Monday, September 26, 2016

#RABlog Week Day 1: Starting over

This week, I’ll be participating in RABlog Week, posting on particular prompts that were decided by a community survey. Learn more about RABlog Week and how you can participate. You can also follow the #RABlog Week hashtag on Twitter.

This year is my 50th anniversary of living with RA. Well, technically juvenile idiopathic arthritis, but my experience of it has been close enough to RA, especially as an adult, that this is the name I use for what I have.

Today’s prompt is about starting stories. I’ve told my story often, so I’m going to summarize it very briefly and then go off on a bit of a different interpretation. If you want to learn more about my journey with this illness, one of the best places to do so is my Live Bold feature on HealthCentral.

I was four years old when I felt the first symptoms, my left ankle swelling hugely. I was nine when I got my diagnosis, 12 when a systemic flare almost killed me, and 16 when I got my hips replaced, enabling me to sit again. I got a power wheelchair and left the hospital where I’d spent the previous two years lying in the bed. I was 42 when the disease flared hugely again, causing me to come closer to suicide than I’d ever had before and never want to again. I am grateful every day for the biologic medication that gave me a second chance at this life that I love. And I was 53 when earlier this year, a case of the flu turned so nasty that I almost died again.

If I were a cat, I’d be down about five lives by now.

This life of mine is shared with a serious chronic illness. One that has led to many watershed moments over the course of the last fifty years. It has also brought my life stuttering close to a halt more than once, in that significant way that gets you looking into the abyss, seeing a toothy grin looking back at you. And more than once, I’ve been given the gift of being able to back away from the abyss and starting over again.

RA takes and it takes. It chews away at your life, eroding your physical ability, emotional equanimity, and it breaks your heart over and over again.

RA also gives. It gives you, in the words of my dear friend Cathy, the ability to slow down and approach life in a different way. It gives you the chance to develop a deeper understanding and compassion for others. And it gives you the opportunity to reinvent yourself, to live authentically in a way that can otherwise be difficult in our fast-paced world.

That’s what happened to me. After Biologics gave me back my life, I wanted to live in a way that honoured this gift. So I set about becoming the person I’d always wanted to be. Part of that involved being honest about the impact of my chronic illness, both to myself and to others.

As I battled the instinct to hide my limits and the things I do to make it through the day — taking painkillers, the daily nap a.k.a. the Mandatory Rest Period, and so on — I discovered something amazing. Namely that pretending I was better than I actually was, as I had done for most of my life with this disease, required a tremendous amount of energy. Letting go of that pretense gave me more energy to do the things I wanted to do.

I also discovered that being authentic was liberating. No longer did I worry quite so much about the reactions of others, and if I did get a weird reaction, I learned to not take it on myself. Instead I placed it firmly where it belonged: back on that person who’d said something weird or sometimes more than slightly offensive.

I yam what I yam, as Popeye said. That’s easier said than done when what you “yam” is changed or marred by chronic illness. But I’ve come to realize that hiding who you are, who you truly are, is an expression of having internalized the stigma that because of your RA, you aren’t quite as good as able-bodied people.

And that just isn’t true.

Your life is your life. RA doesn’t change that. When I was a child, my parents told me I had a choice: I could laugh or I could cry. Needless to say, I chose laughing. I’m no dummy. It’s the same with your life. You can choose to focus on the legitimately awful thing that happened to you when you got RA. Or you can choose to see it as an opportunity to shed pretense, to start over. To live exuberantly and authentically, RA and all.


Friday, September 23, 2016

Disclosing Chronic Illness at Your Workplace

One of the benefits of RA increasingly being an invisible illness is that you have a choice about whether you want your employer and colleagues to know about it. Sometimes, it's necessary, though. In my new post for HealthCentral, I take a look at the issues around disclosure:

"You’ve just gotten a diagnosis of a chronic illness. You know you want to tell close family members and friends about it. But should you disclose at work?

Let's look more closely at the issue of being open about chronic illness in the workplace.

The legal side

Human rights and anti-discrimination laws exist in the United States and in other countries, due to a long history of discrimination against people in the workplace because they're "different." Those differences can revolve around race, disability, gender, sexual orientation — the list goes on.

