SORTA SOARING

i thought it was high time i shared something on a more positive and lighter note.
here goes...


i am doing well.


isn't that wonderful?

i am still barfing daily. some days i vomit upwards of 8 times a day. yes, this is still ongoing since march 14. i have not had one barf free day yet. DR H started me on IV nutrition back in May and it helps so much with my energy levels, moods, resolved my nauseau and helped decrease the number of times i vomit on any given day. as long as i 'ingest' 4 nutritional IVs per week, i feel pretty darn good.


and that is very cool...and so is looking down and realizing your outfit color matches your iv line. hee hee.

it is good to know that they are helping but the pseudo nutrition is no way to live. it's extraordinarily expensive and my poor little veins are taking a beating and my arms are littered with "track marks". i recently tried to get by on as few as possible because the cost of them is killing us. as a result, my nausea returned, my vomiting increased and my energy plummeted.

my little tracks

it totally sucked to be dragging myself through the day again, however, i was still managing to function at an above average level for me. i was still hanging on to a sense of well being whilst holding on to a few dollars and cents, so i felt like i had struck a "do-able" balance.


until, that is, my blood counts went haywire.


the past 3 weeks, my blood work for my kidney function has made a significant jump. elevated numbers are not a good thing. it is concerning. we are not at 'freak out' levels yet but my docs are concerned and i am being closely monitored. which means more needle sticks. great.

my most recent lab work also revealed i've now developed neutropenia, low platelets, borderline anemia and various electrolytes are out of whack. all of those coupled with the kidney issues only began to be out of range when i cut back on the number of IVs i was doing. 

clearly, i absolutely need the IVs.

thankfully, my folks, an anonymous friend and a known friend have generously helped us cover costs so that i can receive all the IVs i need for the next 4 weeks. we expect this will result in a rapid improvement in my blood work. we are also trying to figure out a more affordable way to meet my body's needs. i continue to be amazed at how God provides for our financial needs. i'm still learning to keep my eyes solely focused on Him - even when the bank account is riddled in red and minus signs. i don't understand His ways - common sense would tells me it'd be a whole lot simpler for Him, and everyone involved, if He just stopped the vomiting and healed me now - however, He is GOD and His ways are better than my ways...even when they leave me scratching my head and saying, "really, Lord?"

i continue to be reactive to all fruits and vegetables. it is incredibly mystifying. none of my docs can figure that one out. what do i mean by reactive? oddly, this does not appear to be a contributing factor in my vomiting.  the symptoms i experience in relation to the ingestion of vegetables are not in my gut - they are systemic. 

i recently tried to see if this reactivity was persisting.

one evening, i ate some nachos - they had a sprinkling of chopped green peppers on them. i ate them partly because i was too lazy to pick them off. but also as a test, per say. you see, lyme symptoms strike in such unpredictable patterns that sometimes it is difficult - even entirely impossible - to know what it was or is that triggered a sudden onslaught of symptoms. however, i have been feeling so well that i was pretty sure i could finger the green peppers as the likely culprit should i suddenly be hit with a round of nasty symptoms. throwing caution to the wind and in the name of scientific curiousity, i quite literally bit the bullet. 

and within 2 hours, i was down for the count. i had a sudden on-set of profound fatigue - akin to being highly sedated. the following morning, i had joint pain and stiffness that made it difficult to get out of bed. my muscles ached as if i had just run a half-marathon. in fact, i spent most of the following 36 hours in bed. yes. it is that bad. i also had hives, dermagraphism, red-rimmed eyes and a puffy face. i felt toxic. i felt like i'd been run over by a produce truck. ha ha.

