted sparky has disappeared. 

on sunday, DR H pulled him off of all his meds and started a very intensive detox regime. yesterday (tuesday) we started to see some mild improvements in his condition. he was still hallucinating often but he had more moments of lucidity. he was less aggressive and agitated. as we headed into tuesday evening, we dared to breath a sigh of relief and thought we were through the worst of it. not so. tuesday evening his condition deteriorated again. it got really crazy and really, really scary. 


DR H has wanted us to get blood work done but leaving the house has just not been at all possible. fortunately, this morning (wednesday), parker was more subdued.  enough so, that we felt like we could handle getting him out of the house. after the night we had, coupled with the preceding days, we felt like we had to do whatever it takes to get that blood work done. herxing can be really hard on your system. given how ill he is, i was very worried that his liver and kidneys were just not handling the high toxin load that is caused by the bacteria dying. and, to be honest, a tiny little part of me, by this point, is wondering ... what if this isn't just a herx? what if this toxic die off has triggered something more? he is just so sick. so not there. so very, very vacant. his eyes are wild and unseeing. it is absolutely terrifying to witness. how can one disease cause such mayhem in the body and in the brain? even after living through it myself, i can't comprehend it.


we took him in to see our doctor, DR A. ( side note - DR A is lyme friendly and is helping to treat me. unfortunately, because of the persecution against lyme docs he can't prescribe parker's treatment. one lyme patient can maybe slide past the watch dogs but prescribing for two? too risky.) at any rate, we are grateful for the compassionate care that DR A gives parker. he monitors parker's blood work with monthly orders. and he also helped us get nursing care for parker's PICC line. most importantly, he is really supportive and he gets that lyme can do all this crazy stuff to a person. 


by the time we got parker into DR A's office, he was hallucinating again and was in and out of it. he was also extremely agitated. we explained to DR A what has been going on. he was in agreement with DR H that this is a herx. and that getting blood work done was a good idea. parker's symptoms are really severe. he is completely not himself. at all. during our appointment, he indicated to DR A that he wanted to harm himself. i cannot express how gut wrenching it is to hear your child say that. DR A said that he thought it would be best if we took him in to children's hospital. doing so, means we'd get test results the same day and if something else is going on, than it could be addressed immediately.  


we drove straight from DR A's office to children's hospital. thankfully, we didn't have to wait long at all to see the ER doctor. we told the ER doctor that parker was undergoing IV treatment for neuro lyme and that he was undergoing a very intensive herxeimer reaction. that this die off was causing his physical debilitation and his psychiatric behaviour. however, our lyme doctors wanted us to air on the side of caution and just make sure that nothing else was going on. we also explained the detox protocal that DR H had prescribed. and that there had been improvement in parker's condition since starting that.


the ER doc safely skirted the lyme issue but went ahead and ordered the blood work. he also called in a psychiatrist. given parker's symptoms, we expected that. we met with the psychiatrist. parker was in and out of it a lot during the evaluation. the psychiatrist asked him a million questions. poor parker kept falling asleep. than would wake up, be lucid for several minutes than get loopy again. then the psychiatrist asked us a million questions. then he spoke to us alone. then he spoke with parker alone. then he asked us a million more questions. but he was very kind and somehow he was able to extract enough information from our semi-concious son to make a diagnosis.


all in all, we spent 5 hours in hospital.
the psychiatrist concluded that parker does not have any sort of psychiatric condition. 
he diagnosed parker with
delirium.

delirium is syndrome that is caused by an underlying condition.

the psychiatrist said that "our explanation" of neuro lyme fit the bill as the underlying condition.
and that the delirium is a result of the herxing.
 
the ER doc agreed.
altho' he was quick to point out that he "didn't know a lot about lyme because, as you know we don't see a lot of that here."
both doctor's were also in agreement with the detox treatment that DR H had prescribed.

despite his symptoms,
parker doesn't have a psychiatric disorder
we are so relieved.

despite his symptoms,
his blood work came back a-okay. on paper he looks like the picture of health.
we are so relieved.

he is herxing.
it is what it is
and
it is a crazy, incomprehensible ride. we feel like we have been plucked out of reality and dropped into a twilight zone. it is nearly impossible to believe that this stupid disese can cause all of this insanity and suffering.
but it can
and
it does


it is what it is.

