THE NATURE OF THE BEAST

so i've recently had a relapse of bartonella (co-infection of lyme). 

i started antibiotic treatment (septra ds) for it on april 30. on may 2, i had a bit of a herx (a die off of the bacteria which temporarily increases symptoms) but for the most part it was very manageable (rare) and it didn't slow me down too much. 

i've even been feeling a bit grateful for this relapse because the anxiety i've been living with since getting strep in spring 2014 has been virtually non-existent since starting septra and experiencing the herx on may 2. POW! how fabulous is that? that's been an unexpected and superb side effect i will happily take. (and it could possibly mean that this lingering anxiety that we thought was residual damage from strep is possibly related to an active bartonella infection.)

so all in all, i've actually been managing this relapse ok...until this week that is. 

monday i had an awesome time ripping trails with my eldest, taylor and his dog lily. i was just so happy and grateful to be out there doing that. i never ever take for granted the ability to be able. 

Delta Watershed, May 16, 2016

tuesday we had friends for dinner. i was really tired when i went to bed that night but you know, i had to actually, horror of horrors, cook that day and that is always exhausting to me. i woke up on wednesday morning to an explosion of treatment side effects and a pretty intense flare in symptoms - burning nerve pain in my feet, fatigue, brain fog and stiff and inflamed joints. by the evening, the twitching and tremoring had set in.

i wasn't entirely sure if it was a herx, side effects or a bad flare but what i did know for sure was that i'm in for a bad spell.

sigh.

in a flood of tears, plans for the day and weekend were cancelled, phone calls and emails were placed to my doctors, and a treatment plan set in motion. then i dragged my aching, quaking body off to bed. 

i've been in bed ever since.

once again life comes to a sudden and abrupt halt. rather than heading out on my bike for the many adventures we had planned for this long weekend, i'm riding out a plethora of debilitating physical and neurological symptoms in bed.

not at all how i envisioned this weekend going.

this is hard. the hilly terrain of chronic lyme with its unpredictable crashes, cycling symptoms and ever-changing landscape is hard to ride out.

but this is the nature of the beast.

Squamish - May 14, 2016

"If you are feeling frightened about what comes next, don't be. 

Embrace the uncertainty. Allow it to lead you places. Be brave as it challenges you to exercise both your heart and mind as you create your own path toward happiness. Spin wildly into your next action. Enjoy the present, each moment as it comes because you will never get another one quite like it."  ~ Everwood

i'm trying to stay positive. after all, this could be over as quickly as it started. on the other hand, some times a flare marks the start of a long, slow, painful uphill grind that takes months to recover from.

at any rate, i'm trying to use the down time constructively and wisely... to watch grey's anatomy. ha ha. to blog. to create. to process. to organize the photos on my laptop. oh snap! that could take years. to remember to have compassion for my body. to remember that i am strong and i will come back from this. 

the return of my neurological symptoms reminded me of the recording we made during one of my tremor episodes back in october 2013. during my laptop tidy up and in between episodes of greys, i found it. seeing as it is lyme disease awareness month, flashback friday on IG, and i'm once again living with similar symptoms (albeit not as bad), i've decided to post it. (pardon the editing - i'm no editor plus i had to slice and dice it to get it to fit within IG's 60 second video limitations)

i hope it will help shed light on this beast's confounding nature.

from the debilitating yet subtle nuances of it; the fatigue, pain and brain fog that are not visible to the casual observer to the more obvious symptoms such as twitching, paralysis and memory loss.

the bacteria itself is a beast that morphs and changes and is able to silently and suddenly attack your organs and central nervous system in the blink of an eye. you really can be fine and living life one minute and the next you can't get out of bed or think straight.

aside from the twitching, i don't look sick in the video. i'd bet most people would say i even look healthy. this is not unique to me. most people with lyme (or other chronic illnesses) don't 'look' sick -  at least not if you are on the outside looking in. 

the abrupt shifts in ability and our healthy appearances can impact the way others perceive us and cause them to question the severity of the illness we live with.

