HEALING TAKES COURAGE

the boy's staples came out last week...

he was told he has to be careful so as not to disturb the healing process. he has to go easy so as not to put strain on his freshly healing incision. no heavy lifting but he has to be brave and gently stretch it even though it hurts. he must be patient with the process.

his broken skin and fragmented bones are healing. this is good.

so then why am i splitting apart at the seams?

last week was a haze of panic attacks and uncontrollable episodes of vomiting. the last few days have been better but i'm still bawling at the drop of a hat (and i need a hat to cover up my hair color drama)

what is going on?

is it one of the stealth pathogens that lie in my body - like thieves in the night waiting for a moment of unguarded weakness strike?

is it the years of watching my child(ren) fight their own battles with chronic lyme? and the invasive grief and holy hell fury i feel in the face of their suffering? when a momster can't make it better...well, that splits your heart wide and bleeds it dry.

is it the orange roots and hair balls i'm leaving in my crying, puking, trembling wake?

is it just life? this lyme life that we live...with one crisis after the next happening and no time to set straight the brokenness in between?

or am i so broken and damaged and so lacking in resilience that i'm just coming unglued? (that's what my anxiety screeches in my ear)

it's probably a combination of all of the above.

yup. the past 10 years...coupled with the last 7 months have been a wild ride. chaotic. sorrowful. painful. bewildering. they've taken a toll. they've cut deep and wounded my momster heart.

and yet, piece by piece the boy is healing.

his surgeon's advice is worth taking to heart for all of us.

take care. be gentle. go easy. be brave.

healing takes time, courage and patience...and it can even hurt - especially when the wound is fresh and runs deep.

but i can heal. we all can. never give up.

PIECING IT TOGETHER

one week post surgery and the boy went to school today.

i spoke with the surgeon's office this morning and when i told them he was recovering well and had even gone to school today. they exclaimed, "that's amazing!"

i thought to myself, "yup. you're darn right it is."

actually, they really have no idea how mind-blowingly amazing it is.

"let me tell you something you already know... the world ain't all sunshine and rainbows. it's a very mean and nasty place and i don't care how tough you are, it will beat you to your knees...and keep you there permanently if you let it. you, me, or nobody is gonna hit as hard as life but it ain't about how hard you hit. it's about how hard you can get hit and keep moving forward. it's about how much you can take and keep moving forward. that's how winning is done." 
                                                                           ~rocky balboa

just a short 6 weeks ago we were at quite possibly one of the lowest points we have ever been. sparky's situation was grim and we felt pretty hopeless.

the 6 months following our trip to kansas were beyond hard. they were horrible and heartbreaking. they were horribly heartbreaking. 

we are working through all of it ... we have deep wounds that are in need of healing. we still feel bewildered, confused and confounded by all that has transpired. we are still trying to piece together the puzzle that is parker...especially in regard to his relapse (that started in january 2015) and then the monumental spiral downward that transpired after our trip in october (2015) to the treatment center in kansas. the prevailing and confounding questions of course has been what the hek happened?! what triggered the initial relapse in january 2015 and then what triggered or contributed to the rapid and accelerated decline in october.

lyme and babesia are still an issue - that is a known and well-established fact but we figured there must be another underlying factor. that there was some missing piece to the puzzle has always been of concern to DR H. the hope was that this would be uncovered at the center in kansas.

since november (2015) we have been working with DR H to put the pieces together...there has been a lot of brainstorming, testing, and treatments. 

there were multiple issues to investigate. the boy is a mystery. 

at the tail end of february (2016), we were able to identify a clear link between his joint pain and localized inflammation. this was a huge revelation as we had been trying to treat it from a brain involvement standpoint - the theory being that his brain may be caught in a neurological loop/misfiring pain signals as opposed to there being actual inflammation in his joints. once we identified this link it helped to narrow down the field as to underlying causes. 

heavy metal toxicity came to light as a strong possibility. DR H started parker on a heavy metal detox in march. he had never been treated for this. testing did reveal that he had high levels of several metals (cadmium, mercury, lead). once we began treating the localized inflammation and then added in a heavy metal detox things rapidly changed for the better.

we are not in the home stretch by any means. so far what we are doing is working and he is feeling tons better but we haven't found some miracle cure either. i've been on what he is on and it's not helped me. i know others that have too. it seems to be the right thing for his body right now but whether or not it is healing him or just managing his symptoms is unknown. DR H is concerned that it is the latter. we are still trying to assemble all the factors at play. there is still testing and further investigation that needs to be done. as well as doctors appointments to schedule. of course, this has all been delayed since he went head first over the handle bars of his bike last week. (called a "superman" in mountain biking lingo)

now he's literally being held together with 19 staples, 6 screws and a titanium plate.

so the boy is chock full of metals.

how ironic.

he is tough as nails. he's resilient. strong. brave. enduring. stoic. funny as hek. and my word is he a fighter. the first 2 days after surgery were rough. he barely moved or spoke. it was tough. but what he's lived through in the past 7 years pales in comparison. he says the pain from lyme is worse than this. can you even imagine?

i am amazed by his spirit...and that he is pulling through this so remarkably well. 

