October 31, 2011

SPOOKTACULAR!


last week, when we were at the hospital to check on viral picc (parker's picc line) he had an x-ray of his chest to check on viral picc and where he was hanging out in parker's chest. turns out he's much higher up than he should be,  however we already knew that. there was no clot. and the IV nurses deemed him acceptable. they also commented on what beautiful bone structure parker had. okay, he was like, you are wierd and i am totally embarassed. it was cool to see and they let us take a picture of it. considering the time of year, i thought it was pretty spooktacular.




speaking of that time of year, tonight is hallowe'en. i've been dealing with a rather low lying level of anxiety as the month of october marched on. last year our home was a house of horrors. i've been reflecting stuffing it down and trying to ignore the trauma of last october. yet, worry and fear that that could happen again have ebbed in now and again as the date approached.


i put on quite a spooktacular show the end of october last year - 911 had to be called, the police showed up, and an ambulance whisked me away. i begged everyone to just let me die. i was in a very dark place. at the hospital i underwent a lovely round of psychiatric evaluations. due to a bed shortage in the ER, i ended up in a bed in the casting room. a special type of box cutter used for cutting casts was within arms reach of my bed. but that's ok. the nurses made me promise that i wouldn't try to hurt myself with it. 


obviously i kept my promise. 
the casting knife remained untouched.
psych evaluation concluded that i wasn't crazy nor having a nervous breakdown...rather, my psychiatric symptoms were due to infection. 
thank you bartonella for the traipse through hell.
DR H immediately started aggressive abx to target the bartonella
for the next 6 months, we battled bartonella with a battery of abx artillery, in fact, i was still on a med for bartonella up until august.


as the end of this month has neared, thoughts have been pressing in on me; 
did we slay the bartonella beast? 
is it truly dead and gone? 
what if i go off my rocker again?


i'm pleased to report i haven't. in fact, i took the kids trick or treating. i dressed up as myself... and i did not terrify any small children nor display any signs of erratic behaviour. in fact, we had a wonderful evening. after a wee bit of trick or treating, we piled into our van and made our way to our friend's home. we socialized and had a ball until late into the evening.


last year i was suicidal, bawling and slightly crazy.
this year, i socialized, had a ball and was not the least bit crazy...


ok, well, not quite....the fact that my daughter refused to wear her costume, the very costume that took an epic THREE HOURS of shopping before she found the "perfect" one, did drive me a little crazy! i think it's safe to say that that is enough to make the most stable person a little nuts!



October 30, 2011

A MOST UNUSUAL OCCURRENCE



on friday nite, i had the great pleasure of riding shotgun in a vehicle carrying a dignitary. graham and i had the honor of chauffeuring obama to a hallowe'en bowling party. 






it was a most unusual occurrence


unusual in that it was such a normal thing to do...and that sense of normalcy is such a foreign concept in our home.


parker got sick in september 2009. he was just starting grade 5. he was 9.


aug 2009 


he is now in grade 7 and will be 12 in a month.


aug 2011

a whole lot of huge changes take place between the ages of 9 to 12. in many ways, he was a little boy when he got sick... and now he's on the precipice of adolescence. the majority of this metamorphosis from boy to nearly teen has occurred shut away from everything that encompasses those years...


school. sports teams. sleep overs. socializing. first crushes. running. jumping. carefree adventures. uninhibited movement. boundless energy. naivety. 


our dog, harrison, has a FB page. 




he is a very socially and intellectually advanced dog. he also happens to be friends on FB with a lot of parker's friends. i am not FB friends with parker's friends. a couple of months ago, harrison was updating his FB status. i was nearby, because i was monitoring harrison's underage use of the internet, so i couldn't help but notice all the proverbial tweeny "tweeny-ness" happening on his FB newsfeed. 


there on FB was all the regular, normal silliness that accompanies that pre-adolescent stage of life. lots of talk about who likes who, student council, teachers (only nice things), crushes, farting, belching, birthday parties, events, and more about crushes and lots of emoticons with rolling eyes...etc. etc. etc.


