PARTNERS IN LYME

About 6 months ago, our friend Naomi asked us if she could set up a donation site and do a fundraiser for us in order to help us cover our medical expenses. we were honored and humbled by her desire and willingness to help us. we were also very uncomfortable with the thought of asking for help. asking for help is a really tough and humbling thing to do. however, with the advent of both of our sons now needing to undergo treatment in the USA for lyme disease, we've had to get comfortable with it. after all, a tick bit off more than we can chew.

over the last little while, a blog site called Partners in Lyme has been designed to serve this purpose. we've heard, via the grapevine, that there are folks who have a desire to help, but don't know how or what they can do. others have often asked us directly how they can help. we have so appreciated their inquiries but have often felt ill-equipped to give them an answer or just too uncomfortable to ask for what we need.

Partners in Lyme is the catalyst in which we will be able to convey our prayer requests and financial and practical needs to those of you who wish to partner with us on this journey. we hope that you will drop in to the Partners In Lyme blog and/or the Facebook page! Naomi will be running and overseeing both them. she is also planning a bowl-a-thon fundraiser. she's hoping to have that organized for sometime in the month of May - which is fitting as May is Lyme Disease Awareness month.

our journey with lyme has been an incredibly difficult ordeal, it has often stretched us far beyond our physical, spiritual and financial capacities and yet, time and time again, we have experienced God's miraculous provision and have been blessed in ways we would not have had we never encountered a lyme infected tick. many of you have and continue to encourage and support us in the most creative and profound ways. we are so grateful for that and are indebted to you. and huge thanks to naomi for taking this on! there is not a thank you big enough!

partnersinlyme.blogspot.com

A JOG DOWN MEMORY LANE

after spending 2 days flat on my back in bed, i was up and at 'er on monday morning. yes. back to the gym i went. this could become a habit. 

obviously, i am doing an incredibly modified, outrageously scaled back version of what i used to do. baby steps really. but as i hopped back on that treadmill monday, my body just took over. muscle has memory and mine was screaming,

"that's the way, uh huh, uh huh, we like it!"

running was always my therapy for coping with life. my greatest source of stress relief. i used to run every day. 8-10km a day. rarely outside. i'm a city girl after all. which makes the fact that i have an "outdoorsy disease" all the more ironic. i have to think too much when i run outside. 
watch the dip, 
don't step on the crack, 
hop over the pebbles,
watch out for dog poop
and
inevitably i would always end up inhaling a bug or two. 
nope, not a fan. far prefer the grind, the monotony and the predictability of the trusty treadmill. just hop on and go. forget my worries. outrun my fears. i loved it.
and now i'm back at it
2 minute jogs of solitary, muscle burning bliss.
thank you God for restoring this ability to my body. 




while my muscles may be happily jaunting down memory lane, my autonomic nervous system has headed over the hill and around the bend in a frenzied state of panic and disorientation.
it has gone into shock. in the past 2 weeks, i've undergone 4 unmentionables and done 5 mini workouts. it has been a dynamite combination of toxin expelling. the massive exodus is creating a shift in the remaining toxins and causing all sorts of very strange responses.

take, for example, my big, fat, purple feet.
i am not kidding.
out of the blue, they will start to tingle.
within seconds, they start turning red, then swell up and turn purple.
i'd love to get a picture of it but it never lasts long enough.
they do it whether i'm sitting, standing or lying down.
strange indeed


i am having major shifts in my blood sugar levels too. at varying times through out the last couple of years, i've had problems with hypoglycemia but these attacks are worse - and are happening in the middle of the night. i am waking up in the middle of the night all shaky, nerves frayed and sweaty and numb. a sip of juice generally quells it within 20 minutes or so. this is a bit disconcerting especially when it is accompanied by numbness on the left side of my head.

i am very relieved that we will seeing DR D on monday. this is our doctor who is in Seattle. parker, taylor and i all have followup appointments with her on monday morning. i'm looking forward to getting these things checked out. i'm also expecting a standing ovation from her and her office staff when we arrive. after all, i've now undergone 4 unmentionables. that is deserving of applause. and i told her that during our last phone appointment.