In the U.S., the Americans with Disabilities Act (ADA) protects people with chronic illness and disability. It prohibits employers from firing or not hiring individuals with such conditions solely for the reason of their chronic illness or disability." 

Read the rest of my post about disclosing your chronic illness at work.

Photo Friday: Bullethole

Wednesday, September 21, 2016

Shortcuts, Traveling, and Loss

Alcatraz, 1992
At some point in the ICU, I had a transcendent experience. Buzzing with excitement, I waited for The Boy to arrive for his daily visit and then told him all about it. That as soon as I was better, the first major adventure we were going to have was to go to Giraffe Manor.

Do you know about Giraffe Manor? If not, you simply must click that link. It’s a hotel in Kenya that’s has a herd of domesticated giraffes wandering about the grounds. Giraffes that stick their heads through the windows and steal your breakfast! 

I’ve wanted to be a game warden in Africa ever since I read Born Free: A Lioness of Two Worlds as a little girl, but for now it’s fairly obvious that this job option is going to have to wait until my next life. The photo safari, too, because the savanna isn’t too accessible. But there it is, Giraffe Manor, and it is at the very least partially accessible!

So, anyway. The reason that we were going there was because I’d discovered a shortcut. Yes, lying on my rear end in the ICU, I had found a shortcut requiring us to only drive for a few hours instead of flying for fourteen. And I could easily see me building up enough strength to withstand a couple of hours in a van with the help of some heavy painkillers.

You see, I haven’t travelled for a very long time. I used to travel quite often, both before we came to Canada and after. And then about 20 years ago, that stopped. I didn’t have the money for it or know anyone who could go with me. And then after my big flare, I couldn’t anymore.

Well, I like to say that I can’t travel “at the moment.” It’s less final. And you never know what will happen in the future, right?

My body is so wrecked that I can’t sit in something other than my power chair, precluding transferring into anything but a first-class seat on a plane (and who has the money for that?). Given how much trouble I’ve had finding a new bed/mattress, I don’t want to think about the pain I’d experienced in a hotel bed. And then there’s the food allergies, which could make travelling a little unnerving.

 It took me two years to build up enough stamina and strength to last year travel in a van for 40 minutes when I went to see wheelchair rugby at the ParaPan Am Games. And these days, I’m working on building my strength back up so I can go to the Toronto Zoo and go nuts with my camera.

I miss travelling. I have dreams of places I want to go, a fantasy list of places I’ll be visiting when my “temporary” inability to travel resolves. And I use the term fantasy advisedly, because I know that’s what it is. To say that I’m okay with it is a big statement. Rather, I’ve accepted it. Travelling is very likely not something that’s going to happen until that next life I mentioned. Hence my excitement at having found the shortcut to Kenya. It was a couple of days before I realized that this was a medication-induced dream.

I’m still really disappointed about that.

Instead of planning my own trip, I let others be my proxy. I follow travelling accounts on Instagram, and watch YouTube videos from all over the world. And part of me travels with my friends when they hop on a plane and go to different countries and I make them tell me all about it.

And that’s enough. I make it be enough.

And then September 15 happened. My dear friend Ken went to Iceland at the beginning of this month and despite not being big on recording his adventures photographically, he’s posted a lot of pictures from the trip. Which made me want to go to Iceland very, very much. But again: not very accessible.

On the 15th, he went from Iceland to Denmark.
I am so very happy that my friend will get to see where I’m from. I love that he’s going to taste the food, get to know the people, smell the ocean, and immerse himself in my culture.

And I am so very desperately sad that I don’t get to do it with him. Because we’ve talked about that for years — seeing Denmark together. And my body had conniptions and it became impossible. He’s going to bring me back Danish salted licorice, which is very exciting. Really, I can handle this.

That is, until I saw a wonderful photo of him with my oldest sister-friend in the world, AB. And I wasn’t in it and it wasn’t because I was the one behind the camera.

I haven’t cried because of something I couldn’t do for a very long time. Because there is no point. It doesn’t change anything, only makes my nose stuffy, my eyes red, and all of me feeling general crappy. I know the theory of “a good cry,” but they are never good for me.

But that day, I cried.

