Friday, September 30, 2016

Photo Friday: Watchers

Today is the last day of #RABlog Week. Things have been crazy busy, so I haven't been able to do another post. I recommend you hop on over to the event page on Rick's website to check out the many amazing submissions. I certainly plan to do this over the next few days.

Thursday, September 29, 2016

Back to Work with Chronic Illness

Years ago, I was away from the job market for 10 years. A change in government meant I lost the job I had and it was very hard to find something else. After the big flare, my body prevented me from finding something else.

And then I found something that was perfect for me, both in terms of what I wanted to do, and in terms of accommodating my limitations.

In this week's post for HealthCentral, I share tips on how to get back to work with chronic illness.

"There are many reasons why a person with chronic illness may be absent from the workplace. It could be related to the chronic illness, or maybe to another life event, such as the birth of a child or taking care of a relative. Whatever the reason, now’s the time to get back to work. But how do you do that after an extended absence?

My story

I lost a much-loved job in equal opportunity — a change in government had deemphasized the type of work I did, and my contract wasn’t renewed. I couldn’t find work for a very long time and then I had the big flare, which made it physically impossible for me to work."

Read the rest of the post on HealthCentral.

Wednesday, September 28, 2016

#RABlog Week, Day 3: In Defense of Biologics

Today’s #RABlog Week prompt is Biologics can be scary. This is true and it has led to a lot of misperceptions about these kinds of medications. My goal today is to bust some myths about Biologics. Settle in with a cup of tea. To do this subject justice, I had to go a bit long.

Your doctor has talked to you about starting a biologic for your rheumatoid arthritis (RA), so you do the natural thing for anyone with an Internet connection: you ask Google. Maybe you also ask other people you know who have RA. And that’s when you see and hear some comments that scare the crap out of you. Such as: 

“Don’t take those drugs, they are poison.”

"I’d never put that in my body. I’m going all natural.”

“I went all natural and I’m in remission.” 

I believe these types of comments reflect a lack of understanding of not just the Biologics, but the disease they treat. 

A serious solution 
I’m not going to lie to you. Biologics are a serious medication. They have a black box warning, which means that some of the serious side effects can be fatal. Luckily, the serious side effects are also in the ‘rare’ category.

That doesn’t change the fact that these types of side effects are very serious. It doesn’t change the fact that Biologics are immunosuppressant drugs, which has the potential for a whole other list of consequences.

But they are not poison. If they were, the FDA wouldn’t have approved them and doctors wouldn’t prescribed them. And no, thousands of doctors all over the world are not in cahoots with pharmaceutical companies, mindlessly prescribing dangerous drugs so they can get money. Because that’s one of the stories out there, as well.

Biologics are a medication that is prescribed because in addition to the serious ones, they can also have quite miraculous consequences and more on that in a bit.

Medications — all medications — have two types of effects. The beneficial ones that successfully treat the disease for which there prescribed. They also have the potential for other effects that are not related to treating that disease. If you look of any medication, you will see a list of side effects divided into categories such as Common, Less Common, and Rare. If you look closely at that last category, you’ll be tempted to go stick your head in the sand for a couple of years.

Informed consent can be scary.via GIPHY

A serious problem 
Biologics were developed as a serious solution to a serious problem. Some rheumatologists consider RA to be a medical emergency. Once you start researching RA, you begin to see why. This is a systemic autoimmune disease. It doesn’t “just” affect the joints, it also affects other systems in your body, such as your vascular system, and internal organs.

Yikes, right? Hang in there — I’m almost done with the scary information. 

RA inflammation is nasty. Left to its own devices it eats the cartilage in your joints, causing deformities and intense pain. But that’s not enough for it. RA inflammation can also damage your internal organs. That’s why historically people with RA have had a 10-year shorter life expectancy than the general population. It’s called the mortality gap and it is largely due to the effect of RA inflammation on the cardiovascular system.

But what about those who went into remission by taking vitamins and eating a particular diet? I have three comments on that. One, there is no scientific evidence to show that RA can be cured, period. Two, there is no scientific evidence to show that diet and vitamins can cure RA. That said, there appears to be different types of RA, some of which may respond to diet. Does it affect symptoms or the underlying disease? We need more research to say for sure. And lastly, three: spontaneous remission does happen. Rarely, but it happens. So do periods of low disease activity — RA ebbs and flows.

From worst case to best case 
I’m the worst case scenario. I grew up in an era when there were no treatments for RA. Back then, the progression of the disease took you from walking and functioning to a wheelchair as inevitably as sunrise and sunset. I was 14 years old the last time I walked. I had bilateral hip replacements when I was 16. That was also when I got the power wheelchair that enabled me to leave the hospital bed in which I had spent the previous two years and go out and live my life.

These days, there are treatments. In fact, the development of new treatments have accelerated in the last 15 years or so. We have half a dozen non-biologic DMARDs (disease modifying antirheumatic drugs) and close to a dozen Biologics. The availability of treatment that have the potential to be extremely effective have caused a change in how RA is treated. No longer is it “go low and go slow,” which leaves the RA to feast upon your body. Now it’s early and aggressive.

And this is where the good news starts coming in. Now, despite still using a wheelchair, I’m the best case scenario. Because the meds I’m taking are working. 

The miracles 
Because of these treatments and the change in the approach to treatment, RA is now increasingly considered an invisible illness.

Mind-boggling. I don’t think you can truly know how miraculous this development is unless you grew up in a time when the prognosis was inevitable and daunting: damage, deformity, and disability.

These days, people are going into remission. Remission! And if they’re not going into remission, many have low enough disease activity that they can function close to normally.

Other good news: because of the Biologics, the mortality gap is shrinking. People with RA are living longer and healthier lives. I’m one of them. Eleven years ago, I had a huge flare that almost killed me.  I got funding for Biologics and for the first time in my life, my RA is under control.

Not everyone responds to the meds currently on the market. We need much more research to meet the need. Many more drugs are in development. There is hope. 

What about the risk? 
The Biologics do come with risks. Serious side effects, the consequences of being immunosuppressed, and the potential for developing certain kinds of cancer (although new research shows that this doesn’t include lymphoma).

Again: yikes!

But it’s important to know that these are risks, not certainties. Many people take Biologics for years with only manageable side effects and during that time, they are living their lives to the fullest.

Each one of us have to weigh the pros and cons and make the decision that is right for each of us. But I believe it is essential to make sure that your decision is not based in fear or only knowing half of the story. The purpose of informed consent is that you know the risks and potential consequences of the decisions you make. Taking the meds has a risk of potential nasty consequences. Not taking the meds has a certainty of nasty consequences.

Talk to your doctor about how big the risk is. Compare it to the other risks you take it every day. For instance, I bet you drove in a car today, despite the significant risk of being in an accident. Did you take a shower this morning? That carries a risk of falling and hitting your head. Did you kiss your beloved? You could have caught a nasty virus.

Life is full of risk. 

I chose to take the risks because I wanted to live, not merely exist. My best option for that was medication. And every day, I am grateful for the consequences: the ability to live my life.

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.