Oct 7, 2011

Doctor's Orders

As the days have been getting shorter, my mood is falling slightly. Also, my recent Vitamin D test showed significant deficiency.

I love my psychiatrist; he tells me to up my Vit D to 2000 IU/day....then he stops and says "Why don't you just go to sunnier climate for a few weeks?"

I cannot change weather, so I am packing up and heading south; this is one of the few times I will not argue with my physician's recommendations :)

Sep 30, 2011

Overdoing It

In my quest to feel useful last week, I decided to tackle our garden. The beautiful summer weather had turned my manicured lines of day-lillies into a small jungle.

With help from my mother (who is over 70 years old!), I spent hours digging up, clipping and splitting day-lilly plants. It was physical work, do doubt, but it didn't seem too onorous.

...until the next morning. HOLY CRUMBS. I have never been so sore in my life from exercise.

This was no ordinary 'after burn' from a workout. This was brutal. I could barely walk, stand or lie down comfortably. The pain mocked the efforts of Tylenol and Advil.

For the first time, I stopped to consider that I might, might, actually have Fibromyalgia.

Before all of this crap started, I used to run regularly, work out at the gym and rock climb. There were times when it took days to get over some of my workouts, but those times were nothing like this.

Fast forward one week and I am moving much more easily, but I still HURT.

My garden, however, looks beautiful. Maybe this weekend I will plant some tulip bulbs...

Sep 21, 2011

time off (or 'what will people think?')

It's official - my year-long leave of absence has been approved. For the first time since I was a teenager, I find myself both unemployed and out of school.

I actually have nothing to do. 

Brilliant Husband and I are beyond fortunate to have a housekeeper/goddess/friend who takes care of us two days a week. This woman is a Godsend; she bakes us homemade gluten-free bread and makes fresh yogurt and jams, she does our laundry and keeps all 4000 square feet of our house clean.  Even though I could probably take on more house work with my new-found free time, I am soaking up the wonderfulness of having so much help.

Whether the balance of my symptoms are caused by depression, chronic fatigue syndrome, lupus or narcolepsy; it doesn't change the fact that there are still some things within my control: like sleep, food & exercise. For now I am working on getting myself on to a schedule and working to build my physical strength and endurance. It is a slow crawl right now, but each day gets a little better. 

Even though I know that taking time off is the right decision, I still worry that people are going to judge me; that they will think less of me for being at home, or accuse me of being a 'lady of leisure'. I wish that everyone could understand that having time off isn't that great when you aren't feeling well enough to enjoy it. But at the same time, I also know how privileged I am to have this luxury.

This is an interesting time in my life, I've never felt so adrift.

Sep 2, 2011

Did my dog have a seizure?

Yesterday, my puppy (ok, he's 3 years old, but he'll always be my 'puppy') was acting a little bit off. Something about his usual peppy step was just a little slower than usual.

While taking a short break from tug-of-war with his brother, he did something very odd:
Puppy started to shake. His eyes rolled up into his head and moved about in a flickering sort of motion. It lasted only seconds and afterwards he seemed back to normal.

We lost our senior dog, Elliott, three years ago to a brain tumour (somewhat common in Boston Terriers), so this development has Brilliant Hubby and I both a little freaked out and worried about Puppy's life span.

From everything I've read online, it seems that there isn't much a vet can do about a single seizure, so many recommend watchful waiting to see if it happens again.

Today Puppy seems to be his playful, happy, boisterous self. 

Has anyone had this happen with their dog? What did you do?

Aug 27, 2011

Modafinil: A short story told in pictures.

This is how I feel on Modafinil*!

...and this is how I feel the day after Modafinil.

* Modafinil is also known as Provigil

Aug 22, 2011


Penelope, Montana, 2003.

Rock climbing used to be my passion. Five nights a week I could be found in the climbing gym, working the walls and bouldering until my wrists trembled.

I have dreamed of being back on the wall, and this past Saturday, I made that dream come true.

Baby steps. A 5.6 route at the most...but I made it halfway up.

I used to nail 5.10a routes and hang upside down in the bouldering caves. In other words, I have a LONG way to go to get back to where I was in 2003.

Maybe I will be well enough to climb again, maybe not...but at least I took the first tentative steps to climbing back into my life.

Jul 17, 2011

Time Out

After months of debating whether I should quit the program, look for a new advisor, or soldier on, I've made a decision: I'm taking some time off to think about my future.

Grant you, this probably sounds like indecision, but for me it is an accomplishment.

I took a deep breath and told my advisors that I will not be pursuing the thesis that they had signed off on back in April. I need to work on something meaningful to me, not just to my advisors. No wonder I felt like I was on the wrong track.

Getting back to the research I want to do will likely require new advisors, perhaps a whole new faculty. But it will be worth it if I can find a good fit.

I've been ruminating on this decision for months (anxiety, anyone?). But now, I'm going to do my best to relax and enjoy the rest of the summer without thinking about my future.