it kinda crushed me. all that normal growing up stuff is so far from the reality of parker's world. was part of me secretly relieved he's somewhat removed from some of that social jockeying for position, the awkwardness of this age, the growing pains, the pressure to conform, and the heartbreak of unrequited crushes? yes! the other part of me was really grieved. he's missing out on some really critical years of social development.  on the flip side, he is well beyond his years. he is learning life lessons that will build into him the traits with which a strong foundation of character are forged. he is developing strength, fortitude, endurance, perseverance, compassion, empathy, mental toughness...but these lessons come at great cost and he is also missing out on some pretty basic childhood experiences... and that is hard. and that hurts. and that is sad. does identifying and acknowledging both sides of the coin, both the pros and cons help? yes...it allows me to process the grief but it doesn't make the grief any less intense.


note to self: allowing your dog access to the internet can be hazardous to your mental health. time to get the dog a new hobby.


swimming, anyone?

this past week, there has been a significant decrease in parker's symptoms. he still has periods throughout the day, when his pain and cognitive dysfunction are very disabling but his evenings have been better. he has a list of many "want to do's". one of the activities on that list of "want to do's" has been to go to our church youth group. he was 'eligible' to start attending last fall.  


it was with utter delight that he was finally able to go on friday nite. it is really one of his very first tween experiences 
and
it was a most unusual occurrence for us to have him be a part of something that is so normal. it felt totally surreal. all of it.


dropping him off. surreal.
letting him go. surreal.
having 2 hours to ourselves! surreal. (at 19, taylor has his 'own' life and my folks had avery)
having a DATE nite! magical. (we celebrated my bday, graham's bday and our anniversary)
me being well enough to go out? will wonders ever cease?
and then 
picking parker up. once again, totally surreal.


upon our return to the bowling venue, we entered into that loud, silly, mysterious world of tweens. the bowling alley was brimming with probably 75+ grade 6 & 7 kids tweens. it was loud. it was stuffy. it was hot. it was loud. really loud.


it was like stepping into a foreign land...and in the midst of it, there stood obama. it was a most unusual occurrence. 


surreal. wonderful. delightful. joyful. 






ps  i would have loved to have a photo of obama AT said event - however he sternly advised us that the mama & papa-razzi were not welcome to photograph him at said event. 







October 27, 2011

STEPPING BEYOND THE WHAT IF's?



“We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” 
                                            ~ C.S. Lewis


last week, we headed to seattle for appointments with DR D.


both DR H and DR D suspect that parker and i have an underlying condition that is impeding our fight and recovery from lyme and company. this disorder is a seperate issue from lyme, but it may have been triggered by it. i hate to be vague about what it is but right now, i feel the need to be.


for several reasons - 


#1 we're just learning about it and have a whole lot more to learn.
#2  right now, our diagnosis is clinical. we will be undergoing some lab testing but this will take some time as the testing can be a fairly involved and lengthy process...
AND 
#3 we have an atypical presentation of this suspected disorder. we are hopeful that lab results will aid in providing a more definitive diagnosis however, just as we've learned firsthand with lyme, lab testing is not always conclusive. (argh) 


why blog about it if we're not "talking" about it?!?


...because we're about to embark on a journey that is requiring a tremendous step of faith and we need prayer. big time.


we are moving forward with treatment for this specific disorder...even before lab results are in. a positive response to the medications will be more confirmatory than lab results AND the medications themselves are fairly benign, meaning they do not have risky side effects associated with them. 


there are 4 primary meds our docs will be using to treat us. these will be staggered in over the course of the next 3 weeks. a slow integration of medications will allow our doc's to track whether or not there is a response to the meds. most likely, it will take another 6-8 weeks before we can expect to have a clear picture of whether or not these meds are working.


so why in the world blog about it if we don't know anything for sure?!? 

...because there is faith and hope but there is also fear and doubt and we are having to step beyond the "what ifs"...


let me be really clear, it is not the treatment for this disorder that we fear...rather, it is the fear that it will not help...that it is not the missing link that are doctors (and we) suspect is impeding our recovery.  


there are no easy answers. we don't know whether this disorder is part of the problem...but we feel very strongly that God has lead us to this place. i hate to label things a "God thing" but certainly we feel very strongly that God has orchestrated the events that led to this possible diagnosis yet we have huge moments of great fear and doubt -  


what if we are totally off the mark here?
what if this is not the missing link?
what if this treatment brings no relief?
what if we're no better off in 6 weeks than we are today?