please pray for our appointments. since our last in office appt (6 weeks ago), Taylor has not improved as we had hoped he would. in fact, he has actually gotten worse. one of the remedies DR D had him on has cross over properties that are effective against the lyme bacteria. his worsening in symptoms within 3 days of starting this med are most likely indicative that his lyme infection is more active than we originally thought. DR D has indicated there is a strong possibility that he will likely need to undergo aggressive antibiotic treatment. this treatment would need to be done under the care of DR H in CA. we have already booked a tentative in office appointment at the end of May for Taylor with DR H. the outcome of DR Ds findings on monday will give us a clearer picture of what we're dealing with and if indeed a visit to DR H is truly needed. please pray for wisdom for DR D as she assesses Taylor.

aside from rediscovering the joys of muscle memory, i've been traipsing down memory lane. most days i have the feeling that i've been catapulted back in time to the foggy haze that accompanies those first few weeks with a newborn. no newborn here, mind you but with 3 of us on fairly comprehensive and involved treatment protocols everything revolves around scheduling.

ok so i just heard someone snort at my audacity to suggest that newborn and schedule can actually co-exist. in my world, they did. did i ever mention that i'm anal retentive when it comes to being organized? i breast fed all 3 of my kids and i had all 3 on schedules.

feed. poop. pee. nap. feed. poop. pee. nap. feed. bath. bed. 
thankfully i had cooperative babies.
and for the most part, they are now being fairly cooperative patients.



take this pill with food
take this pill on an empty stomach
no dairy for 2 hours prior to taking this pill.
take this pill with dairy
no lying down for 45 minutes after taking this pill
take this pill 1 hour before eating
mix this med with water

stand on your head, recite the alphabet backwards, pat your head, rub your tummy while taking this pill.

yeah.
insane
now imagine 3 of us with regimenins like that.
it is ridiculous.
to simplify it as much as possible i've put us all on a pill popping schedule.
10am, 12:30pm, 3:30pm, 5pm, 10pm

every monday, i set up my pharmacy on our kitchen table
and
dole out the weeks supply
it takes nearly 45 minutes
and
i am always terrified that i will give someone someone else's pills


the boys always hope that i'll forget to slosh green goo their way. ha ha. yes, they are having to knock back green goo now too.


kinda like those mushy peas i used to shovel into them. now there's a memory i'd like to forget! all 3 of my kids were spitters barfers. and that didn't stop when they started solids. ew. they all hurled all the time. i never left the house without an arsenal of what i called barf rags. public outings were a danger to anyone within a 6 meter radius of us. if memory serves me correctly, when taylor was roughly 3 months old, he projectile vomited over the pew and down the back of some lady in church one sunday morning. coward that i am, i high tailed it out of there before the effects of the offending projectile soaking through the delicate fabric of her sunday best alerted her to the calamity.

isn't it funny how you can look back to those first few weeks of motherhood and wonder how you ever survived? i sure do. it was nose to the grind, think only in 3 hour increments (if you can think at all), be grateful for the chance to shower once a week, the rest of the time expect to be encased in puke stained sweats.

and no one ever thinks to tell you that at least a 100 times a day you will question your ability to be a mother. that you will feel as if you have no idea what you should do with this 8lb human being who can reduce you to a puddle of tears in 3 seconds flat. that sleep deprivation will cause you, more than once, to wonder aloud who sent you this baby and just what did they expect you to do with it now? at the end of the day, you will stumble into bed exhausted and then lie awake listening for the reassuring sounds your baby's breathing.

and nobody ever tells you that the newborn stage was the easy part. and that it gets harder the older they get. that every emotion you experienced in those first 6 weeks of their life will only become magnified with each passing year. that you will intrinsically feel their every heartache as if it is your own, that you will weep for their pain, that you will scream in frustration at your inability to comfort them, and a 100 times over you will feel inadequate, ill-equipped, and unprepared for this task called motherhood.