Jun 27, 2011

Serenity Now - See ya later.

Serenity Now, I won't miss you.


Keep it classy.

Jun 22, 2011

Low Ferritin (part ii)

I almost called my lab results correctly...all normal except for:

ANA - 1:640
Ferritin - 26 (normal reference 80-300)

Why is my ferritin so low?
Does this explain my relentless sleepiness?

Obviously eating gluten-free for the past five months hasn't improved my absorption.

I am so sick of my life being defined by illness. I wish more than anything that I could just have my health back.

Jun 14, 2011

Decisions, decisions...

I saw my doctor yesterday and told him how feelings of anxiety and depression were creeping up on me again. He raised my antidepressants and ordered a long list of blood work.

Did I mention that I hate 12 hour fasts? I love breakfast. Anyhow, I got 10 vials of blood taken this morning and will likely hear back soon if anything is not normal.

My prediction:
Normal labs for all except ANA

The doctor still continues to think there is something 'else' going on with me that has nothing to do with my depression.

But he did council me that stress isn't good for any condition; physical or mental.

He advised that I visit with the Dean of my program and try to sort out getting a new advisor. He thinks I will feel much better once I deal with this issue.

I told him I'm thinking about quitting the PhD program and he has encouraged me not to make any decisions until my current depression lifts.

I do agree with that advice, but in my current state, going to meet with the Dean feels overwhelming.

Jun 10, 2011

the kitty brigade

I've been feeling blue the past few days...detached and unmotivated. Last night I talked to BH about my worry that depression was back. Did I mention that BH is a problem solver?

Last night, while I slept, "Hello Kitty" invaded our house. Hiding by the lamp, under the flowerpots, next to the stove, by my toothbrush were tiny little Hello Kitty figures.

Like an Easter egg hunt, I turned the house upside down finding hidden kitties in nooks and corners. Each kitty brought a smile to my face.

My husband told me later today that because I was sad, he had called in the 'Kitty Brigade' to cheer me up...and really, who wouldn't feel happy with a kitty brigade in the house?

Jun 8, 2011

Sleep Study

My polysomnographic study (sleep study) was not nearly as restful as this...

Did you know that a sleep study requires quite a bit of monitoring? Between EEG wires glued into the hair, ECG leads glued to the chest, wires attached to the legs to monitor for restlessness, wires in the nose to capture breathing and a pulse oximeter on the finger, it is not easy to pretend you are home in your own bed.

Despite the odd sensation of having a video camera pointed at me whilst tied to the bed with wires, I managed to fall asleep quickly and slept straight through until the wake up call at 6:45am. (Of course, I can fall asleep pretty much any time, anywhere these days...)

In the morning, I asked the technologist about my night's sleep. After the usual disclaimers, the tech told me that my study surprised her. Given my level of sleepiness, she expected to find clear indications of sleep apnea or restless legs. However, despite some arousals throughout the later part of the study, my oxygen remained high and my legs remained still.

I am now waiting for final report from the physician, but not surprised that I had another unrevealing test.

After the test, I made my way home, ate breakfast and went back to sleep - for the rest of the day.

Jun 7, 2011

so, it wasn't THAT

Looks like my little pink line was just an evaporation... nothing to explain the sleep marathon I've been running the past few weeks.

Lately I've been useless. I can't concentrate worth shit and am falling behind on all of my work. I sleep outrageous amounts of time and can hardly keep my eyes open when I'm awake.

Maybe this is depression? Perhaps some of it is fallout from my advisor's less than kind words? Maybe its time to give up on the PhD and put my efforts somewhere else?

I just hate to make any big life decisions when I feel like crap. It was only weeks ago that I was feeling like there was a light at the end of the tunnel. How did I get back to this place again?

Jun 4, 2011

One possible explanation...

I'm not actually "late" yet, so chances are that this is just an evaporation line; but it would go some way to explaining the bizarre attacks of sleep I keep having.

Brilliant Husband says you get what you pay for (in this case, $1.25) and that perhaps I should buy a test from somewhere other than Dollerama. I'll do that in a few days...

May 31, 2011

What the bleep is wrong with me?!?

The past few days I have slept nearly non-stop around the clock - waking up only to complete the most crucial life functions...like eating.

My body hurts in ways that make no sense. My elbows hurt. My legs ache. I feel like I completed an Ironman and then lost a few rounds in the boxing ring.

Walking from the kitchen to the bed I am short of breath and dizzy. I hit the mattress and find myself asleep for 6-8-12 hours at a time. I wake soaked in my sheets from night sweats.

The sun outside hurts my eyes and I hide in the darkest room in the house to avoid the light.

All of the gains I made in the past few months have disappeared. Where did they go??

No point in calling the doctors; they've heard it all before and have anything new to offer. No point in telling my friends, who wants to hear this crap? My family are kind, but worried...I don't want to trouble them either.

Is this a flare?
A relapse?
Extended jet lag?

I can't find a single diagnosis that matches my symptoms and it is frustrating as hell.

