May 30, 2008
I had planned to take Graham to San Fran for his 40th birthday 3 years ago. For over a year, I secretly dreamed, schemed and saved up enough money for us to go. I had the whole trip planned. I knew which hotel we'd stay at, which restaurants we'd eat at, which sights to see and which areas to avoid. I had the whole trip planned and then I got sick. Obviously that effectively shut down our travel plans and ate up our savings account. How ironic then that we should find ourselves here now because I am sick.
We were talking about the irony of this as we did our driving tour of SF today. It suddenly donned on me that it would be kinda neat to see the hotel that I had dreamed and schemed about.
Thanks to Mortimer, our GPS wizard, we were quickly transported to The Tuscan Inn.It was even better than I had hoped it would be. It was delightful...a little piece of Italy in the heart of San Fran.
The rustic Italian decor of the lobby welcomed you in and comfy chairs beckoned you to sit back and relax. Adding to the ambiance was a myriad of folks mingling around a roaring fireplace enjoying the hotel's evening wine reception, which is FREE, I might add.
I must admit I am actually fairly impressed with myself. In theory, I sure know how to plan the perfect romantic getaway.
In reality, we have RM 124.Sigh, how ironic to be there but not be there.
May 29, 2008
We did a little stopover at Fisherman's Wharf to do some shopping for the kids. Peter struck gold in a 5 and dime store that sells tacky touristy thingy maboppers. We could hear his giddy voice beckoning us from the darkest recesses of the store. We went to investigate. There he stood, shaking so hard with laughter that he couldn't even speak. All he did was hold up a bobble head. The minute we saw it, we burst into hysterical laughter.
Mr Bobble Head had the strangest, most unbelievably uncanny resemblance to …well, anyone who’s seen any of the news coverage on LD in recent months would certainly have no trouble ascertaining who Mr Bobble Head looks like. I’m not going to name any names, but one could say that he’s a dead ringer for a certain health minsters bumbling, sidestepping, head bopping denials.
We spent the rest of the afternoon driving around with Mr Bobble Head giving him plenty of photo ops. Admittedly this was slightly immature on our part but it definitely provided us with some much needed comic relief…and personally, I thought it was a rather creative and healthy way to relieve some of the anger and frustration we have towards the politics that are the reason we find ourselves here in the first place.
Anthony is Dr H’s receptionist extraordinaire. Most days, he can be found busily hiding behind his little partitioned window.
Anthony is sweet. Anthony is shy. One might even say he is a little bashful. I suspect the Fort Knox-esque security of DR H's office may have more to do with Anthony's shyness rather than any pressing security concerns.
However, I really like Anthony.
Anthony has a wickedly awesome laugh. Like an evilly happy cartoon character. I like Anthony’s laugh. It makes me smile.
I get a kick out of ringing his little 'call bell'. And when he magically appears from behind his partition, I can't resist the urge to tease him...just so I can hear one more evil "muhahahaha" erupt from his cherubic face.
I like Anthony.
His laughter never disappoints me.
I’ve also recently discovered that Anthony and I have something in common. We NEVER answer the phone instead we prefer to let it go to voice mail. While its perfectly acceptable for me to do this, I find it annoying when Anthony does it.
However, I understand his plight.
Anthony is over worked, overwhelmed and all alone behind his little window. So, I’ve decided to oversee this small phone flaw.
Besides, Anthony has a really great laugh.
And I’ve also discovered the best way to get Anthony’s attention is by fax machine.
Betcha can't guess what I just bought?
However, before we could do that I needed to be dragged kicking and screaming to DR H's office to get my first butt shot.
Yes, the dreaded BUTT shot.
Happily the anticipation of it was worse than the reality of it.
Once that was unpleasantly out of the way, we got rolling.
Peter and his GPS, Mortimer, served as our chauffeur and tour guides extraordinaire.
The problem with Lymies is that we don't have a whole lot of energy...
and well, in case you didn't know, San Francisco is a very, very hilly, and very, very windy city...
Fortunately, it's an amazing city to tour by car.
We were able to drive by many of the famous sites of the city.
We cruised through most of San Francisco. Appropriately 'oh-ing' and 'ah-ing' until we realized that Peter's ohs were beginning to sound less enthusiastic and more soulful.
