April 26, 2013

ENVELOPED IN LOVE


my kids got a package in the mail this week.
it came all the way from australia.
a blog reader and fellow lyme warrior sent us a package full of love from down under.

amazing how a stranger can reach out over the miles and make you feel enveloped in love.




a friend dropped by with dinner for our family this week.
cooking up a storm for us on her day off.
accompanying the delicious meals was an envelope 



the envelope contained a cheque.
a cheque that will pay for one dose of the IVIG medicine that sparky needs.

amazing how a friend can give so much. love so much. care so much. (& cook so much!)

the arrival of this envelope means that we can start IVIG within the time frame that DR H wanted. if all goes as planned, sparky will have his first IVIG infusion in 3 weeks! 

amazing how God keeps meeting our needs.

as i sat here writing this post today, a friend sent me a message on FB
telling me to check my email inbox

there in my inbox was a letter from her.

she wants to start a campaign to help raise the funds we need for sparky's treatment 
and 
she has a plan she's just about ready to launch.

her letter is a labor of love 
and
a letter of hope.

 amazing to have a friend put their love into action on your behalf.




humbling to be so enveloped in love.  

amazing how God is walking ahead of us. 


even in our most desperate hours, He envelopes us in love.





April 23, 2013

HONK...TO BE HAPPY

i read a post on the blog, a holy experience, today. a touching story based on the sign, "honk if you're happy." the following is an excerpt from this blog which is written by ann voskamp... but, please take a moment and go to this link to read the whole story and blog post. you'll be happy you did! - 



HONK IF YOU'RE HAPPY?!

"Who doesn't roll his eyes at such naivete? As if the world is this strange hybrid of Pollyanna and Sesame Street - if you're happy and you know it, honk, honk - when it's really just a strange new, old world, broken and a a mess." 

"See what happened to him? The sign said, 'Honk if you're happy'. And he discovered that the act of honking the horn - it made him happy. It's not the honk if you're happy. It's honk TO BE happy."

reading this blog post today was incredibly fitting. after all, we had our own experience with happiness honking this weekend. it started with a text from taylor.

his GF, mara, has a dog. 
his name is ghost.
taylor often "babysits" ghost.
apparently, he believes that requires matching attire.




my great big, grown up son is completely enamored and in love with this 10lb precocious ball of fluff. 
precocious? a dog? yes, this dog is. 
ghost is precocious. 
taylor often regales us with stories about ghost.
ghost stories. 
c'mon, admit it, that made you smile, didn't it!



for example, he taught ghost to give kisses. 
it meant repeating "give me a kiss" a million times over
but, he finally got it.
so no big deal. a lot of dogs do tricks
except no matter who says, "give me a kiss", ghost automatically runs and gives taylor the kiss. every. single. time.


so my son and ghost have forged a bond 
and we hear about it ALL the time. 
taylor talking about ghost is like a proud first time parent who thinks their baby is the best, brightest, cutest, most unique humanoid to ever grace the earth.
no exaggeration.

on more than one occasion, he's been known to bring ghost by for a 'playdate' with harri. something to do with wanting to socialize ghost. teach him to share and play nice.



so it was no big surprise when i got a text this weekend with another ghost story.

it goes like this...

taylor and mara were out and about with ghost. they popped into a restaurant to pick up some take out. while they were inside waiting, they could hear the blaring of a car horn. 

taylor was like, "who is the idiot sitting on the horn in the parking lot?"

the honking continued on and on and on.

exasperated, taylor peered out of the restaurant window.

there was but one lone car in the parking lot. 
mara's car.
and there, happily peering over the steering wheel, was ghost. upon spotting taylor, his horn honking reached a feverish frequency.

beep beep. beep. beep. beep. beeeeeeeepppppp!

he honks incessantly every time they leave him alone in the car now.

can't even gas up the car without ghost serenading them with his maniacal honking.

i giggled as a read the text...entertained by another ghost story. 

then he sent me video footage of it...
and i watched it and just laughed and laughed...shamelessly hitting the repeat button over and over...it's not just the sight of a dog honking a horn, it is the pure look of happiness on ghost's face. 