is it the calm before hell breaks loose again? gosh, i hope not. of course there is concern that this trauma to his body could push things into a tailspin again. we have been in touch with DR H's office several times since the accident and he has been started on additional antibiotics to treat any flare of lyme the accident could cause. 

is there fear that one wrong move could split wide open what has been stitched together? absolutely. but we are picking up the pieces and tying to keep focused on moving forward. one. day. at. a. time. we are grateful to be where we are. we hope that this forward progression continues. our boy has been through enough. 

ps don't give up

HOPE IS WHAT WE CRAVE

so i've been MIA on social media and my blog for a long while now. multiple reasons abound for my sudden and prolonged disappearance...

i don't have that many words to describe the past 6 months - well, not appropriate words anyway. 

at the beginning of august, i got strep throat which triggered a pandas relapse. this was my third relapse with this illness since my diagnosis in spring 2014 (read about that here). i am very fortunate that my symptoms respond to treatment albeit this time around it took aggressive and very high dose antibiotic treatment from mid-august until end of october to restore proper brain function. the treatment was very, very hard on my body. i was still recovering and dealing with some mild neurological deficits when we embarked on our trip to seek in-patient treatment for Parker at the clinic in Kansas. 

for those not familiar with pandas -  basically, it is an auto-immune illness caused by exposure to group a streptococcus infection that causes the antibodies in your body to attack specific regions of your brain and central nervous system. this can cause very severe neuro-psychiatric symptoms. understatement.(read more about it here or here)

in plain english, pandas is a mindf*ck. and that is putting it mildly.

but more about THAT another day. 

the same week that my pandas flared, we had uninvited, unwanted house guests arrive.

6 months later, they are still here. along with most of their relatives.

they are not welcome. they are not wanted. and we have nearly lost our minds trying everything and anything to get rid of them. 

their aggressive invasion of our home has been a complete and total sh*tstorm if you catch my drift. since december, i spend (on average) 3 to 4 hours PER DAY cleaning up after them. no lie. 

one day i may blog about it. in fact, the story-teller in me is surviving their hostile take over of our home by telling myself, "oh shan, this is going to make a great blog story." and truly it will - after all, the tales i can tell will leave you in flabbergasted disbelief at their brazen persistence.

however, the other part of me, the introverted, sensitive, idealistic momster who is stumbling raw and broken through the darkest of days...just wants to keep the storyteller silent. because so much of what has transpired in the past 6 months is just beyond words. too hard. too raw. too painful. and none of it makes sense. i am angry, bitter, grieved and beyond heartbroken. and the last thing i want to do is put the brutal, ugly, hard agony side of suffering out there - unless i have some sort of positive perspective to wrap it up with. after all, i write because i want my suffering, our family's suffering, to mean something. to be bigger than us. to help someone. to encourage. and mostly, to inspire faith and hope in the midst of trauma, suffering and pain. 

but today, i write in spite of the fact that i have NONE of that to bring to the table. NOTHING but my brokenness and the desolate desperation of our story. these are dark days, friends. so very, very dark...the kind of bewildering, scary, heartbreaking, helpless, hopeless, perplexing, WTF-is-going-on sort of dark days.

which leads me to the hardest part of this post to write about... an update on our boy sparky.

it is very difficult and painful to talk/write about Parker's situation.

our emotions are intense and somehow neither the hubster nor i have had it in us to put any of it 'out there'. yet, we want you to know that we have deep gratitude for the many, many people whose unbelievable generosity made Parker's $20,000 trip to Kansas possible. we know that each and every person who donated and/or prayed for this trip is also deeply emotionally invested in the recovery of our boy.

we get that.
we so totally and humbly get that.
in part, it's why it so difficult to share the outcome of our trip with you all as it is not what any of us earnestly hoped or prayed for. but it has sat heavy on my heart that we have been remiss in personally extending our gratitude and also letting people know what is going on. 

we embarked upon this trip with our hopes held high. after all, this was our miracle trip! how could it not work? really? especially with all that went in to getting us there! furthermore, the miraculous stories of recovery experienced at this clinic were not just internet hear-say to us - we personally KNOW people that have had IMMEDIATE and LASTING relief from their symptoms (specifically pain) while at this clinic. so we KNEW it could happen.

the pain relief aspect of healing was our primary reason for choosing this specific clinic. parker has suffered from unrelenting and intractable joint pain for 7 years now (even during his brief remission, he was never totally pain free)

we prayed and hoped and believed that he would experience a notable shift in his symptoms and a reduction in his pain during his 2 weeks at the facility. we knew it was possible however, we also knew this was not a totally realistic expectation to have. this was what we considered a 'best case miracle scenario'.

and the worst case scenario?

that there would be no notable changes during those 2 weeks in the clinic but that healing would come in the months after as he continued on the various remedies and therapies at home.

naturally, the best case scenario is what we hoped and believed for but the worst case is what we mentally prepared for. after all, it was the most realistic outcome to expect. we get that. he has been sick for a very long time  so it is not realistic to expect an overnight recovery.