Have I mentioned that Peter is 6'7" tall?
We finally took pity on the poor lad and pulled over so that he could get out to stretch his legs.
After 5 minutes, we folded him back up, stuck him in the car and were once again off to take in the famous and some well, infamous sites as well.
Yes, these were real ladies. Senior citizens that were twins with a definite flare for the cheezily dramatic. They were pretty outrageous. I saw them when we were stopped at a traffic light and Graham jumped out to take their picture.
All in all it was a really memorable day and certainly nice to focus on something other than LD.
May 28, 2008
Neurological Lyme Disease
Co-infected with Babesia, Bartonella, Mycoplasma
Nearly all systems of body have been affected
Blink Synkinesis Bilaterally
Slight Bell's Palsy on right
Hyperesthesia of face and lower extremities
Positive Hoffman Reflex on left
- Commence IV Rocephin asap
- Commence Bicillin Injections immediately & continue until PICC line surgery can be arranged
- Patient is to use Actigall while on Rocephin
- Repeat Antibody testing for Bartonella
- Commence Enula, Teasel Root, Stephania Root, Boneset tea and Red Root
- Liver Support with Liver Norm and MedCaps
- Cholestyramine for toxin binding
Dr H is trying to make arrangements for my PICC line surgery to be done this week. Unfortunately, the PICC Line Nurse he usually uses is out of country for a month. So his staff are trying to make alternative arrangements. I guess all we can do now is to "Hurry up and wait"
In the interim, I will be starting the Bicillin injections tomorrow morning. Those are shots you get in your butt. I'm not remotely looking forward to that - apparently its a very BIG needle and it takes a full 5 minutes to infuse. DR H has actually had the nerve to tease me about it. He's a terrible tease. As you can imagine him and Graham are getting along just swimmingly.
What a mishmash of emotions heading to this appointment. We have sojourned so far to get to this point. What if after all this, it isn’t LD after all? Or what if he says my LD is to advanced and there is no hope for me? I have no idea what to expect nor what the outcome will be.
We headed into the office and its tiny waiting room. It was your standard doctors office albeit the decor was slightly more modern than most. The reception area was closed off from the waiting room - only one small partitioned window with sliding doors provided any access to the staff hidden behind them. The main office was hidden away too... behind a locked , windowless door. I wasn't sure what to make of the seemingly tight security but I tried not to worry about it.
And besides, I was far too preoccupied with keeping my emotions in check as I waited for my appointment.I rang the bell at the closed partition and the window magically slid open, revealing Anthony, Dr H's receptionist and obviously the office gatekeeper. I checked in with the very friendly but somewhat shy Anthony and then waited.
The anticipation nearly killed me. We were finally allowed in behind the hallowed locked door and shown into an exam room. In the corner of the room was a big, overstuffed leather winged-back chair. We looked at it with a sort of awestruck intimidation.
I nervously shuffled through my notes and waited with bated breath for the arrival of the one we have sojourned so far to see. Finally, the door flung open, and in sauntered DR H. Our fears were immediately put to rest... he wasn't some unapproachable guru of Lyme…he's more like surfer boy next door meets laid back genius…he sauntered in and threw himself into his easy chair, immediately reclining into a slouchy, relaxed state.
I was just starting to finally relax myself when I realized that something about the way he carried himself was strangely familiar to me. Then it hit me. Sitting there all slouched down in his big comfy chair, his demeanor was actually reminiscent of the way Taylor looks when he's lazily loafing lethargically on the couch.
Help! I've traveled 4,000 miles to see a LLMD that bears an uncanny resemblance to my teenage son? Maybe I'd rather he'd appeared as some bow-tied, be-speckled, uptight guru!
Gosh, I wasn't sure if I should laugh or run screaming from the room!
However, once we got down to business any qualms I had quickly vanished.
My consult with him lasted over 2 hours.
At the end of it, I asked him if I had LD.
"Well, duh. Do you really not know?" he incredulously snorted.
"I just need to HEAR a doctor say it OUT LOUD." I replied.
He looked me square in the eye and with a big, cheeky grin, he bellowed,
" Bottom line...You have LYME DISEASE! You have Babesiosis. You have Bartonella. There is No question about it. And I'm going to help you fight it."
