Dec 31, 2010

Back to Cancun

Here we are again...almost two years have passed since our last visit to Cancun. I'm excited to be here because truthfully, I don't remember much of our first visit.

In March of 2009 we vacationed here at one of the lower points of my illness trajectory. I saw much more of our hotel room than I did of the beach. A trip to the ruins just about did me in. I was cranky and tired and sick. Looking back, I wonder if I was an 'early adopter' of H1N1. Not long after we returned from our holiday, the whole flu thing came on the radar with Cancun as a sort of 'ground zero' for the virus.

In any case, the weather is warm, the pool is beautiful, the view is heaven. The buffet breakfast was too good to be true. Possibly the best french toast I've had since our Wedding Brunch of 2006. This resort is a true five star experience.

We were in Cuba earlier this week, but the weather, resort and service were all so awful we decided to "take a vacation from our vacation" and fly our at our first opportunity - fortunately, the first flight available was to Mexico.

I am so grateful to be here again. Grateful that my mother seems to be doing well, our fur-babies are in good care, my health appears to be stable (not counting my 3 hour naps for every four hours of wakefulness...). Grateful that my husband is almost finished his doctorate. We are so blessed.

Happy New Year, I hope the year ahead brings good health and happiness to us all!

Dec 23, 2010

How much of a perfectionist am I?

Yesterday I learned that my blood type is B positive...

I was annoyed that I didn't get an 'A'.

Dec 15, 2010

My Mom: Migraine or Stroke?

My mother is nothing like me - she's healthy and active, absolutely full of life (at age 70, she is averaging about 7,000 steps a day on her pedometer!), so it was unusual to get an emergency phone call regarding her health.

It started with her having a terrible headache behind her eye. Next came a feeling of extreme heat followed by difficulty speaking (she thought that she was making sense, but what came out of her mouth were just random words). Aphasia.

My first thought was stroke, so we rushed her to the hospital for evaluation. As I took her into the waiting room, I noticed that she was making sense...sort of...but using strange words and trailing off mid-sentence, forgetting what she had just been telling me.

Fortunately, a CT scan showed no signs of stroke. Unfortunately, there was no way to fully rule out a TIA (also known as mini-stroke).

Here's where it gets weird: my mother has a history of hemiplegic migraines that began about two years ago. These strange migraines look almost identical to a stroke. During the migraine, she loses feeling and control over half her body.

The first few times it happened, even the ER physicians thought she was having TIAs; but after a neurologist confirmed that it was an atypical presentation of migraine, we all got used to it and quit worrying when symptoms came over her.

This time was different, there was no aura, no numbness, no loss of control over one side of her body - only pain and aphasia.

We are waiting on another consult to re-evaluate, but at the moment, my money is on migraine.

Bizarre symptom of rare disorder? Maybe my mother and I are more alike than I thought.

Dec 11, 2010

Could it be MS?

I saw my third internal medicine specialist this week. My PCP, prompted by my recent high ANA level, decided my case was worthy of another look.

After taking a detailed history, the specialist told me that she didn't think my symptoms sounded like lupus, she said they made her consider MS.

Holy crap.

I have only known two people with MS, one spent two decades in a nursing home, the other spent most of her life in a wheelchair. That is scary, scary stuff.

Still, whatever is wrong with me is what it is. Discovering it -naming it - isn't going to make it worse.

Of course, she may come back with Chronic Fatigue Syndrome, which is just as good as Fibromyalgia for ensuring that you will be laughed out of most doctor's offices, and have eye rolls going behind your back.

The power of diagnosis. I wonder if physicians appreciate how much rests on having a name, a reason other than 'all in your head' to explain why you aren't fully participating in life?

Dec 7, 2010

Snow Day

This is my back deck. We are having a very big winter storm today. The city has been shut down and trust, our front driveway looks much like the back.

What a perfect time to decorate the Christmas tree and curl up by the fire with a warm mug of coffee...

Dec 6, 2010

pregnancy revisited

Since my last post on pregnancy, I have seen the "high risk obstetrician", my PCP, and the "paediatric pharmacologist" to get input on the advisability of pregnancy.