right now, my boys are home full time. neither is in school and some days both are too sick to get out of bed. they need a lot of hands on mothering. for the past 3 years, i have not been able to mother them in the ways that i yearned for. lyme took me away from them and robbed me of my abilities. now, i am being given the strength to nurture them. sure, everyday feels like an insurmountable challenge to meet the demands of care taking whilst trying to juggle all that is entailed on my own road to recovery. sure i still have a lot of days where i am more patient than caregiver and a 100 times a day, i feel ill-equipped, unprepared and inadequate to fulfill my God given role as their mom. and i'm certain that one day, i will look back on this time in our lives and wonder how i ever survived.

but my muscle memory reminds me that sometimes what is lost can be found again
and sometimes what is lost is replaced by something far more beautiful and precious.
i hope that my nostalgia gives me the foresight to do more than just survive this. i want to live in it,
embrace every painful, chaotic, exhausting, frustrating part of it
and find the courage to see that lyme is giving me the gift of time with them

after all, life has taught me that memory exists because nothing ever quite stays the same...

and
sometime soon, they will get better. they will grow up. they will sprout their wings and leave the nest. and i bet that will be harder than this.

i better enjoy this while it lasts.

NO PAIN, NO GAIN

"endure and persist; this pain will turn to good by and by"
                              ~ ovid, roman poet

                                      

the day after my return to the gym, i was sore
that good kind of sore
the kind of sore that indicates neglected muscles are finally getting the attention they crave
i was so excited to feel sore like that again

today, i am in pain
the kind of pain that is accompanied by a host of other symptoms
i am irritable, slightly manic, i can't sleep, twitching and jerking, my head feels like it could blow off, my neck and spine rigid and stiff, my joints are ablaze with searing pain and my body is continuing to purge -without the aid of a rubber hose...


apparently the lyme and babesia do not take kindly to being purged from my body
they are raging and as a result i'm flat on my back in bed

it's a bummer but i'm trying to keep it in perspective 
sure, i feel horrendous
imagine having the flu, the kind of nasty flu that necessitates a trip to the ER, as you gingerly make your way to your car, you slip and fall down your flight of stairs, and then on your  way to the hospital you are rear-ended which results in a serious case of whiplash, add insult to injury, the paramedics that attend accidentally run over you with the gurney.
ok, that's a little lame but it is the best way i can think to describe what it feels like to be in my body right now

however
a year ago, the days i felt that way were the days that i defined as 'feeling good'

if my 'good days' from a year ago are my 'bad days' now
well, that is a considerable shift and improvement

and being laid up in bed again has given me a chance to catch up on my blogging...which is a comfort. it calms my manic mind. it is weird how that happens. my body craves calm and rest and yet my brain is in overdrive.
 


i am hopeful that this pain and flare in symptoms, is just my body reacting to the loss of the mondo amount of toxins that i have expelled through both the colonics and my 2, yes 2! workouts i did at the gym. after all, i undertook quite the intensive detoxing regime in the last week. it stands to reason that there would be fall out from that.


DR H has told me that when you pull a lot of toxins out of your body, it momentarily interrupts your body's equilibrium. as your body struggles to recalibrate and shift remaining toxins and heal, it can cause a temporary increase in nasty symptoms.


of course, quite naturally i fear that this is one of my big bad herxes. and if it is, well that bites big time. not that i didn't expect to still herx, after all, it is an unavoidable part of treatment but what i didn't expect was to herx this hard and this bad.  i really thought the worst of the worst of those had finally passed.  and now, here i am again, stuck in bed, riding out the storm. i fear that not being able to get out of bed today will turn into tomorrow and the next day, the day after that, the day after that. but, you know, a herx is a form of healing too. actually, "herxing" is also called a "healing crisis". that is an interesting perspective to ponder considering the torturous dance that is.


so i will rest and let my body heal
if you think about it, healing at any level produces temporary pain.
psychological healing involves confronting emotional baggage and working through that is a painful process.
but the end result is freedom and release from that which imprisons your spirit makes the pain of the process worth it.
why should healing from the physical damage of disease be any different?
quite simply, it is no different.
healing is painful.
but it is worth it.

no pain, no gain


so i will endure and persist; and this pain will turn to good by and by