NATIONAL LYME STRATEGY BILL

there has been a lot going on in the political pool of lyme lately and it's garnered a fair bit of media attention. it's exciting news to share...

On Thursday, June 22nd, Member of Parliament- Elizabeth May introduced a Private Member's Bill calling for the development of a national strategy to address the challenges of the timely recognition, proper diagnosis and treatment of Lyme disease. The Bill also calls for funding for provinces and territories to implement the strategy. The Bill is multi-faceted, with detailed timelines that require adherence by the Federal Minister of Health at various stages, including when the conference must be convened, when the health minister would report back to MP’s, timeline for posting new national strategy on the official gov’t website, and many other critical details to ensure that the job is done right.


See the official Bill by clicking on this link - National Lyme Strategy Bill

Below is the press conference announcing the tabling of the Bill in the House of Commons. Please watch. My friend Chris' beautiful & courageous daughter, Nicole, shares just a brief glimpse of her battle with lyme. 

"Lyme disease can be devastating. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease.  The public and the medical community need to be educated as to the increasing incidence and range of this disease.

Warming temperatures are leading the increase in range for the black legged tick.  Scientists are endeavoring to create enhanced surveillance tools, such as risk maps.  A national strategy could support this work and ensure that people can be vigilant in areas where the tick is becoming established.  If doctors know that the local risk has increased, they can help with early diagnosis and prevention. Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive.

Early treatment with antibiotics can avoid potentially serious long-term disabilities or even death.  Lyme disease requires improved diagnostic testing and proper treatment to avoid the long term effects of Chronic Lyme Disease." ~Elizabeth May

Although Elizabeth May is the leader of The Green Party, this bill is not party specific and is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the massive roadblocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care. We need for this bill to get passed! We need your help to do so.


Here's how you can help:

• Contact/Email your federal MP and if at all humanly possible set up a face-to-face meeting. Find out who your federal MP is by clicking here

• Tell MP that you know others across Canada in the same predicament 

• Tell MP that you, your family or friend(s) are being denied the right to health care and the devastating impact that has had on their recovery, family life and finances. Feel free to forward them a link to my blog.

• Forward them a link to the National Lyme Bill C-442 - click here for link

• Ask if you can count on their support to get this bill passed.

• Make sure your MP knows this is not just a ‘Green’ party bill, it is a bill that could affect every single Canadian including themselves, or their loved ones.

ROYAL GRAD JUBILEE

not sure if you’ve noticed or not, but this year is the queen’s diamond jubilee. the kids have taken a fairly keen interest in watching some of the festivities on the telly. of course, avery is at the age where queens, kings, prince and princesses are a part of her imaginary play, so seeing "real royals in living color" is very captivating and duly impressive. the fact that the real queen is "ancient" (her words, not mine) makes it all the more extraordinaire.

on wednesday, parker and i had a meeting with the teacher at his distance ed school to hand in his portfolio of curriculum and officially wrap up the school year.  i wanted to mark the day with a little pomp and circumstance...and thought it would be nice to surprise him with a little grad party dinner followed by the presentation of the "YOU DID IT!" scrapbook. in order to keep it all under wraps, i left avery in charge of decorating the house while parker and i were away at our meeting.

Table fit for a King

i left out some ribbon, balloons and blank paper for avery to work her decorating genius on. that girl outdid herself. i love her creativity and imagination. 

Welcome to a Royal Grad Jubilee!

upon our arrival home, she greeted us with a curtsy and welcomed us to the exclusive "invitation only" royal grad jubilee. she had made little invitations...

and even place cards for the table...

it was just an awesome sight to come home to.

it was beautiful, festive, and royally hilarious.

Classic Avery eye roll. What a girl!

YOU DID IT!

it's official, parker has completed grade 7!

way to go, buddy! YOU DID IT!

never in a million years did i expect to get the number of messages that came in nor the unbelievably thoughtful & touching affirmations that they contained. your messages were incredible. many of them had me doing the ugly cry…



"THE UGLY CRY (urban dictionary):
You know you're doing the ugly cry when you lose COMPLETE CONTROL of all of the muscles in your face, start heaving and making awkward sounds (even though you are trying really hard to be silent), and start leaking fluids from every opening on your face from your hairline to your chin (yes, this includes the mouth)."


my original idea had been to print off the emails and put them in a binder to give him during our special grad dinner we had for him. that was my original idea...that is, until your messages began to trickle in... as i bawled my way thru reading them, it became very clear to me that a 3 ring binder was not a fitting home for the incredible messages i was receiving.



your words are gifts that will be cherished and treasured for many years. they will speak into the life of my son – both now and in the years to come. as such, they deserved to be displayed in a way that was honoring of the depth of love and emotion that they contain. 


so i scrap booked them. 


i've taken the liberty of posting a few pics from some of the pages of the book. (i blurred for privacy.) 