the prospect of facing that is a crushing fear...this has been a long, grim, fierce, unrelenting battle...and over the past several months, parker has begun to lose hope that he will ever be well again. he is tough, has persevered and overcome so many obstacles. he has endured so very much all the while maintaining his great humor and gentle, sweet, caring nature. in many ways, he is so much better than where he was 2 years ago...but he still is so sick. his life is still very, very, very far from 'normal'. and he is losing faith that he will get better...or that anything will help him. THAT is horrendous place to be. for him... and for us. 


the extremely difficult circumstance is that we cannot promise parker that this treatment will work. we cannot promise him that this is the missing link that will push him past the hurdle and propel him towards the finish line of this marathon fight against lyme and company. we cannot promise him that he will be able to get back to the business of being a kid before his childhood is done.


we simply don't know what the outcome will be
but
we do know that God is sovereign over this 


we feel at peace with moving forward in this next step of treatment...and yet we continue to wrestle with the many "what ifs"...


what if a non-response to this treatment throws parker into a tailspin of undulating hopelessness? 


what if, in the feebleness of our humanity, we've misinterpreted God's leading?


what if stepping beyond the what ifs doesn't end the suffering?


what if...what if...what if...


the "what ifs" are a painful, disheartening and scary prospect to consider 
and
the "what ifs" are precisely why i felt compelled to blog about something i'm not yet talking about.


we need your prayer and support to step beyond the what ifs and have the courage to keep moving forward whatever the outcome.


stepping beyond the what ifs is a matter of faith and trust.


faith in God requires we step beyond the what if's... even when we fear the steps may not lead to the outcome we desire
and
trust in God means believing in His best, in His mercy, in His goodness...no matter what the outcome.

October 14, 2011

BLOODY VIRAL PICC


this is probably as good a time as any to introduce parker's new PICC to you.

his name is VIRAL PICC.




1 DAY OLD


 4 WEEKS OLD 


if you're not familiar with our family's slightly odd, off beat sense of humor, the fact that we named a medical device may be confusing. and the name "viral" may further confuse you. first off, you can read about felix here and and about mortimer here for some background on our family's penchant for naming inanimate objects and assigning them personalities.


you can read about the story behind the name for parker's last PICC, raymond PICC-aso here. in case you are unfamiliar with what a PICC is or what it looks like, here's a picture that'll help you at least visualize what is...


The photo below is Raymond Picc-aso post-mortem... 
he donated his body for the sake of science




between the 2 blue push pins 
is the pressure cap, hub, and wings. those are the external part of the picc. the pressure cap is where IV tubing and syringes are attached to administer medications.
between the green pin and the red pin 
is the long, purple line.that is the part of the picc that is internal.


below is a diagram of a PICC and how it lies internally in the body... i hope the pictures at least familiarize you with PICCs enough to help you understand the rest of this post. (i hope). no worries if you don't, there is no quiz contained in this post. 




the name "viral picc" stemmed from 2 sources - first, "going viral" is lingo for something catching on (usually on the internet) and nearly overnite gaining massive popularity. considering all that we went thru and the buzz that must surely have echoed thru the halls and behind the closed doors of BCCH, well, this new PICC practically went viral before it's conception. ha ha. 


secondly, our whole family and especially parker have been weirdly entertained by a you tube video about "viral dog". click here to watch viral dog. it just really strikes our funny bone...trust me, i doubt few will find this THAT funny but we do. it's ok. we know we're weird. and we're proud of it. we raise eyebrows and elicit head scratching and blank stares where ever we go.


case in point: when parker went for his new PICC surgery, he asked the surgeon if he would be so kind as to give him raymond picc-aso once he had removed him because he would like to take raymond picc-aso home.


graham and parker said the surgeon looked blankly at them and then said, "ummm, i guess so. in all my years as a surgeon, that may be the strangest request i've ever had. i've never had anyone ask me that."




RIP RAYMOND PICC-ASO


ha ha
we goertzens? we're medically weird trailblazers.


viral picc is 4 weeks old today.
and 
we nearly lost him this past week.




last pic of Parker and Raymond PICC-aso 

losing raymond was traumatic. replacing raymond with viral was a nightmare. the mere thought of losing viral is an undulating stresser....as much as we hope the need for viral picc will not be long - we would like him to stick around for as long as we do need him. we do not want parker to have to go thru another PICC surgery... and besides, we're running out of clever PICC line names.