Interestingly, the biggest risk factor seems to be my blood clotting disorder, 'Factor V Leiden' (FVL). While it can be managed with daily injections of Low-Molecular-Weight Heparin (LMWH), there seems to be concern that FVL increases the overall risk of miscarriage and stillbirth.

The answer to whether or not I could stay on antidepressant drugs through a pregnancy is also unclear. The ideal would be to come off all medications, but that simply isn't an option.

Apparently, if my mystery illness does turn out to be lupus, that will also increase my risks.

So, do we want to chance it? I'm really not so sure right now.

Dec 2, 2010

a plea to my doctors

I am trying my best to get to the bottom of my symptoms, but I can't do it myself. I need you. I'm pleading with you:
  • Please help me find out what's wrong with me. I miss being able to work, study and rock climb. I miss going out with friends for dinner and drinks on Friday nights. I miss my old life. Something happened between then and now - help me find out what happened.
  • Please don't tell me that I need to learn to live with my symptoms. I am doing my best to cope, but until you can tell me what's wrong with me, I don't want to believe I will feel this way forever.
  • Please don't get annoyed that I ask for copies of my lab reports and ask you questions about flagged lab values. I am a curious person, desperate to find an answer. To you these questions are an annoyance, for me - this is my life slipping away.
  • Please don't patronize me. If you have something to say, please say it to me in person - not in your follow up report to my PCP.
I need you more than you can know. Please don't give up on me.

Nov 26, 2010

Hair Loss

Ahh, my wedding day... Possibly the best 'hair day' of my life.

I'm looking back at my pictures, only five years ago and wondering what the heck happened to my hair??

For the past few weeks, my hair has been falling out madly: long golden strands linger on every shirt, jacket and pillow case my head has touched.

As I start to catch up to my husband's receding hair line (he's bald!), new purchases have included....


OK...I give up. Why is my hair falling out?

Remember the old line, "It's better to look good than to feel good?" I agree.

I can handle fatigue, headaches, even brain fog...but please, 'mystery illness', please don't take my hair!

Nov 21, 2010

sick puppy

My sweet puppy wasn't feeling so hot last night. No matter how hard he tried, he just couldn't get himself comfortable. Then he vomited. More squirming. Still uncomfortable. This went on for hours.

After a lengthy consult with 'Dr. Google, DVM', I decided to keep him in our bed overnight so I could monitor any changes in his status.

This morning he seemed to be feeling better. He went outside to do his business and I noticed a strange whitish object in his poop. I took the hose to wash it off so I could see what he had eaten. As the water hit the object, white foam emerged like a bubble bath. SOAP. He had eaten a bar of soap.

I didn't know whether to laugh or cry. He's trouble, but darn he's cute :)

Nov 19, 2010

gratitude, part i

Time to focus on the positive. My life is full of wonderful, happy moments that don't seem to make it into my blog often enough.

This is my cat. She has been with me for eight years since I adopted her from a shelter. She rescued me.

I love her and her and her trance-like stare. Her purr has magic sleep-inducing properties.

Today I am grateful for my precious cat.

Nov 12, 2010

crazy fatigue

How tired am I?

Can't even put it into words.

Nov 9, 2010

Is a 1:640 ANA titre meaningful?

When I first started feeling ill, my psychiatrist wondered if I might have Lupus.
While my mood responded to antidepressants; the constant fatigue, fevers, chills, migraines and brain fog led him to think that there was more going on than a psychiatric issue.

He tested my ANA and found it positive 1:160

Referred to Rheumatologist. Disaster. She didn't want to test me further because I was a psychiatric referral. Depression causes fatigue, therefore I had a mental health issue and was waisting her time.

My new family doctor wondered about my ANA and re-tested it. It had increased to 1:320

Referred to an Internal Medicine Specialist. She ran a panel of autoimmune tests which came back negative. She diagnosed me with Fibromyalgia and told me my ANA wasn't meaningful.