compounding the confusion is that most of us work really hard to disguise or mask symptoms when we are out in public. which, i guess in some ways, defeats the purpose of trying to seek understanding but most of the time it's just easier to try to appear 'normal' rather than try to explain this inexplicable beast to those who don't have it.

and, sometimes, we hide it because when we have been open or vulnerable about the true nature of this beast, we have been shamed, ridiculed or accused of attention-seeking or over-exaggerating.

i hope this video can shed some light on that. i think we all live with some hidden pain or hurt that impacts us in ways no one else can see. i like to think that if we believe this to be true, then it's not such a far stretch to believe that someone can be seriously sick and yet look fine.

be kind. you never know what kind of battle someone is fighting behind closed doors.

ONE STEP AT A TIME

i'm wearing my thrifted polka dot shoes today. aren't they spiffy?

they make me smile and they remind me to just take this journey one step at a time. as it turns out, they are also a super snazzy way to jazz up a hospital-issued wardrobe.

so here's the thing - i'm sitting in the hospital awaiting a CT Scan right now. for me. i've been struggling with some pretty debilitating symptoms since mid-january. primarily, intense pain and pressure in my spine, vertigo, nausea & increased vomiting (as in i'm vomiting more than the nightly vomiting episodes that have plagued me for 3 years now)

aside from the vomiting, the rest are all new symptoms for me.

we haven't talked much about my struggles the past 4 months for several reasons...


...for the first few weeks we just thought i had a really bad flu. which at first made sense - after all, my symptoms were "new to me" and came on suddenly. on a wednesday morning in mid-jan, i was woken out of sleep by intense nausea and back pain, within hours i was vomiting. however, as january ebbed into february, the pain & pressure in my spine increased and i became so off-balance that i had difficulty walking. as a result, i was unable to get out of bed for most of february. as my functionality began to diminish, the hope that this was nothing more than the flu faded away.

...and then it all just felt too surreal & too unbelievable to consider that sparky and i could possibly be in relapse within a week of each other. (my symptoms began the week before he fell ill again.) 

...because coping with sparky's relapse took all our emotional sharing quota - there is only so much you can publicly bleed about at one time.

...because there have been more questions than answers and everything has been about as clear as mud.


in march, i was seen by a local doctor who suspected that my spinal pain & pressure was infection related. (i also had elevated WBC) he prescribed antibiotics. within 72 hours of starting the antibiotics, my symptoms intensified so greatly that all i could do was lie on the bathroom floor and puke and cry. the hubster put in an emergency call to our LLMD, DR H. with sinking hopes, we suspected that the sharp increase in symptoms was most likely a herx...an indication that my symptoms were most likely lyme-related. 

however, DR H was concerned that my symptoms were also strongly indicative of another condition. (lyme often mimics other conditions) my doctor here agreed and they both felt this warranted further investigation and felt it was necessary for me to undergo several tests to rule out the condition my new symptoms are indicative of.

so that is where i'm at...in probable relapse alongside my son. today's scan will either confirm my relapse or reveal another condition. affirmative results in either direction will be difficult to face. this journey is so difficult to walk...but i'll just keep moving through it one spiffy step at a time. 

HE CARRIED US

in september 2009, parker (aka sparky) came home from his first day of school feeling sick. within 6 weeks, he was in a wheelchair.

i vividly remember that little blue wheelchair. how tiny it was. how small sparky looked in it. how frail he was.

at the time, it was inconceivable to imagine that he would outgrow that chair and need another. and then another. that over the next 5 years, growth kits, frame sizes and picking colors on the lastest model would be in relation to a wheelchair and not bikes.

i have a vivid recollection of when sparky began to lose control of his legs. he was walking down the school hallway and his legs just kept giving out from under him. he had a dramatic wobbly limp and then every few steps, his jelly legs would buckle and he'd fall to the floor. after a few moments, he would painstakingly push himself off the floor and gripping the wall for support, he would start the whole process of stumbling, falling, picking himself up again all the way down the endless hall to his classroom. it was a terrifying and heartbreaking sight to see. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in her throat whispering, "This is breaking my heart."

