Wednesday, December 24, 2014

Monday, December 22, 2014

The Tragedy of Fibro: Truth or Hyperbole

In my last appointment with my rheumatologist, we discussed how most of the pain I have is related not to active RA (thank you, Humira!), but rather RA damage and fibromyalgia. And then she said something that’s stuck in my head since:

“That’s the tragedy of Fibro. If someone has RA or lupus, we can treat it. We can’t do much about fibromyalgia.”


Instinctively, I recoiled from the concept. It’s a really big word, a word I’d normally apply to devastating events in the news, such as the Ebola outbreak, the Holocaust, or the Australian woman who killed all her kids. Those are tragedies. My Fibro? Sure, I’d rather be without it, but it’s not on the same scale.

Is it?

I thought about it. I can see how, from a doctor’s point of view, an untreatable condition that causes high levels of chronic pain, preventing your patient from living their life to the fullest could be considered a tragedy. Doctors, after all, really like to fix things. Their goal is for you to be healthy and have a “normal” life.

And then I thought some more. I thought about how I finally, after decades of living with RA, found a medication that worked. It has not reversed the damage I have, but the misery of active RA is held at bay by this wonderful drug. And just when that miracle happen, Fibro came along to mess with my ability to take full advantage of my new life.

Fibro determines what underwear I can wear, how I sit, how far I can move, how heavy my cat can be. It interferes with my work life, my social life, and my sex life. It prevents me from using any scented products, requires me to gas off electronics, photographic prints, and carpeting in another location for weeks before they can enter my apartment, mandates a late afternoon lie-down, and stops me from getting a tattoo. It causes my pain levels to randomly and quickly go from tolerable to the kind of pain that has you sitting and rocking. It means that any minuscule change to my wheelchair — for instance, something as simple as my footrest slipping a millimetre or two — triggers extreme pain in the rest of my body. It means I can no longer go on a ride as a passenger in a car, use my manual chair, visit friends in their homes, dance, travel to other countries, hold and read a regular book… And the list goes on.

I still believe ‘tragedy’ is an awfully big word, but the more I thought about it, the more I began to agree with my rheumatologist. This condition is pretty awful. Okay, I won’t modify it.

Fibro sucks. 

Wait, that’s not honest, either. Fibro has stolen a big part of my life.

The problem with admitting the true impact of Fibro is that it leads me down the road to the if onlys. If only I could still travel, if only I could get through the day without a nap, if only I could colour my hair, if only I could be comfortable in my wheelchair, if only my life were easier. Looking at what I don’t have, what I can’t do, what I’ve lost, is devastating and depressing. Looking in to this abyss is dangerous — it takes your peace of mind, your joy, your soul. It sucks you dry and leaves you an empty husk of regret.

Instead, I focus on what I can do and how I can mitigate the impact of Fibro. The nap, the pain killers, the ultrasound — they all reduce the pain levels, make it easier, help me live around Fibro instead of in the depth of it. I turn the focus and instead of regretting that I have to use them, I am thankful that I have these tools that can help me get my pain to tolerable levels so I can live my life to the best of my ability.

At the end of the day, I don’t have a choice about having Fibro, RA, and a disability. But I have a choice about where I live, where I spend my days, to what I will grant my attention. And I refuse to live in a tragedy, because my life is about so much more than these diseases. 

I choose to make my life about joy and love and laughter. And there are times where the Fibro, the RA, the pain, the limitations, make the joy, the love, and the laughter shine more brightly, lighting up my world and pushing back the darkness.

I’ve made my choice. What is yours?

Friday, December 19, 2014

#TBT Courtesy of Donny Osmond

I was out on the town yesterday, a mutual Christmas present between David’s sister and myself. We went to see Donny and Marie: Christmas in Toronto. Yes, the Donny and Marie with the last name of Osmond.

From the varying reactions we had when we shared our plans, it’s obvious that this is not to everyone’s taste. Sure, the show was a bit Vegas, something that wouldn’t be noticed in Vegas, but is noticeable here in the frozen North. But it was also absolutely wonderful. Both showed that they more than deserve their reputation for professionalism and careers spanning 50 years each. I had forgotten how beautiful both their voices are. They also know how to entertain. There were trips down memory lane,  there were duets and solos, songs from each of their many Broadway roles and Marie absolutely killed in a beautiful rendition of How Great Thou Art. But that was in the second act. The first was mostly about getting us warmed up with familiar songs.

We were in between songs, the anticipation rising in the darkened theatre, when the shape of a man in a suit appeared next to me. My first thought was that this didn’t look like the usher who’d been there up to that point. Then the man reached out his hand to shake mine, asked me if I was having fun, and I realized it was Donny Osmond. Then he moved down the stairs, singing and shaking people’s hands and I sat with a tingling hand and a huge grin on my face.

Donny Osmond and I had a moment! I may never wash that hand again…

Donny was my first celebrity crush.  I was 11, he was 16, but the age difference didn’t matter. That year, he got me through the hardest three months of my young life.