NEVER EVER IN OUR WILDEST FREAKING NIGHTMARES DID WE FOR A SINGLE MOMENT EVEN CONCEIVE OF THE POSSIBILITY THAT HE WOULD GET SICKER.

but that is exactly what happened.

there were no notable changes (good or bad) in any of his symptoms until his second to last day of treatment. and then suddenly and abruptly, his symptoms flared exponentially and all hell broke loose.

let me be very clear -  this was NOT at all an expected outcome of treatment there. i know this may be a bit confusing for folks to understand since the traditional standard of lyme treatment is that you do get worse (eg herxing) before getting better. however, the whole crux of treatment at this clinic and the principles of biological medicine that is practiced there is that you DO NOT have to get worse before getting better. that being said, one also has to say that a flare of symptoms can occur even if the physician is striving to avoid flaring a patient. (a bit confusing i know. sorry. i can't figure out how to explain it really.)

parker's symptoms flared so dramatically that i didn't think we should leave with him in that condition. i asked his doctor if money were not a barrier, would he be suggesting that parker stay for another week of treatment but his doctor felt that his worsening condition was just a minor set back.  he was very hopeful and optimistic that this was just a temporary flare that parker would bounce back from within a few days.

so we left kansas with a very sick kid who was more disabled and in more pain then when he had arrived. we were in shock...yet we clung to the hope that we had just hit a speed bump on his road to recovery and soon we'd see improvement. after all, how could this not work? this was our miracle trip.

in the weeks following the trip, parker continued on all the remedies prescribed to him at the clinic. 
yet, he continued to deteriorate at an alarming rate. 

by november, he had lost 20lbs. and the primary symptoms he has been living with since his relapse in jan 2015 increasingly intensified.(severe joint pain, difficulty weight-bearing/mobility issues, insomnia, heat intolerance, facial flushing, nausea and intense noise/light sensitivities) 

it was very clear that this was no temporary setback or speed bump.

his downward spiral certainly caught everyone off guard and stumped his doctor. we spoke with his kansas doctor who postulated that parker's infections were probably too severe to respond to their remedies alone. he told us that the clinic does not generally recommend antibiotics - except in very rare cases.

he believed parker's condition fit this rare exception. 

so his kansas doctor and his california doctor (DR H) had a phone conference and put together a treatment plan. additional testing ordered by DR H revealed that parker had a very severe staph infection. aggressive antibiotic treatment for the staph was started immediately.

in our numb state, we continued to cling to the hope that once the staph was treated, he would begin to improve. after all, we now had two of the most brilliant doctors working on his case. he HAD to get better. he just had too. 

but he did not.

some symptoms (primarily the facial flushing. rashes and headaches) responded to the antibiotics for his staph infection but his other symptoms continued to worsen. in mid-december, he required testing for a condition called KPU. in order to prep for the test, he had to stop all his remedies from the clinic for several weeks. his test was negative. that was a big relief. the other relief was that his weight stabilized during the few weeks he was off his remedies. he didn't gain back any of the 20lbs he had lost (and still has not) but he stopped losing weight. this was significant because the weight loss and resulting muscle wasting was alarming. he was very frail. while he was off the remedies, he did not have any improvements in his other symptoms but at the same time neither did he get worse - he just kinda settled into this precarious state illness. we did not want to upset that balance. therefore, the decision was made to not resume any of the remedies from kansas. 

this was a very tough call to make for so many reasons.  

we do not question the integrity of this clinic and we know the medicine they practice there is powerful. during the 2 weeks we were there, we met many people that were experiencing healing. it just did not happen for parker. and that is horrifying and hard and makes no sense. we had/have no idea whether or not the weight loss or his overall deterioration was triggered by the remedies (there are so many co-morbid factors to could play a role -  too complex for me to get into). we hope that one day those medicines will play a role in his healing. it is just too upsetting to think that all of it was for nothing. but we simply do not know at this time. 

honestly, there are more questions than answers. 

that is where we are today. 

we have literally spent the last several months fighting for parker's life. trying to figure out what went wrong and what is going on. he has undergone numerous therapies and new treatments and even been seen by new doctors in the past several months. all to no avail. he is back under the full time care of DR H (california doctor). we are so grateful that DR H has not given up on parker. 

his level of disability is severe and alarming... in many ways, we are all still in shock...our family is deeply grieved and beyond heartbroken by the state that he is in. we are scared...we are sad...we are desperate....we feel helpless but we will NOT give up. we are pressing on, researching treatment options and fighting for parker. 

i don't think any one of us can even imagine the depths of parker's despair and hopelessness. we are amazed by his resilience and the fight he still has within him to keep on trying any and every new treatment thrown his way yet we fear...how much more can he take before he gives up? 

we are so grateful for parker's school therapist/counselor who has been coming to visit him in our home weekly for the past several months. thank you pete for showing up and being parker's person. there are no words to express how much you mean to us. 

i will be breaking my facebook hiatus in order to only publish this post - i have not accessed FB or messenger since august and at this time, i am choosing to remain inactive.  i am surviving and that is part of my survival. as much as i love the community of friends i have there, i just can't do FB. i can't do any of it - the advocacy part or the socializing part...or even the fun, silly part of it. 

but that being said, we do need people to reach out to us and let us know we are not alone and not forgotten. if you would like to, please drop us a line here on my blog or at sngoertzen@gmail.com.

please know that we have deep gratitude for your support and donations. thank you for standing with us and loving our boy. we are humbled.

please understand that we may not respond to emails. we are tired.

please understand that we cannot be more specific or answer more questions about parker right now. it is just too painful to rehash. what i have written here will be all that i say for now. it is everything i can possibly put out there without coming completely undone.

please understand that we DO NOT wish to be inundated with the latest miracle cure for lyme. trust me - i am a research ninja - chances are i've already heard about, researched it and probably tried it.