You can think you’re fine, spend years knowing that you have come to accept the many losses that rheumatoid arthritis imposes upon you. And then, out of the blue, the searing pain pops up its nasty little head and you have to grieve it all over again.

Tuesday, September 20, 2016

Dealing with Side Effects and Workplace Accommodations

That's a bit of a weird combo, huh? It's been a busy months, so I thought I'd lump together my last two posts for HealthCentral.

The first is about the emotional impact of having side effects from RA meds:

"When our doctors talk about starting another drug for our rheumatoid arthritis (RA), one of the first things many of us do is research the side effects. Looking at that list can be unnerving, but ultimately when we take the meds, we may have to live with manageable side effects. We may discuss ways of minimizing the side effects with our doctors, but otherwise we find ways of moving on.

But no one ever talks about the emotional aspect of having these side effects. We asked our Facebook community to share their thoughts about the emotional impact of side effects. Some of these stories will appear throughout this post."

Read the rest of the post on coping with the emotional impact of side effects.

This month on HealthCentral's RA site, we are especially talking about working with RA and other types of chronic illness. Did you know that you are entitled to workplace accommodation under the Americans with Disabilities Act? 

"Working can be physically demanding when you have a chronic illness like rheumatoid arthritis (RA). As a person with a chronic illness or disability, you are entitled to workplace accommodations under the Americans with Disabilities Act (ADA). Accommodations are adjustments to the way you work so you can do your job. In other words, changing how you work, but not the goal. These types of adjustments can involve equipment or flexibility in how you work, or both."

Learn more about workplace accommodations and RA in my new slideshow.

Friday, September 16, 2016

Photo Friday: Sugar Freighter

Sugar Beach is a working beach. It's right next to the Redpath sugar factory, where they transform raw sugar into the refined stuff. And if you get there at just the right time, you can see the freighters coming in, loaded with Caribbean sugar and ready to unload.

Wednesday, September 14, 2016

Please Endorse Me in the Wegohealth Health Activists Awards!

I'm honoured that members of the community nominated me in the 5th Annual WEGOHealth Health Activist Awards. Being nominated for any award is always special, but when it's your peeps who do so, it means that much more.

I'm nominated in two categories: Health Activist Hero and, believe it or not, Lifetime Achievement. That last one tickles me to no end. Thanks so much to Annette for the nomination, in which she said:

"Lene has written a book called Your Life With RA and is almost done her 2nd book. She is active on Twitter, Facebook and her blog, and is also lead writer at HealthCentral. Not bad for a woman in a wheelchair since her teens."
I'd love if you'd endorse me.

New Creaky and Tipsy Collection Raises Awareness about Arthritis

I love my job for very many reasons. One of them is that I get to interview a lot of interesting people. The latest is Michael Kuleva, the man behind the fashion label Tumbler and Tipsy. His new Spring/Summer 2017 collection is entitled Creaky and Tipsy and raises awareness about arthritis. You see, Michael has lived with RA for several years and he has chosen, but kept it private. Now he's making a public in the best possible way.

"Michael Kuluva wants to change the world, one sweatshirt at a time.

When Michael retired from professional figure skating to become a fashion designer, the 33-year-old never imagined combining his rheumatoid arthritis (RA) with his label Tumbler and Tipsy to raise awareness about the disease.

Creaky and Tipsy, his Spring/Summer runway collection for New York Fashion Week, is presented by CreakyJoints, the arthritis advocacy organization, on September 13, 2016. The new collection uses playful designs to illustrate the impact of RA and celebrate the goal of living successfully with the disease." 

Read my profile of Michael and his new Creaky and Tipsy collection on HealthCentral.

Tuesday, September 13, 2016

Don't Sleep Your Life Away with Chronic Fatigue

Well, hello brainfog! It's sort of ironic that a post about being tired was published just of the time when I was pretty tired and subsequently pretty forgetful. Because I forgot to post it here!

Anyway! Say hello to my post about chronic fatigue for Mango Health in August. A bit late:

"Ah, fatigue. My old friend. Well, that’s not exactly true — I’d prefer to kick it to the curb, but it sticks around like a leech, draining me of vitality. If you have a chronic illness, you know what I mean. 

