March 26, 2012

VICTOR NOT VICTIM



baring my soul in my last post and expressing my tumult of emotions certainly helped to alleviate some of the internal pressure i've been bottling up. after all, i find writing a very cathartic and therapeutic process. yet, without a doubt, i know that the only way that any of my distresses, anger, frustrations and fears can truly be expelled from the every cell of my body they pervade, is by turning to God.


the day after writing just keep swimming, i picked up my all time favorite devotional book and read the entry for that day. (the book is called, "31 days of praise" by ruth myers). while one must be careful not to take biblical passages out of context, i do believe that God gives us what we need when we need it. this was certainly no different. it was exactly what i needed to be reminded of - and that is that in Christ, i can live from a position of victory and not victim.


here's what i read in it's entirety:


Father, i praise you that Jesus is a victor over satan and all his evil powers - that He triumphed over them through the cross and resurrection, and that You have highly exalted Him. You have given Him a position infinitely superior to all other powers and authorities...a name that stands far above all other names that will ever be used, and - amazing grace - you have raised me up and enthroned me with Him in the heavely realms.


how i praise You that i need not strive toward a possible victory, but can live from a position of victory already won - that He who is in me (Father, Son and Holy Spirit) is greater than he who is in the world...that although satan is powerful, he cannot prevail against the blood of the lamb and the name of our Lord Jesus Christ. thank you that satan must retreat before the name and before Your word, the living and powerful sword of the spirit, and that in the end he will be cast down into everlasting defeat and shame.


what a joy to know that You are the same today as You were centuries ago in isaiah's day, when You promised to rescue your people in a hopeless looking situation, when the enemy seemed to have prevailed. how i love the words You spoke to them:


"those who hopefully wait for me will not be put to shame...even the captives of the mighty man will be taken away, and the prey of the tryrant will be rescued; for i will contend with the one who contends with you, and i will save your sons."


i praise you that i can count on you to do this in our spiritual warfare, and that through you we shall do valiantly, for you will trample down our enemies.


can i get an amen?!




scipture references:
1) col 2:15; eph 1:19-21; phil 2:9-10; eph 2:6
2) 1john 4:4; rev 12:11; acts 16:18; eph 6:17; rev 20:10
3) isa 49:23-25; psa 108:13



March 24, 2012

JUST KEEP SWIMMING...

if you saw the movie 'finding nemo' than you are familiar with the title of this post.





finding nemo
just keep swimming scene


having to just keep swimming in the midst of turbulent, stormy seas is currently the status quo in our life. we must just keep swimming thru murky, shark infested seas with no land in sight and no help on the horizon. i am so tired, so depleted, so terrified - if only i had a life vest, a bouy and a carribean sea to swim in.


we just have to keep swimming in regards to our fight for the right to treat our son. on second thought, it would be more accurate to assess our position as treading water as swimming infers forward movement - and little, if any of that, is happening. no, we are primarily treading dark waters, desperate to be rescued from a situation that has us in way over our heads. i still feel like i need to be a bit cryptic here on my blog in regards to relaying information about our situation. 




i am imploring you for your continued and earnest prayers in regards to this situation. it is ongoing. it is taking a terrible toll on our emotional well being, on our son's health and on my health. last week, i started barfing again. it's most definitely not the flu. it does not appear to be a re-occurrence of the fluid on the brain  that i suffered from in august/september 2011. i am still on medication to control that. this barfing is more in-keeping with and following the same pattern and MO as the atypical seizures i developed back in november 2010 due to the co-infection bartonella. my doctors suspect that the enormous level of stress coupled with an increasing lack of ability to sleep have proved too challenging for my body to keep my bartonella in check. i have thrown up every evening and every supper for the past 10 days. 


i am exhausted. i am overwhelmed. i have reached my breaking point. for several days, the tears have just come out of nowhere. huge, body wracking sobs. i just can't do this any more. it is just all too much to bear. way too much. our life over the past 6 years has been relentlessly difficult and a down right nightmare. that, in and of itself, had already stretched me well beyond my capacity and then "the attack" by the hospital and its doctors happened and we are drowning in the aftermath of that. correspondence from them continues to come in on a near weekly basis...and most of it is greatly disturbing and incredibly upsetting to us. 


and i am so done. i am exhausted. i feel helpless. i feel powerless. i am appalled by what has and is transpiring. we all are. my son crawled into bed with me the other nite. with tears streaming down his face, he whispered, 


"how do they live with themselves, mom? how can they sleep at night?"


my son has endured more suffering in his young life than most folks will encounter in their lifetime. yet, he is a remarkably resilient kid. he is strong and centered despite the degradation he has been subjected to by the doctors at that hospital. he has been brave and courageous despite the myriad of patronizing comments made to him and at times, even hostile attitudes aimed at him. we've worked hard and he has worked hard to overcome the hurt and neglect and to just keep swimming. over the past 2.5 years, we chose to focus on what we (he) did/does have - we have DR H, DR D and DR A. and despite the lack of treatment in our home country, our son was getting treated (in the USA) and he was getting better as a result. at the end of the day, regardless of where that care came from, him getting better is what really matters. focusing on that, enabled us to keep swimming through the labyrinth of fighting a complex disease. we were comforted by the knowledge that our son had (USA) doctors who truly cared about his mental, emotional and physical well being. we are grateful we had doctors who know how and were skilled and experienced in treating this horrendous disease. 