it was the type of heartbreak that knocked the wind out of you
and it would be like this for the next 5 years.

i don't know how he possessed the gumption to keep going but it is this example of his deep-seated, quiet determination that would help him persevere thru the days, weeks, months and years that followed.

his deterioration happened at lightening speed. in a short 6 week time frame, he went from this stumbling walk to having to rely on a wheelchair to get around. by the end of october, he had to crawl on his hands and knees to get around our home. by november, he could no longer crawl but just pulled himself along on his belly. by december, he had days where he lacked the strength to move at all. he often had to be carried by his dad or brother.

he lost 15lbs in 3 weeks. his eyes became sunken and dulled with pain. he had rashes, migraines, nausea and difficulty breathing. he developed full body tremors and night time incontinence. he endured hallucinations, rages and his cognitive and processing abilities ebbed away. he could no longer hold a pencil or write. he often needed help to feed himself. and then there was the pain. always there was the relentless and agonizing joint pain. no amount of pain medication, IV or otherwise, ever provided relief. 

it is gutting to watch your child suffer and not be able to alleviate it. it chips away at your very soul.

Doctor's notes from Sparky's medical files

these painful memories flood back as vivid as the days and years that they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts...no, quite the contrary. i look back on these memories and am stunned that we are still standing today. that sparky is standing.

here's the thing. the standing and walking part, well, we don't know if or for how long that will last. we praise God that he has not needed his wheelchair since january 2014 and he has been stably improved since late spring 2014. but this could change in the blink of an eye. you never know with this disease. that is the reality of living with a chronic and incurable disease. there is no cure yet and there is no magical, miracle formula to bring about remission - the fight has been long and arduous...5 years and counting. it has taken 5 years of daily fist fulls of pills, 3 years of daily IV antibiotics, an extensive and exhaustive regime of complementary medicine - homeopathic, herbal and traditional chinese medicine, along with biofeedback and intensive physiotherapy to get to this point. 

and there is still healing ahead of him. and he's not walking out of this battle without the wounds of war following him. one does not lose 5 years of their childhood to a haze of suffering and pain and not have grief and loss to process. and he's wrestling with his faith and his relationship with God. he doesn't see the purpose in all that he has endured but he says that he believes that one day it'll all make sense. and he is keeping his heart and mind open to seeing that. 

when he entered this shadow land of suffering, he was a little boy of nine...now he is emerging as a young man. he will be 15 in a month. he stands tall (taller than momster!) and he is tall in bravery, strength, courage, and spirit.

and that tall in spirit part is the miracle in all of this. that a child at the age of 9 can endure 5 years of relentless suffering and pain, essentially become cut off and shut away from the world and yet come out of this standing tall and unbroken... 

well isn't that the miracle in all of this?

Sparky - August 2014
Overlooking Noth Van from  top of  Lynn Peak

i share this today because i know that there are other momsters out there aching with the wounding that comes from the long nights of nursing the broken, gasping bodies of their babes. 


i know the despair of living the words incurable and chronic. i know the way that reality rips your heart out and then tramples it underfoot.

i know the despair and the terror that fills every fiber of your being and reaches into every recess of your mind when your child looks you dead in the eyes and says he'd rather die than go on living.

i know the horror of hearing your child endlessly screaming in agonizing pain. i know the devastation and heartbreak that follows when your attempts to bring them comfort, relief or solace fail. i know that a little piece of your heart will never ever recover from that. 

i know that their pain is your pain and you will carry it with you until the day that you die. 

i know that there is never enough of you to go around. i know the fear of what incurable and congenital disease means to your future. i know that you worry endlessly about your other children and their future and the future generations to come. i know you fear that if no cure comes, your grand babies may one day suffer.

i know the unwelcome resentments that filter in when you hear other parents complaining about how exhausting it is to drive their kid from activity to activity or get up for early morning practices.

i know how glancing into the car next to you at a stop light and seeing a kid in sports gear makes your heart wrench violently in your chest.

