Thanks so much for your ongoing support, love and prayers for us as we sojourn through this challenging and difficult time in our life. I know that many of you are awaiting an update on my fight…
Here’s the latest and some of my musings about it:
As many of you know, I spent most of September and October having to start and stop my treatment because my liver was not tolerating my ‘big gun’ meds. By November, it was evident that my liver was maxed out and it became necessary to indefinitely suspend treatment. I have been off drugs for close to 4 weeks now and there has been little improvement in my condition.
Last week it appeared that my liver was recovering and so I was hopeful that we would be able to move forward with some form of treatment by week’s end. However, the latest results show that my liver is once again under high distress and very unstable. I am seeing my specialist tomorrow and I suspect that this continued inflammation will mean that treatment will continue to be a no go.
Even once my liver stabilizes, I will not be able to go back on my ‘big gun’ meds. However, we do still have several other treatment options to pursue. We are considering trying a less aggressive oral regime. As well, my specialist has referred me to an infectious disease doctor in the hopes that I can be started on IV meds. However, that is a high risk option with all sorts of potential complications and all with no guarantee that it will have the curative affect we so desire. And, of course, IV treatment is reliant on the outcome of my Provincial and/or American test results – the results of which are still pending as I write this. (I know that many of you are praying for these specific test results and we appreciate your prayers!)
The past 10 weeks have probably been the darkest time in my journey to date. Without a doubt, it has been the most physically grueling time to endure ...and emotionally I have struggled with feelings of total despair and hopelessness. It has been scary and overwhelming to realize that my deteriorating condition can no longer be blamed on side effects or “herxing”. It is evident that I am now at a crossroads in my fight against Lyme disease.
Psalm 143 (The Message) has been my heart's cry...
"Listen to this prayer of mine, God! Pay attention to what I’m asking. Answer me – you’re famous for your answers! Do what’s right for me.
The enemy hunted me down; he kicked me and stomped me within an inch of my life. He put me in a black hole, buried me like a corpse in that dungeon. I sat there in despair, my spirit draining away, my heart heavy, like lead. I remembered the old days, went over all that you’ve done, pondered the ways you’ve worked. I stretch out my hands to you as thirsty for you as a desert is thirsty for rain.
Hurry with your answer, God! I’m nearly at the end of my rope. Don’t turn away, don’t ignore me! That would be certain death. Let me hear of your unfailing love each morning, for I am trusting in you. Point out the road I must travel. I’m all ears, all eyes before you. Save me from my enemies. You’re my only hope! Lead me by your blessed spirit into cleared and level pasture land."
Medically speaking, things look bleak; the fight feels so futile and a cure seems to remain frustratingly elusive. It was one thing to endure the grueling and horrific effects of treatment when I felt that the outcome was having the desired curative effect but to feel as though the past 8 months of treatment have gotten me no closer to health is a crushing blow. This reality has forced me to face and wrestle with some very tough questions.
Ultimately, I believe that God is sovereign over the outcome and I continue to Trust Him. However, as of late, I have struggled to understand and accept that God’s timing in all of this is perfect. My illness and subsequent battle with it has been an incredibly long ordeal for my whole family. It is difficult to understand why this must go on so long. The loss of my ability to participate in my kid’s lives on a daily and consistent basis is a cavernous hole in my soul and I grieve it deeply. And it is so very difficult to see the toll that my illness has on my husband. While I am busy being sick, he is busy being both mother and father, chef, chauffeur and chief toilet bowl cleaner all the while trying to balance the challenge of full time ministry.
In a lot of ways, we have gone beyond survival mode and just do our best to exist through the challenges of each day. Yet, in so many ways, the intensity of our struggle helps us to recognize our total need for God. The all-consuming nature of my illness is presenting us with the unique opportunity to bear witness to His immeasurable power and love. I suppose it is only human to long for or expect that life should come to us exempt of pain and struggle. The reality is that life is full of challenges and difficulties. I suppose, when it comes down to it, I am grateful that I can help my children navigate this reality secure in the knowledge that God is here in the midst of it with us.
“Don’t be afraid, I’ve redeemed you. I’ve called your name. You’re mine. When you’re in over your head, I’ll be there with you. When you’re in rough waters, you will not go down. When you are between a rock and a hard place, it won’t be a dead end – because I am God, your personal God. I paid a huge price for you: That’s how much you mean to me! That’s how much I love you!” - Isaiah 43:1-3
And even if our circumstances seem to deny his existence and despite how we may feel, He has promised to never leave us or abandon us…
"So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you.” - Deuteronomy 31:6
And that our trust and hope in Him is not misplaced…
"Now when people take an oath, they call on someone greater than themselves to hold them to it. And without any question that oath is binding. God also bound himself with an oath, so that those who received the promise could be perfectly sure that he would never change his mind. So God has given both his promise and his oath. These two things are unchangeable because it is impossible for God to lie. Therefore, we who have fled to him for refuge can have great confidence as we hold to the hope that lies before us. This hope is a strong and trustworthy anchor for our souls." - Hebrews 6:16-19
So while I persevere at this crossroads, waiting for His leading, waiting for His healing, I have a choice to make…I can question God’s timing, doubt His promises and fall into total despair or I can choose to trust God, believe what he has promised me and place my hope in him and prepare to be amazed at how he works.
I choose to trust.
Proverbs 3:5-8
Trust God from the bottom of your heart;
don't try to figure out everything on your own.
