December 23, 2009


yesterday was our follow-up appointment at Children's Hospital.

at best, it was incredibly disappointing.
the "thorough followup investigation" that we were told would take place when parker was hospitalized last weekend did not happen. we saw the same doctor that we saw at his prior appointment and she knew nothing of his hospitalization!
his chart did not even contain the results of all the testing that was done while he was in hospital dec11-12. the doctor had to pull them off the hospitals records system herself.

very quickly, it became clear to us that the promised meeting with a team of doctors that would consult about parker's case had not happened... nor will it. rather parker's condition was treated with what we perceived to be a dismissive, nonchalant, cold and uncaring attitude...
and he was given a 'diagnosis' of Idiopathic Pain Syndrome.
idiopathic means the cause (of the pain) is of unknown origin.
we were told by the doctor that basically some unknown entity is causing parker's symptoms. it has triggered a pain response in his body that his brain is not able to shut off. kind of like not being able to turn off a screeching car alarm was the analogy used by the doctor.

in spite of parker's blood work being abnormal (low RBCs, high WBCs, whacked igE antibodies)
there was an abrupt and total refusal to do further testing or investigation into uncovering what is the cause of his "idiopathic pain" and his other symptoms (headaches, fatigue, shortness of breath...etc)..

our appointment ended with a referral to a pain management specialist....rather than trying to figure out what triggered the alarm in the first place, it appears it is easier to pass him off to a doctor who can prescribe "ear plugs" so that he can learn to live with the racket.

and the result of that Canadian lyme screening test (a.k.a. the Elisa) that i was praying like crazy would render a positive? well, it did not.
and our provinical lab refused to do the more sensitive secondary testing (called the Western Blot).

oh, how i yearned for a different outcome to this appointment... i felt i needed that canadian test result to be positive in order to have some sort of believable and definitive diagnosis of lyme - to confirm Dr. H's suspicion, and ours. i guess a part of me hoped that the paper proof of a positive result here would lead to an acknowledgment from our Canadian specialists.

from a human perspective, once again we have been left with the feeling that lyme is a four-letter curse word in the medical system here - it is the pink elephant in the room, the hot potato that gets tossed around because no one wants to handle it.

i will say this...i left yesterday's appointment incredibly upset, fed up, frustrated, confused, hurt, crushed, perplexed, and rip roaring mad and spitting the doctor, at this stupid disease, at this whole sordid journey called lyme and... at God.

while i need to vent my angst, i do not wish to pollute this post with nor dwell on these emotions. acknowledge, yes.
dwell on, no way!
i have not remained there. nor do i wish for those that are walking this journey with us (YOU!) to either. God is in control. He is bigger than this.
i know God understands my anger and can handle it... but to me, i attribute my anger to a lack of trust on my part...and that does not sit well with me.

upon returning from the hospital, i posted on my FB status, that i needed folks to pray as i needed some heavenly perspective.

be careful what you ask for...

after posting that, i opened my bible... this was the first thing i read,

"to sum up, let all be harmonious, sympathetic, brotherly, kindhearted and humble in spirit; not returning evil for evil, or insult for insult, but giving a blessing instead." 1 pet 3:8-9

and the next verse i read?

"be joyful always, pray continually, give thanks in ALL circumstances."

Lord, you have got to be kidding me! that is the LAST thing that i want to do!

i read on in my devotional for the day,

"i especially want to thank you for what you plan to do through the things that disappoint me, upset me, make me anxious or break my heart. thank you for your ultimate good purposes in allowing these things."


i was pretty much at the extreme opposite end of that emotional spectrum! rejoicing, thanking and praising for this is the last thing i want to do.
but no matter how justifiable my reasons for not, how can i refuse to rejoice, thank and praise?

my devotional went on to say,

"my heart rejoices in You, Lord, for You are my strong shelter in times of trouble and danger and stress, my hiding place to whom i may continually resort, my father who lovingly provides for me, my shepherd who guides and protects me, my champion who upholds my cause as His child and defends my highest interests." (31 days of praise)

i read on in the Bible,

"do you see what we've got? an unshakable Kingdom! And do you see how thankful we must be? Not only thankful but brimming with worship, deeply reverent before God. For God is not an indifferent bystander. " Heb 12:28-29

listen here to this song, HOW MANY KINGS... reflect and celebrate!!

"God can pour on the blessings in astonishing ways so that you are ready for anything and everything, more than just ready to do what needs to be done...He throws caution to the winds, giving to the needy in reckless abandon. His right-living, right-giving ways never wear out or run out." 2 cor 9:8-10

we have been riding a huge tidal wave of blessing poured out by God himself through his people . He is pouring out His blessings on us in the midst of this pain and suffering. And most importantly let me not forget the reason for this season.
over the next couple of days, we will be celebrating the birth of Jesus. if i hang on to anger, i will allow it to overshadow the miracle of His birth, the redemption of His death and the hope that is found in His resurrection.

i choose to
Rejoice, Thank, and Praise - BLESSED BE HIS NAME

May you to find the Blessing of this season falling fresh on you.
Merry Christmas!

“It is written,
Rejoice with His people!

And yet again,
Praise the Lord,
Praise Him, all you people of the earth.

And in another place Isaiah said,

The heir to David’s throne will come,
and he will rule over the Gentiles.
They will place their hope on him.

I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit."

rom 15:10-13


Joanne said...

I am sorry to hear your dissapointing outcome at the hospital, sadly it is like so many throughout the World when dealing with Lyme Disease. Many of your experiences were so like a friend of mine in the UK who's daughter is being passed from Neurologist to pain doctor and no one being able to help whilst private LLMD has PCR positive for lyme but the NHS have not been able to replicate and so won't support the IV antibiotics. Even if they did get NHS positive the HPA follow IDSA guidelines and would only treat for a few weeks so it is still not going to move things forward.

I am not a religious person and so have not your faith in God but if you are a believer I seem to remember God was supposed to have given you free will so I recommend that with that free will you continue to have the strength to fight for your lyme treatment privately if necessary and I hope your God will grant you the strength to keep on fighting until you get what treatments you need for your son.

I wish you well you are fortunate to have an LLMD guiding you even if you have to travel out of Canada to see him.

I hope 2010 is a better year for you all.

My New Life said...

I understand your anger and disappointment completely - it is so much harder when it is our children that are in pain. If I understand, then I know God understands, and is absolutely fine with how long you need to express those emotions for. You and your family are on a difficult and testing spiritual journey and I send you all my love. You inspire and humble me, and your grace reaches out over the ocean. From Bev, in England.