he just looks, well, so darn happy (and a bit bratty)!

you just can't help but smile and be happy. and the funny thing is that happiness is contagious... and in this case, accompanied by loud. blaring. blasts. 

my thoughts immediately went to my sparky boy. he had been tucked away in his room for most of the day- in too much pain and too fatigued to get out of bed. i didn't want to disturb him if he was sleeping as that is often the only way to escape the relentless pain but i knew this would brighten his day. i crept upstairs, gently edged his door open and poked my head into his darkened room. there he lay, flushed cheeks, eyes dull with pain, harri nestled in at his side



"how ya doing buddy?" i whispered. dumb question. the answer obvious.

"i hurt mom. it's so bad today." he grimaced back. 

"i've got another ghost story...this one comes with a video...you feel up to viewing it?"

"sure..." a faint smile graced his parched lips.

video



me - perched on the side of his bed, he - aching body propped up on bended elbow, his tousled head leaning on my shoulder, our necks cricked to peer at my phone's little screen we watched that little video over and over and in that darkened room where suffering suffocates light, 


giggles erupted and happiness happened

and merriment rose in his sallow eyes
and life came to his grimacing face
and tension eased from his furrowed brow
and joy came to my heart 

and long after i had left his room, his giggles followed me, their melody music to my ears.

honk...honk to be happy.
maybe ghost is the smartest, brightest, most humanoid dog to ever grace this planet.
just don't tell harrison i said that.






April 21, 2013

AN UNFOLDING MIRACLE


a few posts ago, i wrote about sparky's need to receive a treatment called IVIG. we have been fighting to get him this treatment for close to a year. he sits right on the threshold of meeting the criteria to receive this treatment in canada. if it was doctor prescribed in canada, it would be covered by insurance. it is an expensive treatment at a cost of approximately $10,000 per dose.

in canada, this treatment is generally reserved for those with certain autoimmune conditions or those patients with immunoglobulin deficiencies (primarily immunoglobulin G). sparky fits the criteria for immunodeficiency. lab tests revealed he is low in all three of the primary immunoglobulins that help make up the immune system. they are called IgM, IgA and IgG. the IVIG treatment replenishes the IgG levels. additionally, sparky has chronic low WBC, high lymphocyte count and high CD 19 B cell counts. these results show that his immune system is depleted and has gone into over-drive.

so, yes, his immune system is depleted AND hyper active! confusing right? the hope is that IVIG will treat both these issues that are seemingly at odds with each other. the aim of IVIG treatment is two-fold; the first is the infusions will "top up" the IgG levels of the immune system. by replenishing the IgG levels, his immune system will be better equipped to fight his infections. secondly, a better equipped immune system can respond to infection and work more efficiently - rather than hyper-reacting. 

to meet the canadian criteria for IVIG, a patient must exhibit deficiencies in these antibodies (primarily IgG) as well have a history of chronic infections. so he fits the bill...one would think, right? the problem is the immunologist he has been seeing doesn't see his history of chronic lyme as evidence of a prolonged and severe response to infection. duh. i know. bang head here.
we've tried to change this opinion for many months. but in the end, the door to medical treatment in canada was slammed shut with a resounding thud. 

this put us between a rock and hard place. a few months ago, we weren't even sure that it would be possible to access this treatment thru the USA. at our last appointment with DR H (end of Feb) all of this was discussed. he began to move forward with researching options. in the meantime, he prescribed the balls to wall treatment as a one last ditch effort. the hope was that this very aggressive course of treatment would be enough to miraculously turn things around enough that it would negate the need for IVIG. 

it has not. there has been little response - good or bad - to the balls to wall treatment.

i had a follow up phone appointment with DR H 2 weeks ago. we discussed the fact that there has been little change in sparky's condition. so, the time has come. he believes that sparky is in dire need of IVIG. while on the phone with me, he called a neurologist in connecticut to see if he could take sparky on as a patient and get the ball rolling on IVIG...the treatment cost alone would be $30,000 plus doctor's fees and travel costs to connecticut.

i got off the phone with DR H and prayed for a miracle. 

aside from the mind boggling cost, we had reservations about him undergoing this treatment so far from home in the USA. there is a slight risk of a serious allergic reaction or other complications occuring. as much as our faith in the canadian medical system is frayed, we'd really rather be in our own country for a medical emergency...even if there is only a small risk of an adverse reaction.

we just simply prayed
and
we asked you to pray.

pray for a miracle.

fast forward and i have great news to share. 

connecticut is out!

