April 2, 2010

ARE YOU KIDDING ME?


it has taken me a long time to write this post because i am angry. no that would be an understatement.
i am
outraged
furious
livid
horrified

yup. that's more like it.

parker's treatment in canada has been terminated.

ARE YOU KIDDING ME?
no
sadly i am not
(but happy april fool's day anyway! ok so i realize it's a little past that already - thought i'd be finished this by then)

last monday, we learned that parker's treatment was in jeopardy. this news was delivered to us during parker's follow up appointment with the doctor from children's hospital who had agreed to partner with DR H in treating parker.

we sat in an exam room and listened to her tell us that she was "not comfortable" prescribing treatment to parker.

ARE YOU KIDDING ME?

this after just ONE MONTH of antibiotics.

ONE MONTH in which the patient, MY CHILD, has shown undeniable signs of improvement.

ONE MONTH?
are you kidding me? that's not even enough treatment according to the flawed treatment guidelines.

it is only by the grace of God that both graham and i kept our dignity and anger in check as we sat there. but you had better believe that we passionately advocated for our son. i told her that in no uncertain terms i would passionately fight for treatment for my son and i would not take her dismissal of our son lying down.

and so i asked her some tough questions...

"parker has a life threatening infection, does he not?"

"yes," she acknowledged, "he has a life threatening infection."

"are you telling me that you are refusing to treat his life threatening infection?" i asked.

"you have to understand, it's my career and license at stake."

"it's my son's LIFE that is at stake." i incredulously replied

"but if i prescribe and something (bad) happens, it will be on my hands."

i said,
"if you STOP prescribing and parker deteriorates and returns to the state he was in 30 days ago, who will be responsible for that?"

a shrug of the shoulders and upturn of hands was the only response i got.

ARE YOU KIDDING ME?
no
but at least our pushing and questioning prompted a promise from her to "re-think" her position and talk to her colleagues.
ultimately, she did not change her mind.

last friday, we received the official word that she would no longer be prescribing parker's treatment.

she stopped treating parker...despite the fact that she acknowledged that parker has a life threatening infection.

she stopped treating parker...because she is fearful of losing her license and having her career tarnished

she stopped treating parker...because she is "not comfortable" - yet admitted she feels badly about it because she can see that the treatment is making him better

she stopped treating parker..but asked 6 or 7 other doctors if they would treat him

all of them declined...on the basis that they were "not comfortable"

are you kidding me?
what kind of a world would we live in if we all stopped doing anything that made us feel uncomfortable... or never did anything that made us feel uncomfortable to begin with.

as frustrated and angry as i am with this doctor for opting out of treating parker, a part of me understands her perspective.
ARE YOU KIDDING ME?
no i am not.
even though i am angry and everything in me wanted to reach across her desk and slap her upside the head, i get that she doesn't know enough about lyme to treat it. and how can she be expected to treat a disease she knows very little about ? i get that. what i don't get is her unwillingness to LEARN about it. here we have a doctor (DR H) who has 9 years experience treating lyme, has treated hundreds of sick kids and whom was more than willing and did in fact talk to her, fax her, email her, write her -all in an effort to guide her and teach her about treatment. it feels like an absolute joke to sit in a doctor's office that is located in a hospital that is considered to be a teaching hospital...in an office where you are always seen by a resident first, who then consults with the doctor in order to LEARN medicine.

ARE YOU KIDDING ME!

naturally, my gut reaction is to vilify this doctor
but the bottom line is that she's not the enemy.
is she doing the right thing?
in our opinion that would be a resounding NO!
but is some of my anger misdirected?
probably
but where then do i direct my anger?
the college of physicians and surgeons (CPSBC), the BCCDC, the IDSA? certainly, in all manner of speaking, it is these powers that continue to perpetuate the myths about lyme, suppress the truth and threaten to bring sanctions or disciplinary action against the few doctors that are willing to treat it.

i am angry at a medical system that publicly states that they are educating our physicians about lyme, and that doctors are free to call and get information about it YET we are hard pressed to find even one whom possesses enough knowledge of it to "comfortably" treat it. I am angry at a medical system that has harassed and penalized doctors that are willing to treat it. of these, they have made examples...one could even venture to say it was intentionally done in order to serve as a warning - "treat chronic lyme and it will cost you."
the threat appears to be serving its purpose.