***chagrined confession here: as you may notice, i also took the liberty of taking YOUR FB pics to include with your messages b/c i felt it was so important that he had a face to go with the name (i promise i only used your most flattering pics.)***

album cover

we planned a special little grad dinner for him and had decided to give him the scrapbook as the 'grand finale' to his grad day. to be honest, i wasn’t sure that a 12 year old would necessarily appreciate the significance of a sentimental scrap book. i really began to second guess my decision to present it as the 'big gift' when, to our utter amazement, some of you sent him awesome and very cool gifts. oh my word. how can i ever thank you for those unexpected and thoughtful gestures! wow. parker was beside himself with excitement - he was completely blind-sided in a good way (as were we). 


as he opened them, he kept saying, 


"what in the world? i wasn't expecting anything like this, i was just excited we were ordering in chinese food for dinner!"


when he opened a package that contained a gift card to the lego store. i gulped hard and thought, 
"oh dear, how in the world will a scrapbook hold muster to that?" 

but this is parker we’re talking about it. the significance of your words were not lost on him. he opened the book and began to reverently thumb threw it in utter and complete astonishment.

after a few moments, he lifted his head from the pages, clutched the book to his chest, and hugging it hard, and with misty eyed wonder whispered over and over,


"I love it. I love it. I love it."


he then spent the remainder of his grad day saying over and over,

"I can't believe there are so many people out there who care about me." 


he went to bed with his book...and read it late into the night. 

THANK YOU FRIENDS - because of you, parker's grad day was truly grand and chock full of the things that are real, relevant and important in life; the knowledge that you are loved, that you are special, and that you matter. your messages are gifts that will be treasured for years to come...and they still have me doing the ugly cry.


YOU DID IT!

PARKER'S SWEET TRIP TO SF

one of the assignments that parker had for his social studies curriculum was to write a travel journal. since getting sick, parker has had immense struggles with brain fog, written word and transferring his thoughts on to paper. in order to overcome his challenges in these areas, he creatively thought outside the box. he ambitiously set forth to create a photographic travel journal. 


i loved this idea... and not just because it's right up my alley as far as creative interests lie but because it nailed a ton of 'learning outcomes' all in one fell swoop. and the bonus? it meets the criteria for learning outcomes in just about EVERY subject. and the double bonus? he got to use several media mediums that he is developing a keen interest in - photography, window media movie maker and stop motion animation.


his travel journal is primarily based on our last trip to SF...with the addition of a couple shots -mainly of taylor - from prior trips. before we left on this past trip, parker planned out what he would like to all include in his journal and then made sure to take pictures of those things. on one of our days in SF, he and avery grabbed the camera and disappeared (around the hotel) for about an hour. the pictures those two cooked up are definitely reflective of their comedic side. oh my!


his final product is fantastic! and we he has worked very hard on it for the past month and he finally completed it today! we are so proud of him! and i am so happy that he has asked me to share it here on my blog! i am excited for others to not only see it - but to catch a glimpse of him. parker may have lyme...but it does not have him! it does not define who he is. he is a truly sweet, remarkable, courageous, determined and hilarious kid - i am honored to have had him as a 'pupil' and i am blessed to call him my son.

one last thing - a gentle reminder...


You have 2 more days to email me a little message of congratulations to Parker for completing Grade 7! (more info here) a huge thank you to those of you who have already done so! 


so far I've received 11 beautiful messages of congratulations... I'd LOVE to have a whole stack of messages to gift him with.

sngoertzen@gmail.com

GRADE 7 GRAD

Dear Friends,


I have a special request!! 


Next Wednesday, (June 13) Parker will have officially completed  grade 7. Yet, b/c he's been ill & was unable to attend his public school, he will miss out on all the Grade 7 GRAD festivities. That really bites. Grade 7 Grad is a BIG DEAL - and if any kid deserves recognition for reaching this milestone, it is Parker. He has had to persevere and overcome extraordinary challenges to accomplish this. 