DR H called the beginning of last week to give us the good news that he would be able prescribe the IVIG and that he had been able to find a pharmacy that could provide the medication for a substantially lower cost.

this meant that we would not need to travel to connecticut. we would just need to travel to SF every month for the next 3 months in order to receive the treatments...or, DR H said, if we could find a canadian doctor to supervise the 6 hour long, twice per month infusions then we could have them done here.

again, we prayed for a miracle.

by last friday we had a canadian doctor lined up to supervise the infusions in a clinic.

accessing IVIG treatment has been near impossible for a year... and now in a matter of 2 weeks, it has become possibility. one thing this journey has taught me is to expect miracles. our God is the God of the impossible. how else have we made it this far? sure, it would be far simpler (and a whole lot cheaper) if God just reached down from heaven and supernaturally healed us. i know, right! yet, He has not. rather He has taught us to seek His direction, walk by faith and Trust Him with the directions and details. after all, He has the master plan.



when it comes to this next path set before us, i have a keen awareness that God's hand is over it. this treatment is a serious undertaking. there are risks involved and there is no guarantee that this will work or help. yet, over the course of the past 2 weeks, the concerns that we had, have slowly melted away. we have had 3 doctors that specialize in treating lyme all conclude that this treatment could be the game changer. that this could put sparky in remission. that this may finally bring relief to his suffering. sparky was seen by our seattle doc, DR D, this week. she has a different way of approaching things, so we were curious as to what her opinion would be. after examining and evaluating sparky, she concluded that IVIG could be "the big wow".

there are some minor details to figure out and still one major hurdle to leap but we feel we are standing on the precipice of an unfolding miracle. the biggest hurdle is financial. we have been able to reduce the cost of treatment substantially but it will still cost us roughly $10,000 out of pocket. we do not have $10,000...but we have been to the bottom of the barrel before and somehow, someway God has provided. often in miraculous and humbling of ways. why should we expect now to be any different? indeed, He has already began to meet our need - last week, a teacher (from sparky's former school) approached us and asked if he could help raise funds for IVIG. he hosts a charity golf tournament every summer. he, along with other organizers, will be designating half the proceeds from this year's tournament to sparky's treatment. we are blown away! while we are not sure of what the outcome will be, this has given us hope and will help to bring us one step closer to IVIG.  





above all else, we strongly believe that God knows what sparky and his battle weary body needs. He is the great physician. right now, IVIG seems to be the way to go.

we are praying and moving forward in faith, trusting for His miraculous provision.



April 17, 2013

WHEN TEACHER BECOMES STUDENT

i've continued to home school sparky this year.

he is now in grade 8.

he got sick at the beginning of grade 5. by january of that grade year, he was no longer able to attend school. grade 6 was a complete write off. he was far too ill to attend school and too cognitively challenged to even work on school at home. last year was the first year we did home-schooling. yes, stepping back into academics...with mom at the helm. scary.

with blood, sweat and a whole lot of tears (on both our parts) he successfully completed the core subjects of grade 7. he is one determined kid.