 

it is confounding and puzzling and the oddest of odd. if nothing else, at least, i am consistently odd.

oh wow, i can't believe i started this post with an "i'm doing well."!! 

rather ironic that what follows is a run down on dismal blood counts, kidney issues, vomiting, and a monologue on how veggies nearly render me comatose.

guess it's more like sorta, kinda, not really well type of well. yet that doesn't quite hit it on the head either because i honestly am enjoying a level of health that i haven't had since getting profoundly ill in 2006. i guess i could say i have a sense of well being...and despite challenges, i am sorta soaring. i am spreading my wings and testing them out.

it is profound to think that i have not been on any IV abx since LAST august. that is extraordinary. i am currently on oral abx for that pesky mycoplasma infection but i am not on any abx specific treatment for lyme. we still believe my barfing is related to the myco infection and not lyme. 

once we started treating my mycoplasma infection and DR H got me started on my nutritional IVS (in may), i experienced a prolonged state of well being. when my body is appropriately 'fed', my energy levels soar...as a result, i am sorta soaring. literally. at least i'd equate flying down the longest zip line in Canada to a sort of soaring. it feels good. real good.

soaring with my baby girl
RockRidge Canyon - June 2012

click here to experience the zip line via you tube.

WE'RE ALL IN THIS TOGETHER

in recent weeks, there has been a rise in the number of lymies that have reached out to me. these high volume surges happen from time to time. i'll go for a time where one or two emails find there way to my inbox and then, all of a sudden, there will be a huge influx of emails, messages or phone calls from lymies. what is a common thread among every conversation is despair and hopelessness, and a sense of betrayal, abandonment, and loneliness. 


some days, i'm so overwhelmed with my own pain and the unending needs pressing in on me, that despair and hopelessness reside in my own heart. they creep in like a thief in the night and catch me off guard - their suffocating presence is paralysing. it can bear down with such fierceness that i am hard pressed to provide any sort of support to those around me. i hate that. i don't want to be so caught up in my own grief, in my own brokenness that i fail to see outside of my own world. it's not about 'me'. it's about 'we'. 


there is so much pain and agony in this world and my heart is broken by it. even tho' i'm intimately acquainted with suffering, i often find myself at a loss on how to respond. what do i say? is there even anything that can be said? 


i know that sometimes a word of encouragement or even a verse fall short or fail to revive a battered heart. sometimes the desire to uplift comes across as a misguided attempt to explain life questions that simply have no answer. 


i know that sometimes a "hang in there", a "don't give up", a "keep fighting", or a "there is always hope" (there is, tho!), are not enough. however well intentioned, they can ricochet off the frailty of a wounded heart with a staccato emptiness. 


sometimes, there is nothing that can be said. words fail. sometimes, when there are no words to say, the world around you goes silent. i know. i've been there. i've experienced it first hand. silence in response to pain is perceived as abandonment. period. whether that is the reality or not. it hurts. it cuts deeply but i absolutely understand the propensity for it. i've often wondered why so few people respond or comment on my blog posts. on the few occasions i've had the nerve to ask, i've been told "i just don't know what to say."
i believe that. 
sometimes, i get emails and messages that leave me feeling that same way. they leave me speechless and aching and yearning for something to say to make someone feel better. yet, i feel like nothing i say will help. sometimes i feel ill equipped to handle it. sometimes, i am afraid of it. sometimes, i am paralysed by it. in those moments, i am tempted to be silent...or run away from it. it takes courage to wade into the muck and the mire of someone else's pain. after all, pain is messy. suffering is unsettling. it rattles us to our core and makes us question our world, our faith in God and our belief system. 


i live it and yet, it still rattles me. sometimes there really are no words but silence is never okay. sometimes the single most important thing we can say is, "i don't know what to say because what you are going through leaves me speechless." 


acknowledgement and validation speak volumes. 


yet, when the scope of an illness is so vast and far reaching, how do i even begin to acknowledge and validate the huge breadth of emotions it elicits? 

several days ago, i read the following post at a blog called "the ragamuffin saint". IT SAYS IT ALL. i wept when i read it. it is an eloquent expression of all that i hold in my heart. i'm posting the link to that post here. it is entitled, "to my chronically ill friends" but i think it applies to all of humanity. after all, pain and suffering are a universal experience. no one is immune to it. i encourage you to read it and then reach out to someone in your life that is hurting and share it with them. 


after all, we are all in this together. 


everyone, no matter their circumstance, needs to know that they are heard, understood, believed, visible and loved.


Michelle's Blog is called The Raggamuffin Saint 


Click here to read - To My Chronically Ill Friends

BITTERSWEET JUXTAPOSITION

i planned to immediately follow up part 1 of indoctrination of bc doctors with a part 2 - as there are a few more slides from that presentation that ought to be brought to the public's attention. i will get to that over the next little while, however the day after publishing that post an incredibly ironic event occurred.

the dog got a tick bite
and
the dog is now being treated for suspected lyme disease.