Listen for God's voice in everything you do, everywhere you go;
he's the one who will keep you on track.
Don't assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
your very bones will vibrate with life!
I claim that and believe it. Whether my healing comes through further medical intervention or divine means, I believe that it will happen. In fact, I believe that it has already begun, it’s just a matter of time until I see and experience it.
Thx once again for your continued support and encouragement...it is so appreciated.
December 11, 2007
November 29, 2007
STILL WAITING
Saw my Lyme doctor today.
My liver enzymes are finally starting to come down. PTL. However, it is not adequately recovered to resume any course of treatment. So things will remain at a standstill for an additional 2 weeks for sure. I am not overly disappointed by this as treatment makes me so much sicker and gimpier than normal.
And, still NO BC test results... however my doctor just kept shaking his head in exasperation in regards to the fact that I am even holding my breath over these BC tests coming back positive…he kept reminding me that the BC tests are notoriously inept and erroneous and to quit wasting my time and to just get my American lab tests done pronto…
...and I was like, I know, I know but my WHOLE church is praying for my BC test…he just smiled and said it’d be a miracle…
Yes, yes, it would...
BUT, whether my test renders a "positive" result or not, we are still stuck in a medical stand still due to my poor, sad, and exhausted liver, so...
We definitely feel like we are at a crossroads in our journey....
What to do...Where to go...I don't know...But I do know that God is sovereign over the outcome...sure, I would love for my BC test to be positive - it would be such an "obvious" miracle and a fabulously dramatic result... however God doesn't need big dramatic outcomes to bring glory to His name...
over the last couple of weeks, in my devotions, I've kept stumbling upon all those times that Jesus miraculously healed people...
...I know that he has promised me that I will be well again and I don't doubt that he will heal me...
We will be meeting with the elders on Sunday at 11:30am to have them pray over me again...
…I believe that healing is just around the corner...it will be interesting to see just how that will look....
November 17, 2007
A WORD FROM MY HUSBAND
This is an update regarding
This is frustrating for her as she has little or no ability to give attention to the children or things here at home. She has also not worked at her job since May.
When she began her treatment last April, we were anticipating that things would be looking quite positive by now. We’ve been told that that fighting Lyme disease is not a sprint, it’s a marathon. But at this point the fight feels futile, and we are very discouraged. Part of this is because there is no clear-cut path to recovery. So much of it is waiting, and trying this or that. In the meantime, we feel that things are falling apart. We try to trust God and see His sovereign will in all this, but pretty much every part of our day is a challenge.
Yesterday we met with her doctor. He feels that
However!! IV treatment must be ordered and administered through an infectious disease specialist. He is referring her to such a specialist, however in order to be considered for this course of treatment the patient must be tested positive for Lyme disease (in Canada). The problem with the Canadian test is that it’s not entirely accurate or effective in detecting the bacteria. The other alternative to the Canadian test would be a test at a
So that is where we stand.
Yesterday,
Sincerely,
Graham
October 4, 2007
A BIG Little THANK-YOU!
This week marks my 7th month of treatment and I just wanted to say a BIG little THANK YOU for all your love and prayers – they have been an immeasurable encouragement to me. I am incredibly grateful for your friendship and humbled by your continued support. Each of you, in your own unique way, has deeply touched my heart and brought healing to my soul. Thank you.
As most of you know, over the past 2 weeks I faced yet another mountain to climb…and I have good news to report…I am back on my big gun meds! While my liver enzymes are still elevated they have dropped by 100 ‘points’ since last Friday and so we are cautiously resuming treatment. I will be on half a dose to begin with and closely monitored to see how my body responds.
I am ready to fight again. Bring on the Herxing! (eek, did i really just say that?)
Thank you for your prayers - they have made me strong in mind, body and spirit.
As most of you know, over the past 2 weeks I faced yet another mountain to climb…and I have good news to report…I am back on my big gun meds! While my liver enzymes are still elevated they have dropped by 100 ‘points’ since last Friday and so we are cautiously resuming treatment. I will be on half a dose to begin with and closely monitored to see how my body responds.
I am ready to fight again. Bring on the Herxing! (eek, did i really just say that?)
Thank you for your prayers - they have made me strong in mind, body and spirit.
July 12, 2007
MY STORY - as told to CTV NEWS
I have Lyme disease.
I have been sick for over a year. It took nine months, countless tests and numerous visits to many doctors before I was finally diagnosed.
In my journey to diagnosis, I believe that the doctors I saw did their job to the best of their ability. Lyme disease is called the great imitator and I was tested for most of the diseases that Lyme is said to mimic. But many of my symptoms were quickly dismissed as too vague, too diffuse and non-relating.
And as the plethora of test results rolled in as "normal," I was met with the innuendo that possibly my problems were in my head. Or, maybe I was just depressed.
In my experience, there was a failure in the medical community to recognize the symptoms of Lyme disease. I went from doctor to doctor, carrying around a detailed list of my symptoms. I was not aware that I was experiencing 57 of the 75 symptoms listed on a diagnostic checklist. In essence, through my detailed list, I was unwittingly writing a story of the classic progression of Lyme disease.
Yet, it went unrecognized and unacknowledged for nine long months.
I recognize that I was fortunate enough to have a general practitioner who was as frustrated as me by my perplexing medical symptoms. And while my request for a Lyme disease test was not met with resistance, she did make it very clear to me that the serological (blood test) results would be the measure by which she would base a diagnosis.
