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!

BLAH, BLAH, BLECH!

wow, june is almost upon us...where in the world did the month of may go?
oh, that's right, it passed by in a whirlwind whilst my head was bent over a toilet bowl. blah, blah, blech!
yes, i am still vomiting. every day since march 14. i believe i'm at 75 days straight...not that i'm counting or anything.


i had full intentions of plying my blog with lyme awareness for the month of may but this vomiting business has really taken a toll on my body and mind. the truth is, as the vomitous weeks have piled up, i've become increasingly fatigued and horribly depressed....and just totally fed up (no pun intended) with life and i haven't felt much like writing about it or lyme or anything. 


i honestly don't know how i'm still standing, let alone functioning or parenting or homeschooling. most days, i plod thru the day in a zombie like state. the longer the barfing has gone on, the less stamina i have and the shorter my days have gotten. the last couple of weeks i've been dragging myself out of bed at 10am and then crawling back into bed by 3pm.  i am exhausted from the endless rounds of the punishing aerobic work out it is to heave my guts out multiple times a day. 


some days, i throw up everything and anything eat - morning, noon and evening. the all day barfing episodes are varied and unpredictable...but without fail, i vomit up dinner every night.
it happens EVERY. SINGLE. NIGHT.


i dread the evening. i dread the day. i dread the aftermath of eating.


oh, and did i mention, i still react to all fruits and vegetables? 
i am obviously nutritionally depleted. i have bags under my eyes. my hair is falling out. my nails are splitting. my face, arms and legs are puffy and swollen due to edema. i'm having difficult-to-control hypoglycemic episodes.

i am listless. 
i am restless.
i am twitching.  
i am grumpy. 
i am irritable. 
i am frustrated. 
i am exhausted. 
i am having terrible mood swings to boot.


yippeee, i'm a boatload of fun to be around.


oh, and if you haven't noticed, 
i am currently sarcastic, caustic and cynical. 
which is also a big reason why i haven't been posting. i don't like exposing this side of myself. for pete's sake, who wants to be exposed to it? i tend to hide it well in public. i'll put on a happy face but under it all, my soul softly weeps.

in iv clinic at dr h's getting "fed"

we were down to california last week to see DR H. immediately following our first appointment (on tuesday), i was hooked up to an IV nutrient/mineral/vitamin drip for 2 hours. the following day, i literally wept because i felt SO. MUCH. BETTER. i was so relieved to have some energy and mental stability again. you get used to functioning in this spaced out, zombie like state that you no longer realize how bad you feel or how out of it you are, so when you get your zip back, then it hits you - the past 2.5 months have been bad. this is just really bad.

kids at in-n-out getting "fed"

i broke down in tears during our second appointment (on friday). i just didn't want to go back to Canada. i want to stay close to my doctor. i want to be where i am taken care of. where i don't have to ask, beg or fight for some sort of medical intervention. with tears sliding down my cheeks, i just sat there, staring at DR H. i have to go back to canada - but what the hek are we going to do once we are back home?


DR H's office is trying to co-ordinate some support here via our family doctor, DR A. he is aware of the barfing because i have seen him several times since it all started. he has prescribed several different meds to try and get the vomiting to stop. but that is it. initially, he suggested he would intervene with some sort of IV intervention - but in order for that to occur, either my weight loss would have to be severe  - or - i'd have to be vomiting blood.
wow, really?
i literally have to be on death's door before i can get help?
to be fair, DR A is a lovely and compassionate doctor. he has always been very supportive of my treatment for lyme. i don't want to be angry with him at all...but i am incredibly frustrated...it's not him. it's our medical system - it seems to be reactive rather than pro-active. blah, blah, blech! and you know what's really dumb? i just read what i wrote and i feel BAD about ragging on our medical system! even after all that we have been through. (clearly, i am seriously unbalanced.) blah, blah, blech!


speaking of "after everything we have been through" scenario (this in regards to our son), i still feel the need to be selective in what i post about him. we are still fighting for his right to receive his USA treatment free from the fear of being taken away from us. we continue to desperately covet your prayers over this situation. it is far from resolved. we have asked our MLA to advocate on behalf of our boy and our plight. the process is moving painfully slow...and it is testing our endurance and patience...


the only time i feel "free" and "safe" is when we are in the USA. 