November 9, 2010

BEYOND EXHAUSTION

we are still in the thick of it with parker
there has only been a miniscule lessening in his psychiatric and physical condition.
we have been on the phone constantly with DR H, DR D's nurse and my previous LLMD, DR M. parker is experiencing a major die off (herx) of both the borrelia (lyme bacteria) and babesia. his body is not able to keep up and effectively detox the heavy load of toxins circulating through his system, as a result he is very neurotoxic. a treatment plan is in place to control his symptoms and detox plan is in place to try and clear the toxins from his system. DR H felt he should be feeling a lot better within a week.

we hope that we will see response much, much sooner as we are absolutely beyond exhausted.
we are getting little sleep or rest. graham or myself needs to be with him constantly. taylor has also stepped in and filled in as a caretaker too. he has been an awesome support and amazing help to us. even still, there is little respite and we are all beyond exhausted. drained. physically and mentally. i am running on adrenaline and while my seizures are being controlled with meds now, the barfing that they triggered, is continuing. i have kept little down since last tuesday.

we know people are praying. thank you to those of you that let us know you are. that knowledge brings us much comfort. thank you also to the folks who have helped out in practical ways too. we are so very grateful to have your help in easing our burdens.

pls continue to pray. what we are going thru is really beyond description. we really don't feel like we can bear the unbearable much longer
and 
we really want our sparky boy back. 


November 8, 2010

NO WORDS

there no words to describe what our last 36 hours have been like.

all i can say is that parker is suffering greatly. 


i want to respect his privacy, yet let folks know enough that they understand the urgency of our request for prayer.

his symptoms and behavior are similar to mine and what i wrote about in my post "shattered". the only real difference is that my episodes were much shorter in duration. last nite, we were up until 3am with him...he slept a few hours on the couch with graham and was up by 9am this morning and his symptoms have not calmed down.


he cannot be left alone. it is very serious. he is experiencing extreme psychiatric symptoms and is in agonizing joint pain. all of this is terrifying. however, we are in touch with our doctors so it is not that we are not dealing with this without medical supervision.  parker is at the 6 week mark of IV treatment. medically, it is well-documented that a patient can have a very extreme herx at this point.


but never, ever could we even fathom that it would be like this. even after what i have gone thru. we knew it could get bad, but this is beyond anything you could ever consider.

there really are no words i can find to articulate what we are trying to live thru right now. 
it is beyond words. 
it is beyond belief. 
it is beyond terrifying. 
it is beyond horrifying.
BUT
it is not beyond HOPE.

all nite, all that kept coming to me was the words (verse) 
"no authority, no power, no principalities shall stand against you"

i knew it totally was not the whole version of the verse and i couldn't remember it but in the chaos, it was not remotely possible to look it up, but i just kept repeating that phrase over and over. now as i sat down to put out this plea for prayer, i thought i need to look up that passage in scripture right now because i need to include it in this post. even if just for my own benefit of reading and writing it and absorbing it.

i had already written all of the above BEFORE i read the passage.
i wept and am weeping as i write this. weeping in joy and adoration and humility of my heavenly father and how He speaks to me and shows me His love even when i don't feel like i can "see" Him in the midst of this hell.


i will praise Him in the midst of this hell. for He is God and He is good. the hand of the Almighty covers us and by His Grace, we hold firm.


please pray for us as we wait and yearn and plead for God to intercede. we know He will. but it is so hard, so painful, so beyond to bear the wait.

25But if we hope for what is still unseen by us, we wait for it with patience and composure.
    26So too the [Holy] Spirit comes to our aid and bears us up in our weakness; for we do not know what prayer to offer nor how to offer it worthily as we ought, but the Spirit Himself goes to meet our supplication and pleads in our behalf with unspeakable yearnings and groanings too deep for utterance.

30And those whom He thus foreordained, He also called; and those whom He called, He also justified (acquitted, made righteous, putting them into right standing with Himself). And those whom He justified, He also glorified [raising them to a heavenly dignity and condition or state of being].
    31What then shall we say to [all] this? If God is for us, who [can be] against us? [Who can be our foe, if God is on our side?]
    32He who did not withhold or spare [even] His own Son but gave Him up for us all, will He not also with Him freely and graciously give us all [other] things?

35Who shall ever separate us from Christ's love? Shall suffering and affliction and tribulation? Or calamity and distress? Or persecution or hunger or destitution or peril or sword?
    36Even as it is written, For Thy sake we are put to death all the day long; we are regarded and counted as sheep for the slaughter.
    37Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.
    38For I am persuaded beyond doubt (am sure) that neither death nor life, nor angels nor principalities, nor things. impending and threatening nor things to come, nor powers,
    39Nor height nor depth, nor anything else in all creation will be able to separate us from the love of God which is in Christ Jesus our Lord - Romans 8:25-39