the bottom line was that his USA treatment had him on the road to recovery. and now all of that has been aggressively attacked by a canadian hospital and its doctors. an institution and medical professionals that have repeatedly told our son that they do not want to be involved in his case, have interfered with his (usa) treatment and in doing so, have jeopardized his health and life. and we have to help our son reconcile THAT stark, horrid reality. not all doctors are good, safe or do the right thing. in fact, some will perpetuate a child's suffering (his, in this case) in order to serve their own selfish interests. few folks can even conceive of that as fact, let alone believe it. yet, it is our reality. it is our son's reality. and i have to help a 12 year old swim through the dark depth of this side of humanity whilst he suffers the pain filled consequences of the actions of health professionals that are antagonistic to that which is aiding his recovery. 


 i feel so alone. so very alone. we have joined a club that few people will (mercifully) ever experience - the dark side of medicine. a place where ego, arrogance, and selfish interests trump the oath to do no harm, provide compassionate care and the outcome results in the indescribable suffering of a child. make no mistake, there is a very, very dark underbelly at play here and we are swimming in the shadow of it. what is occurring is a deliberate manipulation of the facts and a suppression of relevant information and it is shockingly unconscionable and irrevocably vile.


we are swimming upstream against a torrent of rubbish and an undertow of lies that threaten to pull us under and all the while their slick and powerful sharks ominously circle overhead with unlimited resources at their disposal. and i am only a mother, one small, floundering fish, trying to protect my very ill child whilst fighting to get him the appropriate and necessary medical care he needs to recover from a disease that has robbed him of 3 years of his childhood. a disease, that prior to treatment, had ravaged his body to such a degree, that at his worst, he was unable to feed himself, walk, read or write. and now canadian medical professionals have put lock, stock and barrel on access to the very medicine that has given him back his quality of life - it is shameful and what is criminal is that in the process, they shredded his sense of security.


i am angry. so very angry. it is hard to believe that justice will be served. that is a tough pill to swallow. of course, we would like to see the doctor's involved in launching this attack held accountable for the misconduct appropriated against our family, but that is secondary to ensuring our son's physical and mental health. we are incredibly grateful that DR H continues to stand solidly behind his diagnosis and treatment of our son. since "it" all happened, DR H has strongly advocated for our son, his patient, with direct correspondence to those involved in the interference of his prescribed treatment. yet those attempts have gone unanswered.


for the time being, i feel totally despondent and completely isolated. i feel angry. sad. frustrated. overwhelmed. terrified.  i am lacking in my generally natural inclination to find the silver lining. i wonder what God is up to...how does this fit into the bigger picture? i know he is just and righteous... i just don't understand why he is not righting this wrong. i know he loves us, i know he cares about our son's suffering...i just don't understand why he's not lifting it.


maybe tomorrow will be better...albeit, i find that hard to believe. in the meantime, i must somehow find the strength to just keep swimming even though i am drowning in a sea of tears and grief.



March 9, 2012

LEAP FOR JOY!



Praise be to the LORD, 
   for he has heard my cry for mercy. 
The LORD is my strength and my shield; 
   my heart trusts in him, and he helps me. 
My heart leaps for joy, 
   and with my song I praise him.
                            ~psalm 28:6,7
i am thrilled to (finally) have some SUPER awesome news to share with you! 


after 4 YEARS, yes, FOUR LONG YEARS of IV treatment, my docs gave me the go ahead to PULL my PICC LINE!! PRAISE GOD!


i saw DR D in seattle on february 27th, and after an exam, she felt we could move forward with removal albeit she deferred final decision to DR H
she faxed her recommendations to him
and
on wednesday, february 29, i was given the green light to pull my picc




yes, that's right, the go ahead for my line removal came on feb 29, leap day...a day that pretty much only comes around once every 4 years. it's like a bonus day the world gets every 4 years. 


how superbly awesome is that? i love the irony in that. i could not have scripted a better more symbolic day to learn my 4 year odyssey with IV treatment was finally over than to have it occur on a day that doesn't 'normally' exist.


after hearing the news, i pinched myself in disbelief that THIS was FINALLY going to happen and then ran around the house like a chicken with it's head cut off. i wept. i screamed. i laughed. i grinned from ear to ear and i shouted for joy at the work of my God!


the minute i could string enough words together to form an intelligible sentence, i was on the phone to my IV nurse so that my removal could be scheduled ASAP!


