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.

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.

DIY RIPS, WOUNDS & A ROSIE PERSPECTIVE

i am always thinking. well, duh. maybe what i should say is that i am always writing in my head. yes. however, more often than not it takes a very long time for what it is written in my head to find its way cohesively to a published post. i follow a number of writers on IG and i am blown away by their ability to share their thoughts in written form on a daily basis. wow. just wow. at times i feel small and inept and frustrated by my sluggishness.

"too often we are ruled by everything that is wrong with us 

as opposed to 

everything that is right with us" 

                                          ~nick ortner

this morning i sat down to work on my post about the LDI/LDA immunotherapy. i've been writing this dang thing now for a couple of weeks. it's coming along but i'm frustrated by the length of time it is taking me to write it. i thought i'd get it done today. that was my goal but i only had an hour to hammer away at it before my plans for the day - a lovely stroll with a friend in steveston - took me away from the laptop.

as i was driving to steveston - i was quite suddenly overwhelmed with emotion. first off, the gas light was on. this stressed me out exponentially. gas stations freak me out. social anxiety perk - plus i can never figure out how to work the stupid pump - and i almost always end up having an attendant yell at me over the station loudspeaker. plus i was running late - so i really didn't have time to stop for gas. (oh good one - that like makes so much sense.) 

anyhow, while all of that was going on in my head, out of the blue i was bowled over by an intense sense of gratitude to be alive - lyme, anxiety and all. there i was driving by myself to meet a friend and go for a walk on a beautiful day. well, none of that is anything i take for granted. to be able. well, the intensity of those feelings just got me all bleary eyed (which was excellent because it  made the gas light blurry and a bit less noticeable.)

and then as i was driving along, this post just wrote itself. and since getting home (and i filled up the gas tank like a boss on the way home) my thoughts have made their way from my head to the screen.

diy rips, wounds and a rosie perspective

the gorgeous weather has me pulling out my thrifted faves from last spring.

the hubster says my thrifted shoes remind him of band-aids. smh. fashion mimics life. i burned my hand boiling water and sliced my finger tip whilst chopping onions this week. i really should not be allowed in a kitchen. given the balmy spring weather upon us and my recent mishaps in the kitchen it seemed fitting that i should wear my band-aid shoes today. after all, i like coordinating my outfits. the minor wear and tear on my ankle is left-overs i got earlier this week from a rip down a mountain biking trail called Dale's Trail on Mt Seymour. yes, i am able to mountain bike. it's incredible to be able to ride. it also helps me cope with my anxiety. my bike is my ativan. 

to be able...i am sitting here in my thrifted denim with my DIY rips, wounds and band-aids and just feeling overwhelmingly grateful to be able-bodied today. i have lived with chronic lyme disease for 10 years now. and spent many of those years bedridden and on daily IV treatment. my last big flare of lyme symptoms was a year ago and it put me flat on my back from january to march of last year. from where i sit today to where i was - even a year ago, 5 years ago, 10 years ago - is truly staggering. so today it feels incredible to be covered in band-aids from the wear and tear of life - all the way from the mundane things like cooking (albeit, let's keep it real, i am able but not really able to cook) to the extraordinary feat of shredding a black diamond run on my mountain bike. 

i have good days. and i still have bad days. but most days, i am able. more than able. for that i am wholeheartedly grateful. never give up. there is always hope.

rosie hued specs - zenni optical. 
rosie outlook - chronic life lessons

HELP PARKER (aka SPARKY) OUT-CLIMB LYME

Dear Friends and Family,

There's a few people out there who truly understand how Lyme has impacted our family. Christine Lindberg is one such person. A few months ago, I (Graham) shared with her how overwhelming the financial struggle is. A few weeks later, she informed us that she would launch a fundraiser to help us with Parker's ongoing and past medical expenses. It took me two months to actually give her permission to do this - my wife Shannon and I find it horribly scary to publicly acknowledge our need and ask for help. If you can make a donation - awesome and thank you from the bottom of our hearts! Make sure to SHARE Parker's story via this fundraiser on your FB wall and/or via email. Please be informed about Lyme Disease - we do not want Lyme to impact your family the way it has ours. (Canlyme.com or ILADS.org)