In my quest for knowledge about this disease, I have quite easily found a plethora of information on the importance of diagnosis being made based on clinical presentation of symptoms, as opposed to serological results.
It is beyond me, then, that doctors are still unaware of the insensitivity of Lyme tests, and therefore are inclined to rule out the disease in the presence of a negative test. Even the Centers for Disease Control in the U.S. has gone on record stating that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Furthermore, how is it that we in B.C. are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, we seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in our great province?
That ignorance has cost me nine months of my life.
However, I am not interested in assigning blame to the doctors' that missed my diagnosis. Yes, it was a difficult, terrifying, disheartening and frustratingly long journey to diagnosis. But to point fingers and fling accusations is a counterproductive process. It only serves to put those on the receiving end of it on the defensive. And when we feel the need to defend ourselves, the opportunity to teach is lost. The willingness to listen and understand another's experience ceases to exist.
My intent in sharing my Lyme journey is to help bring awareness to the reality of this insidious disease in B.C. and to help educate those that are willing to listen.
My hope is that my story will not fall on deaf ears but that those who hear it will be willing to acknowledge the existence of this disease in B.C. And their acknowledgement will lead the way for change and action in the fight against Lyme disease.
This disease had nine months to disseminate and invade virtually every system of my body. And while I am now faced with the reality that it will be an uphill battle to restore my health, I am buoyed by the knowledge that I finally know what it is that has so radically altered my ability to live my life.
Now armed with this knowledge and under the care of Dr. Ernie Murakami, I am waging war on it.
As a result, my children are getting their mother back and my husband is getting is wife back. In essence, we are getting our life back.
I have been sick for over a year. It took nine months, countless tests and numerous visits to many doctors before I was finally diagnosed.
In my journey to diagnosis, I believe that the doctors I saw did their job to the best of their ability. Lyme disease is called the great imitator and I was tested for most of the diseases that Lyme is said to mimic. But many of my symptoms were quickly dismissed as too vague, too diffuse and non-relating.
And as the plethora of test results rolled in as "normal," I was met with the innuendo that possibly my problems were in my head. Or, maybe I was just depressed.
In my experience, there was a failure in the medical community to recognize the symptoms of Lyme disease. I went from doctor to doctor, carrying around a detailed list of my symptoms. I was not aware that I was experiencing 57 of the 75 symptoms listed on a diagnostic checklist. In essence, through my detailed list, I was unwittingly writing a story of the classic progression of Lyme disease.
Yet, it went unrecognized and unacknowledged for nine long months.
I recognize that I was fortunate enough to have a general practitioner who was as frustrated as me by my perplexing medical symptoms. And while my request for a Lyme disease test was not met with resistance, she did make it very clear to me that the serological (blood test) results would be the measure by which she would base a diagnosis.
In my quest for knowledge about this disease, I have quite easily found a plethora of information on the importance of diagnosis being made based on clinical presentation of symptoms, as opposed to serological results.
It is beyond me, then, that doctors are still unaware of the insensitivity of Lyme tests, and therefore are inclined to rule out the disease in the presence of a negative test. Even the Centers for Disease Control in the U.S. has gone on record stating that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Furthermore, how is it that we in B.C. are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, we seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in our great province?
That ignorance has cost me nine months of my life.
However, I am not interested in assigning blame to the doctors' that missed my diagnosis. Yes, it was a difficult, terrifying, disheartening and frustratingly long journey to diagnosis. But to point fingers and fling accusations is a counterproductive process. It only serves to put those on the receiving end of it on the defensive. And when we feel the need to defend ourselves, the opportunity to teach is lost. The willingness to listen and understand another's experience ceases to exist.
My intent in sharing my Lyme journey is to help bring awareness to the reality of this insidious disease in B.C. and to help educate those that are willing to listen.
My hope is that my story will not fall on deaf ears but that those who hear it will be willing to acknowledge the existence of this disease in B.C. And their acknowledgement will lead the way for change and action in the fight against Lyme disease.
This disease had nine months to disseminate and invade virtually every system of my body. And while I am now faced with the reality that it will be an uphill battle to restore my health, I am buoyed by the knowledge that I finally know what it is that has so radically altered my ability to live my life.
Now armed with this knowledge and under the care of Dr. Ernie Murakami, I am waging war on it.
As a result, my children are getting their mother back and my husband is getting is wife back. In essence, we are getting our life back.
April 13, 2007
ONE THING I KNOW
I don't know why God created ticks.
I don’t know why something so tiny and inconspicuous can possess the power to radically alter one’s life.
I don’t know why I had to go undiagnosed so long. If caught early, Lyme disease is easily treated and cured but when left undiagnosed indeterminately, aggressive, long term treatment is required and one is given ‘no medical guarantees’ of a cure.
I don’t know when or how God will answer our prayers for healing.
I don’t know all the answers to my questions of why and how.
But the one thing I do know is that I can unequivocally and unreservedly Trust God.
Despite how my circumstances may appear, He has not failed me nor abandoned me. In fact, He has been my stronghold in the middle of this nightmare; His word and promises my only hope and comfort.
And in my darkest moments, when I feel like I do not have the strength or even the desire to endure one more minute of this hell, He is the one who gives me the strength and courage to persevere. His presence in my life is a tangible force that lifts me above and beyond the impossible.
So while I wait in this indeterminate space between despair and hope, waiting for health and life to be restored, the one thing I know is that He can be Trusted with the outcome. He is always present. Without fail. He has never let me down.