this fall, he chose to take on science 8, socials 8 and continue working thru math 6. the faculty at the distance ed school that we are utilizing for materials and support, cautioned that they don't normally recommend students do more than 2 courses at a time. and that is the kids without challenges. however, sparky was eager and i did not want to discourage his enthusiasm. 
Gold panning skills in Ft Langley - Sept 2012
so he motored thru all 3 subjects sept and oct....until mid october when the problems with his eyes began and then the subsequent over all deterioration set in. again, we watched this disease snuff out his abilities - brain fog crept in and clouded out thought. brain fog. hmmm. it is more than that. 
so. much. more.
it's irritable brain.
it's inconceivable.
lyme hijacks your brain. 
it's thinking and thinking and not being able to think all at the same time. it's how i used to try to count to 10 but couldn't get past 1. or making it to 3 and then losing count - even tho' i'd kept track with pen and paper


and the worst is the undulating frustration and panic that overtakes you in those moments. the desperation derived from knowing that you no longer know what you knew before has a taste, a smell, a pulse, a thousand physical sensations. forehead crinkled in frustration, tears slide hot fury down your cheeks, throat contracts tight, fist pounds table, pressure squeezes your head from the inside out...until all that is left of you is a huddled up ball, liquid pain washing over scorched body and mind
or
eyes glazed, face contorted, hands claw at air, turned inward toward face, clenched and shaking, mouth gaping as fury searches for its voice. rage builds as pressure deep within until it bubbles and explodes in white, hot fury and walls are pounded, doors slammed, pencils snapped as fevered, flaming brain beats a staccato manic rhythm in your skull, each pulsation presses in and there is no escape as the fury roars forth. 
then comes the nothingness. 
the blank stare. 
the caged feeling. 
the knowledge of life around but no ability to interact. to participate. to find words. to feel feelings. 
the world around you fades into oblivion...until it is but a speck on the horizon of your conscious mind


brain fog. benign description. to know that you no longer know what you knew before.

last spring, we tackled language arts. 

we worked on learning to write a paragraph.

the assignment was to write a descriptive paragraph about onion rings
it took an agonizing 4 weeks for him to construct the following:



then he. me. his tutor. all of us labored through endless sessions of re-writes in order for him to meet the academic requirements necessary to call the task complete.





the difficulty and challenge of it was not because he had missed the teaching on how to construct a paragraph. no, in fact, in many ways, he had already mastered those skills. the following picture is of a paragraph he wrote (without help) on sept 17, 2009...one of the last pieces of work he did before lyme came like a thief in the night and hijacked his body and mind.


no, the skills he had possessed at one time...but lyme put his brain on lock down. it crossed the wires in his brain and snuffed out thought and reason. following a thought from beginning to end were an enormous challenge - never mind, then trying to process a thought enough to write it down.

fast forward now to this past fall.
just before his brain was hi-jacked again.
socials 8 assignment. 
construct a "bone oracle" and write about a day in your life.

Making a tortoise shell oracle
his brain was hi-jacked again within a week or two of writing the essay. and i forgot to celebrate this accomplishment. i got caught in the grip of the grief of watching this unfurling process steal his brain from him again and it's easy in those moments, in those months as they agonizingly drift by, to forget that there have been improvements, change has occurred, that he is still sick, that none of this is normal, yet he is better than he was before...he's come a long way. he is one determined kid.


oracle in process

i re-read his essay this week and i just had to share

The completed project

Hi. I'm Sparky. I'm 12 and I live with my mom, dad, and sister Avery. She is 9 and a pain in the butt but I love her. I, also, have a brother, Taylor. He is 20 and he lives on his own now. I miss him a lot but he comes over to visit. He is an awesome big brother and we have fun playing video games together. Next fall, he is moving to the UK to join the Royal Marines. I have another brother, Harrison. He is definitely not soldier material. That is because he is a dog... a very lazy, fat dog.


I am a rather complex dude. I have an interesting life. In some ways, it is very different than most kids my age...for example; I spend a lot of time with doctors. In fact, I spend so much time in various doctor's offices that I do most of my school work there. Heck, I'm even doing this assignment in a doctor's office! So why do I spend so much time in doctor's offices? Well, it is definitely NOT because of the magazines in the waiting room! When I was 9, I got really sick with several bacteriological infections. The infections are called lyme, babesia, bartonella and mycoplasma. You can get them from the bite of an infected tick. Did you know that ticks can be as small as the period at the end of this sentence? Crazy, huh?