BUT PLEASE FEEL FREE TO:

tell us a funny story.
tell us you love us.
tell us we are not forgotten.
bring us donuts.
bring us coffee.
and
if you have a cat that is a really good mouser then please bring us your cat.

hope sleeps without me

sweet dreams surround me

but i'm left out

i need a reason to believe

these rooms are dark now

these halls are hollow

and so am i

it's hard to feel now

i won't turn to dust now

let these tears rust now

on my face

give me the spark now

to believe, to see

to live, to die, to lose, to care

to rise above, to love again
i need a drop of grace
to carry me today

hope is what we crave & and that will never change

                                                               ~ lyrics by for king & country

ps
special thanks to my friend CP who has been an exceptional sounding board and brainstormer...especially over the last 6 months. thank you for being my person. i am forever grateful for your friendship & support.

RIDE FOR PARKER (aka SPARKY)

If you haven't already heard about Daniel and Tanner and the 8,000km cross Canada bike ride they are doing to raise awareness and funding for Lyme Disease then please visit their website (Learn more about the mission of Ride for Lyme at Rideforlyme.ca or visit their Facebook page RideforLyme) 

Each day of their 2 month journey across Canada, they dedicate that day's leg of the journey to a Canadian Lyme patient. They call it a "daily ride dedication" and they post it on their facebook wall along with a little write up about the person. 

Today, they will be riding from Atitokan to Shebandewan, ON and are riding in honor of our son, Parker. It is hard to find the words to express the gratitude we have and how incredibly moved we are to have our Sparky's story and fight honored in this inspiring way.

This Ride for Lyme Daily Ride Dedication is for Parker - affectionately nick-named "Sparky". 

When the shadow of Lyme fell upon Parker's life in September 2009, he was a little boy of nine. When he finally emerged from those shadow-lands in May 2014, he was a young man of fourteen. He experienced 7 glorious months of remission. Then, in January 2015, Lyme returned with a fury; once again casting its ugly, all-consuming shadow upon his life. 

He has now been essentially bedridden since March 2015. His days are pain-filled, long and isolating but he is not one to complain or be bitter. His sweet smile is always accompanied by a positive or witty remark and he gives the best. hugs. ever. Yet his grief & loneliness over being cut off from life again and deep discouragement over being back in a place of great suffering are palpable. 

His recent relapse has been a gutting and devastating blow for our entire family. Hopelessness is a pervasive feeling we daily struggle with. Yet we solidly believe this: there is a road out of this disease and into remission for every person fighting Lyme. We found Parker's way out once and we hold on to the hope that we will find it again. Healing is possible!

Hope in front of Parker. Hope is in front of each of us.

Parker on the beach in Santa Cruz, CA during a visit to his Lyme doctor (LLMD) in January 2014. At the time, we had been flying to California to see his LLMD every three to four months since December of 2009. This was the FIRST trip he ever made without his wheelchair in all those years. This trip was significant - we could see that he was finally emerging from the shadow-land of Lyme.

THE DESCENT 
Sept 2009 to Dec 2009 

Our Sparky boy, September 2009

Parker went from healthy and active to wheelchair-bound in six weeks. Over the following 3 months, he was seen by countless specialists, underwent a multitude of tests and was hospitalized numerous times at BC Children's Hospital. No one could figure out what was making him so sick. He had 60 of the 75 symptoms of Lyme, yet doctors refused to consider Lyme. In fact, a BCCH Rheumatologist told us, "It is impossible to get Lyme in BC."

THE MISDIAGNOSIS

He was released from a week long hospitilization with a diagnosis of Idiopathic Pain Syndrome and Movement Disorder. The treatment plan included physiotherapy, pain management, psychology and antidepressants. He did not improve at all. In fact, he deteriorated further. 

Our Sparky boy lost his spark. 

Dad had to take a leave of absence from work in order to help care for him. There were many sleepless nights. We began questioning his diagnosis. Research always led us back to Lyme. Combing through his medical files, we discovered a positive lab result for an infection associated with Lyme. this was news to us. We had been told by Infectious Disease doctors in the hospital there was no evidence of infection. Shortly after this discovery, we made an appointment for Parker to be evaluated by a leading Lyme doctor in the USA.

THE DIAGNOSIS
Dec 2009

Doctor's notes 

By the time he was finally diagnosed with Lyme, Babesia and Bartonella in December 2009 by a Lyme doctor (LLMD) in California, he was an emaciated shell of his former vibrant self. He could no longer walk, feed or clothe himself. 

Skeletal and covered in rashes

The delay in diagnosis meant Parker's infections were deeply entrenched and life-threatening. His USA LLMD started him on aggressive antibiotic treatment immediately and told us to prepare for a long and brutal fight.  