Fast forward - one year later. I am feeling quite a bit better, but fatigue and headaches, brain fog still happen with alarming regularity. Often I'm fine on a brisk walk, can lift heavy objects without breaking a sweat...and then suddenly... I find myself short of breath doing the simplest of things. Anything physical or emotional stress comes at a cost. A busy day-trip to Detroit with my mother led to a three day sleep, with fever and aches.

But my mood is fine!

My psychiatrist is still not happy with my physical symptoms, and still doesn't believe that they are related to depression. He did another ANA last week which found a titre of 1:640 (Speckled).

He is puzzled by this, as a year ago, I tested negative for anti-thyroid antibodies, anti-phospholipid antibodies, anti-Sm, anti-Ro, anti-DNA....

Clearly, something is still wrong with me. Is a 1:640 titre important? I keep feeling like there is something else going on in my body, but running out of directions.

Nov 7, 2010

the wisdom of ERP

Can anyone explain to me why some physicians are belittling, condescending, and obnoxious towards certain groups of patients?

Today's lack of empathy in medicine comes from ERP, who has chosen to vent his hostility on what he calls "Nutty Patients". He rants about how much he hates to give them a "real" diagnosis (such as Lyme Disease, Lupus, Crohn's) because:

"These diagnoses are like crack to them. They LOVE it. They FINALLY can now say that have a real problem and go on to blame nearly every symptom they ever have on it!"

Of course, ERP makes a distinction about these diseases and the ones that he doesn't believe are "real" (such as Fibromyalgia, Chronic Fatigue Syndrome or IBS), because according to ERP, these are all "psychiatric disorders".

I'm sure in ERP's worldview, my critique of this repulsive post will be written off as "nutty", but I wish that ERP would take a few moments to work on some empathy skills.

ERP - do you know why patients "love" to have a "real" diagnosis?

Perhaps it is because physicians like you, people in positions of power, take pleasure in degrading the experiences of your patients when they cannot be easily verified with an 'objective medical test'.

Do you really think that patients enjoy feeling awful day to day, losing their jobs, dreams, relationships whilst being told that their problems are "all in their head?".

Perhaps if you were in this position, you would understand that being given a diagnosis means having some legitimacy. I have actually felt at times I would rather have a diagnosis of cancer than an unexplained illness, just so that I wouldn't have to deal with the shame of being labelled "nutty".

For the record, I have been evaluated by top mood disorder specialists (Psychiatrists) who agree that my symptoms are not psychiatric in nature.

Trust me, I would be happy with a mental health diagnosis if it came with an effective treatment. But ultimately what I would like is to be afforded some dignity by medical professionals.

Oct 27, 2010

facing my fears

I sent my thesis outline to my advisors last night. It shouldn't have been a big deal - just a sketch of my plans to get our conversation started...and yet...I could not start writing.

After reading over 200 articles on my topic, I'm a walking library on physician-patient relationships - but I am terrified to put my thoughts to paper.


Because I failed before. I received an F on a paper I did in my first year of the program during one particularly bad struggle with brain fog.

It was humiliating. I started to doubt that I belonged in the program. And for some reason it is still haunting me.

Even though...
- I graduated with distinction in my undergrad program
- Received A's in all but one course (A-) in my masters
- Managed dozens of staff, millions of dollars, and partnered on several CIHR grants.
- was accepted into two PhD programs

Why am I letting one failure in an otherwise excellent career hold me back?

Oct 20, 2010

how did i miss this one?

I recently came across this article, "the other side of the speculum" in Canadian Family Physician, written last year by a then 3rd year medical student, Brent Thoma. Under the heading of "Reflections", Thoma discusses his distain for the "horrible ritual" of the pap smear. [hint: it is not more enjoyable on the woman's side of the speculum, FYI]

In the article, Thoma describes his distain for giving pap smears; "Suffice to say, herpetic lesions, warts, yeast infections, and week-old tampons are not what get me up in the morning."

For once, I am speechless.

This was actually printed in a medical journal? I will have difficulty seeing this as a credible publication after their editorial board stood behind this juvenile, sexist rant.

I suppose to his credit, Thoma wrote a reflective letter about his article in a later edition of the journal. However despite his apology for the "use of humour", I think that the original article tells us more about Thoma's view of women and about his professionalism.