Thank you very much to those who have already stepped forward to help Parker out-climb Lyme. We solidly believe that Parker's 9 month remission (May 2014 to January 2015) is a clear indication that he can beat Lyme! Last summer, after years of being wheelchair bound, we felt like we were witness to a miracle each time he conquered a new mountain top or ripped single track down trails all over the lower mainland.  He is fighting hard to get back on top. By way of donating you are being the hands reaching out to pull him up and the feet to journey alongside of him as he sets out to out-climb lyme once and for all. 

CLICK HERE TO HELP PARKER OUT-CLIMB LYME.


Please say NO to Lyme and Yes to Parker!

Love,
Graham Goertzen & family

Parker - Summer 2014
The Stawamus Chief, Second Peak, Squamish, BC

The following is a note from Christine Lindberg, the organizer behind this fundraising endeavour for our son, Parker aka Sparky.

Dear Friends and Family of the Goertzen Family,

My name is Christine Lindberg and I am writing this as a concerned friend of this beloved family.

This week, I launched a fundraising site at youcaring called, "HELP PARKER GOERTZEN OUT-CLIMB LYME", in order to raise much needed funds for their son, Parker's medical treatments.

The Goertzen family is so grateful for the support of many over these long years of illness and suffering. I know that many of you have watched them endure this fight for so long and you have faithfully persevered in prayer for them. As their community you have ridden the emotional highs and lows of this journey with them; celebrated the victories along the way and cried out and pleaded for mercy on their behalf inthe deepest depths of their suffering. Quite possibley, you may be feeling discouraged, uncertain or even somewhat complacent about their battle against Lyme. I know many of us have often felt like helpless spectators on the sidelines, not knowing what else to do or how to help. 

Well, this fundraiser is a way to be there for them in a very tangible and crucial way!

Our family is asking you to join us in donating money that will be used to help Parker fight his recent relapse in his very long battle with Lyme disease. Currently, it is taking $3,000 per month just to keep Parker from further decline - they need help to continue this plus explore other options that their medical team wants to implement in order to move Parker from 'survival mode" into a sustained recovery and healing.

Is healing from Lyme disease even possible?
The answer is YES! 

Parker - Summer 2014
Train Wreck Trail, Whistler, BC

As a mom of a son who endured the agony of Lyme Disease for years on end - but who now has before me a thriving, healthy and healed son, I can say the answer is YES! A resounding YES!  

Our family went through this battle for years, I can assure you that we were able to "leave no stone unturned" in seeking medical treatment options for our son Riley because of the financial support of our community. I will forever be grateful for the people in our lives who supported our family in such a tangible and real way...even when there seemed to be no end in sight.

Parker - Summer 2014
Lynne Valley Peak, North Van, BC

Please stand with us and say NO to Lyme and YES to Parker. Though the climb has been long and arduous, the reality is there is so much hope. Parker out-climbed lyme before and we believe wholeheartedly that restoration and a sustained recovery and healing is fully within his reach. There is hope that Parker can out-climb lyme once and for all and be able to thrive and lead the life he is called to - with joy and abundance.

The bottom line is that they need our help to leave no stone unturned. It has taken them a long time to agree to this fundraiser - as they are not the type to ask for help. They are incredible human beings who give so much to others - Let's shower them with love and financial support. 

Please click HERE to follow the link to complete details of the 

HELP PARKER OUT-CLIMB LYME fundraiser

If you have any questions or can help spread the word, please do not hesitate to contact me, Christine at cklind47@gmail.com!

On behalf of Graham, Shannon, Taylor, Parker, Avery and, of course, Harrison, I thank you in advance for your consideration and support!