THE COST OF IGNORANCE 


With a lab-confirmed diagnosis and treatment plan in hand, we returned to Canada with high hopes Canadian doctors would partner with his USA LLMD to provide treatment. This did NOT happen. BCCH doctors harshly criticized his diagnosis, scoffed at his positive blood test for Lyme, and refused to work with his USA LLMD.

Parker, February 2010

Parker was abandoned by our health care system.

The ignorance of lyme in BC and systemic bias against treating it in Canada nearly cost our son his life. It cost us too; physically, emotionally and financially. For the next 5 years, his medical treatment was under the care of his USA LLMD - and paid for out-of-pocket by us.


THE VALLEY OF THE SHADOW
Dec 2009 to Oct 2013

Parker with his Second of Three PICC Lines,  February 2012, Seattle, WA

It has been said that fighting Lyme is a marathon battle of one step forward and two steps back. This was very much the case for Parker. The years of treatment that followed his diagnosis were a marathon of setbacks; debilitating fatigue, unremitting joint pain, cognitive decline, hallucinations, seizure like tremors, migraines, sound and light sensitivity etc. During this time frame, we often felt like we were living in the valley of the shadow of death. Our Sparky boy could rarely walk independently and was too ill to go to school or play with friends. His childhood was consumed by daily regimens of IV meds, pills and doctor's appointments.   

SIGNS OF LIFE
Oct 2013 - May 2014

Finally began to see sustained levels of progress with fewer setbacks. Parker was able to walk more steadily for longer periods of time and with less pain. Then came that first epic trip in which he traveled to see his LLMD without his wheelchair! As the months progressed, he was finally able to ditch his wheels for good! He began intensive physiotherapy to rehabilitate his body.

REMISSION and RESTORATION!
Summer 2014 - January 2015

Parker, Train Wreck Trail, Squamish, BC, Summer 2014

It's official: Lyme is in remission! He is slowly weaned off of all his medications. He begins the process of re-integrating into life!  

He returns to school! He was so excited and nervous. The last time he was in school he had been in grade 5 - he was now in grade 10! Talk about a steep learning curve. Yet his transition went remarkably well! He made friends, had sleepovers, and hung out. 

He made his high school basketball team! The goal of playing varsity basketball was a dream he had held on to through his long years of illness!

He discovered new interests: long-boarding and mountain biking. His Dad, who has run a mountain bike club in local high schools for 15 years, was elated! Parker proved to be a natural rider - effortlessly ripping single track on trails all over the lower mainland - from the North Shore to Whistler. He easily blew past dad, leaving him to eat dust.

Parker - Killing it in Whistler, BC, Summer 2014

During this time, we still found ourselves caught off guard just seeing him effortlessly walk into a room, so the sight of him on a bike or on the b-ball court felt completely surreal. It was a miraculous sight to behold!

ON TOP OF THE WORLD
January 2015

In January 2015, he went on a four day back-packing trip with his class to Tetrahedron Park (near Sechelt, BC). He was one of three students who completed the climb up Mt Steel (summit 5400+ feet).

Parker and classmates on top of  Mt. Steel, January 2015

He came home pumped and looking healthy and vibrant after this mountain-top experience. Through the long dark years of his illness, we had always held on to the hope that he would recover but never in our wildest dreams had we ever anticipated his recovery would be so full and complete. We finally felt it was 'safe' to exhale and fully embrace his recovery. We were all on top of the world!

Three days after the trip, he got sick. We hoped it was "just the flu" but as the weeks passed and we once again watched our son deteriorate that hope faded.

RELAPSE
March 2015 to present

"We are stumbling numb through a twilight zone we dared to believe we'd left behind - how do you even find the words to explain the devastation of relapse." ~ Sparky's Mom (excerpt from "Reality of Relapse" blog post, March 2015)

In March 2015, his relapse of Lyme and Babesia was officially diagnosed by his LLMD in California.

Since January 2015, aside from a handful of days, he has been essentially house -bound. Most days it is a struggle just to get from his bed to the couch. He is no longer able to attend school. In the five months since Parker relapsed, he has received one get well card and a few cherished emails. We can count on one hand the number of visitors he has had. He feels very alone and forgotten.

GOING THE DISTANCE!

We know he is loved and prayed for but, for whatever reason, those sentiments rarely make the transition from thought to action. Practical helps and physical presence is sorely lacking for him and our family).

Why? That's a question we often ask. Is it a case of "out of sight, out of mind"; or not believing the patient is as sick as they say they are; or is the withdrawal simply because folks just don't know what to do or say. Whatever the reason(s) - the silence is deafening and the retreat is deeply wounding. It is challenging to help our son process this when we ourselves do not understand it.

For years, the only wheels Parker rode were attached to a chair.

This is a delicate and difficult part of the journey to share. Being vulnerable is risky.

Parker would never ever want to be pitied. We felt it important to acknowledge this part of his journey because this troubling aspect of Lyme is not unique to our family. Feeling isolated and abandoned by family and friends is an all too common experience in the Lyme community. The road to recovery is a long and arduous one. Very few friends and even family members have the stamina to go the distance. 