My TRUST promises…
Proverbs 3: 5&6
"TRUST God from the bottom of your heart;
Don’t try to figure out everything on your own.
Listen for God’s voice in everything you do, everywhere you go;
He’s the one who will keep you on track
Don’t assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
Your very bones will vibrate with life!"
Isaiah 52:12
"But you don’t have to be in a hurry.
You’re not running from anybody!
God is leading you out of here,
And the God of Israel is also your rear guard."
Hebrews 11:1-4
"The fundamental fact of existence is that this TRUST in God, this faith, is the firm foundation under everything that makes life worth living. It’s our handle on what we can’t see."
I don’t know why something so tiny and inconspicuous can possess the power to radically alter one’s life.
I don’t know why I had to go undiagnosed so long. If caught early, Lyme disease is easily treated and cured but when left undiagnosed indeterminately, aggressive, long term treatment is required and one is given ‘no medical guarantees’ of a cure.
I don’t know when or how God will answer our prayers for healing.
I don’t know all the answers to my questions of why and how.
But the one thing I do know is that I can unequivocally and unreservedly Trust God.
Despite how my circumstances may appear, He has not failed me nor abandoned me. In fact, He has been my stronghold in the middle of this nightmare; His word and promises my only hope and comfort.
And in my darkest moments, when I feel like I do not have the strength or even the desire to endure one more minute of this hell, He is the one who gives me the strength and courage to persevere. His presence in my life is a tangible force that lifts me above and beyond the impossible.
So while I wait in this indeterminate space between despair and hope, waiting for health and life to be restored, the one thing I know is that He can be Trusted with the outcome. He is always present. Without fail. He has never let me down.
My TRUST promises…
Proverbs 3: 5&6
"TRUST God from the bottom of your heart;
Don’t try to figure out everything on your own.
Listen for God’s voice in everything you do, everywhere you go;
He’s the one who will keep you on track
Don’t assume that you know it all.
Run to God! Run from evil!
Your body will glow with health,
Your very bones will vibrate with life!"
Isaiah 52:12
"But you don’t have to be in a hurry.
You’re not running from anybody!
God is leading you out of here,
And the God of Israel is also your rear guard."
Hebrews 11:1-4
"The fundamental fact of existence is that this TRUST in God, this faith, is the firm foundation under everything that makes life worth living. It’s our handle on what we can’t see."
April 12, 2007
MY 9-MONTH JOURNEY TO DIAGNOSIS
While on holiday in Whistler, I wake up in middle of night sick. Vomiting, diarrhea and general malaise. In the morning, I have a weird rash on my lower face, across my chin.
I feel somewhat better as the day progresses, but in the week that follows, I continue to have this vague feeling of uneasiness or malaise and begin to feel extremely tired/ worn out.
I figure that maybe I am just tired out due to our big, long 5 week road trip we’ve just come back from.
Hit Robert’s Creek on the sunshine coast for vacation, one week after being in Whistler. I continue to be very tired out and am also very moody. Try to go for a run but my get up and go, got up and left. During our week in Robert’s Creek, I begin to have really, really bad and unrelenting headaches and an incredibly stiff and sore neck and collarbone area. Once again, I chalk it up to all the traveling that we have been doing.
I continue to feel progressively worse throughout the month of August. I am now taking 6-8 extra-strength Tylenol per day to cope with the headaches and neck pain but am getting little relief. I am no longer able to sleep. I have developed insomnia, it seems. And my memory seems to be playing tricks on me too – I have now shown up to several dental appointments at the wrong time on the wrong day (e.g. appointment is for the 21st but show up on the 12, in spite having written it down correctly in my planner).
I am hallucinating at night. Strange aberrations appearing before me. I am awake, am I not? They are so life-like. I blink and blink and stare into the darkness and still they remain, taunting me.
I am experiencing drenching night sweats too. Gross. Have to get up and change the sheets on many nights. They are sopping wet.
SEPTEMBER 2006
By now the pain has moved into my jaw and down my back. Maybe I am stressed out and am grinding my teeth at night? Weird. The pain in my neck and collarbone is intense. I can’t exercise anymore. I can’t even carry a purse as the pain radiates all across my upper body and down my back. Aching. Sharp. Biting. Electric like charges coursing down my extremities.
Go see the chiropractor. All this traveling must have really done a number on my body.
“No, you're not out of alignment enough to have such intense pain. I can tell that your whole nervous system is tweaking out. Go see your doctor.”
Go see my family doctor. Maybe it’s chronic fatigue back again? Maybe a virus. Maybe stress.
"You are sure you are not depressed? Here’s a Rx for muscle relaxants and sleeping pills. I’m sure things will resolve once you can get back into a good sleep pattern. I’ll send you for blood work. Take the sleeping pills and muscle relaxants and I’ll see you back here in a month."
Tried muscle relaxants. They do nothing for the pain. Sleeping pills are useless too. Back to the chiropractor for another adjustment. I’m starting to feel very scared. Maybe I have a MS or a spinal tumor? I burst into tears in his office. How embarrassing. So totally unlike me.
"I doubt it’s a tumor. Maybe you just have some emotional baggage that is resurfacing..."
You have got to be kidding me!
Shortly after my first visit to my family doctor. I begin to experience episodes of my heart racing/palpitating wildly. Can’t control it. What is wrong with me?
Back to the doctor.