Thanks for listening...I'm going back to sleep now.

May 29, 2011


One of the HUGE benefits of my life with Brilliant Husband is the ability to travel with him to wonderful locations and stay in some of the nicest hotels.

A week ago, we were in Geneva for a conference in which he was a keynote speaker. We stayed at the amazingly gorgeous Hotel Kempinski located along the shoreline of Lake Geneva. The picture above was snapped on the balcony where we had breakfast each day.

The downside to this wonderful perk is that I am a terrible traveler. When we cross time zones, I spend days in bed sleeping off jet lag. I catch every germ that passes through the recycled air of the plane. My stomach goes into crisis with any change from routine, and digestion comes to a standstill. NOT the best way to see the world!

It will come as no surprise to anyone who has followed my blog for some time to hear that I spent the day, afternoon and evening our our 5th wedding anniversary lying in bed in a coma-like state. Our plans for a romantic anniversary dinner went out the window when it became apparent that I was too woozy to stand up and get to the shower at 5 PM.

Fast forward to the next morning when I found myself wide awake at 6 AM. I quietly got dressed and went outside to explore.

Walking along the path along the lake, I watched the sunrise over the mountains. It was magical. Out of the corner of my eye, I saw the most beautiful white swan come into view, swimming towards me.

That morning, I was fully awake, and it was perfect.

May 9, 2011

When your dog is your baby: post mothers day blues

I can be overly sensitive, even when I know it's not rational...which happened yesterday during our Mothers Day celebration.

DH and I had a lovely gathering for our moms for cake. Joining us were our close friends who have a six-month-old baby.

I realize that dogs are not children, but since we don't have children, I tend to think of our dogs as 'my babies'. However the "real baby's" mom comes from a culture where dogs are not considered pets. She struggles with the idea of dogs living in the house. I don't really understand her perspective, but when she is over, I do try to keep the dogs away from her, or offer to lock the dogs in their kennel.

For the most part, the visit went well, but at one point, my puppy walked over to where she was sitting and licked the top of the baby's hand. Baby's mom looked horrified. She jumped up and went to the kitchen sink and scrubbed...and scrubbed...and scrubbed. She was clearly disgusted.

Now I'm no fan of dogs licking. I don't encourage it at all. But somehow in that moment, my heart felt broken.

I already feel badly that we don't have a baby of our own, and likely never will. I feel guilty that we've only given our moms grand-dogs. But to have my dogs regarded as filthy creatures by my friend who is lucky enough to have a child just hurt.

Yes, I know I'm in the wrong.

I realize that my friend is entitled to feel however she wants about dogs.

I realize that as a new mother she is naturally protective of her baby and doesn't want him exposed to germs.

But my feels are hurt.

I should just get over it, and I suppose I will, but tonight I feel sad that our little family isn't a "real" family...even if we sign our mothers day cards with love from both of us and the 'fur-kids'.

May 3, 2011

Election Day - The Morning After

Like most Canadians, I didn't see the need for yet another federal election...(this being our fourth in 7 years!)

I was fine with a Conservative minority government (held on a tight leash by the Liberal opposition and the NDP). No one seemed upset with the status quo except for the delusional Liberals who triggered the election six weeks ago.

As I surveyed the field of candidates, I found them all lacking.

Conservative Leader and incumbent Stephen Harper: with his steely gaze and oddly oppressive approach to transparency (only 4 questions allowed at every stop along his campaign trial) seems to present a danger to Canadian values (more prisons!) - but for now, he's the most solid leader we've got....sigh....

Liberal leader (actually he resigned this morning) Michael Ignatieff: An intelligent man who just could not connect with voters. I think voters cared less about his lengthy academic career in the USA than we did about the overall feeling of inauthenticity that he emitted. With all the panache of a pollster's talking point, he seemed to be, well, whatever you wanted him to be. (Much as I dislike Stephen Harper, I do think he is authentically aloof and controlling.)

Which brings us to NDP leader Jack Layton. How could anyone not like Jack? With a genuine smile on his face, he crossed Canada with the help of a cane as he recovered from medical ailments. I like Mr. Layton's style, but am lost to understand how his party would pay for even more government.

Mr. Layton also survived a late-campaing sex scandal to become the official opposition last night. Who the heck cares if Layton was found in a massage parlour in 1996? He was not even charged! If this was the best dirt they could dig up on the guy, it only served to make him more interesting than the other candidates.

Forgive me for not discussing the platforms of our lesser-known parties; groups like The Green Party, The Animal Alliance Party, The Communist Party of Canada, The Pirate Party, The Marijuana Party, The Rhinoceros Party, Christian Heritage Party of Canada -- suffice to say, they represent Canada's diversity.

Much like blogger "Not House", I came thisclose to spoiling my ballot, but ultimately decided to bite the bullet and make a choice.

And so...we have a Conservative Majority government. *shiver*

Mr. Layton, Mr. Ignatieff, couldn't you just have let well enough alone?