Christine Lindberg and family

DEAR RIDE FOR LYME

Dearest Daniel, Tanner & Ride for Lyme Support Team;

There are many parallels that can be drawn between the road traveled by Chronic Lyme patients and the journey you, Daniel and Tanner, have undertaken with your Ride for Lyme.

Fighting and living with Chronic Lyme is not unlike the terrain you have encountered thus far as you pedal your way across this great country of ours - from the grueling climbs of the mountain passes to the long, barren stretches across the grand expanse of the Canadian prairies. 

As you relentlessly push forward through each valley and over every peak, you become more conditioned and better equipped for the trials and unforeseen forks in the road this journey will take you on. Even so, and as it is with living with Lyme, it will never get easier to maneuver the unforeseen bumps in the road - the potholes, the nails and flats yet to be encountered. There are sure to be days that will empty you of every single ounce of energy and you will wonder how you will find the strength to keep going... day after day after day. There will also be days you hit your stride and just cruise along... sun warming your head and wind at your back. 

Much like Lyme, this ride will take everything out of you. Most likely, you will mentally, emotionally and physically hit the proverbial wall - maybe even more than once. It will require more strength, more perseverance, more stamina than you have ever imagined you are capable of. 

Along the way, you will encounter some of the most courageous, caring and resilient people you have ever met - the Lyme patients themselves. And you will learn just how the land and your ride mirrors the effort it takes to live with and the fight that it takes to heal from this insidious disease. We have no doubt that these warriors will lift you up, support you and cheer you on towards the finish line. That is what the Lyme community does for each of its own. And you guys are one of our own now.

You will have to dig deep in order to keep moving forward in your pursuit of that finish line and yet...we have no doubt that you will finish. In fact, you will finish strong and changed. Forever changed. Stronger. Braver. More appreciative of life. Awed by the capacity of the human spirit and body to endure. More compassionate. More open. More aware.  Lyme has a way of doing that to people.

Thank you Daniel and Tanner for being that visual representation of our journey with Lyme & the road to recovery... for showing us that every journey has a start and a finish line. In much the same way that every Lyme patient has a start to their story - stories and lives that matter very much and are finally being heard through your daily ride dedications and interviews with the media - even though, few have crossed their finish line yet...we believe that each and every one can find their way across the finish line. We truly believe that there is a road out of this disease for everyone and that healing and recovery is possible.

We hope and pray that Ride for Lyme will pave the way for the diagnosis and treatment of Lyme Disease in Canada...and that each and every story told along the way will be the spark that ignites a flame of awareness, compassion and care across our country. 

Ride on, Ride for Lyme, Ride on!

With deepest gratitude, 

Graham and Shannon Goertzen
Taylor, Parker, Avery and our fur-baby, Harrison #lymepooch




Info about Ride for Lyme: (source: canlyme.com press release)

"At sunrise on May 11, 2015, Niagara, ON natives, 22 year old Daniel Corso and long time friend, Tanner Cookson began their 8,000 km bike ride across Canada to raise awareness and funds for Lyme Disease. 

The ride began in Victoria, BC at the Terry Fox "Mile 0" mark. The goal is to complete the ride in St. John's, Newfoundland by July 7, 2015.

A close Corso family friend, 24 year old Adelaine, who suffers from Chronic Lyme Disease, was the initial inspiration for the ride; however, after learning the Canadian Health System does not recognize, effectively diagnose or provide treatment for the thousands of Canadians infected by Lyme, the ride became crucial.

"We will be riding across the country this spring to give hope to those who suffer from the disease." added Corso

What Ride for Lyme wants to accomplish:

1. Raise $100,000 in donations for Canlyme for Lyme research
2. Appeal to the Canadian government to address the need for effective testing in Canada
3. Bring awareness to the sympotoms, testing and treatment of Lyme

Please visit the Ride for Lyme website at:
Rideforlyme.ca

Be sure to follow the Ride for Lyme journey on social media -
Facebook - Ride for Lyme
Twitter - Ride for Lyme @rideforlyme
Instagram - RIDE_FOR_LYME

As of Saturday, May 30, 2015, the dynamic duo has already reached Winnipeg, Manitoba!

