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!

Holiday

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?

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!

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!

Apathy

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?

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?

*sigh...*

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.