July 31, 2008


Once again I find this journey has brought me to the brink of insanity.

I think the only thing consistent about this journey is that fact it is always an unpredictable, white knuckled roller coaster ride of emotions, symptoms and complications. Just when you think you’ve reached some sort of precarious equilibrium and can settle into some sort of routine then something happens to turn your world upset the balance.

This week has been no exception...

Yesterday and today I set out to get my new IV prescriptions filled. That’s a pretty simple, no-brainer procedure in most folks' world. Not mine. Filling a prescription for me is like going into hand to hand combat. It took me 2 days, including one 6 hour straight phone call marathon to 8 different pharmacies, dogged determination, massive perseverance and 18 mini nervous breakdowns before I was able to even secure these new meds from a Canadian.

I was told by pharmacy #1 that the IV meds I had been prescribed were "not available in Canada because there was a shortage at the suppliers" Furthermore, they coldly stated that even "the hospitals were in short supply." Upon hearing this I was panic stricken. "What am i supposed to do, I need to fill this prescription."

"Sorry, can't help you." came their unapologetic apology. I hung up in disbelief, ever so slightly suspicious and more than a little panicked. And so began my 6 hour odyssey of frenzied phone calls and queries to 7 other pharmacies. Fortunately, Pharmacy #2, 3, and 4 all told me that both IV meds are widely available and that there is no shortage of them…apparently Pharmacy #1 outright lied to me (BTW, when I'm all better I'm going to go egg the store).
Pharmacy #2 and #3 couldn't order the meds, but pharmacy #4 and #5 were able (and willing) to order in the IV meds for me however the meds do not come pre-mixed and ready for administration (called re-constituting) which meant that I had to spend another couple hours on the phone trying to find a pharmacy that would be able to reconstitute my meds for me.

Unfortunately, no Canadian pharmacies were up for the challenge...fortunately, I finally put a call into Pharmacy #7 and they were more than happy to reconstitute my meds for me albeit Pharmacy #7 just happens to be a 45 minute drive from my home - of course, that would be a 45 min drive south of the border into the good ol' USA. So tomorrow I will pick up my meds from the pharmacy which is 5 minutes from my house and then drive them across the border to the American pharmacy that is 45 minutes away...did I mention that tomorrow is Friday. The Friday that is the start of the long weekend.

Oh joy.

July 29, 2008


I had my first phone consultation with DR H this morning. It's been a long while since I sat by the phone waiting with baited breath for some guy to call. Ha ha.

My appointment was scheduled for 9:30am. Fearing I might somehow inadvertently miss his call, I was holding vigil by the phone already at 9:20am.
Time slowly ticked by as I sat there, impatiently waiting ...9:25, 9:26,9:29...oh no, I have to go to the bathroom...do I dare leave my post to go?

Needless to say, the phone accompanied me to the potty.

As quickly as possible I returned to a more phone friendly environment,and impatiently waited whilst I drummed my fingers on the table....

...waiting, waiting, waiting….still waiting...

... finally the call came…1hr and 6 mins late.

For the most part, this last month has been an uphill battle and I've developed several complications. Namely gall stones and vasculitis. The gall stones mean I need to stop the IV Rocephin immediately. I will be started on IV Primaxin asap. Hopefully, the switch in meds will slow down the number of gall bladder attacks I am having. DR H says that barring a miracle I will need to have surgery to remove the gall bladder - the goal for the interim is to get my body stabilized and healthy enough to deal with a surgery.

The vasculitis is causing a lot of problems...it is painful for me and complicates my treatment, so DR H wants to treat it with both pharmaceuticals and an alternative protocol.

Apparently the alternative protocol includes some sort of earthworm derivative.

"Earthworms? Are you serious?" I practically screamed into the phone.

"Yup. Of course to save on cost you could just eat them live, however you’d have to eat a lot to get the same effect." DR H wickedly chuckled into the phone.

I can just imagine him evilly grinning from his slouched position in his wing back chair.

Nice going!

First he makes me wait all morning for his phone call and now he's torturing me with earthworm supplements? I am slightly perturbed, however the remainder of our conversation was so flattering and encouraging that I've decided to let it go.

First, he told me he is amazed at my strength and how tough I must be to endure the insanity of this lengthy herx. That was very flattering and nice to hear.