I know I would never want this man involved in my medical care.

Oct 19, 2010


Sometimes, when I have almost forgotten what it feels like to be healthy, I wake up to a good day.

Today was a GREAT day.

Shoulder pain - gone!
Migraine - none!
Fatigue - nope!
Brain fog - nope, complete clarity!

Driving downtown tonight - my ipod blaring Atomic* - I realized that if feeling this well and energetic could be bottled, I would be an addict.

It was bliss.

*Atomic by Blondie, from Eat to the Beat, 1974

Oct 16, 2010

not myself

My thesis outline is overdue and I'm stuck. The ideas are not flowing. My brain is feeling foggy again.

The pain from my shoulder is driving me insane. Nothing seems to soothe it. I can't focus on the lit review when my head hurts if it moves in any direction. this depression rearing its ugly head again? Now the days are getting shorter, its a worry for me.

I feel like I need more direction from my advisors, but I don't know how to ask for it.

If this is depression, it makes the idea of pregnancy that much more overwhelming.

Good thing for California dreaming...I'm just not feeling myself today.

Oct 13, 2010

my unwanted guest

I woke up three days ago with the most awful, stabbing pain in my upper right arm - lil' miss shoulder pain had arrived for another visit. She literally took my breath away. The back of my arm down to my elbow was numb.

I will never forget the first time she inflicted me with her presence - it was about 8:00 am, the morning of September 11, 2001. Shortly before I turned on my television and found the world changing before my eyes, she stabbed into me and twisted herself into my fibres. Since then, she comes to visit every few years, bringing days of relentless pain.

Despite setting her up on dates with Tylenol and Advil, shoulder pain is playing hard to get. She laughs at the humble analgesic's efforts to sooth and comfort her. She is a real bitch - an unwanted guest.

I want to show her the door, but she seems to have unpacked her bags and plans to stay a while.

Sep 21, 2010

trying again?

Three years and a half years have passed since the miscarriage. Over that time we have dealt with my post-miscarriage depression, my post-Mirena depression, and a lengthy 'mystery' illness that still remains elusive, although somewhat improved.

All of this time, we have been waiting for my health to get better so that we could try one more time for a baby. Last year I was advised to wait until I had been emotionally stable for at least a year. Well, I'm almost officially into my late thirties and there really is no more time to wait. If we are going to do it, it will have to be now. Going off antidepressants again? NOT an option.

A part of me is terrified. Our chances of conceiving are lower now, our risks are higher, the possibility of another miscarriage hangs over us, only outweighed by the idea of another post-partum depression. It's scary as hell.

There are so many reasons for us not to go forward. But somehow logic isn't winning this debate. It is fight between my head and the biological pull of motherhood.

I'm ready to try again.

Are we crazy?

Sep 18, 2010

mistaking a miscarriage for a drug seeker?

Three years ago I miscarried at 12 wks - an awful event that I documented in this blog post, in which I explored the psychological turmoil that surrounded my pregnancy loss. What I didn't write about at that time was the physical experience of the miscarriage. It was long and painful.

Yesterday, a post at one of my favourite medblogs "ER Stories", (where 'ERP' writes about life in the emergency room from a physician's perspective) touched me. The post lamented that medical staff discussed withholding pain medication from a known drug-seeker...who was dying of cancer. After yesterday's tone of compassion, I was disappointed to read today's post about drug seekers and how doctors are keeping score. I appreciate that ER physicians must make difficult calls for each patient, but the 'keeping score' attitude results in a culture of suspicion that undermines patient care.

Case in point: my miscarriage. After waiting nearly a week for the pregnancy to abort (they advised against a D&C), I was a physical and emotional wreck. The miscarriage lasted three days - over the May long-weekend. The only option for pain relief was the emergency room.

In the ER, I waited hours to be seen so that I could ask for pain relief and to find out how much blood loss was to be expected. The doctor who saw me asked me if I had tried Advil. Seriously? Who in their right mind would wait hours at night in a busy ER next to angry drunken people and police if they weren't in a LOT of pain and had tried everything else? He went on to ask me if I wanted to be examined. I don't know, you're the flippin' emergency room doctor. I've never miscarried before. You tell me - Is this normal?