November 6, 2010

A'BARFING WE WILL GO


so yesterday (last thursday) we left for seattle
i rolled out of bed
slapped on a toque
and
a pair of sunglasses
and made my decent down the stairs
that tired me out
and
made me feel unsteady
so i had a seat in the living room
and
then i barfed and barfed and barfed.
thankfully not in the living room
but in the porcelain bowl
i felt absolutely wretched
every bone in my body hurts
i'm running fevers
can't walk straight
and
my brain keeps going numb
and
every time it goes numb
it makes my body do weird things
like scream and shake and rage and sweat and barf
my equilibrium is gone
and
i exist in this numbed out state, traipsing in and out of insanity


and in this state
i find
i must travel to washington state
DR H sending me to DR D
to see if she can shed light

on my ever decreasing capacity to live in reality
and
this barfing that started the day after my hospitalization


the retching is earth shatteringly loud
and the mere prospect of having it happen in public should be deterrent enough
but
my brain has a mind of it's own right now

i made the 30 minute drive to the border without incident
and then, just past customs, i knew it was coming
pull over man, i gotta barf
over the over pass
left on H street
grassy knoll
stop the car
out i roll
and
out it rolls
down to acid know
as i haven't kept anything down since wednesday morning
after christening america
i slept on and off for the remainder of the drive
and
didn't barf again til we got to the hotel
in i went
and
in my haste
i didn't shut the door to the hall
so there i was 
barfing
and
retching
in a frightfully loud and obscene way
echoing off the 4 corners of the barren bathroom

on and on and on, i retched and barfed and retched
and
when i was finally done
graham said,
"oh NAICE! the door wasn't shut"
so, now, in addition to traumatizing my family and my dog all week,
i've now probably traumatized every patron in the entire hotel

what is up with the barfing anyway?

there seems to be no rhyme or reason to why
i have no nausea, no upset stomach
but
just before it starts happening
my brain starts to feel weird, kinda numb-like
i dunno, it's hard to explain
and after ward,
i completely zone out and get that sleepy drugged up feeling
generally, i fall asleep pretty quick after
no matter the time of day
the barfing happens about 4 times a day

DR D is pretty sure that the bartonella infection has just gotten really out of hand with me. DR D's clinical findings are in keeping with what DR H figured was happening. the bart has caused significant inflammation in my brain, neck, kidneys and liver. in addition, i'm running fevers and my lymph nodes in my armpits, chest and neck are swollen and very, very tender. the bartonella infection and subsequent inflammation of it, triggered the seizures which in turn has triggered the barfing.

confused?
i'm not surprised
me too
it's all a little hard to comprehend and i'm a little foggy on the details
but
basically, my brain is pretty messed up
that's obvious
but it's not me, it's bartonella 


i was worried i'd barf during my appt with DR D...but cooperative patient that i am, i made it all the way through it
before
i started retching and barfing.
graham said the sound didn't ricochet too badly through the office walls

after our appt we left for home
graham was starving
poor guy hadn't really had a decent meal since we left for seattle
a sick, barfing wife can put a bit of a damper on eating out
but after DR Ds
i was feeling a bit better
and
a little more stable
and
i was starving too
so we stopped for some food
cheap, quick and oh so good and so fresh and organic to boot
did i really refer to something organic as cheap?
you bet
highly recommend it
it is delicious
we've gotten other friends hooked on it.

so my spicy, mexican rice bowl remained in my gut
(see what i mean, no rhyme or reason?)
we headed home
i slept on and off
an hour into our drive
we stopped for coffee
i had tea
30 minutes afterward
and i knew
that tea would not stay down
pull over
and
there i am
in the rain
in the gutter
i choose the gutter over a gas station bathroom
it's more private
and cleaner
my retching is so loud and so terrible
and my brain feels really numb during these episodes and i need graham by my side
god bless him for loving me thru THAT.
all of it
this screeching, rethching, overwhelmingly insanity that is our life

so the last placed i barfed was in ferndale
in the back end of an outlet mall parking lot
(gives outlet a whole knew meaning)
i barfed and retched so hard
that i burst the veins in my legs
there i sat
squatting in the gutter
puke pooling on the concrete
tears slipping down my cheeks
reality

episode over
we pulled away
from my vomitous waste
not planning to return. ever.
well, like who would do that? who would want to do that?
you know what's coming next, don't you?
2 minutes down the road,
i bolted upright from reclined position
stomach lurching
panic filling my throat
i squeaked,
"my phone! where's my phone?"