I would love to have his accomplishment acknowledged in a special way. So I am asking YOU, my friends, to send me a short email of congratulations for him by June 13. 


My hope is that I will be able to mark this momentous occasion with a huge stack of congratulatory and encouraging messages to present to him. I can already imagine his reaction - one of bewildered delight...his sweet, shy smile spreading across his face and lighting up his eyes. He is a kid that shuns the spotlight - but I know that this will mean the world to him. To know that people care enough to acknowledge his accomplishment will be something he will carry with him in the years to come.

I am wanting to surprise him with this on June 13, so please email your messages to sngoertzen@gmail.com as soon as possible


thx so much :)

COO-COO

NO, the coo-coo is is not another attempt at articulating human noises thru prose.
and 
NO, i've not gone cuckcoo
but 
i was nearly driven cuckcoo by a coo-coo.


while we were in SF, we spent pretty much 2 whole days at DR H's office. the first day, we were there for 6 hours straight. the second visit lasted just over 4 hours. the length of the visits was due, in part, to the IVs i was put on. they take 2 hours to infuse. our second visit and appointment with DR H went longer than expected and ended on a rather low point. we were emotionally drained at the end of it and all we wanted to do was head back to the hotel and crash. graham and i were desperate for some quiet in order to process all that had been discussed during our appointment.

yet, we still faced another 2 hours in the IV clinic that is part of DR H's office. we hunkered down in the clinic while nurse jim mixed my IV and then prepped and accessed my vein for my infusion. at some point during this process, the sound of coo-cooing faintly filtered in thru the walls of the clinic. great, just great. evidently a pigeon with lots to say had taken up residence somewhere just outside the window. before long, it had amped up the volume. nice. 

coo-coo coo-coo COO-COO-COO coo-coo COO-coo

the constant droning coo-cooing went on endlessly. the thing would not shut up. initially it was just slightly irritating. but as the minutes ticked by, the coo-cooing became louder and louder until it had intensified into a frenzied state of coo-coos. clearly, the thing was worked up over something and it was impossible to ignore.


graham and nurse jim began to "interpret" the coo-cooing. of course, their comments leaned on the exaggerated scenario of a husband and wife dialogue. you know, the stereotypical "poor beleaguered man being hen pecked by his wife" scenario. i tried to act appropriately miffed over such blatant chauvinism but it was actually pretty funny.


at some point during their pigeon translation services graham began to impersonate mr rogers. honestly, my husband does the BEST mr rogers voice EVER. i think he sounds more like mr rogers than mr rogers did himself.

it is actually quite creepy. he methodically and slowly drawled into an intro speech, 
"hello boys and girls, it's a beautiful day in the neighborhood. won't you be my neighbor? well friends, today we're going to learn about a special friend of the sky. sometimes, if we're lucky enough they live in our neighborhood. also, our word of the day is a big long one...strangulation."


of course, then mr rogers launched into a PG-13 rendition of pigeons in the neighborhood. i'll spare you the details.


terrible. i know.
but
terribly hilarious.

honestly, we were all ready to strangle our neighborhood pigeon. we had good reason. by this point, it had been carrying on for at least 30 minutes. the incessant "coo-coo, coo-coo, coo-coo" was so insanely nerve grinding that IT would have driven even poor mr rogers round the bend.


it certainly was driving us cuckoo.  


finally, we'd all had enough.


graham got up to see if he could find it. he opened the window and after a bit of awkward neck craning to search the surrounding ledges, he spotted the feathered offender. 


dropping the mr rogers drawl, he lilted into a scottish accent, he pleasantly bequeathed the pigeon, 
"hello pigeon. could you please tone it down a tad, lad?" 


now, he says it turned to look at him and had the nerve to smugly coo-coo right in his face.


i don't know if this is true or not...all i know is that all of a sudden, he nearly launched out of the window and whilst remaining true to his scottish impersonation, he belted at the top of his lungs...

"shut your pie hole you wee blasted creature of the air!"

and all went blessedly quiet. 


i suspect the pigeon is planning for our return in august.