I had been in the hospital before, but in September 1973, I was admitted to a rehab hospital on the Danish coast. I’ve written about it before, but not in detail. Decades later, the memories have remained too painful.

The children’s ward in this rehab hospital was run like the orphanage in Oliver Twist. I cried constantly for the first three weeks, then I realized it didn’t change anything and I stopped crying. It was so far from home that my mother could only visit once a week, on Wednesdays, although I did get to go home for 48 hours on weekends. I loved Friday and Saturday was my favourite. Sundays, though, were spent counting down the hours and minutes until we had to leave for the long drive north.
The days of the week were long, even though they were filled with activities like school, physiotherapy, occupational therapy, pool therapy, meals (terrible food), and every afternoon, the entire ward rested for two hours, starting at 3 PM and lasting until dinner arrived at 5. This happened on our stomachs. There were no options, you had to lie on your stomach. In retrospect, there was a pretty good medical reason for that — it kept juvenile arthritis hips from contracting — but I’m pretty sure it was also to give the staff a break.

I’d often spend those two hours with Donny. I didn’t yet have an Osmond album — the tape player and my first Osmond tape happened four months later, as a gifts to me on my sister’s christening. I did have a picture of him that I got out some preteen magazine. I’d lie on my stomach, Donny propped up against the bars of the headboard of my hospital bed, and I’d dream. I’m not going to lie — it was at times a bit swooney, but mostly it was about going somewhere else in my head with someone I liked a whole lot. What did we do in those daydreams? Mostly just talk and be together, away from this hospital that felt like a prison. Away from the reality of juvenile arthritis. Away from pain, medical tests, injections, and having no control.

Since then, Donny’s always had a special place in my heart. Even during the years when I was temporarily too cool to like his music much. That phase didn’t last long, though. I gave in to being an unrepentant and lifelong fan after seeing him in Joseph and the Technicolor Dreamcoat

But then, my relationship with Donny was never much about the music. It was about feeling safe, about having someone to chase away the loneliness of being a little girl with a painful chronic illness. It was about friendship.

Last night, it felt as if for a brief moment, I saw my friend again. And somewhere deep inside of me, my 11-year-old self smiled and the circle closed.

Maybe next time, we’ll get to have dinner and catch up. A lot has happened in the last 40 years.

Tuesday, December 16, 2014

Peace in the Mid-Region

I had forgotten about acidophilus.

But I should start at the beginning. Which was my not-really heart attack in July, caused by an extra special flaring of GERD. Several factors contributed to this, including stress and the best gingersnaps I’ve ever had (and will now never have again) among them. The chief trigger, though, appeared to be my body developing an intolerance to meloxicam.

This was not good news, as next to Vioxx, meloxicam is the most effective NSAID I’ve used in a very long time. Not only did the deal with pain related to 40+ years of RA damage, but it also had a good effect on my Fibro. I tried to do without an anti-inflammatory for a while, but it very quickly became obvious that this was a Very Bad Idea indeed.

So, now what?

Due to a previously developed intolerance, I can’t take anything that ends in -profen, excluding an entire subclass of NSAIDs. So I tried naproxen. Which is a good anti-inflammatory, but it burns the crap out of your stomach.

Fast forward several months to late November. I was still on naproxen, which together with Humira, allowed me to have a really intense schedule with an equally intense workload, but also left me popping over-the-counter Zantac like they were mints. Nothing worked.

And then I had a conversation with my mother. Her bad hip had her dosing up on some heavy-duty painkillers and she subsequently wasn’t happy in the mid-region. I reminded her of how acidophilus can be a wonderful balm for opioid side effects, such as your stomach trying to eat itself and being rather blocked (if you know what I mean).

Amazingly, it only took me week or so before the light bulb went off and I realized that the advice I’d given my mother could also apply to me.

Some days are blonder than others.

In my defence, I had stopped taking acidophilus earlier this year, due to my body deciding it was intensely sensitive to everything. Although I had some in my fridge (it’s a staple, really), out of sight had meant completely and totally out of mind.

In case my body was still as hysterical as a supermodel who hasn’t had her lettuce leaf, I started with half a tablet. The next day, I took a whole tablet.

Four days after I started, my stomach had calmed down and my Zantac popping had been reduced by two thirds. The side effects are still there, but they are now entirely tolerable.

And yes, I know I wrote a chapter in Your Life with Rheumatoid Arthritis that includes mention of acidophilus. I know I’ve written posts about it for HealthCentral and that it’s one of the first things I mention to people who have bad gastrointestinal side effects from RA meds. But somehow, when it came to me spending 24 hours a day with a giant hole in my stomach, it never entered my mind.

This might be a good time for someone to smack me.

Although I’ve been told by the naturopath that acidophilus doesn’t have any side effects (except loose stools if you’re taking too much), I would be remiss if I didn’t recommend that you discuss this with your doctor before taking it.