quick search of the car
no phone
and
then we knew, with certain dread
the phone was at THE SPOT
and
so we returned to THE SPOT

the spot was easily identifiable
even in the dark, rainy night
because i had covered up that shadowy vomitous pool with some tissue paper
like a corpse in the street
sigh of relief
as we spotted my phone lying beside it


i guess this admission outs me as a litter bug
i'm sorry bout that
really i am
but
my barf deserved a little dignity
so i had covered it up with a little piece of charmin
yes, it's bad for the environment
but
if there is truth in advertising
than those charmin bears might be grateful for a little free tissue




i made it over the border without incident
and
finally arrived home
to a very hairy, very fluffy, very wiggly, very WET welcome
yup
puppy peed on me within 2 minutes of arriving home
as if barfing on the side of the road all day wasn't bad enough

and that about sums it up


November 4, 2010

THE NEXT STEP

not a lot has changed since my post
i remain in bed
there is little change
but i got a lotta doctors trying to get me figured out
(good luck with that)


i speak via phone with DR H everyday
some days i can talk, some days i just kinda mumble or grunt
regardless of whatever type of wretched state i am in,
DR H is never, ever at a loss for words
sometimes i think he's slightly ADHD
he's all over the map
jumps from joking
to
rapidly firing out complex protocals 
with drugs that are anything but your standard, average run of the mill meds
and 
than whhooops, side steps, with a story about rosemary kennedy or picking dandelions, or how his 5 year old bosses him around
he never misses a beat
graham and him tend to have this thing going where either one of them will all of a sudden drop in a kinda random and weird statement in the midst of medical jargon and serious business. i don't know if their trying to one up each other or what, but whatever - i alternate between thinking it's funny to finding it downright annoying.

at any rate, at the end of our last conversation
graham let it slip that we got a puppy
and
named it after him.
THAT 
rendered DR H speechless
total silence


i think he was waiting for some punchline


we offered none.
and
just let the dead air hang awkwardly between all but the buzzing of the long distance line static fillling the nothingness. 
finally he cleared his throat
and
said,
"uhhhh, okkkkkkaaaaaaaaaaay?"


ha ha
we just sat there at our end of the line basking in his obvious flusteredness.
it's not too often you can catch him off guard
i'm not sure it's ever been done before


 we've phoned in a panic state of mind, when herxing has my body so toxic that we're sure i must be dying. we've called from home, from ERs, from hospital wards, during the day, out of the blue, in the middle of the night.

i've talked to him when i'm balling hysterically, or ranting and raving like a lunatic, he's dealt with me lucid, loco and everything inbetween. i've blubbered on in an in coherent stream of pain, hopelessness and why suicide seemed like a good idea. 
grahams' talked to him in a state of panic, as he's sure that that seizing, barfing twisted heep on the floor that is unrecognizable as his wife may never fully come back to him. we've called him when i'm running fevers, hallucinating and it's felt certain death is imminent.


and he always knows what to say.
until harrison came along
i love that all it took was a 9lb furball to render DR H completely speechless.


of course
this might come back to bite us.
i can't help but wonder if he just sat there staring at the phone wondering if maybe, really, we are really crazy and why in the hek he had just spent 20 minutes trying to convince us otherwise


i dunno
at any rate,
it's been some comic relief in a week that has really been horrific.
and
apparently, i'm not through it yet.


yesterday, i was finally starting to feel somewhat human again (whatever that really means)
but all my symptoms seemed to be slightly less intense
like my insides weren't burning quite as fiercely as before
my joint pain only hurt real bad if i moved
i was feeling less zombie, 
my brain wasn't feeling quite so trembly and electrical
i wasn't twitching nearly as much
my organ trembling had quieted down to a dull vibration
and
i could be upright for a bit
i could walk small bits without falling over
and 
then next thing i knew
my brain felt numb again
my chest felt heavy, compressed and full
and
i felt like i was drowning
and
the next thing i know i'm barfing my guts out
wretching
wretching
and my head is feeling all crazy again
and 
my gait is off
and
i just keep barfing


and
graham kept describing my barf to me
i don't know why
come to thnk of it that is really weird
or 
maybe he was talking to DR H then and describing it to him
i don't know
i think their was concern that i was barfing up blood


and then my head started hurting
and my fever spiked to 101.3
and 
that numb brain thing came back
and
i felt so very, very, very tired.


and despite
all these stupid anitconvulsants and anit seizure meds and sleeping narcs
i'm still having trouble sleeping
but you know
i come in and out of it
here one minute
gone the next

anyhow, i can tell i'm looping out now
or maybe really none of any of this makes sense at all
but i'm jsut lying here
and 
wanted to write something
and
give an update
even though what is there to update when you've been lying in bed for a week straight?

well, that's right, today we're leaving to see DR D in seattle. DR H is sending me to her, so we can figure exactly what is going on.


and what the next step will be.

i know DR H is working on stabilizing me and getting these seizures under control. that is step 1. but step 1 is really a band-aid - as we need to figure out a way to treat what is causing the seizures. bartonella is the number 1 culprit. every single time we've gone after this stupid infection - either agressively or lightly, my brain blows up (that is near literal) soooo, DR H wanted me to see DR D pronto. and between the 2 of them, they're gonna figure out what the next step is.


i hope i'm lucid when i got thru the border.
that could get interesting.