Daniel and Tanner, this is exactly why we believe your Ride for Lyme means so much to so many.

You guys are going the distance for each and every one of us that has felt pushed aside, forgotten and abandoned. 

Today, as you specifically ride in Parker's honor, he will see love in action. He will know his story matters because two men he has never met are going the distance for him. As he sees the pictures of you on your bikes, he will know that his pain and suffering are being carried across Canada in your hearts and legs. 

Daniel and Tanner, your ride is love in action. Thank you from the bottom of our hearts! Thank you for going the distance for our Sparky boy, Parker. Thank you for going the distance for all of us. For Lyme. For Hope. 

Ride on, Ride for Lyme, Ride on! 

With immense gratitude and appreciation,
The Goertzen Family
Graham & Shannon
Taylor, Parker, Avery & our fur-baby, Harrison #lymepooch

ITS A ROLLER COASTER!

a few fridays ago, we made a quick day trip to seattle for sparky to be seen by his LLMD, DR D. (his primary care doctor continues to be DR H in CA - but these two brilliant doctors have often partnered together to provide and co-ordinate medical care for sparky) we are so grateful for the wisdom and expertise of both these doctors.

sparky is starting another new round of antibiotic treatment - this will target Lyme, Babesia, Bartonella and Strep - which are all infections he is continuing to test positive for. additionally, his WBC (white blood cell) and lymphocyte counts continue to be highly elevated, so he will be starting a new treatment called LDI Immunotherapy. this therapy has been used to treat autoimmune illnesses and allergies for quite some time but only recently has been used to treat Lyme)

(i will write a more detailed post about this therapy once i've had some time for my brain to digest and process all the details and information we learned about it from his doctors)

for now, just trying to give a bit of an update on where things stand with sparky.

life has been a complete roller coaster since he relapsed in mid-january...his symptoms and health are very unpredictable and he has many daily ups and downs. the primary symptoms and issues he continues to struggle with are intense, unremitting joint pain (meaning his pain levels fluctuate but he is never not in pain), cognition issues - mainly brain fog, maintaining focus, and difficulty retaining information, insomnia (non-responsive to sleep pills), fatigue, and nausea.

oh and he's been sneezing and wheezing and itching for the past 2 weeks as the poor kid's hayfever has ramped up... and he can't be on anti-histamines as these are contra-indicated with the LDI immunotherapy he will be starting in the next week or so.

he has had some minor improvements and mild reduction in his pain levels since re-starting aggressive abx treatment at the beginning of march. the really GOOD NEWS is that he is no longer deteriorating! 

we are very, very thankful for this. before getting back on antibiotics, his symptoms were spinning wildly out of control and he was spiraling into some fairly severe levels of disability again. as i wrote about in my blog post, reality of relapse, watching this decent and coping with the accompanying losses was gutting and terribly frightening. once again, we had to watch our son miss out on the many things that most kids his age take for granted - from life experiences like shooting hoops, being in a classroom or just hanging out with friends to more complex tasks like reading or writing and functioning independently.

one major fun life experience that it looked like he would miss out on was a spring break youth trip to several theme parks in sunny cali. he had been planning to go on and greatly anticipating this trip for nearly a year. just before he fell ill in january, he had even convinced a new friend from school to come with him - he was so excited when his buddy registered for the trip.

and then he got sick.

as january bled into late february, and the date for this end of march event loomed on the horizon, he told us that there was no way possible he felt well enough to go.

he was devastated.

with the trip only a mere 4 weeks away, DR H started him on aggressive treatment.

there was much discussion with DR H about whether this trip, however remote the possibility of going on now appeared to be,  should even be a consideration at all. even on the off chance that treatment helped alleviate his most debilitating symptoms, and he felt "well enough" to go on the trip, was it even a a wise choice to still be holding out hope for - especially given how ill he had been the last few months and how fragile his immune system is.

DR H simply said there was no way to know...but he felt that it would be incredibly detrimental to sparky's mental and emotional health for him to miss the trip . so what he could do was set him up on a treatment plan that would give him the best possible chance of physically building up his system enough to get him functional enough to go.

that, my friends, was a tall order stacked against very big odds.

for the next 4 weeks, we literally bathed the boy in prayer, antibiotics, and IV immune boosters.

this powerful combination worked and i am so delighted to say that our boy was able to go! 

it was a huge answer to prayer and no small feat - but since dad was the one running the event and was also going on the trip, he was able to go. he was heavily medicated and in tremendous pain the entire time but he went and really had a blast. 

that's our boy on the log ride at knott's berry farm

it was a tremendous spirit lifter.

since his return from the spring break trip, he has been able to attend school about 2 - 3 times per week. some weeks he has managed full days and others have been half days.

his pain, lack of sleep and cognitive challenges make school and academics very challenging and both physically and mentally draining. however, these small steps are indication that he is responding to treatment as he had not been well enough to attend school at all since mid-january.

with the advent of starting this new LDI treatment (beginning the week of april 20), things could get rougher for him over the next couple weeks, (this treatment can cause temporary but intense flares of symptoms). we would appreciate your continued prayers. also, if you know sparky and could drop him a line of encouragement, that would be spectacular - he needs that!