The doctor treated me with a skepticism I would hope would have been reserved for repeat customers with a history of drug abuse. It was humiliating and made an awful experience even worse. Did he doubt I was really having a miscarriage? I would happily give consent for an internal exam to clear up any concerns about 'faking it'. Perhaps he thought that I was exaggerating the pain? Perhaps; even I was surprised at how painful it was - it was nothing like any period pain I had ever experienced. It was clear that he certainly didn't care.

Did he feel like he had scored after he failed to treat my pain?

Doctor 1 - Patient 0

Sep 17, 2010

Mirena IUD & Depression - Follow Up

Last year I posted about my unfortunate experience with the Mirena IUD triggering depression. I recently looked at the traffic report for this site and realized that 90% of people who visit my blog get here by searching for "Mirena +IUD +Depression".

I still don't think there is enough information in the public domain about the risks of Mirena re-triggering depression in women with a history of depression.

Of course, if you want more information about a medication, you can always look it up on the internet, right? Not so fast... if you live in Canada, the Canadian Mirena website takes you to a secure location where you need to register along with the DIN (Drug Information Number) of the product "you have been prescribed".

That means that unless you have been prescribed the Mirena IUD and have the package sitting in your hand, you cannot log on to the Mirena Canadian website. How's that for transparency?

If you are fortunate enough to be able to download the product monograph you will find the following:

Patients with a history of emotional disturbances, especially the depressive type, may be more prone to have a recurrence of depression while using MIRENA. In cases of a serious recurrence, consideration should be given to removing MIRENA, since the depression may be drug-related. (Mirena Product Monograph, p.9)

It is interesting to note that the Mirena US site makes absolutely no mention of depression whatsoever. The US site also does not list depression as a contraindication, or as important medical history to tell your doctor about. On the other hand, the Mirena UK site lists depression as the third bullet point under "most common reactions".

So, if you are concerned that your depression might be a result of your Mirena IUD - you are not alone!

Tell me your story - please talk about your experience with Mirena and depression in comments section below.

Sep 9, 2010

school is in session

The weather seemed to change overnight. Fall is in the air and it's time to get back to school. This term I am supposed to complete my comprehensive exams - eek!

I think I'm ready, but there is a little part of me that would like to do more coursework...mostly just to buy more time. The good news is that my research is on track and for the first time in forever, I am actually feeling well. [smiley]

Sep 6, 2010

diagnosing behind my back

You may recall a few months ago I saw an Internist who discussed the possibility of a diagnosis of fibromyalgia with me...I was not impressed.

I just asked for a copy of her report to my family physician and was shocked to find the following statement "I have diagnosed this patient with fibromyalgia". WTF??

When we discussed fibromyalgia during my appointment, she seemed to agree with me that it did not apply to me (fatigue being my dominant complaint) and even wondered aloud about whether or not fibromyalgia even exists as a clinical entity. She never once touched me during the appointment. In answer to my questions about the validity of 'trigger points', I was told me that "too much knowledge" can be a dangerous thing.

Why did she not tell me her diagnosis in person?

It feels disrespectful to have a diagnosis on my medical file that does not in any way reflect what was said during my appointment. It feels disrespectful to be given a diagnosis that the doctor herself doubts even exists!

But most of all, I am angry that she chose to write this in her report; avoiding saying this conclusion directly to me, face to face.

Sep 3, 2010

low ferritin?

My ferritin is low.

It used to be a measly "8", now it's in the low 20s. Despite numerous investigations, no one is quite sure why my ferritin isn't rising since I have been supplementing for over two years now.

One of my physicians assures me that low ferritin does not cause fatigue if other blood tests do not indicate anemia.

My research has found conflicting information. But the fact is, I am crazy fatigued most days...and I have low ferritin.

Any ideas on how to raise it? Would dessicated liver tablets help?

BTW, my folate and B12 are all well within range.

Aug 22, 2010

You know you're in trouble when...