Apr 28, 2011

The Road to Recovery

I've been holding off posting about this, because I was afraid it was temporary, but given that I'm now at 4 weeks, I am going to share my news: I am feeling well!

It sounds so simple, and yet the difference between how I'm feeling today vs. how I've been feeling for the past few years is so radical that it defies description.

What does a well person do that an ill person can't?
  • decide to walk the dogs, come home and realize the cat could use a walk too!
  • travel to Amsterdam, come home, have a miserable cold followed by a sinus infection and still have enough energy to cook a meal, go for a walk, study...
  • plan two trips in the next month and have some vague confidence that they will actually work out.
  • start working on literature review for comprehensive examinations
  • wake up and get out of bed, every single day!!
  • go for a walk and burst into a light run (only for a minute, but it felt SO GOOD).

I wish I knew what triggered my recovery. Here are my top theories:
  • Gluten-free diet (followed strictly since mid-January)
  • Longer days with more sun exposure (valid perhaps, but happens every year without this kind of impact)
  • Husband finishing thesis?
  • Illness spontaneously in remission?
My vote right now is on diet, I'm sure that is simplistic, but it is the only factor that has truly changed in my life.

Whatever is responsible, I cannot begin to describe the joy that comes with feeling 'normal' again. Trust me, normal does not equal boring!

Apr 16, 2011


After our whirlwind month of March (DH successfully defended his thesis), I accompanied my brilliant husband on a short trip to Holland, where he was launching his new book.

What an amazing trip. I spent my days wandering the streets and canals, taking pictures and sipping cappuccino at sidewalk cafes.

Being gluten free in Holland is surprisingly easy, the hotel concierge called ahead to book reservations and ensured that there would be GF options available. One restaurant even baked me a little gluten-free cake with a chocolate centre. Delicious!!

I am savouring my health...enjoying every day that I can be out in the world exploring, not locked away in a hotel room sleeping.

From here, my advisor's comments sting less and I feel more alive. What more could I ask for?

Apr 6, 2011

At last

My thesis proposal was approved today. At last.

It is good news, but was delivered with a spoonful of bitter advice. "Stop being so whiny, Penelope", my Advisor told me. "You drain the oxygen out of all your relationships when you mention your illness".

Good to know, I didn't realize that I was causing O2 issues for the folks on my committee!

Mar 5, 2011

A better day

I woke up this afternoon (after 12 hours of sleep) feeling refreshed and kind of...happy?

The sight of 100+ student papers sitting on my desk, waiting to be graded was daunting, but kind of enjoyable too. It is interesting to look at the world through the eyes of a second-year undergraduate student.

My dearest husband is nearing the completion of his doctorate and burning the midnight oil to finish some last minute details in time for his defence next week. I am so excited for him, this degree has been ten years in the making and he has done it all while working full time in private practice and dealing with his own diagnosis of adult ADHD. He is an inspiration.

My ten-year old Princess Cat is also feeling much better. She is off of the morphine she was prescribed for pain and appears to be comfortable. This is evidenced by her sleeping on my head once again (after several worrisome days of her hiding in the basement). Her illness cost us about $900.00, but she is worth ever penny.

After spending a night in the ER with my mom, I realized was that my cat was able to get much more timely care than my mother!

Of course, my mother's care did not require any out of pocket payments....

here's to tomorrow!

Mar 1, 2011


I don't feel like being a student anymore.

There, I've said it.

I've given it my best shot this semester, but my heart just isn't in it anymore. It's all I can do to get out of bed most days, and the idea of doing research in my current state is just too much. I was barely keeping my head above water until last week. My mother took ill and so did my cat. Between trips to the veterinarian and waits in the ER, I couldn't get anything done.

Yesterday I slept for 15 hours straight. Woke up, did some research and went back to bed. I was so cold, I could hardly stop shivering. This is just the way it is most days for me now.

My brilliant DH will be defending his doctoral work in two weeks time. I thought that once he had his PhD, it would make me want to work doubly hard to finish mine. But really, it's just the opposite. I truly don't care today.

Do I withdraw?
Wait another week?
Or just go back to bed?

Feb 26, 2011

The Great Lyme Debate

Over the past few years, I have considered the possibility of Lyme disease (LD) as the cause of my problems. Fatigue, body aches, sweats...all come with Lyme territory.

The other night I watched an episode of "Mystery ER" (lame, I know...) and saw the story of a woman with exactly my symptoms. I watched riveted - is it possible that this could be what's wrong with me?

After years of losing her life to feeling chronically awful and being diagnosed with depression, the woman on the TV show was finally diagnosed with chronic lyme disease and was treated with intravenous antibiotics...by the end of the episode, she had fully recovered.

Before I was sick I spent a lot of time in the woods hiking and rock climbing. There were plenty of opportunities for a tick to get attached to me, although I don't remember ever seeing one. To date, I've been tested twice and found to have a negative ELISA. That should be the end of the story, but is it?