"Thx, Dr H" I exhaled, "I needed to hear that. And just so you know I'm going to beat this. I'm going to get better."
He replied, "Shannon, my goal in treating you is not just to get you better...it's to give you total wellness."
When I heard that I cried.
Then we hugged Dr H.
That was awkward but cool.
Maybe next time, we'll bring him some Canadian beer.
May 27, 2008
Looks very lovely and quaint, doesn't it?
It is until you learn that a family of ducks live in the pool plus we found the grizzly remains of 3 crows in the poolside foliage plus it took 3 room tours before we found one that was halfway inhabitable. RM 124.
I think it would be safe to say that RM 124 is probably the best room in the whole hotel. That's purely speculation of course but given that it took several tries before both Peter and Jay (Marie's dad) found rooms that didn't make their skin crawl, I would have to say it's a fairly educated guess.
In fact, Marie and her dad only lasted one night at our quaint little digs before transferring to a different hotel. Peter, Graham and I have decided to slum it out. Poor Peter, he's toughing it out down the hall in RM 121. Lets just say we have some wild theories about the huge crimson stain we found hidden under the dank, musty area carpet in his room.
But what do you expect from a motel that costs 50 bucks a night and is called the Good Nite Inn?
May 26, 2008
Surreal... probably sums it up best. The whole day has just felt felt really surreal.
It's hard to wrap my mind around the fact that it has really come to this...leaving my country for another country in order to get the medical treatment I so desperately need. And then of course, flying out in a Lear jet amidst a media circus certainly adds to the unreal quality of this reality.
Just shortly after noon today we flew out of a private terminal near Vancouver airport. We were met at the airport by TV cameras and reporters. As well, several folks from our LD Support Group showed up to send us off in style. I was overwhelmed with the support of these folks especially given that most of them are sick and lacking the medical treatment they so desperately need too. I feel guilty about having this opportunity when there are so many others who could use it too.
Dr. M was there too. He will be flying to California with us in order to provide medical care to Marie during the flight. While we waited to board I did a fairly lengthy interview with a reporter from Global News.
Then it was time to leave Vancouver for Victoria where we were to pick up Marie, her dad and a nurse before we set out for our final destination in California. It was a brief 13 minute flight to Victoria - I must admit that was pretty cool. When we landed near Victoria, we were able to leave the aircraft and head into the terminal for our "30 minute layover". Much to our surprise we were met by an onslaught of media there as well - TV cameras, reporters, several radio stations, and columnists from various newspapers. I was overwhelmed to find fellow Lymies from the Victoria LD Support Group had shown up in full force to send us off with their blessing.
It was all pretty intense...light bulbs flashing, TV cameras looming in your face and questions firing from all directions. Given the circumstances associated with this flight, there was such a high level of emotion bearing down on my overcrowded brain about WHY this was happening as opposed to WHAT was going on. Needless to say the WHY was pretty much my sole focus of the day. However, I must admit, that I did have the fleeting thought that hopping on and off a private jet with media recording your every move must be somewhat like the life of a celebrity. And now, given that I’ve just heard on the news that George Abbott (Health Minister) is making references to the ‘mental’ stability of us Lyme Life Flighters, well I fear the celebrity I can most be likened to is Britney Spears - apparently, we're both nuts and love to shop at Walmart. Ha.
The rest of our flight went smoothly and time passed quickly (if only I could fly in Lear jet all the time!). Upon landing at the airport, there was a private transport waiting to pick us up. But before we were able to get off the plane, a customs officer boarded our little jet to check our passports and such. He was this gigantic guy with humongous muscles. His intimidating bulk filled our tiny 8 passenger jet. He could barely maneuver as he leaned in to check our passports and verify our citizenship.
He then inquired as to the nature of our visit to the US. When he was told that this was a medical flight, and that 3 of us on board were very ill, a look of sheer panic washed over his face and he broke into a sweat.
"Y'all aren't contagious are you?" He queried in alarm.
We all stifled a laugh. The look on his face was priceless and well, after the tumult of emotions, we needed to relieve some of our angst with a laugh or two.
Sorry, Big Guy, no offense.