I KID YOU NOT.


while our public health authorities continue to deny the prevalance of lyme in BC, my dog picked up a tick in our friend's backyard in coquitlam, BC.

Harrison's tick bite.
You can observe the puncture mark in the center.
The surrounding area was pink and very swollen. Also, the hair around the bite had fallen out.

as far as i'm concerned this surpassed the realm of 'ironic' - i'd say it is a bittersweet juxtaposition 


that same day a news story about lyme ran on global BC tv (watch: "scientists say BC is on BC is on the verge of a Lyme Disease explosion") BC's provincial health officer continues to tout the standard party line that lyme is not prevalent in BC. during the broadcast, he insists,

"Clearly we have significant increases in infected ticks in eastern and central Canada but we have not seen that change in BC." 

i used to get outrageously furious upon hearing these blatant denials. to a certain degree, i still find it upsetting and aggravating but for the most part, i sit back and wonder if he realizes how absurdly ridiculous he sounds. studies done by scientist and epidemiologists have confirmed that the tick populations are exploding across this nation (and the world at large), yet BC somehow has been spared? it is nonsensical. 

Only a truly cosmopolitan dog would have eyelashes like that.

i watched that news broadcast with my newly diagnosed, very cosmopolitan puppy curled up on my lap...Harrison is a truly citified urban dweller who has his own wardrobe and does his business on a small patch of grass. his big foray into the wilds of nature was the well-groomed backyard of an urban home and who, as precautionary measure, had received his monthly dose of flea and tick repellent the very week that some dumb tick decided his hind quarters looked like a nice place to dine on.

Oh Canada

yet, our BC medical authorities adamantly insist that our risk of coming in contact with a tick is relatively rare. and it is highly unlikely that that tick would infect you.


furthermore, based on the presentation i highlighted in my indoctrination post (and as seen in the below slide from presentation), our medical profession is teaching front line physicians that lyme is so rare in BC, that prophylactic treatment plays NO ROLE - meaning it is unnecessary. And in areas where lyme is considered epidemic only a single dose of abx is recommended.

what i was told by the vet is so utterly contradictory that one can only shake their head, throw their hands in the air and wonder that such a bittersweet juxtaposition exists.


there i sat in a vet's office listening to him passionately speak of the need to prophylactically treat my pooch in order to spare him the potential of a life altering chronic disease that would cause him great suffering. yet in that power point presentation, a highly esteemed ID doc from BC not only dehumanized those suffering with the disease but taught other BC doctors that prophylactic treatment is unnecessary.


what a bittersweet juxtaposition.

the humane display of compassion, concern and immediate action that i encountered in the vet's office is in stark contrast to what we've experienced countless times when the patient is a human one.

Harrison's bite mark 4 days into abx treatment.
Mark is rabidly fading, inflammation subsiding and hair re-growing. 

dogs receive humane treatment.
humans encounter inhumane (non)treatment.


i said nothing of my experience with lyme during the appointment. i wanted to see how a tick bite would be handled and what would be said when a vet does not know that the patient's owner is lyme literate.


this is what the vet told me;


"lyme is a serious illness and if it is not treated promptly it can become a chronic disease. dogs can get very sick, debilitated and suffer greatly. they can develop arthritis, depression, heart issues and neurological disorders. we don't want that to happen to harrison. i don't like to prescribe abx however, in the case of a tick bite, abx treatment is warranted. i would rather over treat or prophylactically treat than not." 


"what about testing, is there a test for lyme?" i inquired.


the vet replied, "there is a test but i don't know how accurate it would be this early. if you would like to have testing done i can check up on that for you HOWEVER, i strongly recommend that you start him on the abx immediately. i would really hate for you to bring harrison back in 4 weeks or 3 months from now when he is having trouble walking and is very sick. the late stages of this disease are very painful. besides, the actual cost of the antibiotic is cheap enough. if you don't treat right away, then not only does the dog suffer but then treatment becomes very costly. if we don't treat him now and later on he develops chronic lyme disease, that that is a terrible situation to be in."


truer words have never been spoken.