LDI IMMUNOTHERAPY FOR LYME

sparky is starting LDI Immunotherapy today (april 21). 

this will be the first dose of what will likely be many.

sparky has been fighting chronic lyme and co-infections for 5.5 years now. every system of his body has taken a real beating. he has had a chronically elevated lymphocyte count and elevated B cell count since getting sick in sept 2009. in the last few years he also developed immunoglobulin deficiences - specifically in sub-classes IgA, IgG and IgM. since he fell ill again in january 2015, his white blood cell (WBC) count has been elevated and steadily climbing as well. 

here's a very short and simplified explanation of what that all means;

LYMPHOCYTES
lymphocytes are a small white blood cell that play a large role in defending the body against disease as well as being responsible for immune responses. there are two types of lymphocytes - T-cells and B-cells. the B cells make antibodies that attack bacteria and toxins. the T cells attack the body cells that are overtaken by a virus or bacteria. lymphocytes are often present at sites of chronic inflammation.

IMMUNOGLOBULINS (Ig)
immunoglobulins (Ig)or antibodies are proteins made by the immune system to fight antigens (antigens are foreign substances such as bacteria, viruses or toxins). the body makes different immunoglobulins/antibodies to combat different antigens. IgA, IgM and IgG are Ig subclasses and are often measured together (done via blood test). the results give doctors important info about how the immune system is functioning - primarily in relation to infection and autoimmunity. sparky has had extremely LOW levels & deficiencies in ALL three of the following Ig sub-classes for several years now.

IgA - is present in mucous membranes and helps defend the body against respiratory illnesses and GI tract infections. 

IgM - found in blood and lymph fluid. first antibody made by immune system to fight new infection

IgG - most abundant antibody and protects body from bacterial and viral infections

WHITE BLOOD CELL COUNT (WBC)

WBC are important part of the immune system and help fight infections by attacking bacteria, viruses and germs that invade body. elevated counts generally mean your body is fighting an infection and/or indicate other problems such as inflammation, trauma, stress, allergies etc.

Ok, phew! are you still with me? i know that's a lot of medical stuff to digest - and actually it's just the tip of the iceberg but hopefully enough that you can grasp a bit of an understanding.

WHAT DOES ALL THIS MEAN IN RELATION TO SPARKY?

in short, this basically means that his immunoglobulin deficiencies, high lymphocyte & b cell count coupled with the elevated WBC are indicative of BOTH active infection and an inflammatory/autoimmune response to that infection. his doctors believe this makes him a good candidate for LDI immunotherapy.

what is LDI immunotherapy?
(oh no! here we go again - this is a simplified explanation)

LDI therapy was originally named Enzyme Potentiated Desensitization or EDP. EDP/LDI is a treatment that has been used in europe for over 40 years for all types of allergies, autoimmunity, and other immune hypersensitivity reactions. recently, doctors have begun to use it to treat lyme and co-infections.

it is done with injections of low dose antigens - an antigen is a toxin or foreign substance that causes your immune system to produce antibodies to fight that specific antigen. (in sparky's case dead lyme/borrelia is the antigen being used). the antigen(s) are combined with a special immune moderating enzyme (called beta-glucuronidase) to induce the production of antibodies and immune regulator cells. these cells train the immune system to not have an over-excited response to the antigen.

the key to LDI is this enzyme - beta-glucoronidase - which attracts certain specialized white blood cells called t cells that are involved in the immune response and makes them pay attention to the specific antigens that are mixed with the enzyme. the enzyme then causes a down-regulation of only the part of the immune system that was over reacting to the included antigens.