parker waiting for surgery to install viral (in seattle)

when parker lost raymond, we tried to balance the down side and upset of that with looking for something positive to focus on. after all, raymond had been a pain in the butt right from the start. he never stayed in place. with every weekly dressing change, he would inch his tubular body further and further out of parker's body. a PICC can only migrate or move out of it's point of entry in the arm before it is rendered useless. ultimately, in the end, raymond's persistent pushiness and uncooperative behavior caused his demise.  


we hoped that a new picc would be less pushy and more co-operative. that it would hang tight and stick closer than a brother. 




parker with nurse karen in OR (in seattle)


secondly, as awful and upsetting as it was to not be able to obtain a PICC replacement in canada at BCCH, the "up-side" was that a USA born PICC meant that we could choose a different type of PICC. BCCH only uses "open ended" PICCS. i am not a fan of that type. in my opinion, the open-ended lines tend to be more prone to blood clots. 




parker in OR about to meet viral

unfortunately, life is what it is, and viral picc has been just as unruly as raymond. viral is just as pushy as raymond and this has made weekly dressing changes incredibly stressful. and b/c of parker's weird vein anatomy, the surgeon ended up having to use an open-ended PICC.




parker's xrays and crazy collateral vein anatomy


and now, 
at barely 4 weeks old, 
viral's already developed his first blood clot.


argh.
when the nurses come to do the dressing changes each week, they aspirate viral. this is done by attaching a syringe to viral's pressure cap and drawing back until blood return can be seen in the external part of the PICC line tubing. 


blood return is good. 
no blood return is NOT good. it can be a sign of something as benign as the patient being a little dehydrated or indicative of something a little more sinister such as a blood clot.
we were all hoping that dehydration could be blamed. viral could still be flushed (meaning meds/saline would go in) so we new there was not a total blockage (which would have meant an immediate trip to hospital) so we were very hopeful, viral picc was just throwing a little tantrum and the lack of blood return could be blamed on dehydration.
our nurse felt it safe to give it 24 hours and would return the following day to give it another try.


the following day arrived and with it the nurse
no blood return.
and
that which we dreaded most and had hoped not to hear was said, "i'm sorry, we need to send him to the hospital."


parker was in tears and mad. he is so tired of dealing with all the additional complications. more and more, he's been vocalizing his dismay and bewilderment, "isn't it bad enough that i have lyme? why does all this other stuff have to keep going wrong?"
i don't have an answer for that.
i am struggling with those very questions myself.


it was a long drive to the hospital. stress and anxiety hung heavy in the air. parker sat in stoic silence, tears quietly rolling down his cheeks. graham and i tried to reassure him. awfully hard to do when one's gut is in their feet and a lump of tension is in your throat. given our situation and based on prior experiences, we never, ever assume that care will come readily or easily.


we arrived in the ER. and then waited to be seen. canucks were playing. only one TV in the waiting room. the problem? it had been commandeered by a toddler watching sponge bob. the solution? we knocked out the toddler and flipped on the game. ok. kidding. the kid got called in. no toddlers were harmed in the pursuit of hockey viewing. game provided some welcome distraction and helped to pass the time - until the canucks started getting creamed...


fortunately, we were not subjected to their further demise as we were saved by the nurse's call. 


a nurse and doctor came in to talk with us. i explained to them that our home care nurse had sent us to the hospital because she suspected that parker had a blood clot in his line.  thx to the whole PICC debacle with raymond, our home care nurses have a better understanding of exactly what we face and had called the IV team to let them know that we were coming. the IV team knows all about us...and was wonderfully supportive thru our last ordeal. they know that parker has a new PICC.


once we were finally called in, i naturally assumed that the nurse that came in to see us, was one of the IV team nurses. we were a little caught off guard by her grumpy and unfriendly demeanor. she flushed parker's line and declared nothing wrong with it.
i was slightly bewildered by that as our home care nurse is the head nurse for our city. there is just no way she would have sent us down there without good cause for concern.
i cautiously re-iterated the reason for us being there.


"no" she said, "if there was a blood clot it would cause a total blockage and i wouldn't be able to flush his line at all."


keep in mind, the doctor is standing there listening to all of this.


"well, our home care nurse is concerned. there is more resistance in his line when she flushes it, his IV fluids are not running as easily and she has been unable to aspirate." my heart was pounding in my ears. 