Harrison's abx script

"oh no, i don't need a test to confirm anything. of course, we'll treat him. unfortunately, i am well aware of the consequences associated with the disease because i have chronic lyme disease." i quietly replied and with gratitude accepted his abx prescription for harrison.


his jaw hit the floor upon hearing that. "oh, i'm so sorry to hear that. i guess you don't need me to tell you then that over the course of the next several weeks, you need to watch harrison carefully for symptoms of lyme. if he starts to limp, becomes depressed or lethargic bring him in immediately. for now, i'll prescribe him 2 weeks of amoxicillin. let's see how he makes out with that and we can re-evaluate him again after that is done."


he then asked if we were planning on vacationing in the east kootney/okanagan regions of BC - specifically naming kelowna, kamloops, shuswap and penticton areas as having a high incidence of pets contracting lyme disease. he advised extreme precautionary measures should be taken for both us and our dog if we visited those areas. 


that is the kind of advisory that our public health officer should be and has a duty to communicate to British Columbians. 


i drove home in a daze. shocked that i've just added another family member to a treatment regime for this so called "rare" disease. and shocked that getting him treated was so easy. 


indeed, it is a bittersweet juxtaposition.

Antibiotics for Harrison The Dog Goertzen

why is it that my dog with a SUSPECTED case of lyme is promptly started on abx to prevent the devastating impact of a chronic infection - yet my son, who has a serologically CONFIRMED case of lyme and has been profoundly disabled by the disease, was not only denied treatment in Canada but medical authorities condemned us for his USA prescribed treatment by threatening to remove him from our care?

indeed, it is a bittersweet juxtaposition.

THE INDOCTRINATION OF BC DOCTORS (Pt 1)

a Family Medicine Conference was held in Vancouver, BC this past February (Feb 22-25, 2012).

Here is an overview of the conference mandate (as per website):


This comprehensive three-day review course offers an update of knowledge central to the practice of family medicine in both rural and urban settings. Committed to addressing everyday practical issues, speakers present equally on current and special areas of concern to the primary health care professionals.


DR. R, an infectious disease doctor in Vancouver, gave a power point presentation on Lyme disease to the HUNDREDS of BC GPs in attendance. (the pictures in this post are the slides from his power point presentation)

I learned of this presentation from someone who attended the conference. they have requested they remain anonymous but have given me permission to share this information as well as their thoughts on what they experienced during the presentation.


"His presentation was horrendous.The impression I got is that he was trying to be entertaining and elicit laughs from his audience. His tone was dismissive of Lyme disease and mocked Lyme patients -I think many of his slides speak to his attitude." 


"He said there are 4 presentations of patients with Lyme disease: 
1. panic;

2. A huge bull's eye rash - he stated rash size of a dinner plate:

3. Self-diagnosis on the internet: 

4. A patient purchasing a 'positive' test:

If he had said this about any other patient group it would simply not be tolerated. On top of his dismissive tone, he also made factual errors in his presentation."


"He stated that the blood tests are virtually 100% positive if a person has had LD for more than 6 weeks; that a bull's eye rash will be huge" - as you can see on the following slide, he states that the risk of infection is so low in BC, that there is no need to give prophylactic treatment to a patient that has a tick bite with no rash - only if their ELISA test (given at 6 weeks post bite) sero-converts to positive then you treat. 

Waiting for a patient to sero-convert at 6 weeks post bite plus relying on the faulty Elisa Test to diagnose gives the infection ample time to invade the organs and tissues, thus putting the patient at great risk for developing late stage lyme with a heightened risk of it becoming a chronic/persistant infection.

After his presentation, which mocked Lyme patients and was full of misinformation, I can now understand why doctors still do not effectively diagnose or treat Lyme disease in BC.