She sends me for an ECG – everything normal. Small comfort. I who have always been so in tune to my body, now find it hardly recognizable.
And now I am having numb sensations flitting about up and down my right calf and across my face and neck.
Back to my family doctor.
I’ve now begun compiling a list of my symptoms because I seem to forget so much as of late. Well and I’ve always had a penchant for details and thoroughness… my doctor looks at my symptom list and suggests the possibility of MS.
An appointment is made for November 10/06 with a neurologist at a MS clinic - September melds into October 2006. Old symptoms wax and wane, new symptoms continue to develop.
I keep ‘seeing’ things out of the corner of my eye, but when I turn my head there is nothing there. And I can no longer count. Can’t remember what number I’ve just said. I can’t cash out at work. Was that 4 dimes or 6 dimes that I just counted? Forget making a pot of coffee, too. And the floaters are horrendous. Did I mention my eye has begun to twitch nonstop, night and day? And my neck/head keep tweaking and twitching.
I am now having to repeatedly ask the same questions over and over kids.
"What would you like for lunch?"
"Ham sandwich."
"Hey guys. What would you like for lunch?”
“You already asked us that mom.”
“I did?” “Sorry, I don’t remember. What did you want again?"
"Ham sandwich."
NOVEMBER 2006
Meet with neurologist. He schedules me for an MRI for December 2/06. In the meantime, my hair has now started to fall out. Gross. Big handfuls. It’s everywhere. I’ve lost 8 pounds in the last 2 weeks. Pain has moved into my hands now too. The veins swell to such astronomical proportions, that my whole hand begins to take on a bluish, black hue. And now I am freezing cold all the time. And I shake uncontrollably. It is never ceasing. I can’t get warm. I have taken to wearing my 3/4length down filled coat around the house. But it does little to keep the cold at bay. I’ve always been hot at night and had to sleep with a window open – now I can’t seem to wear enough layers nor pile on enough blankets to keep warm.
I begin to monitor my body temp. It is always low. Maybe I have a thyroid issue?
Back to family doctor.
"I’ve already tested you for thyroid issues."
"Well, test me again."
"NO way."
THE ONLY THING NORMAL IN MY LIFE ANYMORE IS MY TEST RESULTS.
How ironic. And, no, I am most certainly sure that I am not depressed, doctor.
I have terrible noise sensitivities and visual sensitivities too. I even had to go so far as to remove the artwork from my living room walls – looking at it was driving me crazy?! My world and my brain is so foggy now, like viewing life behind a heavily shrouded veil and yet sounds are so intensely loud and ear splitting, that I must leave the room, for fear my ear drums will implode or I will go nuts listening to it.
And my eye still hasn’t stopped twitching. And my whole body burns, and pricks like pins and needles – that sensation one gets when you leg falls asleep, yet my whole body feels that way. The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.
DECEMBER 2006
MRI results are in. I meet with my neurologist. I do not have MS. That is good news. A relief. But what is it then, this mysterious anomaly, this cavalcade of symptoms, that are slowly taking over my life and radically altering my ability to do the simplest of tasks? I have been continuing to track them.
Here, Mr. Dr. Neurologist, here is my list again. He briefly peruses it.
"Oh, they are just too vague and non-related to mean anything."
"WHAT? Hold on a minute, if these symptoms are so vague how come they are interfering with my ability to live my life?"
"Well, I am concerned about a couple of your complaints. Your weight loss, night sweats and migraine. I’m going to advise your family doctor to test you for Lupus, Skeletal Rheumatoid Arthritis."
Back to my family doctor.
Chest x-rays. Abdominal ultrasounds. Another round of endless blood tests. My bones ache and ache. I am in so much pain. My brain has turned to mush. I can’t bear to even hold hands with my daughter. And more than a sheet over my body at night causes great pain and discomfort. Maybe it is rheumatoid arthritis. Maybe it is bone cancer.
"I’m sending you for a bone scan."
Off for the bone scan on December 22/06. Back to the family doc. She plays the "Are you sure you are not depressed?" card again.
"Maybe you should go see a psychiatrist. Here’s a referral."
Fine. I’d be happy to go just to prove that I am not depressed or crazy for that matter.
JANUARY 2007
"Please send me to a Rheumatologist. Doc, I have such terrible arthritis pain. Maybe what I have is Fibromyalgia. Perhaps a Rheumatologist can give me some life-style suggestions for controlling/dealing with the pain."
"You don’t have fibro, Shannon. And your bone scan was normal. So you don’t have rheumatoid arthritis. Your blood test shows you have no inflammation in your system but if you insist, I will refer you to a Rheumatologist - but I doubt he will even see you."
Off to see the Rheumatologist accompanied by my ever-growing symptom list. Of course, Murphy’s Law prevails and my arthritic symptoms have waned just in time for this appointment.
"Shannon, there's no way you have fibro. You don’t have the personality for it."
I say pardon? Really! Where do statements like this come from? I didn’t know diseases were assigned personalities. Dr. Specialist continues to wax eloquent...
"I’d say that you’ve probably just ‘hit a rut’. You seem like a highly motivated individual. I’m sure you’ll pull yourself out of it."
What a complete waste of time. Ever been given a pep-talk by a pompous, arrogant know-it-all?
"No no! Doctor, you don't understand. I used to run 8 km a day and weight train 1hour every day. I WANT to do that, I have the DESIRE to do it but I can not PHYSICALLY do it because I am in such tremendous pain!"