LDI injections are given at 7 week intervals and the patient receives a dose of antigen that ranges from 1C to 5C dilution.

however, in lyme patients, the reaction or symptom flare that the LDI can trigger can be quite severe and difficult to control. in LDI therapy for other conditions, the 'rescue' for pulling a patient out of a bad flare is the administration of the corticosteroid drug called prednisone. prednisone is an effective immunosuppressant and the use of any sort of immunosuppressant can be very dangerous for a lyme patient. therefore, in an effort to stave off any sort of huge reaction, lyme patients are generally started at the lower end of the dosing dilution scale.

sparky's body is already very reactive so he is being started on a MICRO dose. his first dose is 15C. this is miniscule! (the higher number actually means a smaller dose of the antigen- so confusing i know - medicine is so weird!)

traditionally, a patient only receives LDI injections every 7 weeks (the immune system has a memory and doesn't like to be reminded of an antigen more often than this) however, in sparky's case and because his doctors are actually "undershooting" with this micro dose (meaning it may be too tiny to actually initiate any sort of response), they will incrementally titrate up his LDI doses each week for next 3 weeks - starting at 15C, then 14C then 13C.

if he experiences a bad flare of his symptoms during this time, this titration dosing will be stopped. if he doesn't flare then he will receive all 3 doses over the next 3 weeks and then under go the second stage of dosing 7 weeks after that.

so that is where we are at. today, sparky will start this new cutting edge therapy. 

the objective of the LDI therapy is to treat the auto-immune aspect of sparky's illness - to modulate the immune and inflammatory responses his body has in response to the bacterial infections he has. while he under goes this therapy he will be closely monitored by DR D, his seattle lyme doctor. additionally, he will remain on aggressive antibiotic treatment under the care of DR H (his primary LLMD in SF) as his elevated WBC and markers for strep, lyme, babs, and bartonella continue to indicate active infections. DR H and DR D have partnered together many times before in order to provide sparky with excellent medical care. we are very grateful for both of them.

please keep our boy in your prayers. 

onward and upward towards healing.
there is always hope.

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!

REALITY OF RELAPSE

after 7 months of being stably improved, parker has relapsed
and so,
the fight begins again.

yeah, some battles must be fought over and over and over again but like the hubster said, "no commanding officer would send a soldier to the front lines as often as our sparky has been sent."

the reality of relapse, well, we had suspected it for several weeks now.
he has been home and more or less bed-bound with severe joint pain, brain fog, nausea, dizzy spells, etc since january 19. 

the last 2 weeks has been a blur of appointments and tests. last monday his USA specialist, DR H, confirmed our suspicions - that our boy is in relapse -

we weren't suprised, no. but shell-shocked? yes.

it is one thing to suspect
it is another to have that suspicion confirmed.

it felt like a bomb had been dropped on us
and our world imploded. 
again.

at the beginning of last week, i looked at the hubster and wailed, "i feel like someone died."
"me too." he choked out.

the thing is... relapse IS a loss.

our family is reeling.
torrential tears. white hot fury. wooden numbness. darkest despair. deep soul sorrow. paralyzing fear. 

so i guess the fact that we are cycling through stages of grief makes sense. 
when we consider how far sparky had come in the past year and how it's all been snatched away again - it's a staggering loss.  we had just begun unpacking the trauma of the last 5 years of his fight and now we are re-living the nightmare all over again.

we are living loss again.

we are stumbling numb through a twilight zone we had dared to believe we'd left behind.

and i can't stand it.
i can't handle it.
i am screaming on the inside.
i want to rip my eyes from head so i don't have see
i cannot watch this happen again
and
yet we are. we have.
the last 8 weeks we've watched his decent into hell.

seen him stripped bare of what he had regained
laid up and splayed out in agony

oh my God, where is your mercy?

how do you even find the words to begin to explain the reality of relapse?