i know that you are exhausted from running IVs at all hours of the night. i know that the only car ride your baby takes is to and from doctors appointments.

i know how you want to scream and rail at how unfair it all is. i know how ashamed you feel to begrudge another parent their healthy child. i know how you feel guilty about that flicking line of resentment that weaves its way up from your knotted gut and lands strangle hold in your throat.

i know that you must be more than just a momster. 

i know the weight of being responsible for making tough medical decisions and that those decisions keep you up at night. i know that sometimes there are no good treatment choices and how you wish for clear cut answers and not choices that include this or that devastating side effects.

i know the hours and hours and hours spent scouring medical files, researching medical literature in order to educate yourself on this thing that has a choke hold on your baby. 

i know that some diseases come with a call to advocacy. i know that that work can burn you out. i know that the desire to educate others, to make a difference, to find a cure, to spare another, to support a newbie is the fire that drives you...even when you have nothing left to give.

i know what its like to live with your heart imploding on a daily basis. i know the screams you stifle, the grief you stuff and the strength it takes to just keep your head above the water. 

i know that you lie on the bathroom floor in a limp exhausted heap in the middle of the night, with silent tears streaming down your face. and you wonder how, just how in the world, will you find the strength to pick yourself up and face another day...let alone, a week, a month, a year, a lifetime. 

i know that the fight to keep your baby alive will take precedence over keeping other relationships alive. i know that you will be judged on this. i know that know one will ever really know how you feel. i know how quickly the crowd will thin exponentially. that who you thought would be your "go to" people at the start will be no where to be found. i know that very few will have the stamina to be there for the long haul. 

i know that unless you have lived the incurable, you cannot understand the sense of loss, the grief, the isolation, the relentlessness, the desperation, and the endlessness of it all.

i know that a childhood shattered by relentless suffering will take you to dark and desperate places. it will challenge your faith in God. it will make you question His Goodness, His faithfulness, His purpose and His plan. it will have you on your knees, face on the floor, fist pounding the earth. i know you will plead with God for mercy. for wisdom. for healing. for guidance. for forbearance. for strength. for relief. and in the most desolate of hours, you will bargain with Him. 

i know that quite possibly the deepest ache, the most pressing heartbreak is the worry that your baby will suffer irreparable damage to their spirit and that they will lose their hope along the way. 

that their suffering will whittle away at the essence of who they are and who they believe themselves to be and how they see themselves in relation the world and to the ONE who created it and them. 

yeah, that. 

perhaps, it is the deepest, most aching worry of a momster. the one that keeps you up at night and presses in hard and heavy on your chest. the kind that makes it hard to breath around. the weight of it refluxing you into a fetal balled position of desperation.

the kind that makes you feel very, very small and very, very helpless.

have courage, dear hearts - the incurable, that curse-able, despicable word that it is, does not have to be that which defines us, our children, or our lives. it does not have to break them...rather it can be the making of them.

how do you survive year 1? year 2? year 3? year 4? year 5 and on - how do you survive a lifetime of the incurable?

how do you survive the endlessness of it all?

you survive by allowing Him to carry you. carry all of it. there is no other way i know how. 

when the snot is pouring out of your nose as fast as the tears are beating a salty path down your cheeks, and you are angry and confused and scared and screaming, "why my kid?", you just have to give it to Him. you give them to Him.  

He carries us because that is who God is. that is what God does. and it is what God did - He sacrificed his son. Jesus, brutally crucified on a cross, His body broken then brought back to life, in order to redeem our broken lives in this broken world. and that allows His supernatural power to take up residence in our lives and that is what keeps us keeping on when the way is so broken and endless. 

it is because of Him and His sacrifice that we have hope. and it is in this that we can find the strength to carry us through. just as we have had to carry our son's broken body over the past 5 years, God has carried us.

this lyme thing, well, it is a horrific journey - i know that the strength we have had to persevere and endure has come from Him. i know He has carried us every. single. step of the way because the pain and the suffering has been so very all encompassing that we could not, cannot, bear it without His supernatural strength to sustain us.

we have the strength to stand today because He carried us.

