IV IS NOW PERKING ON THE HOMEFRONT

IV is now "perking" every morning in the Goertzen household.

I've contacted Starbucks to see if they can 'hook me up' too given that our new morning routine requires that we are bright eyed and bushy tailed.

My husband, My superman...

My rock who keeps me laughing in spite of it all.

"A random misplaced shot?" you wonder. No. This is what life is like with Graham. I find random things hidden around my house every day.

Like crows keeping a watchful eye on my flushing syringes.

And I have awoken to find Monkeys' hanging from my IV pole.

"He's not a doctor, but he plays one on TV."

On top of keeping me laughing, Graham deserves an honorary MD after his name....as he agreed to be taught how to administer my IV.

He exuded such an air of professionalism until nerves made for some jittery reflexes and he ended up anointing the ceiling with saline from a syringe.

Hands down, he's my most favorite doctor.

This is Eugenia, she is one of my home care nurses. A nurse come by every 3 days to make sure that we are behaving ourselves.

My other home care nurse, Princess Avery. She's the nurse that calls the shots.

However, she has some height challenges to work around...

...so once in awhile, I assist.

I'D LIKE A FACIAL WITH THAT PICC LINE

I had my PICC line surgery today!



They have a nurse in the hospital here who does PICC line insertions exclusively. When I was taken into the procedure room we, they had dimmed the lights and had classical music playing...it was almost spa like...almost. Too bad they didn't throw in a facial with the package.

The procedure itself was fine, I was super anxious but the nurses were great and did a lot to try and alleviate my fears (again, a facial would have gone a long way in calming my nerves).

I found out 2 interesting yet probably relatively useless facts about my body today. First, I have very tough skin...this was discovered when they bent 2 needles when trying to administer the local anesthetic. According, to the nurses, having tough skin is a good thing - means less wrinkles.

Secondly, I have very unique vein anatomy. Not entirely sure what that means.




And apparently they had trouble getting the line through my shoulder area because I'm too bony and skinny in my chest area. Not sure why they felt the need to point out the obvious.




But all being said and done, it went well. I was at the hospital for about 5 hours total and had my first dose of 'Lyme Chemo' administered while there.

I had amazing nurses and Graham, of course,
did his best to entertain the hospital staff.

I am sore at the incision site and very tired but other than that I am okay.

So, my PICC line is in. And I am ready to start this new chapter in my journey.

Bring it on Baby!

DEAR DR. MURAKAMI

This is Dr M.

He is the doctor responsible for finally putting a name to the nemesis that was systematically destroying my body, mind and life.
He’s an amazing doctor and an extraordinary person.
I hold him with the highest regard. I don’t just consider him my doctor... I am honored to call him my friend.

For many, many years Dr M stood alone in the medical community waging a one man war against both Lyme Disease and the ignorance of the medical community towards it. He has saved countless lives because he bucked the system and chose to do what is right as opposed to what is convenient.

Dr M has endured and fought against the ignorance of the system for many, many years. The incredible stress of being relentlessly harassed by the BC College of Physicians and Surgeons, finally took its toll on our dear doctor and health issues forced him into "early" retirement. And well, you know, he is 76, so I suppose he's certainly 'allowed' to retire.

Unfortunately, his retirement means that we have lost the only doctor in Canada that was willing and skilled enough to clinically diagnose LD...and then brave enough to buck the system and prescribe individualized treatment.

He's a maverick. He's a genius. He's a skilled physician. His patients were all lucky to have him. And we acknowleged it and knew it.

And Health Canada and the BC College of Physicians and Surgeons were lucky to have him. Too bad they won't acknowledge that or admit it.

But I believe that day will come.

But until that day comes those of us with LD will be forced to look outside of Canada to find a doctor who can properly treat our disease.

True to his character, Dr M has not let retirement stop him in his determination to spread awareness and educate physicians about LD. And even though he is retired and I am no longer his patient, he still takes the time to check on me...in my heart, i will always be his patient and he will always be my doctor.

Dear Dr. Murakami

On behalf of my family and me, we wanted to offer a humble expression of our gratitude for all that you have done. Our lives have been forever changed because of your passionate dedication in fighting Lyme disease.

When we think of what you mean to us, these are just a few of the words that come to mind:

PASSION PURPOSE SERVICE SACRIFICE INTEGRITY GENEROSITY COMPASSION HOPE

Your unwavering belief in my fight has given me hope. Your care and compassion has restored my sense of self and my dignity; and your tireless efforts in helping me regain my life have meant that my husband is getting his wife back and my children are getting their mom back. At my sickest, I was so wracked with pain that I was unable to even endure the tender embrace of my children. But because of your care, I am able to once again joyfully hold them in my arms. There is no gift more precious than that.

Thank you…

You have left an indelible imprint on our lives and you will always hold a special place in our hearts.