"what? you don't aspirate picc lines! we never aspirate picc lines." she scolded.


ok. super awkward. i didn't know how to respond - here is the thing i've learned that PICC care protocols do vary city by city. so, this could very well be the case. however, i also know our home care nurse is an IV educator...and i know she has been in dialogue with the IV team at BCCH in regards to parker's PICC care and at this point, i still thought that this nurse was one of the IV team nurses...so i was totally confused that i was getting such conflicting information.


"it flushes fine for me. we don't aspirate piccs. you can go home." she dismissively said


none of this made any sense to me - i didn't want to offend this nurse nor question her expertise but i just had a gut instinct that this needed to be pushed. i was not leaving without further investigation. period.


"well, our home care nurse is very concerned that a blood clot is forming. our understanding of why she sent us down here was because his line should be looked at and possibly TPA'd. if there is a small clot than she wants us to be on top of it before it causes a total blockage."


"what? TPA? you don't use TPA. TPA is a dangerous drug - we only use it in cardiac arrest or stroke patients." she huffed


oh lordy. i'm thinking was i hallucinating when our home care nurse explained everything to me? am i way off in my understanding here? i didn't think so. the open ended picc type is new to me, but i'm also no spring chicken here - i've dealt with 4 picc lines (b/n parker and i). i'm no nurse, but i do know a thing or two about picc lines.


and keep in the mind, the doctor is still standing there, taking this all in.


we were completely bewildered. but i am stubborn and i don't easily back down.


"oh my!" i said, "maybe i've completely misunderstood our nurse. i certainly don't want to introduce a dangerous drug to my son...however, i'm feeling worried and concerned and not comfortable with the resistance in his line. i KNOW that it is not running how it should be. is there anyway, aside from flushing it,  to just double check that there is no blockage?"


this is where the doctor stepped in.


"well, that is reasonable." the doc said, "why don't we do an x-ray? sometimes piccs can move slightly out of place and that can cause problems."


hallelujah. the voice of reason. and the doctor was so super kind and sweet. 


off to xray we went.
still completely perplexed by the whole thing. so odd. and i don't know what was more odd - that the nurse was so argumentative and unwilling to help OR that the doctor was so pleasant and willing to help!! usually the complete opposite.


wasn't long before it finally all made sense.


the doctor came back in. xray was back. there was something up. and then she went on to explain, 


"my apologies for the ER nurse. we don't generally deal with PICCs in the ER. she was right in that they never aspirate PICCs - in the ER anyway and TPA is used in cardiac patients but the information you had is also correct. IV nurses do aspirate lines and they do administer TPA when there is a blood clot. i have now called the IV team. one of the nurses from the IV team will be down to see you shortly. if she determines that TPA is needed than i will write the prescription for it."


i nearly passed out. 


i have to say, this visit was a positive one. nice change. 

we absolutely LOOOOOOVED the IV nurse from the hospital IV team. she was wonderful! she already knew all about parker (in fact, she had been one of the very supportive nurses he saw during the raymond PICC debacle) as soon as she walked in, and we saw a familiar, friendly face, we were truly at ease...probably for the first time in the history of our hospital visits. it was total gift. 


the x-ray revealed that parker has a kink in his new line, viral. part of what contributed to the demise of his old line, raymond (aside from being super pushy) was that he developed a kink too. argh! this was upsetting to hear - kinks in lines do happen according to our IV nurse, but they are pretty rare. to have a kink develop in 2 different PICC's in the same patient is even rarer. kinks SUCK! and with an open-ended line it means his risk of developing blood clots is higher.


parker is so super sick of dealing with weird and rare occurrences cropping up in his life.


the IV nurse was concerned that it was the kink causing the problems and not a blood clot. IF the problem was mechanical (re: kink related) than there is little that can be done...which means we were looking at losing viral. we nearly had a coronary...forget TPAing viral, i NEED to be TPA'd.


the other possiblity was that there was a small clot forming at the site of the kink. she said that she would administer the TPA and then we cross our fingers and our toes. if it works and the line could be aspirated, then the problem was stemming from a clot. if not, then it's mechanical.


the TPA was administered into viral. TPA is a high potency blood thinner that is able to dissolve blood clots. we told parker it is like liquid draino for viral. the TPA is administered with a syringe and only enough is administered to "fill up" the length of the internal portion of the line. it is than left inside the line for one hour. one can only hope and pray during that hour that it is working it's magic on the clot. when the hour is up, a syringe is attached to the pressure cap and the TPA is "sucked" (aspirated) out of the line. if it has worked than there should be blood return during this procedure.


it was a LONG hour.


the nurse returned, she attached the syringe, began to aspirate and we all held our breath....


