June 14, 2008


Finally, all has been sorted out in regards to filling my rx's and so we are ready to get the ball rolling.

I managed to get my rx for IV filled here in Canada. PTL! This means that insurance will at least cover the cost of the meds. However the meds come in powder form and need to be attached to saline bags so that I can administer them (called re-constituting) No pharmacy in Canada was able to do that...or those that were were unwilling to assist me. Outrageous. Yes. Unbelievable. Truly. Just one of the many roadblocks we have faced since getting back from California. There seems to never be anything simple or straightforward about this process. Ever.

However, we found a pharmacy across the line that could and would re-constitute my meds for me. God Bless America. So, Graham and I set out for the pharmacy in Bellingham today. I suspect this is will be the beginning of many, many trips.

This morning I ran my third dose of IV Rocephin. And I am really beginning to feel rough. I had 3 weeks of Bicillin injections prior to getting my PICC line in and starting the IV Rocephin. I had my last Bicillin injection on Tuesday and then started IV 2 days later. This morning I ran my third dose of IV. I am beginning to feel very rough.

By the time we got home today, every bone in my body was screaming with hot, angry fury. My feet and hands are burning. My head feels like it is going to implode. My eyesight is coming and going. A cavalcade of insanity is starting to roll over me.

I believe a herx is now rolling my way.

June 12, 2008


I had my PICC Line surgery today. Fortunately I was able to get it done here in Canada as I found away to bypass the traditional Infectious Disease route. Of course, given that my surgery was being done by less than traditional avenues, I was hoping to fly under the radar, so to speak...as in get in and get out before anyone asks too many questions.

The nurse who booked my appointment for me was aware that I have LD but I was hoping that that information would not go further than her. Not because I was trying to be sneaky but more out of the need for self-preservation. I have been subjected to so much abuse by the medical system that I wanted to avoid any opportunity to raise undo questions or deal with skeptical scrutiny. Of course, given the fact that my surgery was being done by less than traditional avenues, I was certainly hoping to get in and get out before anyone asked too many questions.
You know, fly under the radar, so to speak.

However fly under the radar, I did not. By the time it was over, 3 surgeons had been called in, 1 resident and 8 nurses had attended.
And a procedure that normally takes 20-30 minutes had taken 2.5 hours, and Lyme Disease was the topic of discussion for the ENTIRE 2.5 hours.
Nothing like flying under the radar...NOT!

While Surgeon #1 was prepping me for surgery, one of the nurses was chatting with me. Then all of a sudden, she says, "Are you the girl from the US who has Lyme disease?” My heart started pounding and I nervously responded, “Ah no, I’m not from the States."

“But you have Lyme disease, don’t you.” she queried. Sounding to me as though she was questioning me with a megaphone

“Yes." I tentatively whispered.

Surgeon #1 stopped his preparations and said, “What? You have Lyme disease?”

I was so tense by this point that I half expected my head to blow off. Yes." I quietly, almost apologetically admitted. "I do."

Then the unexpected happened, he grabbed my hand and empathetically said, “Oh, no that’s a terrible disease! I just recently saw news coverage about it, and how these folks had to fly to California to get treatment.”

“Ah, yeah, I was one of those folks on that flight.” I admit.

By now he’s patting my hand and says “Oh my gosh, you’re that girl who's dad hired the jet?”

"No, I’m not her but I was one of the other passengers on that flight.”

By this time, the OR was buzzing with questions about LD and the whole nine yards.

At this point, Surgeon #1 who had been working on my arm for about 30 minutes already says my veins have collapsed and they need to call in Surgeon #2. Surgeon #2 enters amidst the round table discussion that is going on about me and LD. Upon hearing this, he asks, “Lyme disease. Who has Lyme disease?”

“I do.” I confess…once again apprehensive as to what his reaction may be to my confession. Much to my amazement he has the same response surgeon #1 has. He's wholly emphathetic, is even somewhat knowledgeable about the controversy of it and surprisingly acknowledges how terrible that it is.

So, the LD discussions continue as Surgeon #2 takes a crack at my arm. Another 45 minutes passes and 3 more nurses are called in to assist. Before long, Surgeon #2 is suggesting they call in Surgeon #3. By the time Surgeon #3 enters the OR, there are 6 nurses attending, I have a resident standing on a stool behind my head, torquing on my tourniquet, my arm has gone completely numb, I've had numerous needles, 3 incisisons have been made in my arm and there have been 8 failed attempts to insert my PICC line.

And they are all still wanting to talk about LD. Of course, Surgeon #3 jumps into the hoopla and as he is directing Surgeon #2, he wants to know "What's with all the talk about LD?" At this point, I was so frazzled by the fact that they were butchering my arm, that in exasperation I said "I have LD alright?" and then nearly yelled, "Enough with the talk could you just get my PICC in and send me on my merry way."

Suffice to say, the whole surgical unit at my local hospital got a crash course on LD today. Too bad it came at the expense of my arm and my arteries.

June 2, 2008


I've come home from California with a fistful of needles.

Great big, 3 inch long needles.

And a husband who has been trained to use them. ON ME!

Yet, he turns pale and ashen at the sight of them.

Great. I can just see it now...a needle hanging out of my butt and Graham out cold on the floor.

I called a friend who is a nurse to see if she would be willing to come over and give Graham another hands on tutorial (oh the indignity!). But hey, whatever it takes to help build his confidence in jabbing a 3 inch needle into the rear of his wife.

My nurse friend immediately was like, "Never mind I'll just come by and do it for you each time."
Graham is jumping for joy and woozy with relief.

While we were making scheduling arrangements for her to come by to give me the shots, we got to discussing my IV treatment. I am on the bicillin injections until arrangements can be made for me to have a PICC Line installed. We figure that getting that done in Canada is not an option, so Dr H and his staff worked hard to make arrangements for my PICC line surgery to be done while we were still down in California.

However arranging one on an emergency basis was complicated and drove the cost of the surgery from $750 to $2000. Dr H felt my bicillin injections would help to hold the disease process at bay therefore giving us a little more time to set up a pre-arranged surgery. He's working on setting that up in Seattle or Portland so that I don't need to make another trip to California in the next couple of weeks.

As I explained this all to her, she all of sudden said she had thought of a way that I might possibly be able to get my PICC Line put in here. "Let me make some phone calls and I'll let you know what I find out when I come by to give you your butt shot tonight."

I was totally dumbfounded. Could there really be a way? You know when an immediate surgery ended up being a no-go in California, I had just had a sense that there was a reason for it. I really didn't believe that getting one done in Canada would be possible but I wondered... and knew I just had to trust God with the details.

My nurse friend arrived looking so very gleeful this evening. Of course, I assumed it had to do with the fact she was about to spring another lame butt joke on me - seriously, the butt jokes here have been in endless supply. ha ha.
However, she in her matter of fact, direct way happily announced, "Have your doctor fax over an rx for a PICC to this number. Your PICC line surgery has been arranged for next week."

I immediately burst into tears. Hugging her and thanking her.

She just grinned and gleefully commanded, "No thanks necessary. Now, drop your pants and bend over."

I was humbled
and incredibly grateful for her guidance and help.
My nurse friend insists on remaining anonymous
because it was "no big deal".

Which is why she's earned the hallowed title "MY BUTT NURSE"

And, yes, God works in mysterious ways.