Sincerely,

The Goertzen Family

THE POWER OF PRAYER

We had a very LONG appointment with the infectious disease specialist yesterday.

Thank you for your diligent prayer for this appointment. We believe that God heard and answered those prayers.

While this doctor was resolute in his acknowledgment that there is definitely something wrong with me, he was not willing to exclusively conclude that what is wrong with me is actually LD. Frustrating? Yes, but not surprising given how politicized the diagnosis and treatment of this disease is. And even though he acknowledged that there is great controversy surrounding the diagnosis and testing of LD, he was not willing to give any credence to my American Lab test results. However, he did acknowledge that I certainly have the clinical presentation of LD.

He went on to say that even though I have the clinical presentation of LD, he would like to pursue further testing (i.e. a spinal tap) and investigation into my case. Not sure what he thinks he’s going to find that hasn’t already been looked for but we are pleased that he wants to be so thorough.

After he says all this to us we were starting to feel very discouraged because it seemed that if he was not willing to conclusively say it is LD than he probably wouldn’t be willing to treat me for it.

This is where we believe the power of prayer became totally evident.

After concluding that this doc isn’t totally convinced that I have LD and repeatedly re-iterating that over and over and over, he then proceeded to say that he would order 30 days of IV treatment to treat me for LD.

We nearly fell out of our seats in shock.

Truly seems to be bizarre…until you consider that God is ultimately the one at work here. And he works in wondrous and mysterious ways. His ways are not our ways.

So PTL, our prayers for IV treatment have been answered. IV treatment will be administered daily through a PICC Line.

The PICC Line is inserted through minor surgical procedure and so needs to be inserted at a hospital. This should all take place sometime in the next 2 weeks.

The doctor made it clear that he would follow the very conservative CDC criteria for treatment of LD - which means that he will only administer IV treatment for 30 days.

From what we have learned about treating late stage lyme disease this is not long enough. However, we believe that God is in control and we are praying and ultimately believing that we are nearing the end of this very long journey and that 30 days will be enough for me.

Thank you so much for your prayers.

LOSING DR. M

I just found out, well, had it confirmed, that my precious Dr. M is retiring in Mid-February. He is the doctor who has been treating me for my LD for the past 9 months.

He had told me at my last appointment with him (in December) that he was pretty much ready to throw in the towel so to speak, but I never anticipated it would be this soon...

This makes today's appointment with this infectious disease specialist feel that much more pertinent and desperate.

Please pray that I get the treatment I need and that this treatment will FINALLY have the curative result I so desperately need - because additional oral treatment even AFTER IV seems to be the norm in cases such as mine, and I have always figured that even if I get the IV that I would still need to follow it up with another course of oral treatment and that that would happen under the care of Dr. M.

Please pray for Dr. M - I know that this must have been an incredibly difficult decision for him to make. He is so caring, compassionate and dedicated and knows that so many people need him - but he is 76 and his health is declining due to the ongoing harassment he is constantly inundated with by the BC College of Physicians & Surgeons - all because of his staunch concern and devote treatment of patients with Lyme disease.

Lastly, please pray for those that are affected by this horrible disease and are now facing an uncertain future with very few medical options to turn to. Those in the Lyme community are feeling very lost, very scared and very desperate as there seems to be no other doctor in Canada willing to stick their necks out to treat late stage LD as Dr. M has.

I'm trusting but I'm reeling and my heart is heavy.

POSITIVELY MIRACULOUS!

PRAISE THE LORD! Positively positive, I am.

Yes, my American Lyme test has returned a POSITIVE result.

I love America! God Bless America!

When my doctor called to give me the results today, I was shaking and crying and when he told me my results were positive, I was so relieved I felt like barfing. I even told him that.

"Dr. M," I screamed."I am so relieved I could barf!"

He giggled. Yes,I made my dear old doctor giggle.

In addition to testing positive for Lyme disease, I have also tested positive for the co-infection "Babesiosis" (which Dr. M had clinically diagnosed me with 8 months ago - as far as I'm concerned my doctor is a genius).

These positive test results are now in addition to the Canadian POSITIVE result I had in August for another co-infection called "Ehrlichiosis".

Apparently I was bit by one very disease-ridden tick. Nice. To add insult to injury, that ruddy tick is probably still out there, lurking on the butt of some unsuspecting deer.

My lyme doctor (Dr. M) who has been treating me for the past 9 months, feels that IV treatment is needed in my case however only an infectious disease specialist can authorize and administer IV treatment.

I have an appointment with an infectious disease specialist this coming Monday, January 7. Your prayers are appreciated and are very needed for this appointment as my positive results are not necessarily a ‘slam dunk’ for getting IV.

It is our hope and our prayer that based on my symptomology and quality of life (or lack thereof) and now armed with these positive test results that this will be enough for the infectious disease doctor to move forward with administering IV Treatment.