The doctors in the country I live in (Canada) do not know very much about theses diseases and so it took a really long time for them to figure out what was making me so sick. Actually, the doctors in Canada couldn't figure it out! My parents had to take me to a specialist in another country (the USA). I was sick for 6 months before I was finally diagnosed and started on medicine to fight the disease. During that time, the bacteria invaded my brain, spinal cord, organs and tissue. The bacteria that cause my illness are really smart and crafty jerks and are sometimes smarter than the medicine I take to kill them. There is always a major war going on in my body. It makes my bones and brain hurt but I am a fighter and in the end, the bugs will lose.

Aside from warring with bacteria, I'm pretty typical. I like to mountain bike and play basketball. I like to tease my sister. I like to play video games. I like to make stop motion videos. I like to cook and bake.



Hey, why don't I tell you about a typical day in my life in the year 2012?

I wake up and eat my favorite breakfast in the whole world - BACON! I, also, have to take a handful of pills and a liquid medication called mepron. That stuff is so gross! It is like bottled evil! You can't shake the taste. Unfortunately, taking it is a necessary evil!



Then my mom and I go to the doctor's office. I get medicine through IV there. We are generally there for over 3 hours, so I do my school work there. We kinda take over the entire office.


After leaving the doctor's office (aka "my classroom"), I can sometimes sucker my mom in to buying me a pumpkin scone from Starbucks on the way home.
BEST. STARBUCKS TREAT. EVER! They only have them in the Fall. On the drive home, we listen to a band called Mumford and Sons. My brother Taylor got me addicted to listening to them. Actually, my whole family loves them now!

The Cave Lyrics - Mumford and Sons

By the time we get home, it's lunch time. If I had it my way, I would eat a sub sandwich everyday. My favorite kind is turkey with with nearly every topping known to man included on it. MMMMMM, lettuce, cucumber, pickles, peppers, black olives, pickles, tomatoes, jalapenos, and ranch dressing...did I mention pickles, yet? I love pickles!


After lunch, I get some free time. On my free time, I usually play NBA2K13 or minecraft on my xbox. I like playing NBA 2K13 because I love basketball - I have been playing NBA games since I was little. 


Sparky shooting hoops as a wee gaffer
Actually, I have been playing real basketball since I was real little. It is my biggest passion in life. I hope to play it professionally one day. No matter how terrible my illness makes me feel, I try to shoot hoops every day.


Another thing I like to do during my free time, is play with, tease and chase my puppy. His name is Harrison - aka "The Ooshy Booshy Boy". But that doesn't usually work out because he is so super lazy.


In the afternoon, my math tutor, Ronald, comes over. A tutor is kind of like a teacher that comes to your house to help you with school work. He works with me for about 2 hours. After that, I am usually brain dead. However, if my body is feeling okay, then I play some basketball. My favorite game is 21. I like to play with my dad or my brother if he is over.

My favorite dinner meals are ribs or pulled pork sandwiches. Ya....I really like pork! Most of the time, we eat dinner all together as a family around our dinner table. We talk and we tell jokes. If my grandparents are over, we talk "politics". That doesn't generally go so well.


In the evenings, I do more IVs.



THE GOOD: I can do these IVs at home.
THE BAD: My mom hogs the TV and I have to watch stupid TLC shows.

After my IV and taking more pills and gag, more mepron, I head to bed.

So that is a typical day in my life. Some of it is unique to me, like the medical stuff and Lyme Disease. I hope ticks will be extinct in the future or, better yet, I hope that one day there will be a cure for Lyme and all the co-infections. The sickness stuff is just one part of my life. As you can see, when I can, I still do things that regular kid would do - like playing some sports, playing video games, joking around and eating as much bacon as possible. Bye!


today, i celebrate this accomplishment
and
in doing so, i lay aside grief, stare lyme down, and this clears the way for me to see the miracle that this is...

that this disease has not hijacked him. 
 
my kids - 2007
it may steal his mind, his body, his ability but it has not stolen him.
it has not snatched the essence of who he was before lyme.

he has lyme 
but 
it does. not. have. him.
or 
his determination 
his perseverance 
his courage
his dreams
his humor

Grade 1 sporting his coveted "baller 'fro"

his smile 
and
his spirit...
he remains as sweet, soft, and sensitive as he always was.


in march he told me he'd like to grow out his hair so that he can donate it to locks of love. 

in the midst of his suffering, he thinks of others.

i learn a lot from him. 
i set out to teach him but it is he who teaches me.