so where does that leave me and my boiling blood?
it leaves me with a sick kid who has been abandoned by
doctors

my knee jerk reaction is to find a way to seek revenge. after all, we're talking about a life and death matter here. it is clear that they would play pass the hot potato with our son's life....until it ceased to exist. that being said, i need to make this clear - parker's treatment will not stop. DR H is his doctor. abandonment by our canadian system does not mean that parker will not receive treatment. it only means that, in addition to all our other out of pocket expenses, that we will now have to somehow absorb the cost of his meds too - from the USA. i want to make them pay...after all, this is costing our family everything. oh, you better believe, i want to stick it to them, get in their face and make them do the right thing. yet, no matter how justifiable my anger, it does not justify a vengeful reaction. in doing so, i would be demonstrating the very behavior that i find so outrageously offensive about them.

do i want folks to be as horrified as we are?
of course
do i want my friends to jump to my defense and rage along with me?
of course
i would be lying if i said i didn't want that
but, at the same time,
i do not wish to be a conduit from which bitterness, rage and anger stems and flows


so where does that leave me and my boiling blood...in the context of my sick kid, our fight, and my faith?

sadly the systemic bias that exists in this country will not be changed in time to save parker's life and give him the treatment he needs.
does it mean that we don't continue to advocate for change?
absolutely not.
it is our responsibility to do that.

in the context of the bigger picture, we are not alone in our experience with this systemic bias. it is an abomination that is wide spread in this country. its abuse is a wide-spread plague that forces nearly all canadians who contract the disease to flee south of the border for help.

do i have a responsibility to teach my children to stand up for themselves in the face of injustice, unfairness, prejudicial treatment and abuse?
absolutely
but i also have a responsibility to model to them how to do that in a way that upholds our faith and maintains our integrity and emotional health as a family.
living in a whirlwind of constant criticism about the medical system with parents who incessantly screech about the unfairness, the abuse that we are living under...and are hypersensitive towards the behaviors that "prove" that, well, that could keep us as sick as the denial of treatment could.

yet, i wonder if it is possible for me to fight the system without living in a state of perpetual rage? is it possible to advocate for change in a way that is constructive rather than destructive? how does one not tolerate the intolerable in a way that is not intolerable in its own means?

so i actually know the answer to that.
i'm just a little too hot under the collar to do it just yet.
but it starts with "P" and ends in "RAY"

"love your enemies and pray for those who persecute you." matt 5:44

are you kidding me?
HA! I WISH!

another translation reads like this:

"i'm telling you to love your enemies. let them bring out the best in you, not the worst. when someone gives you a hard time, respond with the energies of prayer..."


it takes a whole lot of energy to be and stay mad. if i am devoting my energies to prayer, how much energy is left over to bitterly spew about their recriminations against me? interesting.

certainly, praying for "them" and surrendering my anger doesn't mean we stop fighting the system and advocating for change.

no way.
in fact,

"we are obliged to fight to remove the injustice (ours and those of others that are oppressed). we should face the oppressors, push them, and fight to change the conditions for the oppressed. therefore there is no way forward but to enter into the struggle.
BUT we must consider the commandment to love our enemies,
in order to prevent us from the danger of deviating from fighting the oppressors into being oppressors ourselves. if we fall into the trap of replicating their actions or attitudes we destroy our humanity by neglecting theirs, our souls would be tainted and they would have defeated us because we took their positions."

prayer is a powerful tool against my adversaries. it may or may not change their position but it will free me from the oppressive hostility i feel towards them. praying for my enemies allows me to surrender my anger and relinquish my need to somehow make them do the right thing. indeed, it allows me to view this whole horrific situation in the context of the sovereign power of God.



11 comments:

Kristie said...

Wow.....that's quite an admirable response. I'm not sure I could. If they are so concerned about their reputation, I would want to take that reputation to the media and then talk with them about their precious reputation, especially in light of their Hippocratic Oath.....

still praying *hugs*

Renee said...

I am so sorry that you are going through this...poor Parker. I just do not understand what has happened to our medical world and the "firm do no harm" oath....no harm to themselves I guess....You are so right, we all need to pray. There is great power in prayer!

Lyme Action Group said...

Thank you for sharing your story. The situation with Parker is heart-breaking. However this may be an opportunity to raise the issue with the College and the government. The doctor is in an untenable situation, acknowledging the seriousness of the illness and refusing to treat it because of perceived constraints imposed by the medical establishment. To have a doctor admit this is extremely rare. Please make sure your elected representatives, the College, and radio and television are aware of this. Blessings!

My New Life said...

What can we do? Is there anything we can do? I have never felt so helpless in my life. You are the most extraordinary woman I have ever not met, and the way you face these difficulties with honour, integrity, and heart never ceases to astound and inspire me. I don't know how you will get through this, I just know that you will, and while you wait for the answers to come to you - is there anything we can do? Any help that we can be? I hold you all in my mind, surrounded by a white light, my thoughts creating a picture of a perfect, healthy future for you all. Sometimes I allow myself to rage on your behalf, or to weep when it seems too much, but always your example brings me back to a positive place, where love is the energy I send to you, and hope and grace are the foundations.
Very humbly yours, Bev from England xxxxx

Jude said...