The van took us directly to our hotel. And well, I pretty much collapsed in a heap on the bed and several hours later, I'm still lying here, re-living the day, my head spinning, still trying to wrap my foggy brain around it all.
I really can't believe that it has come to this.
May 24, 2008
Here’s a quick update…the last 24 hours has been a blur…
When we were in
2 days after the rally, Marie was once again rushed to hospital and she has been in
Yesterday morning I got a phone call from Susan. We were talking about our lives and the impact LD has had on it. I was sharing with her that we had finally made the decision to go out of country for treatment. We’ve been fighting for 2 months now to get a doctor to treat me and its become pretty obvious that there are none to be found. And really given my deteriorating condition we can’t afford to waste anymore time chasing after dead ends. Unbeknownst to me the McQuhae’s were in the process of making arrangements to get Marie down to California to the same doctor I was planning to see. Susan never mentioned it during our conversation.
Then, late last night, we received an unforgettable phone call. It was the McQuhae family letting us know that they had hired a private jet to fly Marie down to this doctor in California.(She’s too ill to fly commercial) They offered Graham and I seats on that flight.
We have accepted this unbelievable offer, duh. J
So this Monday at noon Graham and I will be flying with Marie, her dad & another LD patient to San Francisco to see a leading LLMD specialist there...as you can imagine, the past 24 hrs have been a blur of phone calls and making preparations for our trip...
I am amazed at how God is continuing to lead us through this nightmare, we are grateful for this overwhelming gift of free passage to San Fran and now we are trusting for God's provision for the rest of this challenging, crazy journey especially as our insurance will not cover any out of country medical treatments/expenses -
We would appreciate your continued prayer for us and for the McQuhae family...pray for a safe flight and pray for wisdom for the specialist who we all have appointments with… I will be seeing him on Wed at 4:30pm.
May 23, 2008
In all honesty, I was loathe to go. I don't hold out much hope of there being a positive outcome for any of these appointments anymore. I don't think there is a LLMD to be found in Canada. But of course there is always that teeny little voice that whispers from the recesses of my mind, "maybe, this doc will know."
And so I muster energy I don't have to go and garner the courage to face another medical skeptic - all because hope reigns supreme. Albeit each time as I share my lengthy health history and the latest doctor sits quietly, intently listening, my hopes are raised. And as my story unfolds and they appear to be actively listening by interjecting with a timely question or two, my hopes build up and I start to believe that this one may be the one who finally gets it.
Each time I share my long journey, I re-live all of the emotion, the pain, and the challenges I have fought through to get to this moment. Each time I lay it out before them I lose a little piece of my heart.
I suppose that with each denial, each refusal to come to my aid is such a crushing and personal blow.
May 22, 2008
Surprise, surprise. This is getting ridiculous. But really what other choice do I have but to go? I am desperate to find a doctor who will treat me here in Canada. However, I am coming to accept that that is probably not going to happen. In fact, we've finally got the ball rolling on heading to California to see Dr Harris. I'm hopeful it will not come to that but truth be told I am at the end of the line and quickly running out of options and time.
About the only thing different about today's appointment was the fact that the doctor I saw was drop dead gorgeous. Seriously. As in Movie Star freak of nature good looking. It's okay for me to say that - even Graham leaned over to me and whispered, "He's hot". Which was very funny if you know Graham at all. So same old, same old. Told Dr Movie Star my story. Then we held our breath as he gave us his astute opinion.
Dr. Movie Star: "There is no doubt that you are sick and your level of disability is severe. However, I am not prepared to diagnose you nor treat you."
Me: "I am not looking for a diagnosis. I have a diagnosis. I have LD.
Dr. Movie Star: "Well, I'm not prepared to treat you. I don't have the expertise to do so. In fact, any doctor who treats LD in Canada risks their medical career."
Me: "Well, then. I am more than aware of the controversy surrounding the treatment of my disease. I guess we're asking you to stand up for what's right and do what is needed. We're looking for a maverick."
Dr. Movie Star: "Well, I can tell you right now then, that I am NOT your guy."
And with that, Dr Movie Star and his designer shoes squeaked out of the office. Keep walking...all the way to Hollywood, Dr. Movie Star.
May 20, 2008
Our situation remains unchanged.