Sparky and me - Santa Cruz, Feb 2013



April 11, 2013

THE YEAR OF BARF


here is a not so brief review of my one year long, ongoing barfing saga...



on march 14,2012, i started vomiting daily. meals would come up wholly undigested 4 hours after eating them. the condition was diagnosed as gastroparesis (partial paralysis of stomach). no one on my medical team jumped the gun and immediately assigned lyme as the underlying cause. DR H suspected an infection called mycoplasma pneumonia was the trigger. in the general population, this infection presents as pneumonia. of course, i had no respiratory symptoms... but mycoplasmas are heinous little microbes that can provoke unusual neurological symptoms in immuno-compromised individuals.

sure enough, lab testing revealed that i had an acute and active mycoplasma pneumonia infection. i was put on several courses of abx treatment for the mycoplasma. it didn't stop my vomiting however the food that i barfed up was more digested so we new there was or at least had been some connection.

yet, clearly, the mycoplasma infection was not the only trigger behind the vomiting. but what else is behind it? neither my docs nor i were convinced that lyme or my co-infections babesia and bart were to blame. there were a multitude of other possibilities. so we've spent the better part of this past year, trying to treat and address it from every angle - holistic, homeopathic, herbal, nutritional support, digestive enzymes, hormone, detox, psychological, emotional, stress reduction, trauma therapy, chiropractic, etc...but fast forward one year down the road and despite implementing these varying methodologies and treatments, i'm still vomiting nearly every day. 

investigating the vomiting has meant i've once again been bounced around from specialist to specialist in the mainstream medical system. this has been one of the most frustrating parts of this whole year of barf. really, the doctor's appointments have been far more difficult to endure than the part where i'm bent over a toilet bowl every nite hurling my guts. we've been very, very careful and guarded in what we say about lyme or my history with it when meeting each new specialist. as much as possible, we have approached the issue of vomiting as a non-lyme issue. after all, over this past year, i have not been on active treatment for lyme. it is fair and truthful to say that i had needed extended treatment for lyme but that i was no longer being treated for it and most of my lyme related symptoms had resolved.

upon hearing this, an internist i saw, stated that seeing as my lyme treatment had taken years that it was much more likely that i had just had a spontaneous recovery of my symptoms rather than an actual response to treatment.

still scratching our heads over that logic.


a visit to a neurologist morphed into a 2 hour appointment in which he felt the need to enlighten us on the issue of lyme. he told us that it is his public duty to let the general public know that lyme is a cult. 

i simply responded that i had been severely disabled by lyme for many years. i had been treated for it and my most disabling symptoms had resolved. 

to which he responded, "i could care less whether or not you had lyme. maybe you did. maybe not. good for you if you feel better. the only reason you are better is because you did not get sucked into the vortex that is the cult of lyme." that is verbatim. word for word. i recorded the conversation.

needless to say, these comments are infuriating. troublesome. grievous. enough to set anyone's stomach churning. and blood boiling. 


what became necessity this year was that every appointment with each new doctor was followed up with a trip to my trauma therapist. 

it took awhile to find a GI doc that was willing to listen and not jump to conclusions. i saw my first one back in july 2012. graham had come with me to this appointment to help explain my strange barfing and to provide "back up" - as we knew that a barfing woman can easily be labelled bulimic. i'm not naive to that. 

we told him i vomit exactly 4 hours after i eat. i have no nausea. i have no pain. the food just simply comes up and is not digested. graham explained to him that my vomiting happens everywhere or anywhere - on the side of the road, in parking lots, restaurants, doctor's offices, airports etc.