A recent Canadian headline told of 13 people who were tested for Lyme Disease (LD), for whom the results were Interpreted Incorrectly. This is no doubt a black mark on the Winnipeg testing service, but probably not much for the average person to worry about.

What may be of more interest to the public is the possibility that there are thousands of misdiagnosed cases of LD, cases not found because of faulty testing and a resistance in the medical community towards the idea of a chronic LD. ( A study of Connecticut doctors found that only 2% believed in the existence of chronic lyme disease and provided treatment).

Lyme Disease, in its early stages is well recognized as a valid diagnosis. However, there is disagreement about the reliability of the tests (which are performed in Canada by government laboratories). And disagreement about the validity of the disease itself (see Proof That Chronic Lyme Disease Exists, 2010)

Using the CDC criteria, Canada uses a two-step process that begins with a screening ELISA, which, if positive, is followed by the Western Blot. A 2010 literature review found that "Due to B. burgdorferi strain variation and other factors (see following sections), the ELISA for LD has only about 50% sensitivity". Further, a 2010 Slovakian study found that that all of the 32 patients in their study "had specific antiborrelial antibodies confirmed by using the western blot in spite of negative ELISA"

I was particularly interested to learn that one study found a link between a positive ANA and LD, saying, "Patients with disseminated LD often have positive antinuclear antibody tests with titers as high as 1:640". Hmmm...Sound familiar?

On one side of the fence, there are patient advocacy groups who believe that LD is under-diagnosed and under-reported. They guard in secrecy the list of "Lyme Literate" physicians, lest those doctors be censured by their medical colleges.

On the other side are the physicians; left to make sense of patient's vague symptoms in the absence of clear diagnostic tests.

From my perspective, there are some serious questions about LD that Canadians need to be be asking.
  • If chronic LD is a real entity, shouldn't we be able to test for it conclusively?
  • If ELISA is unreliable, then why are we using it? Why can't Canadian patients request (or self-pay) for the superior Western Blot test?
  • Are the risks of antibiotic treatment so high that they truly outweigh giving self-diagnosed patients the benefit of the doubt?
If the medical community itself can't figure this one out, what hope do patients have of making sense of this issue?

And still, the "what if" questions haunt me...
  • What if my illness is treatable?
  • What if I don't always have to live this way?
  • What if this could be treated, but no one ever finds it?
Do I believe the ELISA? Or do I head to the USA for tests that the CDC tell me might be offered by unscrupulous labs?


Feb 23, 2011

An 'overnight' cure?

I saw another doctor yesterday. This time an ENT.

I told him about the headaches, the brain fog, the sleepiness, fatigue...and the constant pain around my eyes (sinus area).

He said my sinuses looked great on my recent MRI (I love electronic health records). And then he asked me if I have ever been evaluated for obstructive sleep apnea. Apparently, it could account for ALL of my symptoms.

Sleep Apnea? Wow. What if everything I've been going through could be explained? And treated easily? What if the past four years of my life were a bad dream?

The only hesitation is that I don't have the typical risk factors associated with OSA. I am not overweight, not male, and DH has never complained about me snoring...Still...my sleep study is scheduled in two months.

I hate to get my hopes up, but if this is "it", I will be eternally grateful.

Feb 22, 2011

On the floor, sleeping

For the past week I have been in a hypersomnolent trance. I have come to realize that the word 'fatigue' doesn't do any justice to what I am experiencing.

Have you ever taken Benadryl or Gravol? Any medication which induces sleep that you just cannot fight? That's what I am feeling.

Last week, I was too sleepy to take care of myself or my animals. I packed up my bags and my pets and moved over to my mother's house for a few days until DH got back from his trip. Even with all of her health issues, she could at least walk the dogs. And I slept...and slept...and slept.

At one point, I went to the kitchen to talk to my mother. I was so tired I sat down on the floor. But I was too tired to sit, so I laid down...and fell asleep on her travertine tile.

I flip between hot and shivering, but my temperature is almost always 97.2 (not even normal, let alone fever).

This, my friends, is not normal.

Feb 13, 2011

Outsourcing Pregnancy?

So...a while back I went to see a high-risk obstetrician to consult on the possibility of pregnancy. It has been almost four years since I miscarried and my mid-thirties turned into my late-thirties.

Quick health review:
- 3 antidepressants (since major depression following miscarriage)
- factor V leiden
- hypothyroidism
- AMA (advanced maternal age)

The specialist told me that my psychiatrist had done me no favours in suggesting that we wait a year past the time when my depression stabilized, as AMA is the factor most likely to impact our ability to conceive.

DH was not thrilled about the prospect of another depressive episode, nor was he keen on the daily injections of Heparin. He proposed that we consider another option. One with no worries about my medications, no worries about blood clotting, no worries about delivery - hire a surrogate.

A surrogate? Really? Could we actually outsource pregnancy? The thought seemed more foreign that I could wrap my head around. I ran it past my mother (thinking she would be horrified) and she loved the idea.