"I’m sure your pain is real for you."
OK, flippant comments like that are not helpful, not professional, and are extremely irritating.
I'm shutting up now, and am going to sit here and smile and nod until you finish your pointless pep-talk and then with my dignity barely intact, I will march my aching body and my non-existent life out of here.
My condition is benign, according to his expert opinion.
MARCH 2007
And I will not book that appointment with the psychiatrist. Not interested in wasting my time, or his time. I KNOW my problems are not imagined. But I don't have the emotional or physical stamina to deal with anymore doctor's visits anymore. I am tired of trying to make them believe that there is something very physiologically wrong with me. I give up. I can't keep trying to figure this out anymore.
My husband talks about my health issues to our surgeon friend in Ontario. He asks many questions. I think I know what might be happening with her, but let me do a little digging and I’ll call you back.
Phone rings 3 days later.
"I’ve been checking into Shannon’s symptoms and I believe she may has Lyme disease."
"What is Lyme disease? Isn’t that something you get from a tick bite?"
That can’t be me. I’m a city girl not a nature girl. My idea of gardening is stuffing my artificial Christmas tree into a decorative garden urn full of dirt.
I Google Lyme Disease.
And lo, there is my symptom list! Every single last one my symptoms is listed before my eyes. How is it possible that every doctor I have seen over the past nine months have missed this? One would think this is so obvious. Every last one of the symptoms that I have experienced is listed as a symptom of Lyme disease. In fact, by the time I receive my clinical diagnosis of Lyme disease, I present with 57 of the 75 symptoms listed on a diagnostic check list.
"Hey family Doctor - I'm back! Listen to this: Our surgeon friend thinks I may have Lyme disease."
To my relief, she is open to the suggestion. For she is just as frustrated as us with my perplexing medical situation.
"Hmm, sometimes all it takes is a fresh set of eyes. I’ve recently had another patient happen across a doctor in Hope who seems to be knowledgeable in this area. It might be helpful for you to see him, so I am going to refer you to him, as well. His practice is out in Hope. So, let’s hope for hope in Hope. And in the interim, I will send you for a Lyme test. But just so you know, in 20 years, I have never had anyone test ‘positive’."
Ah yes, the great test debate that I have been reading about. Upon my own investigation into this disease, I find a plethora of information on the importance of diagnosing Lyme based on clinical presentation as opposed to serological (CSI type evidence) tests and results. The tests are known to be highly unreliable and insensitive. But in general, clinicians have no clue about this, and and so rule out a positive diagnosis when the test comes back negative - even with the presence of symptoms!
Even the CDC has gone on record stating,“that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.”
Furthermore, how is it that we in BC are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, clinicians seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in this province?
Basically, that ignorance has cost me 9 months of my life.
APRIL 2007
I go for my Lyme test and wait to hear from this doctor in Hope. I am contacted the next day and am given an appointment with Dr. M for April 11/07. Dr. M was the first doctor who asked me what my quality of life was.
“What life?”
And then he asked me to assign a percentage to it.
"I don’t think to say that it is about 30% of what it used to be would be an exaggeration."
Both my husband and I responded together. We looked at each other. We were both struck by that. We knew that our life had been radically altered because of my illness and that we no longer functioned ‘normally’ anymore - but to have it assigned to a number was a rather dismal eye-opener. To finally have a medical professional acknowledge this loss as real and significant is a profound relief.
Dr. M then proceeded to take a thorough health history and physical exam. Our first appointment with him lasts well over an hour. At the end of it, he clinically diagnosis' me with Lyme Disease. He says he is willing to treat me.
We are dumbfounded. There is really no sense of relief. With diagnosis comes the reality that I now face an uphill battle to restore my health as this insidious disease has had 9 months to take up residence in my defenseless body.
However, we are buoyed by the knowledge that at least we finally know what it is that has so radically altered our life and now armed with this knowledge, we can wage war on it and begin getting our life back.
I feel somewhat better as the day progresses, but in the week that follows, I continue to have this vague feeling of uneasiness or malaise and begin to feel extremely tired/ worn out.
I figure that maybe I am just tired out due to our big, long 5 week road trip we’ve just come back from.
Hit Robert’s Creek on the sunshine coast for vacation, one week after being in Whistler. I continue to be very tired out and am also very moody. Try to go for a run but my get up and go, got up and left. During our week in Robert’s Creek, I begin to have really, really bad and unrelenting headaches and an incredibly stiff and sore neck and collarbone area. Once again, I chalk it up to all the traveling that we have been doing.
I continue to feel progressively worse throughout the month of August. I am now taking 6-8 extra-strength Tylenol per day to cope with the headaches and neck pain but am getting little relief. I am no longer able to sleep. I have developed insomnia, it seems. And my memory seems to be playing tricks on me too – I have now shown up to several dental appointments at the wrong time on the wrong day (e.g. appointment is for the 21st but show up on the 12, in spite having written it down correctly in my planner).
I am hallucinating at night. Strange aberrations appearing before me. I am awake, am I not? They are so life-like. I blink and blink and stare into the darkness and still they remain, taunting me.
I am experiencing drenching night sweats too. Gross. Have to get up and change the sheets on many nights. They are sopping wet.
SEPTEMBER 2006
By now the pain has moved into my jaw and down my back. Maybe I am stressed out and am grinding my teeth at night? Weird. The pain in my neck and collarbone is intense. I can’t exercise anymore. I can’t even carry a purse as the pain radiates all across my upper body and down my back. Aching. Sharp. Biting. Electric like charges coursing down my extremities.