IT'S TIME...

dear friends


in my last post, i wrote about the tabling of the National Lyme Strategy Bill in the House of Commons. it goes without saying that this bill needs to be passed. government action on the issue of lyme is long overdue. it's time to tell the truth about lyme disease. it's time for the ignorance and outright denial to stop. while our medical authorities and government continue to perpetuate the myth that "lyme is hard to catch and easy to diagnose", thousands of canadians are losing their lives to this devastating and insidious disease; thousands go either undiagnosed or misdiagnosed. and like our family, thousands have been forced to seek out of country care in order to get appropriate and life saving treatment.

what is unique to our family's story is that not only did our medical system fail to take care of our son - they took it a step further and are fighting us on our choice to get him medical care and treatment in the USA by a board-certified, licensed MD.  up until now, we felt the need to be somewhat 'edited' in disclosing the full reality of what we've been dealing with since february -which we wrote about in a post called genesis 50:20. we now feel that it's time to publicly speak out about the stark, cold reality that we've been living with. 



below is an excerpt written by dr v. sherr. it mirrors the reality of our situation.

"I have written about the rampant epidemiology of neuro-Lyme disease and its potent co-infections (especially the red cell parasite that causes babesiosis) and the fact that these are being systematically ignored, minimized, or distorted by this Nation’s overseeing Healthcare Agencies. Astoundingly, there are Agencies that, in ignorance or arrogance, may actively persecute the victims of such borrelial, pan-systematic illness, traumatizing parents and children as well as their treating physicians. 

There are those in authority who sponsor the official separation of children from parents whose only sin is that they persist in seeking help for their ailing children. Tragically, those authorities are empowered to permanently remove sick or partially healed young ones from their devoted families.

To their everlasting shame, medical authorities have stood by while innocent mothers have been sent to jail for insisting that their children were ill and again have stood by while the parent’s belief was verified by the death of their sick child while under State 'care'. 

The rights of patients and their treating physicians have been trampled by governmental and insurance agencies in ways reminiscent of the era when AIDs was trivialized and its victims spurned as “psychosomatic.” Today’s infected millions worldwide show how wrong they were. The phenomenon of that epidemic is being repeated with the spread of Lyme borreliosis. My writing is an effort to illuminate this dark and now vast expanse of Medicine and to inspire activism and compassion for those patients who are suffering in agony "    - Dr Sherr, MD, psychiatrist

the bottom line is this - BC Children's Hospital interfered with our son's USA prescribed IV treatment for Lyme & Babesia. in february 2012, they threatened us with Child Protective Services with a clear intention of striking to remove him from our home and care. Their aggressive actions are based ONLY on their ill-informed, uneducated  "OPINION" that he does not have Lyme because of his negative ELISA test. 


it is a well documented fact that the ELISA test for Lyme is notoriously inaccurate. we begged BCCH doctors to order a Western Blot test - a more sensitive test for lyme. they refused. 


as a result, our son was kicked to the curb with an assertion that his condition was either psychosomatic or idiopathic - both of which are garbage diagnosis of ignorance.


parker has lyme. we eventually had his blood tested with a Western Blot Test. it came back positive. most important is that he responds to the treatment for it. his USA prescribed treatment for Lyme & Babesia brought him back from the brink of death. it saved him and was giving him back his quality of life...you can imagine the horror we felt when we were forced to remove his PICC line and lost access to the IV treatment that was clearly restoring his health.


let me make this very clear - we were forced to comply with BCCH's threats in order to keep our son safe in our home and under our care - where he could at least have access to oral abx therapy. as a result of the forced withdrawal of his IV treatment, his health is on a downward trajectory and he is being subjected to unimaginable suffering. we are currently fighting for his right to receive his IV treatment free from the fear of being removed from our home. below is the letter that DR H sent to BCCH and the doctor's involved in launching their attack on our family. DR H has advocated strongly for parker and his need for treatment - BCCH has NEVER responded to DR H. 

we need your help and support. the passing of the National Lyme Bill may not have a direct impact on our case - but the ripples of it will have an effect. the passing of this Bill can help prevent other families and children from facing this unimaginable nightmare that we are living.

Find your federal MP by clicking here.


All we are asking for is that you email your MP and MLAs. Please write your MPs and ask them to vote "YES" to the National Lyme Strategy Bill and let them know...

Lyme is in Canada. 

It is devastating the lives of many Canadians. 

Every Canadian is at risk. 

We need better diagnostic tests and access to treatment. 

Our government must step in and take action. Voting "YES" to the National Lyme Strategy Bill is a step in the right direction. it is a significant step...but a thousand miles lay before us.


Thank you to each and every one of you who continue to walk this journey with us.