I found a surrogate website and began reading about the ins and outs of this world and learning their vocabulary. I found out that I would be known as an IP - intended parent. The surrogate would be either for GS - gestational surrogacy, or TS - traditional style surrogacy. With a GS, the embryo has no genetic relationship to the surrogate, with traditional the egg of the surrogate is used, and is therefore her genetic child.

The laws in Canada about surrogacy are complex. Apparently it cannot be done for profit and must be altruistic. There are loopholes that allow IPs to compensate their surrogates for their expenses. To help manage the complexity, there are agencies that provide IPs with lawyers, contracts & potential surrogates....and I thought pregnancy would be challenging.

I still wasn't completely sold, but we decided to meet with the fertility clinic to discuss our options anyway.

The physician we met with was a breath of fresh air; she was blunt, direct and provided information without sugar-coating our situation.

I must look a little younger than I actually am**, because when she asked my age, her face fell in an instant. She went from an expression of hopefulness to one of "yeah, right" in a millisecond. Apparently late 30s is NOT the time to try conceiving.

Now I am fairly up to date on all of the statistics about age and risk, but I guess it hadn't truly been processed until this appointment. Apparently we have only have a one in five chance of having a healthy embryo in any cycle and a 50% chance of miscarriage using my eggs.

If we decided to use a donor egg (not allowed in Canada), the odds would be much, much higher. The doctor recommended finding a donor in her early twenties for optimum results. And even though I wasn't sure this was what I wanted, the odds being so stacked against us brought me to tears.

But the bad news wasn't over yet! Because of my history of depression and my blood clotting disorder, I am a BAD CANDIDATE for the fertility drugs used to produce more eggs in a cycle. Yup. I could clot and die or just sink into a depressive episode from which I may never make my way back to normal.

The doctor left to get some forms for blood tests and I burst into tears. My husband -being an overall-great-guy and a pragmatist- told me that this was exactly what he expected.

DH then took out his laptop computer and went to you tube to play me "Furry, Happy Monsters" by REM on Sesame Street. I assure you it is impossible to be sad with Michael Stipe singing to a group of monsters.

It appears then that having a baby of our own is out of the question; but if I am completely truthful with myself, I don't think I ever was ready to outsource pregnancy.

**this is due to botox, not my overall radiant health

Feb 5, 2011

Test Results...

For you wonderful folks who follow this blog, I'm sorry to have left you hanging on the outcome of my last doctor's appointment. The results are in and....

-drum roll-

*MRI was negative for demyelination = not MS.

I know I should be over the moon that I don't have MS, (and believe me, I really am happy not to have it), but that leaves me with No Diagnosis.

Or worse, the non-diagnosis of Fibromylagia - (which apparently means I am a bat-shit crazy with a personality disorder)

I couldn't write about this for a few days, because I mostly feel defeated. I feel ashamed of being sick with no objective indication of illness. I feel dismissed.

I don't know where to turn next. Do I just give up? Is this the way life is going to be forever?

Thanks to God for my wonderful husband (who loves me no matter how I wake up feeling each day), for my friends (who stick by me even when I cancel plans with great frequency), and for my mom (who checks in on me everyday hoping for good news...and buys me groceries when I am too ill to leave the house). I don't know how I would have survived the past few years without you all to count on.

* Actually, the reason the doctor didn't want to share the report in advance of our meeting was due to what she calls an 'incidental finding' of my cerebellar tonsils (WTF??) being 4mm longer than they should be. Apparently this is not something I should worry about. Who knew there were tonsils in the brain?

Jan 30, 2011

Dr. Who? Titles and Power in the Patient-Physician Relationship

I was raised to address people by their last names until invited to call them by their first names. In university, I always called my instructors "Professor" or "Doctor" unless invited to do otherwise.

In written correspondence, I refer to a person as Mr./Ms. /Mrs./Dr. (unless or until they sign their message with their first name, in which case I understand this to be an invitation to refer to them as such).

But I hate, hate, hate when physicians address me by my first name and introduce themselves as "Doctor". Immediately I bristle, knowing that they are setting up a power dynamic where they are privileging their role over mine. I know you're are a physician...I'm here to consult with you, if you told me your name, I would still be quite clear about the purpose of this encounter.

One of my favourite med-bloggers, Dr. Jessica Otte tackled this thorny issue a few months ago in a post "What's in a name? Doctors, titles and pretence" she tells readers that with patient introductions, she says: “Hi, I’m Dr. Otte but you can call me Jessica if you like." I would love it if my physician were to introduce herself to me this way. It makes her role clear, but is also attentive to the patient's comfort. It is unpretentious and sets a tone of shared power.

Whether it be respect, authority, closeness, familiarity or hierarchy, how one uses first names, last names and titles sets the tone of a relationship.

Dr. Jennifer Middleton, author of the blog The Singing Pen of Doctor Jen, took this topic up recently in a post "What ever happened to Doctor?"