HOLD SPACE FOR HOPE

***WARNING***

this post addresses some aspects of depression. it may be triggering to some. i am not a medical professional and this post is not meant to act as advice or replace medical intervention.if you are struggling with depression and thoughts of suicide, please seek out treatment. there is help. 

SUICIDE PREVENTION - CANADA                  SUICIDE PREVENTION - WORLDWIDE

                                                                    Santa Cruz Beach, CA - Jan 2014

i understand that most aspects of mental illness are polarizing and people have very strong opinions - i tiptoe carefully into this discussion - my deepest desire is to share my personal truth and journey with authenticity, vulnerability and honesty in the hope that it will help some one else feel less alone and less ashamed. i have sat down to write about this a thousand times before only to pull back - for many reasons - i was still too fragile from my own experience, i was scared my struggle would trigger rather than help, fear of being judged, it's too dark, i feel too vulnerable, it's uncomfortable, i'm not healed enough to write about it and share it, etc. then all of a sudden, this post just spilled out of me yesterday. sometimes the story just writes itself and you are the vessel used to tell it. even then, i still sat with it for awhile, thinking long and hard about publishing it for all the aforementioned reasons. as i was wrestling with my thoughts, i opened FB and the first thing that popped up in my news feed was a link to a post about depression....i clicked on it and there in bold, all caps, the words just jumped off the screen at me 

WE CAN TALK ABOUT IT.

It's crucial that we open up the line of communication on this weirdly taboo subject.

JUST TALK ABOUT IT...end the stigma of depression and save lives.

(Depression is not a scandal by Jamie Wright)

so, i felt like the author of that post was talking right AT me. and it felt like confirmation that the post that had poured out of me needed to be published.

but before i launch into my own story, i would like to recommend you first go to this blog - Hyperbole and a Half  and READ the post titled Depression: Part two

in my opinion, this blog post from hyperbole and a half, depression part two, was and still is the BEST, the very, very best thing i ever read on depression. here's why - if you have never dealt with depression, i think it will help you understand it or if you have or are suffering from depression it will help you feel like you are not the only one and that everything that is going on in you has happened to someone else and if they survived it then maybe you can too. 

Cartoon Source: Hyperbole and a Half Blog

it articulates every thing i felt or stopped feeling during my depression. i stumbled upon it late one night, (and while i was still very much in the grips of depression.) it gave my depression a voice. it gave me a voice. and it didn't trigger me - it actually made me laugh. that laughter was the first genuine response of emotion that i had had in months. even more shocking was that it also had me fist pumping and crying and vigorously nodding my head and whispering "yes. yes. exactly." which was all quite profound seeing as i had been DEVOID of any sort of genuine emotion for months.

it also had me repeatedly elbowing the hubster, rousing him from a deep sleep by screeching "wake up, wake up! you have to read this. NOW. right now. this will help you understand what is going on in my head." 

i'm pretty sure that i totally freaked him out - after all, how discombobulating would it be to suddenly have your wife emoting after months of her being in a freakishly zombie-like state. NEVER MIND that it was at 2 in the morning. 

brave man that he is, he kinda stared at me for awhile and then wiped the sleep from his eyes and took hold of the ipad i was frantically waving under his nose.

and after he read it, he said, "i think when things get better, we should share this - it could be such a useful and helpful tool altho it's sorta exploding with the f-bomb. that kinda makes it a tricky thing to share."

- oh yeah, THAT. be forewarned - the f-bomb is used multiple times. i know that some folks will find that really super duper offensive BUT, and please hear me say this in the MOST non-confrontational and loving tone i can muster,

"get over it and read it anyway."
HERE'S THE LINK:(click on it) 
Hyperbole and a Half: Depression Part Two 

The cartoons posted on in today's post are from the Hyperbole and a Half /Depression Part Two Blog...and were created by the blog author, Allie Brosh. This one in particular made me laugh. hard. real hard.

(Be brave and read it and then come back here and carry on reading my post)
_________________________________________

okay, carrying on with my own thoughts on the subject now. 

i've been thinking a lot about the new year upon us and how hard the dawning of a new year can be on people. obviously my thoughts are with those with chronic illness because you are my community. you are my family. and i understand the unique set of challenges we live with.

i know that there are many people that are in a situation that feels hopeless and how things never seem to change. and even tho we've all heard that nothing ever stays the same -some times it just feels that the change is always on the downward trend. sure, things change - they keep getting worse. year after year, you live in survival mode and so just how the hek do you face one more year of THAT?