Even if you don’t, you’ve probably still experienced low energy levels at one point or another. Think back to the last time you were sick with the flu, for instance, and how exhausting it was to walk a few steps to the bathroom. That’s the kind of tired those of us with chronic fatigue experience every day.

I have rheumatoid arthritis (RA) and fibromyalgia, both known for coming with a healthy dollop of fatigue. You might say that I have a double whammy of exhaustion. I’ve been tired for so long that I don’t remember what it feels like to have normal levels of energy." 

You can read the rest of the post on the Mango Health blog.

High Anxiety and Jumping in the Deep End

“Relax,” he said.

“Hi!” I replied. “Have you met me? I am not a relaxed person.”

I have lived with anxiety since I was a child. My first memory of being really anxious was the first day of Grade 1. I remember the red dress I was wearing. I remember being one of only two students who could read the sign with their name on it on one of the small desks. And I remember being on the verge of throwing up all morning. Because anxiety always hits my stomach.

Part of the problem is that I have a vivid imagination and it occasionally veers towards catastrophizing. Another reason is having lived with an unpredictably capricious disease for fifty years. Never knowing how you’re going to feel tomorrow, or if you’re going into the hospital, or if the damned RA is about to do a clog dance on your joints makes for a great deal of uncertainty in life.

And it could be argued that we all have a great deal of uncertainty in our lives, but my rebuttal is this: when you are a generally healthy person, your illusion (a bit of an oxymoron) that everything will be fine is a lot more solid. You have days and months and years of waking up feeling more or less like you did when you went to bed. Some people have never unexpectedly had to leave everything they knew to go into a hospital filled with mean people. Because that’s how a child’s mind interprets medical tests and needles and not getting tucked in by her mom at night.

I got some counselling a decade or so ago. It wasn’t the first time I had counselling, but this one really worked. Cognitive-behavioural therapy was the one that taught me to talk myself down when I spin into a worry spiral. And everything was fine for a while.

And then six months ago, I woke up in the ICU with a tracheostomy.

Thankfully, happy pills were de rigueur in the ICU, but not so much once I got to the regular ward. And that was when things started getting unnerving.

Not being able to talk and being left largely alone with only a call button that sometimes didn’t get answered for quite a while was not reassuring. Having a trach and being attached to an oxygen hose wasn’t fun, but at least it was a guarantee you could breathe. Once I started weaning off the trach, I learned that every single step of the process was engineered for anxiety.

There was going without the oxygen, residents rooting around in my throat with no anaesthetic (not as awful as it sounds), learning to eat again and my swallowing muscles not being in tiptop shape. Going home after feeling safe(ish) was worrisome. The Boy leaving after that first week to let me fly on my own was scary.

At some point in the process, I developed a bit of a mantra.

Sooner or later you have to jump in the deep end.

It is my philosophy of dealing with what scares me distilled into eleven words. Don’t get me wrong, there’s a fair bit of flailing before I get there, but eventually the only way to not have anxiety being in control is to stop running, turn around, and face it.

In the novel Dune it’s phrased more poetically. This is the Litany Against Fear:

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain

I’ve written before about adapting that first line — “I will not fear” works better for me. It reflects the act of will it is to beat back the anxiety, to turn around and face the monster, and to deliberately walk towards it, forcing it back.

Were Frank Herbert (the author of Dune) still alive, I’d also take issue with him about there being nothing when the fear is gone. Every time I turn around to face my fear, there is most certainly something left. Not of the fear, but of the courage it took to face it and force it back. It is like a small smooth pebble shining in the darkness. And because there is a reminder of that determination in so many places within me, I have faith in myself that I can do it again. It never gets less scary, but I know I can do it and I know how to do it.

 But I digress.

At every new step in the trach weaning process, I would freak out for a while and then eventually say — writing it down, mouthing it at David, or, when I got my voice back, doing so out loud — my mantra.

Sooner or later, you have to jump in the deep end.

Unless you prefer living your life curled into a fetal position and gibbering in a corner, there is no other way. At some point, you have to take a deep breath and jump. All the while hoping your faith that everything will be alright is based in something real.

And every time it turns out okay, another small pebble appears and joins the others, showing the long path out of the darkness.