Go see the chiropractor. All this traveling must have really done a number on my body.
“No, you're not out of alignment enough to have such intense pain. I can tell that your whole nervous system is tweaking out. Go see your doctor.”
Go see my family doctor. Maybe it’s chronic fatigue back again? Maybe a virus. Maybe stress.
"You are sure you are not depressed? Here’s a Rx for muscle relaxants and sleeping pills. I’m sure things will resolve once you can get back into a good sleep pattern. I’ll send you for blood work. Take the sleeping pills and muscle relaxants and I’ll see you back here in a month."
Tried muscle relaxants. They do nothing for the pain. Sleeping pills are useless too. Back to the chiropractor for another adjustment. I’m starting to feel very scared. Maybe I have a MS or a spinal tumor? I burst into tears in his office. How embarrassing. So totally unlike me.
"I doubt it’s a tumor. Maybe you just have some emotional baggage that is resurfacing..."
You have got to be kidding me!
Shortly after my first visit to my family doctor. I begin to experience episodes of my heart racing/palpitating wildly. Can’t control it. What is wrong with me?
Back to the doctor.
She sends me for an ECG – everything normal. Small comfort. I who have always been so in tune to my body, now find it hardly recognizable.
And now I am having numb sensations flitting about up and down my right calf and across my face and neck.
Back to my family doctor.
I’ve now begun compiling a list of my symptoms because I seem to forget so much as of late. Well and I’ve always had a penchant for details and thoroughness… my doctor looks at my symptom list and suggests the possibility of MS.
An appointment is made for November 10/06 with a neurologist at a MS clinic - September melds into October 2006. Old symptoms wax and wane, new symptoms continue to develop.
I keep ‘seeing’ things out of the corner of my eye, but when I turn my head there is nothing there. And I can no longer count. Can’t remember what number I’ve just said. I can’t cash out at work. Was that 4 dimes or 6 dimes that I just counted? Forget making a pot of coffee, too. And the floaters are horrendous. Did I mention my eye has begun to twitch nonstop, night and day? And my neck/head keep tweaking and twitching.
I am now having to repeatedly ask the same questions over and over kids.
"What would you like for lunch?"
"Ham sandwich."
"Hey guys. What would you like for lunch?”
“You already asked us that mom.”
“I did?” “Sorry, I don’t remember. What did you want again?"
"Ham sandwich."
NOVEMBER 2006
Meet with neurologist. He schedules me for an MRI for December 2/06. In the meantime, my hair has now started to fall out. Gross. Big handfuls. It’s everywhere. I’ve lost 8 pounds in the last 2 weeks. Pain has moved into my hands now too. The veins swell to such astronomical proportions, that my whole hand begins to take on a bluish, black hue. And now I am freezing cold all the time. And I shake uncontrollably. It is never ceasing. I can’t get warm. I have taken to wearing my 3/4length down filled coat around the house. But it does little to keep the cold at bay. I’ve always been hot at night and had to sleep with a window open – now I can’t seem to wear enough layers nor pile on enough blankets to keep warm.
I begin to monitor my body temp. It is always low. Maybe I have a thyroid issue?
Back to family doctor.
"I’ve already tested you for thyroid issues."
"Well, test me again."
"NO way."
THE ONLY THING NORMAL IN MY LIFE ANYMORE IS MY TEST RESULTS.
How ironic. And, no, I am most certainly sure that I am not depressed, doctor.
I have terrible noise sensitivities and visual sensitivities too. I even had to go so far as to remove the artwork from my living room walls – looking at it was driving me crazy?! My world and my brain is so foggy now, like viewing life behind a heavily shrouded veil and yet sounds are so intensely loud and ear splitting, that I must leave the room, for fear my ear drums will implode or I will go nuts listening to it.
And my eye still hasn’t stopped twitching. And my whole body burns, and pricks like pins and needles – that sensation one gets when you leg falls asleep, yet my whole body feels that way. The pain is unbearable, unrelenting in my collarbone and neck. Sharp, arthritic-like pain.
DECEMBER 2006
MRI results are in. I meet with my neurologist. I do not have MS. That is good news. A relief. But what is it then, this mysterious anomaly, this cavalcade of symptoms, that are slowly taking over my life and radically altering my ability to do the simplest of tasks? I have been continuing to track them.
Here, Mr. Dr. Neurologist, here is my list again. He briefly peruses it.
"Oh, they are just too vague and non-related to mean anything."
"WHAT? Hold on a minute, if these symptoms are so vague how come they are interfering with my ability to live my life?"
"Well, I am concerned about a couple of your complaints. Your weight loss, night sweats and migraine. I’m going to advise your family doctor to test you for Lupus, Skeletal Rheumatoid Arthritis."
Back to my family doctor.
Chest x-rays. Abdominal ultrasounds. Another round of endless blood tests. My bones ache and ache. I am in so much pain. My brain has turned to mush. I can’t bear to even hold hands with my daughter. And more than a sheet over my body at night causes great pain and discomfort. Maybe it is rheumatoid arthritis. Maybe it is bone cancer.
"I’m sending you for a bone scan."
Off for the bone scan on December 22/06. Back to the family doc. She plays the "Are you sure you are not depressed?" card again.
"Maybe you should go see a psychiatrist. Here’s a referral."