Fatigue is a common complaint of women in their 30's. When a woman presents with this routine symptom, she will be likely first be assessed for the 'usual suspects', such as:

- hypothyroid
- anemia
- pregnancy
- B12 deficiency
- diabetes

No answers there? Let's move on to the next possible culprits...

- sleep apnea
- depression
- autoimmune disease

But what if all these tests fail to reveal an obvious cause? What if you've become the medical equivalent to a 'cold case'?

Congratulations! You now have a "medically unexplained illness".

You may not be able to work, study or get out of bed more than a few hours a day - but hey - at least your lab results are within normal range.

When your Internist asks, "have you ever considered homeopathy?", you know you're in trouble.

Apr 15, 2010

turns out, I do get "aura"!

I always thought that I didn't get an aura before my migraines. I was actually a little jealous of the people who got flashing lights, zig-zags, and a host of other interesting "heads-up" symptoms that a migraine was on its way.

The other day I realized that about 20 minutes before the start of my headaches, I get a hard to describe "prickly", "pins and needles", "electric" kind of feeling from my occipital area around to my eyes.

I suppose I always thought that this was actually the headache (as it is uncomfortable), but I've recently learned that if I can throw enough medication at it while I'm in this "prickly" phase, I can prevent it from getting worse.

Does anyone else get "aura" that isn't visual?

Apr 14, 2010

teaching empathy?

A visting scholar, Dr. Arno Kumagai from the University of Michigan Medical School gave a fascinating presentation to our faculty a few weeks ago.

Dr. Kumagai is the director of an innovative program for first-year medical students called the "Family Centred Experience", where students are matched for a year with families dealing with chronic illness.

At the end of the year, the students create some form of artistic representation of the illness experience.

Please take a moment to listen to this mp3. I wish I could give proper credits, but was only able to find it listed as: Ben, Heiko, and Cailin
The song is about migraine experience, it left me in tears. These students are amazing.

mp3 Performance of "Lullaby", scroll down page to see

Apr 11, 2010

haute migraine

Apr 8, 2010

The "F" Word


I saw an Internist yesterday about why I don't seem to ever feel 100% well. After reviewing my symptoms (constant low-grade fever, feeling flu-like ever few weeks, horrible fatigue), she mentioned that some of my concerns sounded like fibromyalgia.

I worry that if I get stuck with the "f"-word, it will undermine my efforts to find out what really is wrong with me. My main issue isn't muscle pain; it is fatigue and flu-like illness.

The thing is, I know my body. I know what it feels like to be healthy and active. I reject the chronic disease label. I don't want to give up hope and just learn to live like this.

Fortunately, this Internist is willing to keep working with me to find the source of my problem. Next stop: endocrinology. Possible future step: infectious disease.

*I do believe that Fibromyalgia exists. I just don't think that I have it.

Mar 20, 2010

Getting it Right

While it feels sometimes like all I do is critique our medical system, I have to say this: when they get it right, they really get it right.

Two weeks ago, I lost a dear member of my family. That day came too soon for us. What started out as a simple bladder infection turned to sepsis in a matter of hours.

When it was clear that her situation had become grave, the staff in the ER could not have been more wonderful. They helped us through the difficult decision to withdraw treatment and move to palliative care.

The doctors, nurses, social workers, chaplain, housekeeping staff - were all kind and attentive. It was a busy night in the ER with patients stacked in the hallways; and yet they managed to give us private space to be with her while she passed. They brought us juice and crackers. They walked us through every stage of her death.

When the Canadian system functions well, it is a thing of beauty to witness.

Mar 15, 2010

Shame-based medical education: Is there a better way?

While working on a literature review on medicine and power, I came across this unfortunate quote. I really, really hope that this is not the general opinion of physicians, but I am curious what others think...

"I think that our working relationships [Between ICU doctors and nurses - ETA] are very forward—we are all part of the team—if the doctor isn’t there it fails, and if the nurse isn’t there, it fails.
. . . I think we (doctors) lead the team by involvement and motivation.

We promote, motivate, demonstrate respect, call each other by first names. I think that some of the nurses may feel that there is a hierarchy, but I think that it’s their problem. They’re shit scared of medicine, but that’s their problem.