Unlike most other businesses and professions, we physicians have a sacred contract with our patients. They allow us into the most private and intimate details of their lives. In return, we pledge to maintain stringent professional boundaries related to our behavior and give them the best of our intellect and compassion. Being addressed as "Doctor" is a constant reminder to me - and to everyone I interact with - of the oath I took to fulfill that pledge.

Please hold me accountable, and keep calling me "Doctor."

I think I understand where Dr. Middleton is coming from here, but I'm not sure I agree that a title is necessary to establish clear boundaries in a professional relationship. For example, my husband is lawyer and law professor; certainly his profession obliges him to maintain confidentiality and to be privy to intimate details of his client's lives. He holds two undergraduate degrees, three masters degrees and a doctorate and yet, he never uses an honorific with his clients. Despite being on a first-name basis, I don't for a moment think that the boundaries of his client relationships are unclear.

Similarly, my priest always introduces himself by his first name. He doesn't mind if people prefer to call him "Father", but in no way do I think that his sacred contract and requirement for confidentiality is diminished by forgoing the use of a title.

Dr. Synonymous responded on his blog to Dr. Middleton's post, saying: In the late 70's, we also had resident physicians who didn't want to be called "Doctor". It seemed that the "denial" of doctor "status" was one way to "power down" and not be threatening or aloof from patient "status".

Dr. Synonymous (also known as Dr. A Patrick Jonas) goes on to quote The Healer's Power, by Howard Brody, MD, PhD (1992): "To be compassionate in response to the suffering of the patient is therefore one of the most powerful things a physician can do: but this is possible only to the extent that the physician is willing to adopt a position of relative powerlessness, to acknowledge that the patient's suffering has incredible power over him and that he cannot remain unchanged in the face of it. This is a major irony of the physician-patient relationship, in which a sense both of one's own healing power and of one's necessary humility forms a synthesis of the apparent contradiction of power and powerlessness."

Dr. Jonas summarizes the meaning he takes from this quote, writing, "Some physicians may not feel ready for this type of struggle for professional development and don't want to fully accept the title of Doctor."

With all due respect to Dr. Jonas, I don't agree with this conclusion. While this may be true for some physicians, I think that the opposite could be true. Perhaps being on a first-name basis with patients can also be construed as a marker in professional development. It could demonstrate a sense of coming into one's self as a professional, whereby the physician trusts enough in their knowledge so as not to require the deference of a title in order to feel comfortable in their role.

The New York Times discussed this issue in 2009, Exam Room Rules: What's in a name? . Anne Marie Valinoti, MD struggles with this in her practice, but also raises an interesting issue of the use of titles between colleagues: "This got me thinking of how, in my own career, I have always been addressed as “Dr. Valinoti.” Freshly minted M.D.’s, some as young as 25, get a title of respect while seasoned nurses in the hospital are Betty, Kaye or Nancy.

I remembered the absurdity of this situation when, as an intern, I was addressing critical care nurses with decades of experience by their first names while they deferentially called me “Doctor.” These were women who had started their careers when I was still playing with Barbie dolls, yet where were their professional titles? Like most things in medical training, I got used to it, and it became second nature."

The comments to this article were fascinating. Some doctors insisting that they worked hard and deserved a title, to some not caring whatsoever. Patient comments were similarly diverse, some most comfortable with more formal introductions and others preferring first names.

One theme that stood out for me is that patients seem to prefer that their physicians use the same tone of formality (Mr./Ms./Mrs./Dr.) with their names as the physician uses with their own. Symmetry seems to be the key feature when it comes to introductions.

One last comment, I noticed (perhaps because I am on the path towards a PhD myself) that there was a certain tone of animosity in the NYT comments section from physicians who resent using titles for non-MD colleagues who also have access to the title 'doctor' (doctorate-level nurses, chiropractors, naturopaths, research PhDs).

Clearly this is a divisive topic. I'm curious how much time and discussion attention to power dynamics actually receives in medical education. Please feel free to weigh in your thoughts on titles...

In the meantime, you may call me Penelope.

Jan 25, 2011

Results Day

I am meeting with my specialist this afternoon to learn the results of the MRI and I am nervous.

At this point, I don't know which scares me more: actually getting a diagnosis or no diagnosis at all?

This will be my third specialist opinion. When I first met this physician, she asked me if all the tests came back negative, would I accept that there is "no diagnosis"? Or accept a diagnosis of "fibromyalgia"?

Not a chance.

I've read too many accounts of missed diagnosis to give up.

In fact, the first specialist I consulted missed my diagnosis of hypothyroidism. If I had taken her word that there was nothing wrong with me, I wouldn't be in school today.

Then again, it could be MS.

Either way, I wish it wish I knew in advance what to expect.

Jan 24, 2011

My Gluten-Free Adventure

I have a love affair with gluten products: toasty bagels, tasty crumpets, little bundles of mini-wheats are part of what gets me out of bed in the morning.

That's why I cringed when my Internal Medicine Specialist suggested that I try a gluten-free diet. While my blood tests did not indicate Celiac, my physician told me that many of her patients improve on a gluten-free diet, even if their blood tests are negative for the antibodies.