it means living with no known time line. no way to know how or when or if he'll come out of this. one must hope, always hope, and yet somehow be prepared for the worst. 

the reality we have known is that it took 5 years of aggressive treatment to get him to remission the first time around.

is that what we face again?

what if it takes another 5 years before he's able to go back to school? it seems incomprehensible but it's happened before. that is the chilling reality.

he's had a childhood full of IVs and pills and tests and needles and doctors visits 
and
he had only just left that behind.

relapse means seeing images we never ever wanted to see again.

relapse means watching your boy get hooked up to IV again and simultaneously re-living his previous 5 years of IV treatment. it's stuffing down the avalanche of grief as your mind replays images of him hooked up to IV at age 9, 10, 11, 12, 13, and 14.

last week, parker re-started IV and it was gutting.
the hubster's heart broke
i heard it shatter into a thousand pieces.

a lifetime will not be long enough to heal that. my God, we will never ever be the same.

grief.
full stop.

the reality of relapse means we are gearing up to fight again

it means pill boxes and IV appointments
it means travelling to the usa for doctor's appointments
it means staggering medical bills

it means having to dig deep before you have the strength to do so.
it means secret tears spilling onto the cold, hard bathroom floor in the middle of the night.
it means fighting the prevailing thought that this will never end.

it means flailing in the dark with no easy answers
it means grappling with intense medical decisions 
it means sleepless nights and churning thoughts

it means your world stops but the world keeps on spinning
and the healthy world
it keeps on living and thriving
while you are plunged head long into the alternate universe of chronic survival 

the hubster and i are mostly numb
and we are walking wounded through an oppressive fog

relapse means contradictory feelings and needs

it means disconnecting from the world yet yearning for connection

it means needing help but not knowing what would help

it means needing to unburden yourself but not wanting to be a burden

relapse means you avoid casual interactions - 

it means bolting from a store just to avoid talking to someone you know
not because you don't like them or want to talk but because you don't know what to say. 

because you just can't fake it that day.
smile bright. nod your head
deflect the inevitable greeting, "How are you?"

because how do you answer that?
how do you tell people my kid is sick. again.  and we are living loss all over again and we fear this hell will never stop.

no, you can't say it. can't bear to say it out loud...because if you do, if you open up, open that wound and let it spill out? 

well, they'll be calling clean up in aisle 15. and that store doesn't have enough employees to scrape you off the floor.

and let's be honest, 
relapse means you even avoid acquaintances, co-workers, and friends 
and
sometimes they avoid you too.
it means few outgoing messages and even fewer incoming ones.
it means avoiding fellowship because you can't afford to risk hearing something trite or some token scriptural quote.

relapse means you are walking wounded with your heart bleeding out and just trying to hold it together so you don't fall apart.

it means a stoic eldest brother
and
it means a little sister scared to go to school and leave her sick brother at home.
it means seeing her red-rimmed eyes spilling hot burning tears and hearing her whisper,

"why is this happening to my brother again?"

it's you crying right alongside her and asking the very same unanswerable question... 

why God? why?

it's the old soul eyes of your boy who has suffered so much
it's the litany of emotion you see there 
his rarely spoken fears and unshed tears 

too raw, too brutal, too overwhelming to give voice to until one anguished, hushed whisper coming late one night, "this is so depressing mom, it's hard to believe i was feeling so good 2 months ago."

2 months.
it's been 2 months already you realize with a wretching twist of your gut.

2 months since the rug was pulled out from under him again.

that is the reality of relapse
and
i wonder how does he keep on keeping on?
his world shrinking from view, 
the long, lonely weeks with infrequent visitors
and
the worry that shouts loudest of all - how much more of this can he take before he breaks unfixable?

Do not let your fire go out spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet & the not-at-all. 

Do not let the hero in your soul perish in lonely frustration for the life you deserved & have never been able to reach.

The world you desire can be won.

It exists. It is real. It is possible.

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.)