The junior staff (junior doctors) have a rough ride if they don’t know the patient. They are trained by embarrassment [BBM -ed]. Nursing is different, it’s high on molly coddling. Nurses appreciate handholding."

-- Anonymous ICU Physician

Coombs, M. (2003) Power and conflict in intensive care clinical decision making. Intensive and Critical Care Nursing 19, 125–135

Feb 7, 2010

Fear (*a personal journal entry)

Today I am afraid that the fatigue will never go away.

I'm afraid that I will always be a heartbeat away from sleep. It comes on me and attacks and there is nothing I can do but succome to it's force.

I wonder if it's depression, but I really don't feel depressed. My mood is actually really good. I feel optimism and anticipation for the work I'm doing. But I am so tired.

Maybe the remains of my sinus infection?
Or a reaction to antibiotics?
Or perhaps my stupidly low ferritin level?

This cycle repeats itself every few months. I get a short while of energy and clarity, only to plummet back into this black hole of fatigue.

I'm afraid my husband, my school, my workplace aren't going to be as accepting this time as they were last year.

Feb 2, 2010

Patient consent and the surprise pelvic exam

I read this article in the Globe and Mail (one of Canada's two large national news papers) and was aghast. Medical students doing pelvic exams on unconscious women without consent?!

After contacting some friends who would know more than I do about this, I am feeling somewhat assured that Mr. Picard may have overstated the problem. Still, there is a problem.

This really shouldn't be happening at all. While some might argue that the consent implicit, I would certainly like to be explicitly informed if there is going to be a student prodding around in my parts. If it were explicitly stated, I would give consent - I suspect many women would.

There is one way to clear all of this up: just ask.

Feb 1, 2010

Open letter to the doctor I saw this morning

Dear Dr. Whatever,
I appreciate that you are filling in for my regular family physician. I understand that you probably do things a little differently than she does; but your practice leaves a few things to be desired.

Despite that you have all of my medical records electronically, I didn't make a big deal over filling out all of your paperwork, with medical history, medications and allergies. If I'm willing to go along with writing all of this down for you, the least you could do is read it. Especially the part where I wrote - "Allergies: I had a rash while taking Doxycyline." Yes, a rash. Some skin redness.

I made myself comfortable and was pleasant while your nurse took my blood pressure. Unfortunately, she refused to share it with me, saying, "the doctor doesn't allow us to share test results with patients." When I raised this with you, you told me that patients aren't sophisticated enough to understand these confusing numbers. (It's only blood pressure for Gawd's sake!) Or, worse, they might want to have a conversation about it!

You walked into the room and stated your name and stared at me. Was that an introduction? Next time you might want to try a greeting, such as "Good morning, my name is______".

I realize that you don't know my medical history, but could you please try take my word for it when I tell you that I use a saline nasal rinse every day. And yes, I do know what saline is.

And finally, when you asked me if anything seems to help my sinus pain, and I told you that a Tylenol-based decongestant seemed to improve symptoms, perhaps lecturing me about the lack of efficacy of these products ("No, that wouldn't have helped, studies have shown that these don't work) was a little uncalled for?

Thank you for your time, I hope not to see you again.

(am I being too harsh?)

Jan 31, 2010

Sleep delays my life (get up! get up!)

Ever heard the REM song "Get Up"? I am living it right now.

After months of feeling great, the past few days I am like a zombie. I could close my eyes and fall asleep at just about any time. The past few days I had to lie down and take a nap mid-day (about 2 hours) because if I didn't, I was going to fall asleep standing up. It is like a bloody sleep attack.

I'm sleeping well at night, using my "happy light" in the mornings, taking my Synthroid, iron & B12 supplements. I just hate this feeling. I'm all stuffy and congested and sleepy.

The good news is that despite this little setback, my mood is still really good. My thinking is still clear and I'm not in any pain. But yeah, sleep is delaying my life...I wish I could just get up.

Jan 26, 2010

TSH Range - The Saga

How hard can it possibly be to diagnose hypothyroidism? Let me share with you my journey...