BLOOD! BLOOD! BLOOD!




i have never ever thought i would be so ecstatic to see blood coming out of my kid!


we were all whooping and hollering and high fiveing...even the nurse! i turned to her and exuberantly blurted out, 


"you are a bloody awesome nurse!"


ha ha. i know...totally inappropritate tongue and cheek...but she totally got my meaning and responded with a giggle, 


"wow, in 20 years of nursing, i've never been told that! thank you...it's the best compliment i've ever gotten."


i love IV nurses.



October 12, 2011

JUST IN CASE...


just in case you haven't noticed, i've finally managed to get back in the swing of things with my "daily drama" posts. there are current updates and prayer requests on there now. there is a lot going on...and we'd really appreciate your prayers. 


i hope to write an actual blog post over the next couple days...but until then, just in case you're wondering what's the latest, greatest, and not so greatest, check out daily drama.

October 6, 2011

IT'S COMPLICATED


i had an MRI last week
i just had one done back in june. that one was done because of my continuous vomiting. that MRI had shown improvement in the lesions in my brain however it had also revealed white matter that was suspicious for ischemic disease. at that time, it was recommended a follow up MRI be done if my symptoms persisted or worsened. 


well, things have gotten worse. a lot worse.


at the time of the june MRI, my barfing was not associated with nausea. in july, i began to experience nausea with my barfing. i wasn't overly concerned about the nausea as i figured it was more a "side effect" of all the barfing. while i was barfing every day, it was, for the most part, only happening in the evenings. however, as august wore on, the frequency of my barfing episodes was increasing, occurring both daytime and evening, the nausea was getting progressively worse and i was experiencing significant head and eye pressure. additionally, i was becoming more and more fatigued.


we flew down to SF to see DR H at the end of august. after going over my symptoms and examining me, he was concerned that my symptoms were suggestive of increased intracranial hypertension (IIH).  he wanted to start me on a medication to address this condition asap. 


here's the thing, i don't like to start anything new while we are in the USA. ironic. there i am in close proximity to really the only doctor i have who understands lyme, knows what to do and how to treat my complicated medical issues - one would think that that would be the best place to start something new. at least, if something happens, i'm near my doctor. yet, let us not forget, that my doctor is in the USA. we pay out of pocket for my medical treatment. our insurance doesn't cover it. sometimes, starting a new med, can cause a reaction that necessitates a trip to the ER. while i don't have the advantage of being seen by a doc in canada who is familiar with lyme and how it affects the body, at least a trip to the ER and the necessary symptom control is covered by insurance. it really is a catch 22.


so, with prescription in hand, we flew back to canada at the tail end of august.
in the days that followed our return, i became progressively sicker and sicker. vomiting and nausea were non-stop. head and eye pressure became intense. my eyesight became blurred. my balance went out the door and attempts to walk left me crumpled on the floor. i could not walk without falling over. i was running fevers and then started to become incoherent.


i think i blogged about all of that already. 
fast forward. 


i started the IIH meds on aug 31.


i responded very well to the meds used to treat IIH. within several days of starting them, my nausea started to resolve, the intense head and eye pressure dissipated and wait for it, wait for it...


i STOPPED barfing.
great news!

i have now been barf free for 30 days in a row. that's the longest amount of time that i've been barf free since LAST october.

Bad news? i've stopped barfing but i'm losing weight. a fairly substantial amount. 
i've lost 12 lbs in the past 30 days. troubling. 
and 
i've been plagued by a plethora of debilitating symptoms for the past 5 weeks. a return of joint pain so severe that i've been on morphine. the noise sensitivity thing, shortness of breath, painful neuropathy so intense that i'm having to ice my feet at least 4 times a day. my balance has improved a lot since starting the IIH treatment, however, it has not resolved and between that and the fatigue, i am unable to drive. 


i'm fatigued beyond belief. the level of fatigue in and of itself is staggering - i have no stamina, zero energy - just taking a shower sends me back to bed for a minimum of 45 minutes up to 2 hours. i've been out of the house 6 times in 5 weeks. my longest outing was 3 hours and i was totally bed bound for 3 days after that. my other little outings? some only 15 minutes in duration - something as innocuousness as making the 1 minute walk to pick up avery from school lands me in bed for 3 hours in order to recover. if it's not the fatigue that's driving me into my bedroom, then it is the profound sensitivity to certain noises, has had me more or less, tucked away in my bedroom for nearly all of september.