2 Corinthians 4:7-10 & 16 Amplified Bible (AMP)

7 However, we possess this precious treasure [the divine Light of the Gospel] in frail, human vessels of earth, that the grandeur and exceeding greatness of the power may be shown to be from God and not from ourselves.

8 We are hedged in (pressed) on every side [troubled and oppressed in every way], but not cramped or crushed; we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair;

9 We are pursued (persecuted and hard driven), but not deserted [to stand alone]; we are struck down to the ground, but never struck out and destroyed;

10 Always carrying about in the body the liability and exposure to the same putting to death that the Lord Jesus suffered, so that the [[a]resurrection] life of Jesus also may be shown forth by and in our bodies.


16 Therefore we do not become discouraged (utterly spiritless, exhausted, and wearied out through fear). Though our outer man is [progressively] decaying and wasting away, yet our inner self is being [progressively] renewed day after day.

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

DR H AND HIS CHAIR

My appointment with Dr H was at 1:30pm today.
I was in bed until noon resting and trying to reserve my energy and brain power for my appointment.

The appointment went well. I faded about half way through it but we were able to cover a lot of ground during it. Both Graham and I really like Dr H and even have some fun with him.
He's a great guy and a super smart doctor even though he slouches like a teenager when sitting in his chair.

Graham took some pics of me and Dr H today - however Dr H asked that we not publicly show his picture as he was having a bad hair day.

His chair wasn't nearly as self conscious though. It happily posed for a public photo op.




And of course, I can't forget Anthony. Even though he didn't venture out from behind his little window today, it was still great to see him.



And make him giggle. And pay him a lot of money. He laughs. We cry!

It will take about a week to get Dr H's full medical assessment.


But here is the low down on what we discussed today and our game plan for the next phase of treatment.

I am making progress. Yes, it's slow but that is to be expected - fighting Lyme is a marathon not a sprint. Dr H believes that it will take about another 9-12 months just to get me functioning at about half my normal pre-Lyme capacity.

I will continue on the same IV meds and can expect to be on them for at least another 6 months.

We will also be moving forward with other aspects of treatment -

My endocrine system and adrenal glands have taken a pretty big hit. I need to have some testing done on these systems. As well, he has prescribed some meds to support and build up these systems.

I have a high level of inflammation and swelling in my joints, lymph glands and fascia. Dr H suspects that some of my joint and muscle pain, fatigue and brain fog can be attributed to a build up of toxins and dead Lyme bugs in my system. So he's prescribed several meds as well as some alternative therapies to help my body detox. He had started me on a fairly aggressive detoxing regime back in July however my body couldn't handle it so we had to stop. I will start on a gentler detox protocol and work towards getting back on the more aggressive meds down the road.

In about a month, we'll start specifically targeting my Bartonella co-infection by adding a 3rd abx to my ever increasing cocktail of meds.


So that is the game plan for the time being. I am to expect things to get really rough again as we slowly incorporate it. No pain, no gain. But obviously, the gain will be worth the pain. We talked quite a bit today about how scary it can be to start new meds knowing that they are going to initially make you sicker. In the last couple of weeks, I've been a whole lot more functional and so I am loathe to rock the boat. However, being 'functional' is still a far cry from being healthy and well.

My definition of what feeling 'good' means would make most folks skin crawl but when you have felt so very bad for so very long, you forget what 'good' is supposed to really feel like. Dr H encouraged me to add in the latest treatment protocols in slowly and keep pushing through. And eventually, I'll be working my treatment around my life as opposed to it being my life.



Both Graham and I were really encouraged by today's appointment. We fully understand that the treatment process is a long haul but we are confident that under Dr H's care I will eventually beat this insidious disease.

This evening I had another one of my gall bladder attacks. They are pretty painful to endure. It seems to have settled down now. However, I have Dr H's cell phone number and know that I would be in good hands should something happen down here. Of course, we'd rather not have a tour of the ER in an American hospital so we'd appreciate your prayers.

We are grateful that God led us to Dr H.

He's a super wise doctor with a super cool chair.