Cartoon Source: Hyperbole and a Half Blog

for those of us in survival mode, the dawn of a new year can be daunting. disheartening. demoralizing. scary. overwhelming. infuriating. gut wrenching. 

maybe there have been many years where you bravely faced the start of a new year with hopes held high and were determined to think positive change into being - this will be the year that i get better or start to get better or find victory in what ever struggle i've been battling.

and then the year passed and in spite of your best efforts, things actually got worse. and even though you faithfully persevered in doing all the right things that should bring about change or healing, life got a whole lot more painful.

i've been there. i get it. 

i so totally get it.

i'm not going to go in to a lot of detail in this post. i just want to say enough so that  those of you that are down to nothing and drowning in an abyss of hopelessness feel like there is credibility when i say, i get it.

in oct of 2013, i was suddenly engulfed by the dark, thick, suffocating, all consuming blanket of depression. i never saw it coming. no warning. one day i was fine. the next day it descended on me like a bat out of hell.

i fought really, really hard to get out from under it. i tried with all my might and strength to desperately hold on to any shred of hope. i confided in a few trusted friends. i told my medical team. i told the hubster and he listened and heard me and together, we sought the help of professionals and medicine. yet, i became increasingly consumed by thoughts of suicide.

by december 2013, i lost hope. all hope. 

and so i started last year's new year with a plan to end my life. at the time, it seemed like a very rational and logical plan. it made perfect sense to my depressed and upside down mind.

so i get it.

i know that you can be really brave and work really hard to hold on to hope and still lose hope.

i know that you can love Jesus with all your heart, mind and soul and still get sick with depression because depression is an (mental) illness not a spiritual defect. 

i know that you can still have faith and believe in Jesus and fervently plead with him to lift it and yet, despite your fervent and earnest prayers, you can still suffer from depression.

i know that your love for your family/loved ones can keep you holding on and tolerating a painful existence for a very long time and then one day depression can whisper in your ear that your death would be your family's release. and you wholeheartedly believe that lie because depression messes with the mind and twists all reason and logic.

i know that depression makes everything about your life's circumstance seem so obviously hopeless that you cannot understand how those around you cannot see that it is utterly hopelessness. that the people in your life that are telling you differently are either lying to you or just in complete denial of the obvious.

i know that depression can turn everything upside down and inside out and so sideways that no matter how you look at your life, every thing you see seems to serve as confirmation that your life is not worth living and that you are not worthy of living it.

it is hopeless.
nothing changes.
you are a burden.
a waste of space.
a drain.
unfixable.
broken beyond repair.

depression is hitting rock bottom...and having rock bottom give way beneath you. it is tumbling into a bottomless abyss of nothingness. 

depression is totally and completely full of empty. 

i get that life can get so painful, so hopeless, and so terrifying that not living can look like a really good alternative. that you can feel so trapped by your circumstance that the thought of escaping it can bring you a profound sense of relief and euphoria.

i get that life can just be too much and that you have had enough and you don't feel like you can carry on through one more day or one more hour.

i get that.

life can get to be too much. too hard. too painful. too messy. too brutal.

i get that because sometimes it is just way too much

it even makes sense that you have lost hope.

there is NO shame in that. none.

hear me again. there is NO shame in losing hope.

                                                                        Santa Cruz Beach, CA - Jan 2014 

it can and it does happen to the bravest, strongest warriors.

you can lose hope...but i want you to know that you CAN survive it.

hear me again. 

you can lose hope and survive it.


not by trying to get it again - that is too hard. after all trying to have something you don't have is frustrating and futile. in fact, trying to have something that you simply don't have makes you feel like an even bigger failure. it would be like trying to make a banana appear out of thin air. you can't do that (personally, i would never even try because i really don't like bananas at all but that is beside the point.)

the point is, you cannot make something out of nothing - and trying to do so only leaves you feeling smaller, weaker and ashamed - if you have lost hope, you cannot make yourself have hope - but you CAN survive losing hope by just holding space for it.

i want to be clear that i am not suggesting you hold space for hope without support and medical intervention. you NEED that...but here's the thing, i thought that once i got help that i would feel better - and i did eventually- but not right away. in fact, at first, i actually felt worse. a lot worse. i don't know if it is like that for everyone, but for me, i lost ALL hope AFTER i started to get help...because, in the beginning, even the help and support felt totally stupid and pointless and like bullshit. and that made me feel like i was totally beyond hope and help and that was really, really scary. it was at that precise time, that i had to hold space for hope.

hold space for hope.
it CAN be done. 
hold space in your heart for hope to return.
it is possible.

you CAN survive losing hope by holding space for it.

it isn't easy and it can be really, really scary to continue to live and breathe when that space is empty and depression is shrieking in your ear that you are beyond help but if you can hold space for hope, if you can hold it open long enough, hope will return to fill it.

dearest warrior, 
hold space for hope. 
even when you can't feel it or see it or hear it.
hold space for hope.
you are loved. you matter. your life matters.
hold space for hope.
you are worthy and your life is worth living.

hold space for hope

hope will return to fill it.

it does.
i promise you it does.

i held space for hope
and
eventually hope returned.
stronger. braver. wiser. bigger.

PS - 
One more thing!

in the course of writing this it suddenly dawned on me that when i was in the grips of the deepest, darkest months of my depression, that HOPE was so far flung - that it actually felt like a four-letter word to me. i recoiled at the sound of it. to be completely frank,  i thought hope itself was total bullshit. brutal honesty - hope felt more foe than friend. hope felt like the fish hook that had kept me swimming in endless circles that led no where for years.

so i get that you can get to a place where even hope feels more foe than friend

so if you are in that head space, then i will say this to you - hold space for corn.

just hold space for corn. it will find you.

Cartoon Source: Hyperbole and a Half Blog

(if you don't get that, it means you didn't read the hyperbole post - please do.)