Primary Care Physician:
1. Patient books appointment with family doctor to discuss weight gain, heart palpitations & fatigue.
2. Doctor orders TSH test
3. Doctor tells patient that their TSH is within the "normal range" of 0.5 - 5.0 (no mention that TSH has changed from 1.9 to 4.8 since last test
Opinion: advises another TSH test in three months to monitor.

Cranky Internal Medicine Specialist:
1. Meet with patient, treat with skepticism.
2. Decide that a patient with a diagnosis of depression cannot have anything else wrong with them.
3. Note that lab results of TSH at 6.2 are "slightly elevated", but no cause for concern.
Opinion: Patient has history of depression. Depression causes fatigue and weight gain. Refer back to referring psychiatrist.

Private Health Care Physician:
1. Patient presents with weight gain, relentless fatigue, feels lousy.
2. Doctor orders TSH test.
3. Doctor notes that TSH is 8.3
Opinion: Notes that new TSH range is 0.3 to 3.0 - treat immediately, ideal is to be as close to 1.0 as possible

Specialist (Psychiatry)
1. Reviews lab results from Private Doctor
2. Disagrees with the new TSH reference range, but notes that people with depression seem particularly sensitive to thyroid fluctuations.
Opinion: Treat - but not as aggressively as suggested by Private Physician.

Much Nicer Internal Medicine Specialist
1. Reviews previous lab tests.
2. Asks why previous Internist didn't treat thyroid.
3. Suggests that reference ranges are not particularly meaningful, and that one should treat the patient, not the lab result.
Opinion: Thyroid fluctuation could have been my issue long before my TSH started to change. Thyroid is under-diagnosed. Treat aggressively.

Five doctors, four perspectives, two reference ranges, two "wait & see", three "treat", two "aggressively", one "conservatively".

This just shouldn't have been so difficult.

Jan 23, 2010

The past 8 months in brief

When I started this blog, I didn't have a vision for what I wanted to say. Which voice would author this blog?
  • The frustrated patient fighting an invisible illness?
  • The PhD student who studies politics and power in the Canadian health system?
  • Or perhaps the voice of the 'former-health-system-administrator' would come through?
As it happened, none of the things I hoped to say were coming out clearly because my brain had turned into pea soup. I suppose when you name your site "brain fog", it should be a tip off that you aren't in a good head-space.

Last spring I quit writing here, thinking 'if I am sick of listening to myself complain about feeling crappy all of the time, everyone else must be too'.

Summer came and I sank lower into the pit of illness. I won't belabour the point, but I was just seriously unwell.

One day my neighbour saw me on my porch (a big outing at the time) and suggested I visit the "private, executive health clinic" in town. HERESY! Private clinics are for Americans and people who don't believe in the Canadian value of Universal Healthcare. It would be an act of treason.

The fact is, I was too sick to care about my values anymore. I had stayed the course with the public system and I was getting worse by the day. So off I went to the private clinic for a health workup complete with smoked salmon and orange juice.

The private clinic picked up something that everyone else seemed to have missed. Hypothyroid & Anemia. I would never, in a million years imagined that these two benign sounding conditions could cause all of the physical misery and cognitive problems I was having.

But the results don't lie. After two months of treatment, I started to feel better. I started to read books again. I started to walk upstairs without having to rest halfway. I went back to school. I took on a volunteer position in clinical social work. And I haven't looked back (very much).

Interestingly, since my thyroid came under control, I have had almost no symptoms of depression. I am grateful for the chance to feel healthy again and I am angry at the internist who told me my problems were "all in my head". I also am perplexed that it took a private clinic to take my complaints seriously.

What does this say about the Canadian system that I believe in so dearly? I believe that it has something to do with the power that being a 'consumer' of health services confers on a patient.

I felt conflicted between my values and my personal experience - and realized that I may have just tapped into a great thesis topic.

In the end, as much as I would like to find one voice to speak from, I realize that, like all of us, I have occupy multiple roles: patient, practitioner, student, researcher, critic & proud Canadian.

So, I'm thinking of blogging again. I'm not sure where it might take me, but hopefully there will be some interesting discussions along the way!