in order to accomplish anything, it has to be done in very small, incremental time frames with hours and hours of recovery time sandwiched in between. did i mention yet, that somehow in the midst of all of this, i'm trying to homeschool parker? i am limping and slogging my way thru that. it has been like the blind leading the blind. pshht. if it were not for the incredible support of my friend, lisa, who is helping to tutor parker, i would have had a complete and total nervous breakdown. (more about the home school thing another day)


september has been a nightmare.
it has passed by in a haze of pain, fatigue, stress, loneliness, uncertainty and nothingness. 


but wait, there's more!

about the time the nausea finally resolved, i began having CRAZY reactions to food. i have never had that problem before. and these are not the common food allergies - like gluten, wheat, dairy, etc...all of which most lymies steer clear of anyway (part of the anti-yeast diet)


we're talking reactions to fresh fruit and vegetables.
i KNOW. insane. awful.
fruits i've always eaten in limited quantity because of sugar content...even naturally occurring sugars should be restricted - this is part of the lyme diet but
vegetables?
i LOVE vegetables.

what happens when i eat them?
i break out in mild hives. i'm itchy all over. my mouth and tongue start tingling and my lips get puffy.

it's likely the IIH could have triggered a whole state of imbalance. stands to reason, that an excess amount of fluid build up in the brain will do that. by the time, the IIH was diagnosed and i started meds to treat it, i was clearly in really rough shape. it really knocked the stuffing out of me. and then it's not like i was afforded the luxury of a calm, stress free environment in which to allow my head and body to heal and recover...it was only a week later that we were hit with the whole fight and debacle over parker's PICC line...and the aftermath of that.


what parker went thru was undoubtedly traumatic for all of us. and stressful. and upsetting. and i was already in a weak and altered state of mind when that began...which may or may not have intensified the additional flare of symptoms. 
generally, the stress of our life alone, is enough to cause exhaustion, mental instability and emotional breakdown but it's more complicated than that and it's near impossible to separate or group the symptoms or assign them a specific designation or cause because they just seem to all intertwine and intersect and overlap... so what is it? what is causing what?

why the sudden and dramatic weight loss? 

why the sudden return of such crippling exhaustion and pain? 
is it stress? 
is it depression? 
is it a complete and total relapse of lyme? 
is it nutritional deficiencies? 
is it residual issues of the IIH?


i had a phone appointment with DR H yesterday and those are some of the questions i had for him.


i figured it's probably a combination of all of the above.
he did not think so...here's a simplistic explanation of what he is concerned is now occurring with me...


we know the meds for the IIH are working. i have stopped barfing, the nausea, the head and eye pressure has dissipated and my balance issues have improved dramatically. however, if i am late in taking a dose of the IIH meds, those symptoms start to return at a rapid rate. that, coupled with significant weight loss in short period of time in addition to other symptoms is suggestive of a fairly severe issue with my brain/CNS/neurological functioning.


it appears that my body is making an over abundance of cerebrospinal fluid. my symptoms are suggestive of this. what the mechanism is that is driving that is unknown. why this is occurring is most likely related to my lyme infection but DR H does not believe that the actual lyme infection is responsible for this dramatic downturn in my condition. 


he has referred me to a neurosurgeon. he has faxed over my medical records to the neurosurgeon and i am in the process of completing the new patient intake package. once that is done, we hope to have an appointment with the neurosurgeon within the next 2-3 weeks. the neurosurgeon has been practicing for 20 years. additionally, she is ILADS trained. and has experience with lyme and it's impact on the brain. she is also in new mexico...but thankfully, my initial consult can be done over the phone.
it's all so complicated.


for the time being, i will remain on meds to treat IIH. as well as, the meds that control my seizures, orthostatic hypotension and supplements to support my body systems.


i am off of all abx and am only on an anti-fungal. that one needed to address a yeast issue. (oh, yeah, forgot to mention that i'm dealing with the yeast beast as well)


i don't know how much of this post will actually make sense. i don't even get it all. neither does DR H, hence the referral. it's hard for me to wrap my waterlogged brain around understanding any of anything anymore. it just all feels so complicated.