my iv nurses refer to my line as "The Antique". my IV treatment began in january 2008. i had my first PICC line for 3 months... then this PICC line was placed...and this one has been with me just shy of 4 straight years. apparently, "The Antique" holds the record as longest lasting PICC line in DR H's office and with my team of IV nurses. none of them have ever had a patient with a line in for this length of time. (an average PICC line lasts 6-12 months)


when my nurse arrived to remove my line, she said that news of my impending removal had spread through the nursing office like wild fire. everyone in the office was running around saying,
"did you hear? did you hear the news yet? shannon's getting her line removed!"


i don't think anyone thought they'd ever see this day come.


but here it is...after 4 long and grueling and pain-filled years of IV treatment, the day has finally come. this whole journey with lyme started when i fell ill way back in july 2006...i wasn't diagnosed until april 2007. i then spent 9 months on oral treatment before it was determined that the infection(s) were so entrenched in my brain and nervous system that IV treatment was needed. to put the length of time into perspective, here's a pic of my kids and i about 6 months into IV treatment. 

August 2008 - 6 months into IV treatment
after "The Antique" was safely out, my IV nurse told me how concerned the IV team had been. after all, the removal of "The Antique" was like rowing into uncharted waters. there is always a risk that a line can break off during removal. now, that is rare...chances of that happening is about 1 in 10,000...however, we're really, really, really good at being that "1" in our house. and given the age of "The Antique", no one really knew whether or not that closed the gap on the odds. should i be the 1 out of 10,000, then worst case scenario would mean an emergency surgery that would include cracking open my chest in order to fish out the broken off line. according to my nurse, it happens but it is a very, very rare occurence. good thing she told me all that AFTER the line was safely out.
as it was, the removal went incredibly smoothly. it was actually sort of weirdly anti-climactic. and believe it or not, it was over and done with in less than 10 minutes.


while the actual removal was simple and quick, the entire day felt sort of surreal. and i found myself grappling with a plethora of emotions in the days after "The Antique" was laid to rest on my dining room table.


RIP
"The Antique"
June 2008 - Mar 2012
of course, i am elated. overjoyed. jubilant. but letting go of it is scary too... even though it's not been used for abx (i've still not had any abx since august 2011) in a sense, it has been like a security blanket. should i take a turn for the worse and once again, descend into the pit, it was there - a ready defense literally at my finger tips. but more so than that, there has been an odd sense of grief and i have bawled my head off more than once since my PICC line was removed. the line is representative of two seemingly opposing realities: it is definable as both loss and recovery. it has been attached to me for 4 years and has greatly aided my recovery, yet that recovery has come at great cost and at great loss.


this monumental occassion has had me reflecting on how much time has passed and how much my kids have grown up...my therapist framed it for me like this, 
July 2006 - the month i fell ill
"your children couldn't wait for you to get better in order to grow up."


November 2011 - healing is happening!


so much time has passed. and much of it is not easily recalled. either dimmed  by neurological impairment or marred by the agonizing and unrelenting pain that encapsulated my every day. my kids were 3, 6 and 13 when i got sick. they are now 8, 12 and 19. taylor isn't even a kid anymore, he's a man. he's even left the nest and is living on his own. i lost some very precious years with him and with my other two as well. i only have dim recollections of some of the biggest events in their lives. i can look at photos of myself and have no memory of the event...even tho' i was "well enough" to be there. i look at myself smiling, hair and make up done and no one would believe the level of pain i was in. the physical pain of this disease is unimaginable and indescribable. in order to survive it, i had to dissociate and dis-engage from life.


yes, those years are lost and those experiences can never be re-lived. it is true, my kids could not wait for me to get better in order to grow up. i can't hit the rewind button now, no more than i could hit the pause button back then... but in spite of all that we have been through, my kids love God. the shadow of His wing has covered them and He has been their shelter and refuge when all was falling apart around them. 




my line is gone and that is awesome and something to be celebrated. but it has left behind it's mark. healing is happening but we will never be the same. we are forever changed. to celebrate only the joy of this moment without acknowledgement of the sorrow would not do justice to the incredible faithfulness of God. this has been a long, dark, horrible road but He has carried us every step of the way. while it's not over yet, it is a far cry from where it's been and i praise God for His healing, His faithfulness, His mercy and His love. God is sovereign over the hurt and the pain and the loss. He is faithful to restore, to renew, to revive. He is trustworthy and He fulfills His promises in His time.


the day i got the green light for my picc removal was leap day and that was cool but far more significant than that, was the scripture passage in my devotions for that day...


it was proverbs 3:5-8...the verses & the promise God gave me at the start of this journey...


Trust God from the bottom of your heart; 
   don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go; 
   he's the one who will keep you on track.
Don't assume that you know it all. 
   Run to God! Run from evil!
Your body will glow with health, 
   your very bones will vibrate with life!
                                       ~proverbs 3:5-8



how divine! how majestic! how incredible! how awesome!
God is faithful to fulfill that which he has promised.


i've spent the past week putting together a slide show of my reflections on the past 4 years of IV treatment...it's finally finished! so, without further ado, i share with you...LEAP FOR JOY

video