Fine. I’d be happy to go just to prove that I am not depressed or crazy for that matter.
JANUARY 2007
"Please send me to a Rheumatologist. Doc, I have such terrible arthritis pain. Maybe what I have is Fibromyalgia. Perhaps a Rheumatologist can give me some life-style suggestions for controlling/dealing with the pain."
"You don’t have fibro, Shannon. And your bone scan was normal. So you don’t have rheumatoid arthritis. Your blood test shows you have no inflammation in your system but if you insist, I will refer you to a Rheumatologist - but I doubt he will even see you."
Off to see the Rheumatologist accompanied by my ever-growing symptom list. Of course, Murphy’s Law prevails and my arthritic symptoms have waned just in time for this appointment.
"Shannon, there's no way you have fibro. You don’t have the personality for it."
I say pardon? Really! Where do statements like this come from? I didn’t know diseases were assigned personalities. Dr. Specialist continues to wax eloquent...
"I’d say that you’ve probably just ‘hit a rut’. You seem like a highly motivated individual. I’m sure you’ll pull yourself out of it."
What a complete waste of time. Ever been given a pep-talk by a pompous, arrogant know-it-all?
"No no! Doctor, you don't understand. I used to run 8 km a day and weight train 1hour every day. I WANT to do that, I have the DESIRE to do it but I can not PHYSICALLY do it because I am in such tremendous pain!"
"I’m sure your pain is real for you."
OK, flippant comments like that are not helpful, not professional, and are extremely irritating.
I'm shutting up now, and am going to sit here and smile and nod until you finish your pointless pep-talk and then with my dignity barely intact, I will march my aching body and my non-existent life out of here.
My condition is benign, according to his expert opinion.
MARCH 2007
And I will not book that appointment with the psychiatrist. Not interested in wasting my time, or his time. I KNOW my problems are not imagined. But I don't have the emotional or physical stamina to deal with anymore doctor's visits anymore. I am tired of trying to make them believe that there is something very physiologically wrong with me. I give up. I can't keep trying to figure this out anymore.
My husband talks about my health issues to our surgeon friend in Ontario. He asks many questions. I think I know what might be happening with her, but let me do a little digging and I’ll call you back.
Phone rings 3 days later.
"I’ve been checking into Shannon’s symptoms and I believe she may has Lyme disease."
"What is Lyme disease? Isn’t that something you get from a tick bite?"
That can’t be me. I’m a city girl not a nature girl. My idea of gardening is stuffing my artificial Christmas tree into a decorative garden urn full of dirt.
I Google Lyme Disease.
And lo, there is my symptom list! Every single last one my symptoms is listed before my eyes. How is it possible that every doctor I have seen over the past nine months have missed this? One would think this is so obvious. Every last one of the symptoms that I have experienced is listed as a symptom of Lyme disease. In fact, by the time I receive my clinical diagnosis of Lyme disease, I present with 57 of the 75 symptoms listed on a diagnostic check list.
"Hey family Doctor - I'm back! Listen to this: Our surgeon friend thinks I may have Lyme disease."
To my relief, she is open to the suggestion. For she is just as frustrated as us with my perplexing medical situation.
"Hmm, sometimes all it takes is a fresh set of eyes. I’ve recently had another patient happen across a doctor in Hope who seems to be knowledgeable in this area. It might be helpful for you to see him, so I am going to refer you to him, as well. His practice is out in Hope. So, let’s hope for hope in Hope. And in the interim, I will send you for a Lyme test. But just so you know, in 20 years, I have never had anyone test ‘positive’."
Ah yes, the great test debate that I have been reading about. Upon my own investigation into this disease, I find a plethora of information on the importance of diagnosing Lyme based on clinical presentation as opposed to serological (CSI type evidence) tests and results. The tests are known to be highly unreliable and insensitive. But in general, clinicians have no clue about this, and and so rule out a positive diagnosis when the test comes back negative - even with the presence of symptoms!
Even the CDC has gone on record stating,“that commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.”
Furthermore, how is it that we in BC are still so misinformed about the symptoms and the need for a clinical diagnosis of Lyme disease? In fact, clinicians seem to be woefully unaware or unwilling to even acknowledge the prevalence of Lyme disease in this province?
Basically, that ignorance has cost me 9 months of my life.
APRIL 2007
I go for my Lyme test and wait to hear from this doctor in Hope. I am contacted the next day and am given an appointment with Dr. M for April 11/07. Dr. M was the first doctor who asked me what my quality of life was.
“What life?”
And then he asked me to assign a percentage to it.
"I don’t think to say that it is about 30% of what it used to be would be an exaggeration."
Both my husband and I responded together. We looked at each other. We were both struck by that. We knew that our life had been radically altered because of my illness and that we no longer functioned ‘normally’ anymore - but to have it assigned to a number was a rather dismal eye-opener. To finally have a medical professional acknowledge this loss as real and significant is a profound relief.
Dr. M then proceeded to take a thorough health history and physical exam. Our first appointment with him lasts well over an hour. At the end of it, he clinically diagnosis' me with Lyme Disease. He says he is willing to treat me.
We are dumbfounded. There is really no sense of relief. With diagnosis comes the reality that I now face an uphill battle to restore my health as this insidious disease has had 9 months to take up residence in my defenseless body.
However, we are buoyed by the knowledge that at least we finally know what it is that has so radically altered our life and now armed with this knowledge, we can wage war on it and begin getting our life back.
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