heading to santa cruz
(parker now spends a large part of every day asleep
 - either in bed or wherever he can rest his weary head)

medically speaking, our boy is not doing well. in the weeks following the forced removal of his PICC line & IV treatment, the decline was swift. DR H and DR D worked like crazy to re-adjust oral medications in order to stabilize him. their efforts did prove fruitful in stopping the initial backslide however, his health has been teeter-tottering in an unstable state ever since - we knew it could go up or continue to go down. unfortunately, the downward trajectory continues to be the status quo. this is hard to explain or help those without lyme understand - especially since he often "appears" to be well. the best way i can think to explain how the downward trajectory is by using an example...he was still on IV treatment during our august visit to DR H. on that trip he only needed his wheelchair in the airport/ travel days. this time, he only had ONE day when he wasn't in his wheelchair. there are many other signs and symptoms that his body and it's systems are not holding up under the onslaught of infection but that is the simplest and easiest comparison. 

getting blood work done at DR Hs

i might add, that he is still so much better than how he was when he first started treatment.  we want to keep it that way - and keep moving toward fully restored health! the last thing anyone wants is for our boy to slide back into the pit he was in 2 years ago. DR H has once again, re-adjusted oral medications and treatment...but we are fighting a battle with one hand tied behind our back as we do not having the full of armament of weapons at our disposal. DR H has given us a timeline for this new treatment to take hold, if it does not turn things around in the time allotted, than we will have to move forward with much more aggressive treatment. your prayers and support over this are invaluable to us.

the nifty laser vein finder thingie

as far as the cause of my vomiting? well, that is still under investigation. DR H has several ideas as far as what the underlying cause of vomiting is...either an atypical presentation of mycoplasma infection or bartonella. or it may be both - i am symptomatic for both. the other quandary at the moment is figuring out what symptoms are infection related or being caused by my nutritional deficiencies. all i know right now, is that i'm in deplorable and fragile shape. there is great concern that if we can't get the vomiting to stop that this whole situation is a train wreck waiting to happen. blah, blah, blech!

we got home from SF on saturday. i honestly had very mixed feelings about being back. as aforementioned in this post, there are multiple reasons for that. i was on the verge of tears for most of the flight home. i tried not to think too hard about anything in order to hold it together. that only lasted 24 hours. on sunday evening, the damn burst. my vomiting was so bad the whole day (the flying exacerbates it) that by evening, i was just physically drained and emotionally gutted. there are some days when it just all hits me and it is just all way too much to cope with. 


i just curled up on my bathroom floor and bawled my eyes out. blah, blah, blech!


sigh.
ok, i feel bad to leave this post on such a sour note. i am somewhat embarrassed to complain and whine so much - after all, we did have some fun while we were away. it was not all blech!

pure joy in the surf at Santa Cruz 

i got to spend 90 glorious minutes browsing through target, ross and marshalls ALL BY MYSELF. thanks to my IV nutrition i actually had some pep in my step and didn't just dazedly meander thru the isles in a fog. it was awesome! we also spent several hours on the beach in santa cruz. this was the ONLY day that parker was not in his wheelchair. he had a wonderful day and was able to play in the waves. we soaked up that sight and the warm, sunny weather we enjoyed for the entire trip. 

Making our Clay-mation movie in the studio
at SF Children's Creativity Museum

we also visited the san francisco children's creativity museum (free admission- nice benefit of homeschooling!). we didn't see much of it as we arrived only an hour and a bit before it closed. we spent that time in their clay-mation studio. oh my word! in my opinion, this is the best place ever! it was the highlight of my trip! really! - i dare say, it even edged out my shopping excursion...yes, really, it actually trumped target! ahhh, i can't believe that just came out of my mouth! blah, blah, blech!

"Ophelia, The Shopping Diva Octopus"
(MY clay-mation character)

LIGHT UP OUR LIFE!

May is Lyme Disease Awareness Month!

There are multiple ways to spread awareness about lyme and show your support to those of us fighting this insidious disease.

Lyme Disease is an "invisible" disease - from all ends of the spectrum. most of the time, people with lyme don't "look" sick. this makes it hard for people to understand just how ill they are. this leads to misunderstanding, skepticism and isolation. folks fighting lyme often face ridicule and hostility before being all together abandoned by the non-literate medical community. those in their support network begin to question the validity of their illness...'if they were really "that" sick no doctor would refuse to help or treat them'. in time, they face isolation and hurt as friends they thought they could count on choose to walk away. either burn out from the length of the battle or skeptical that they are really "that" sick. 


lyme is isolating, painful, frightening, debilitating and deadly.

here a 2 simple ways to let us know we are not alone:


1. turn your porchlight green! green lightbulbs can be purchased at target or canadian tire for roughly 2 bucks. (if these 2 chains carry them, i'm sure they can also be found at home depot, walmart, or zellers.)  


2. turn your FB profile pic green! i have an album of lyme related pictures and slogans - like some contained in this post - it would be great to see my friend list glowing green... even for a day!

light up our life by turning your world green

lyme disease: still cloaked in invisibility & misunderstanding