After fighting the idea of a diet overhaul over Christmas (who wants to miss out on cookies! pies! christmas pudding!), I decided last week that it was time to take the suggestion seriously.

I started off at the grocery store. We are fortunate to have a large store nearby that carries a large line of gluten-free products. Along with a mountain of fruits and vegetables, I bought "replacements" for all of the carbs I might miss:

- gluten free bagels
- gluten free crumpets
- gluten free bread
- gluten free pizza
- gluten free brownie mix
- gluten free frozen entrees

There! That wasn't too hard. Until I hit the checkout. My usual mid-week shop for fruit and bread comes to around $50, this week, my bill was $135!

But I'm determined, so I marched my groceries home and prepared to implement my new plan. I was about to put my $6.00 gluten free bread in the toaster when I came across a website telling me that I would risk contamination if I didn't get a toaster of my own. Okayyy, that's a little much, but I'm game. I dutifully wrapped my bread in tin foil and put it in the toaster oven, hoping that no gluten molecules would find their way into my foil packet of rice-flour goodness.

Next was the peanut butter issue. Apparently the gluten-free person cannot share a jar of PB with a gluten-eater in the house either. Alrighty then, good thing there is an extra jar in the cupboard!

My first bowl of gluten free cereal had the distinct aftertaste of sushi - not my idea of the "honey" flavour promised on the package. This might take a while to get used to...maybe after a while I'll forget how good my morning mini-wheats used to taste.

I am now five days into this diet today and - kind of - starting to get into the groove. Now I'm looking for more affordable ways to eat. This means that I am going to have to learn how to cook. My mother will be so proud.

I'm also amazed by how many products contain gluten. Makeup, juice, sauces, yogurt; you name it and it likely has gluten in it. There are whole websites devoted to naming the offending products.

Time will tell if this massive life change will improve my health; but hey, nothing else has worked so far, so - other than bread, cereal, and most everything else that I like to eat - what have I got to lose?

Jan 21, 2011

Medical Paternalism - A Rant

Last week I had an MRI as part of a work-up to rule out MS. Today I emailed my physician's office to request a copy of the MRI report in advance of my next appointment. (Having my information in advance helps to prepare me for the tone of the appointment and allows me to formulate my questions in advance. In other words, it is very important to me.)

"I'm sorry, but I will have to ask the doctor for permission to send this information to you and she won't be back until Tuesday. Thanks!"

This shouldn't come as a huge surprise, this is from the same office that declined to tell me my blood pressure, because it might confuse me.

You need permission to send me a copy? Why? This is MY information. This is an image of MY head. The results are about ME. What gives you the audacity to think its ok that you and your staff can see the results of my test and withhold it from me?

Perhaps there is concern that I will not understand the results? I am reasonably sure that if I were an MD, an MD's spouse, or even a medical student, this would not be happening. I am frustrated that one needs to be a part of the 'members only club' of physicians to be allowed access in advance of my appointment.

No, I don't want to be patient and wait. In fact, I don't want to be yours or anyone's "patient". I want to be your "client", and you, my service provider. And when I ask for my medical record, I don't want to ask for your permission.

Stop withholding information from me. Your actions are paternalistic and offensive.

Rant over.

Jan 18, 2011

My Mom: Treat as TIA

I wrote a few weeks ago that my mother experienced a stroke-like event that may have been a TIA or a migraine.

Despite completing a "bubble test" (to listen for a hole in her heart), and wearing a Holter monitor (to rule out fibrillation), neither test showed a clear diagnosis. We were surprised when the stroke specialist felt strongly that she had experienced TIAs, and not migraines (as was previously diagnosed).

Due to the serious nature of TIAs, my mother's physicians are choosing to treat her with blood thinning drugs to prevent clotting. (Both my mother and I have Factor V Leiden, a blood clotting disorder).

My poor mom, she is used to having great health. Blood tests every other day are on the menu for the next few weeks. It is a frightening diagnosis, but I am grateful that she is being treated with an abundance of caution.

Jan 13, 2011

Where's my IgM?

Back from holidays - what a glorious trip! I snorkelled with stingrays and spent as much time as possible outside in the shade enjoying the pool. What a difference a little health makes!

I returned home to some interesting blood lab results. My ANA is still 1:640, but my ENA is negative, ESR is negative and anti-dsDNA is negative. That's a whole lot of negativity!

But there was also something else missing...apparently my Immunoglobin M (IgM) is on the 'low side'. I'm not as up to date on immunology as I would like to be, but I think that means that something is up.

Oddly, my CK was elevated, which is weird because I hadn't been exercising before my test or doing anything else that should have affected the results.

Also, my MCH is high (which has been consistent for the past few years). My B12 and Folic Acid are ideal and I consume next-to-no alcohol, so that doesn't make a whole lot of sense either.

I really need to go to med school - if only to make sense of my own lab work!