CHOKE, SPUTTER, ARGH!

i figure i may as well stick with guttural utterences as the titles to my posts...and anyways, i'm currently so choked, i literally have no words.


i just found out i have mycoplasma pneuomoniae. 


choke, sputter, argh!!


so it sucks to find out another infectious disease has invaded my body...but that's not what has me so choked.
it's that my GP got the positive test results for this infection on MAY 1...but because of either an over sight or clerical error at his office, the results got buried in my file. therefore, i was not notified. i've been dragging myself around with an untreated case of atypical pneumonia since the end of april. no wonder i feel like walking death.


choke, sputter, argh!

adding to my sputtering frustration is the fact that the whole reason i was tested for this infection to begin with is because DR H thought that it was the underlying cause of my barfing. 


choke, sputter, ARGH!


hold up, how does a weird variant of pneumonia cause gastroparesis and vomiting? well, here's the thing, mycoplasma pneumoniae infections are closely linked with lyme. it is well known in lyme literate MD circles that mycoplasma infections are a particularly pesky pathogen that can very well manifest in atypical ways in lyme and/or immunodeficient patients. untreated mycoplasma can invade the nervous system and cause all sorts of systemic issues and neurological symptoms. aside from causing respiratory issues, it can also attack the joints, the GI tract, and other organs in the body etc. it can also cause encephalitis. all of which i've been plagued with for the past 2 months.


this is why DR H and his PA (physician assistant) suspected i might have mycoplasma and wanted me tested for it. which is why i went to my GP and asked him to order the blood test for it. my GP knew this was being investigated as the root cause of my vomiting. which is why i can't understand why he never double checked my lab results.


why was this not RELEVANT and IMPORTANT enough to follow up on?


those test results came back MAY 1! i have spent an additional 30 days feeling like i've been run over by a truck and spewing my guts out and that may have been squelched had we gotten those results in a timely fashion and been able to get me started on antibiotics. all of which may have helped to avert the train wreck my body  now is.


choke, sputter, ARGH!


I AM SO MAD
and
i'm also choked at myself too


what am i always telling people to do?
always get a copy of your lab results and never assume that "no news is good news"
i should learn to heed my own advice!
be your own advocate. be on top of it. follow it up.
i know this.
i know this.
so why didn't i do it?
choke, sputter, argh!


i should never have assumed those test results were negative. 
i know better
but man, oh, man, i really did not think i would have to be fastidious in following this one up.
the only reason i found out is because i just came down with a raging sore throat, cough and chest congestion and i went to my GP to get tested for strep. while i was there i fortunately thought to ask about the myco test results...


"i'm guessing my myco came back negative?" i casually queried
he leafed thru my file
"umm, actually, oh, it did come back positive for acute infection. i'm sorry, i somehow missed that."


choke, sputter, argh!


medical goof ups happen
and
the maddening thing is that the patient pays for it. i'm literally paying for it both physically and financially.


the plan?
well, now that we have concrete evidence that myco is definately at play here, DR H is aggressively treating it with antibiotics. hello, after a nice long hiatus, i'm back on antibiotics. boo. however, i suppose it is nice that it is not lyme that has pushed me out of my antibiotic retirement. the hope is that once we start beating back this infection, the vomiting will cease.
however, i'm so far down the line with this now that that is not necessarily a given. the myco may have been the initial trigger but it is likely that my chronic vomiting is no longer just infection related but is being further perpetuated by nutritional imbalances in my body.


for the next 6 weeks, i will be 'fed' IV vitamins, nutrients and amino acids in order to re-balance my body. my GP did not think he could get this set up through our traditional medical system.  my GP is finally referring me to a gastroenterologist - who may have the authority to set up IV TPN (total parental nutrition) but it could take as long as 6 - 8 weeks to get in to see one. until then, we have to foot the bill.

DR H's office has set me up with a local ND where i can receive the IV nutrients i need. i have to go twice a week. the IV vitamins cost 160 bucks a pop. the amino acids carry a much heftier price tag - initial quotes have come in at $860 for 6 IV bags not including the ND's charge to administer them. (we are trying to source them at a cheaper price as that is just not at all affordable). all totaled, we're looking at one hek of a whopping "grocery" bill. 


choke, sputter, argh.


the IVs take 2 hours each time plus travel time to and from the clinic. i'm exhausted and overwhelmed just thinking about it. i suppose i should look on this as a nicely imposed break but i feel stressed at the thought of the time away from home -after all, i have parker to care for and school to teach him.


choke, sputter, argh.


i guess on the flip side, and if i don't sleep thru these sessions, then this could mean i have some guilt free time to catch up on my blogging. or better yet, i could just stop vomiting. what a novel idea!