Most importantly, he told me that despite it all, he is not at all worried about me making a full recovery!!!

I really, really needed to hear that.

The last 2 months have been absolutely brutal, beyond horrible...I have been so sick and weak in mind, body and spirit that I have spent many moments begging God to just let me die...then when all these secondary complications started happening, I really began to lose hope that this nightmare would ever end.

Today, DR H gifted me with a ray of hope.

July 20, 2008


The last 6 weeks have been horrendous.

I have feared I might die.
I have feared that I wouldn't die.
I have feared that this will never end.
I have feared I didn't have the strength endure.

My faith is what gives me courage.
It is my one solace in this storm.
My Bible brings me my only comfort.
And I have been robbed of my ability to see & to read.

And I despaired.

Then I remembered my 'theme song'.
It played over and over in my heart.
And it was balm to my weary, broken body.
And it was courage for my battered spirit.


by Point of Grace

For even the most trusting soul
This world can be a scary place
So much that we can't control
In every moment that we face

When a thousand what ifs
Whisper in our ears
We remember who's we are
And watch them disappear

I wanna live with a fearless heart
Courage that's coming from trust in God
It's constantly guiding me though the road may seem dark
I wanna live, wanna live with a fearless heart

There are worries chasing everyone
It's evident in times like these
But I have found the confidence that comes
From time I spend on my knees

There's a truth I'm holding onto
As these days unfold
Greater is He, God is in you
And hear it in the world

I wanna live with a fearless heart
Courage that's coming from trust in God
It's constantly guiding me though the road may seem dark
I wanna live, wanna live with a fearless heart

He's my strength, He's my shelter
He is with me all the way
He's my light and my salvation
Of whom shall I be afraid, of whom shall I be afraid?

I wanna live with a fearless heart
Courage that's coming from trust in God
It's constantly guiding me though the road is dark
I wanna live, wanna live with a fearless heart

July 19, 2008


I have endured the worst herx to date.
It has been an indescribable horror.

I have been completely bedridden.


Blind spots, foggy & clouded vision; inability to track
Severe shortness of breath, Apnea episodes
Chest pressure
Head pressure
Spatial disorientation
Extreme noise sensitivities
My organs are 'quivering'
Facial Palsy
Swollen, burning hands and feet
Feet turn purple and black
Full body joint pain
Involuntary muscle twitching of shoulders, arms, legs
Intense full body neuropathies (nerve pain)
Drenching night sweats
Kidney problems
Gall bladder attacks


IV Rocephin

and a buffet of supplements

July 18, 2008


I am in hell. Herxing Hell.

I can’t get out of bed. I can’t sleep. I can’t read. I can’t see. I can’t speak. I can’t take this anymore. I’m unable to do anything to pass the endless agonizing hours. I’m left to unseeingly stare at the ceiling, held hostage in an endless twilight zone of pain and confusion, locked away in a darkened room, alone with my ugly thoughts. This disease is holding me captive from all that I hold dear - my family, my friends, my life.

Who am I anymore? I have been reduced to a throbbing, sobbing, useless and forgotten lump. Even the tender kisses of my little ones send me spiraling downward in a cascade of pain.

And noise! Any sound is like a tortuous physical assault of a hundred fists pummeling my body black and blue. And there is noise just beyond my closed and barricaded bedroom door. The precious sounds of life. The sounds of my old life. My family. My giggly, sing songing Avery. My sweet Parker pretending to be Indiana Jones. The incessant ringing of Taylor’s cell phone. The sweet sounds of life. Yet they are a deafening and torturous sound to my misfiring brain. Hearing them sends my heart pounding erratically, my head spinning and my body twitching uncontrollably. And so I have no choice but to throw the covers over my head, and plug my ears in an effort to drown it all out and calm my over stimulated senses.

I feel like a monster, what kind of mother can’t stand the happy sounds of her children? And I wonder and I think that my family would be better off without this inaccessible shadow that is left of me.

Today, I have wept a thousand tears, and begged and pleaded with God to end it, one way or the other. I’m tired of the endless pain. I’m tired of fighting a disease that ravages my mind and body. I’m overwhelmed by the futility of it all. I can’t summon up the courage or the strength to continue this fight. I am tired of choosing to find the positive side of this. I am desperate to crawl out of my skin.

I just want out.

Please God Please…either IT goes or I go.