Shannon, thank you so much for this blog. It proves to me, yet again, that the Gospel changes lives and people. There is no other explanation for your ability to see this thing from the perspective that you do.
I've been studying Psalm 119 for my bible study this past week and had a couple of assignments that are teaching me some greater truths that I had not learned before. I would encourage you to read it through (all 176 verses : ) And look for the tool that gives the psalmist victory in spite of affliction, persecutors and persecution, trouble and anguish.
http://www.gnpcb.org/esv/search/?q=Psalm+119

Your family is constantly in our prayers.
We love you and praise God for your life and testimony.

Jude

lymenaide said...

Wow, this makes me so mad and upset! AND determined to make change!!!

I wish you were closer, I would love to interview your family for the Paint May Lyme Green campaign.

http://lymenaide.wordpress.com/paint-may-lyme-green/

Ramilin said...

I am sickened and outraged for you. My son is also lyme infected. Thank you for posting this blog. We need to get the word out. No one, esp children should be suffering at the hands of idiotic doctors who care more about their careers, then the oath they took.

Angela said...

OMG! I truly feel for you! However, this IS part of the game, the MD here is not the enemy, you are right about that one. I have had lyme for 16 yrs now and all 4 of my children have it as well, in -utero, and my 3 yr old is autistic from lyme (now fully recovered due to MY theories and treatment!) and my nearly 2 yr old was diagnosed as TERMINAL, LISSENCEPHALY, CEREBRAL PALSY and a bunch of other things by 4 neurologists and a team of other MDs, only to find out, through my own advocation and research, that he has severe neuro problems from lyme. I will be frank with you here, you need to seek out MDs that will listen to your situation and IGNORE those that see differently. I know Canadian medicine is different but travel out of the country if you have to, do WHAT you have to do. Do not let your child end up in a wheelchair or worse due to lack of treatment. I strongly urge you to continue the fight, use this situation as a stepping stone, and work forward in your family's treatment. I see multiple MDs in 3 states for my family of 6 and we all have lyme. Bottom line is that there ARE options, one must think outside the box to find them. If you need me, I am here for you. No one fights harder than me for my own kids, and that of people with Lyme everywhere, because I don't back down. I am a biologist and I have a PhD so when the MD's start talking to me like an idiot I tell them where they can shove it. Take the initiative, they WILL follow. God bless your family, you WILL get through this!!! you can find my blog on my youngest with lyme if you wish...thanks!

Angela said...

OMG! I truly feel for you! However, this IS part of the game, the MD here is not the enemy, you are right about that one. I have had lyme for 16 yrs now and all 4 of my children have it as well, in -utero, and my 3 yr old is autistic from lyme and my nearly 2 yr old was diagnosed as TERMINAL, LISSENCEPHALY, CEREBRAL PALSY and a bunch of other things by 4 neurologists and a team of other MDs, only to find out, through my own advocation and research, that he has severe neuro problems from lyme. I will be frank with you here, you need to seek out MDs that will listen to your situation and IGNORE those that see differently. I know Canadian medicine is different but travel out of the country if you have to, do WHAT you have to do. Do not let your child end up in a wheelchair or worse due to lack of treatment. I strongly urge you to continue the fight, use this situation as a stepping stone, and work forward in your family's treatment. I see multiple MDs in 3 states for my family of 6 and we all have lyme. Bottom line is that there ARE options, one must think outside the box to find them. If you need me, I am here for you. No one fights harder than me for my own kids, and that of people with Lyme everywhere, because I don't back down. I am a biologist and I have a PhD so when the MD's start talking to me like an idiot I tell them where they can shove it. Take the initiative, they WILL follow. God bless your family, you WILL get through this!!! you can find my blog on my youngest with lyme if you wish...thanks!

Anonymous said...

I shall live by the example you has just spoke to me with,i will pray for your son.....and my daughter, you are a much better person than me, and thats why i will learn from you and everyone else who has lyme.....Because I would OF reached across that desk with a closed fist......i shall pray to god that this does not happen to 1 more child, and i will ask for away to channel my anger in a more positve light.
Being the MOM of a child who has been treated in the same way,my blood boils too.we shall go to the poor house with a big smile, because we will have gotten our child well.
You are a much better beautiful soul than me.

ejbemail said...

I HAVE TWO WORDS FOR YOU ( AND WE MUST START DOING THIS TO SET PRECEDENT AND TO GET THIS TO STOP AND BELIEVE ME- IT WILL STOP THIS):

MALPRACTICE LAWSUIT.