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.

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.

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?)

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.

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.

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!

Merry Christmas

Dear Friends in the Blogisphere,

Merry Christmas to you all! I hope that the holidays and the New Year are full of good times and good health for you and your families.

Thanks for all the wonderful reading and the support you've all been this year. I will update soon, but I'm feeling better than I have in a long time.

Happy holidays!

Penelope