he was nice enough but i didn't feel like he was really listening to me. within minutes of our appointment, he was wanting to refer me to another specialist. i ended up leaving his office with a referral to another specialist - upon googling the name of the doctor we discovered the referral was to the head of the eating disorder clinic in our city. argh! i was royally and fantastically choked about that. nonetheless, i was willing to go to the appointment. at this point, i was becoming so nutritionally depleted that i was willing to take whatever help i could get. i just wanted someone to assist us in solving this barfing fiasco. 

so the referral to the eating disorder doc was sent in. come to find out, that it is a 6 to 12 month wait to get in to see this doc. i phoned the GI doctor back and said that it was an unacceptable amount of time to wait. if i have to wait that long i will either be dead or will have vomited up my stomach by then. furthermore, this is not a psychological issue. it is either neurological or mechanical. find me a doctor that will investigate it. several calls later and i finally had an appointment with the internist. 


at least that was only a 7 week wait. 

aside from enlightening me with her spontaneous recovery theory, my first appointment with the internist went okay. she confirmed that the GI doc had indeed been dismissive and had termed me a "functional vomiter" which is doctor speak for self-induced vomiting. fortunately, by the time i saw her, i had seen an immunologist that had confirmed that i had a mast cell disorder. additionally, i had positive lab results for immunoglobulin deficiencies. all of this, she felt provided evidence that there was something physical going on. she believed that the complexity of my immune system issues and mast cell disorder warranted the need for me to have an endoscopy and stomach biopsy.

she personally called the original GI doc, explained her findings and asked him to do an endoscopy. i wasn't particularly pleased at the thought of having to deal with a doctor that had blown me off the first time around however, we wanted the process expedited and getting into see him would be faster than having to start with a brand new GI doc. honestly, upon learning i may need to see him again, i did toss around the idea of timing my visit with him to co-incide with my vomitous hour of the day. i daydreamed about walking into his office and just spewing all over his desk. when i shared this little plan with graham, he wisely suggested that that would probably only earn me the label of "performance vomitter". ha ha. 


the GI doc told the internist that his office would call me to schedule. they never did.

it took 4 months to get in with a new GI doc. i finally saw him in feb 2013. thankfully, this guy seems to have been worth the wait. he listened. was not dismissive. and at the end of our appointment he said, "look, if it's alright with you, i'm scheduling you for an endoscopy and i'm going to biopsy the hell out of your stomach."

guy doesn't mince words.
my endoscopy is scheduled for this coming monday, april 15.

in the meantime, we still have a few theories that are under investigation. we're having to systematically go through and test each theory out and that just takes time. a whole lot of time.

at the end of january, after a lot of research, my LLMD's considered the possibility of my vomiting being due to a type of abdominal migraine and/or Cyclic Vomiting Syndrome. i don't exactly fit neatly in the diagnostic box for it but hey, i'm generally an outside of the box patient. after all, i had pneumonia with NO respiratory symptoms. weird or what?! 


there is no way to "test" for abdominal migraine other than to treat me for it.   i waited to start treating this until we saw the new GI guy. we discussed with him the possibility of this being a abdominal migraine issue and he concurred that it was certainly a possibility. he agreed that i should start the treatment for it. the good thing is that the treatment is fairly benign. it is comprised of 3 medications. 2 are natural - l'carnitine and coenzyme Q10 . 1 is prescription - amitryptaline. i have been on the first 2 since february. about 2 weeks after starting them, i had 4 barf free days in a row!! outstanding! we were ecstatic and thinking we'd finally solved the barfing puzzle...until my vomiting returned with a vengeance on the 4th day. HOWEVER, since starting this treatment, i do have about 5 days per month where i don't barf. believe it or not, this is an improvement! prior to that, i had had NO barf free days for 11 months straight.




the last issue we're looking at is hormonal imbalances. there may or may not be a connection to the vomiting. as this year has dragged on, a bit of a pattern has emerged. my vomiting certainly intensifies and becomes more prolific during certain times of the month.  my hormone levels have recently showed a slight imbalance between my estrogen and progesterone levels. 

once i get thru the endoscopy, i will be starting on a progesterone medication and a supplement called DIM to help correct the imbalances.

who knows? maybe, just maybe, a little progesterone will be what it takes to bring my year of barf to an end.