I continue to be without treatment and medical care.
We are becoming more desperate, I am becoming weaker and the flare cycles that occur in my condition (that were controlled with IV) are becoming more severe and longer lasting– the pain is unbearable. I now have blind spots in my vision. i am having episodes of apnea both day and night. it is very scary and very overwhelming. my condition is rapidly deteriorating...with no help in sight.
I have one last appointment with a new specialist.
If he refuses to help than I believe we will be forced to go to the USA.
I've been researching doctors. I am overwhelmed with the cost.
I must accept defeat.
I believe a trip south of the border is imminent.
May 16, 2008
Here's the speech I gave at the Victoria LD Rally yesterday:
My name is Shannon Goertzen and I am a wife and a mother of 3 children and I am battling Lyme disease. I became ill with LD in July 2006. Despite having classic progression of the disease, starting with flu-like symptoms which rapidly led to severe , severe headaches, excruciating joint pain and cognitive dysfunction, it still took nine months, countless tests and numerous visits to many doctors and specialist before I was finally diagnosed.
Because my infection had been left so long untreated it became evident that I needed IV treatment to give me my best chances at recovery. In BC, IV antibiotics must be prescribed by an infectious disease doctor and so I was referred to a number of ID Clinics.
My referral to a ID Clinic in Vancouver was denied based solely on my negative blood test from our provincial lab. This seems to conflict with what is written by Health Canada's website - "that the diagnosis of LD must be based on clinical presentation of symptoms because the tests are unreliable."
However, I was one of the fortunate ones who did finally receive IV which was reluctantly prescribed to me by an infectious disease doctor.So it was to our great dismay and against our wishes and my nurses recommendations that my IV treatment was stopped after 3 months. The ID doc also stated he would not give me any follow-up treatment and he would no longer see me as a patient.
Since my IV treatment stopped in mid April I have spent much of the past 2 weeks once again bedridden with agonizing bone and joint pain, fevers, crushing fatigue, dizzy spells, and blurred vision. As I find myself once again ping ponging back and forth thru the medical system, I am finding 1 of 2 things. There are the doctors that are not aware of LD and its existence in BC or they know about it, but are unwilling to give a fair and unbiased evaluation of my symptoms. Either way, I am refused treatment and the longer I am off treatment the more I begin to deteriorate and fear that all the ground I have covered in my fight will be lost. Here are some of the statement that doctors have made to me in the past month."I do not know enough about Lyme disease to treat it.”
“I am not willing to get involved in the controversy surrounding the treatment of this disease.”
“I am taking a lot of heat from my colleagues for treating you.”
So I am left in this nightmarish chasm, with a diagnosis made late because doctors failed to recognize the classic progression. Now I am left fighting to find a doctor willing to treat me in late stages of the disease.My illness and subsequent battle with it has been an incredibly long ordeal for my whole family. In a lot of ways, we have gone beyond survival mode and just do our best to exist through the challenges of each day. It has robbed my husband of his partner and he has been left exhausted and depleted as he struggles to care for me, for our home and be both mother and father to our 3 kids.It has robbed me of my ability to actively and consistently participate in the lives of my children. This loss is a cavernous hole in my soul and I grieve it deeply. One of my son’s best expressed his grief when he said, “I feel sad because I don’t remember what it is like to have a normal mom anymore”LD is the nightmare that my family and I live with everyday and it has presented us with the biggest challenge of our lives. At times it has robbed me of my ability to walk, drive, talk, read and write.As a family, we firmly believe that in the face of life’s greatest trials we have a choice to make. We can either focus on what LD has taken away or we can choose to look beyond all that has been lost and find what can be gained. While it is an incredibly difficult and painful journey, I will not let it rob me of my dignity, my courage and my hope.It is for this reason that I continue to persevere in the face of both medical and political odds. I have faith and hope that one day soon, both myself and the many others that live with this disease will find doctors who will see as persons living with Lyme and treat us as individuals and not as obscure statistics that are expected to neatly fit with the parameters of questionable treatment guidelines.
May 1, 2008
...needless to say it was very emotional for both my nurse and I…
Albeit when I mentioned I planned to spray paint MR PICC gold, frame him and hang him on my wall, we managed to have a really good laugh.