Saturday, October 22, 2016
Once a year for Halloween, we dress up and pretend to be someone else. But when you live with a chronic illness, the pretending happens every day, as we tried to act like everything's better than it is. And it can really mess with your life. This week on RAHealthCentral, I wrote about this pretending and share tips on what you can do to live authentically with chronic illness:
"Pretending to be someone you’re not is not just for Halloween when you have a chronic illness. It’s something we do every day, trying to put a better face on life and how we’re really feeling. We do it because of the stigma of chronic illness. We do it because a bit of daily denial can be a coping mechanism, allowing us to get through the day. And we do it because we want our lives to be about something other than just being sick.
The problem with pretending is that it can take over our lives. There is a fine line between putting on a smile so you can get through the day without explaining your chronic illness to every person you meet and denying your truth, even to yourself.
I did that — made a lifestyle of pretending that I was fine with a capital F. I minimized the amount pain I was in, pretended I didn’t need as much help as I actually did, and pushed myself to do as much as possible on my own, often ending up in a world of hurt because of it. Basically, I spent a lot of time trying to persuade others that despite the visible deformities and using a wheelchair, I was perfectly healthy and able-bodied.
In retrospect, that was probably a lost cause.
Read the full post with tips to stop pretending with chronic illness on HealthCentral.
Friday, October 21, 2016
Tuesday, October 18, 2016
Atticus O’Sullivan lives a mostly quiet life in Tempe, Arizona with Oberon, his Irish wolfhound. He runs an occult bookshop, hangs out with his friends, and his biggest problem is a cranky neighbour.
Well, and that he’s been hiding from Aenghus Óg, the Celtic god of love for well over a thousand years and that his closest friends are a werewolf and a vampire. Perhaps I forgot to mention that Atticus is a druid and 2000 years old, give or take a few years?
Oh, and that although the books take place in our world, there is also another very richly developed, as well as very hidden, world filled with supernatural beings, such as several pantheons of gods, some werewolf packs, and a lively vampire community.
But there is only one druid. All the rest are gone, most of them killed during Roman times during an extermination of sacred groves and druids masterminded by the vampires and executed by the Romans.
And that’s just the background story and the beginning of Hounded, the first book in The Iron Druid Chronicles, a series written by Kevin Hearne. So far, there are eight books with several novellas and an upcoming ninth book. I just discovered that that will be the last in the series and I’m very sad about it.
Atticus, Oberon, and their friends (and enemies) have kept me company throughout this summer of healing. I’ve read every one of the books currently available, alternating with tomes by other authors to cleanse my palate in between adventures.
Each book continues more or less where the previous one left off, although each is also a stand-alone story. The stories are wonderful, building nicely to a satisfying conclusion, even when that conclusion is pretty harrowing. Because that’s one of the best parts of these stories. Contrary to so many other series, there is real peril here for recurring characters. Not everyone gets out alive.
Characterization is also really good. Hearne has clearly spent a lot of time thinking about what being immortal and living for 2000 years would do to a person. Atticus is remarkably normal in many ways — he works hard at it — yet has an element of a lack of regard for consequences. Which would be natural after having lived that long. His actions gets him and his friends and allies into situations that don’t always end well. And that’s another great thing about the series. Consequences do happen and Atticus has to face them.
That might make the books sound very serious, but they aren’t. They have a wonderfully light tone, depicts some terrific adventures, with serious elements. And they are also very funny. One of my favourite characters is Oberon, Atticus’ wolfhound. Fully realized with the ability to speak with Atticus on the mental plane, Oberon is very, very funny.
No review of The Iron Druid Chronicles would be complete without spending some time gushing about the narrator, Luke Daniels. He is the perfect narrator for this series and over the course of the books he develops a superb level of comfort with the different characters. Each have a unique voice and tone that makes it easy to identify who is speaking. His Oberon voice is especially inspired and completely hilarious. I’m going to look out for more books narrated by this man. He is a brilliant narrator.
I think these books would be as enjoyable if you’re reading them in print format, but do yourself a favour and get the audiobooks. They are a perfect blend of excellent storytelling and a fantastic narration working together to create something more than the sum of their parts.
Monday, October 17, 2016
We live in an amazing time when there are more treatments for rheumatoid arthritis than ever before. Biologics have had a profound impact on the lives of people with RA and on the field of rheumatology. These drugs are expensive, though, and it can be an obstacle to treatment. Another obstacle is developing. My new post for RAHealthCentral discusses the news that pharmacy benefit managers are attempting to restrict access to these drugs:
"There are ten Biologics currently available to treat rheumatoid arthritis (RA). That does not mean you have access to all of them.
Insurance companies are famous for the obstacles they place in the way of our access to expensive drugs. For instance, they often use fail-first policies. This means that a number of less expensive medications have to be tried with unsatisfactory results before they will approve a Biologic. We live in an era when rheumatologists treat RA early and aggressively to maximize the chances of remission. But this type of policy leaves us at risk for developing damage while we try medications that may not be what our doctors believe is the best option.
But it’s about to get worse."
Read the rest of the post on how access to RA treatments is being restricted.
Friday, October 14, 2016
Wednesday, October 12, 2016
Unless you've been living under a rock, you know that there is an election coming in the US. We all have opinions about it, but that is not what my new post for HealthCentral is about. It's about the obstacles that people with chronic illness may face during the election process and what you can do to make sure your voice is heard:
"One month from now, one of the most beautiful things about democracy in action will happen. All over the nation, citizens will go to the polls and cast their vote. This will decide the next president of the United States, as well as a number of state and local government officials.
As a person with a chronic illness, you have some unique challenges as you prepare to cast your vote. Your chronic illness may be unpredictable or limit your mobility. This can affect your ability to attend town halls and other election campaign events, as well as voting on Election Day. A chronic illness may also affect how you vote."
Read the rest of the post on voting with a chronic illness.
Tuesday, October 11, 2016
I got a question on my Facebook page about how to practice self-care way as a blogger, community or Facebook group moderator or, group member. Sue said “I love my little group and mostly find it rewarding and supportive but at times I find it overwhelming.”
Being a chronic illness blogger or group moderator is a passion project. Connecting with the community of others like you, sharing support and information can be one of the most meaningful things you can do.
It also never stops. The Internet happens 24 hours a day, 365 days a year and there’s always more you can do to. But when you have a chronic illness, it’s already taking up a fair amount of your time. In fact, I have often argued that it’s a full-time job. And now you’re supposed to add all this online stuff?
No one ever talks about how exhausting it is. If you want to last and to continue loving what you do, it is essential to take care of yourself. Here are five tips for self-care when you are a chronic illness blogger or group
Posting regularly helps the people with whom you’re connecting know when they can expect to see you. But you don’t have to do it every day. Once or twice a week is fine for blog posts and a few times a day in your group and/or on social media to support the work you do.
And then start talking to people. Because regardless of all of the articles about how to be a social media machine, at its core it really is just about having conversations.
I have written before about how I feel I have found my tribe, the place I belong, in the online community. These kinds of conversation can be intoxicating and invigorating and before you know it, you are on Twitter at 1 AM. It’s wonderful to talk to your peeps, but if you don’t set some boundaries, you are going to wreck yourself.
So much of learning to manage your energy and live better with your chronic illness is about figuring out where your limits are and (most of the time) working within them. And this means setting boundaries for what you do. It can be hard to say no to spending time with friends or family, but you do. Because you have to.
But chatting on Facebook or Twitter, that’s easy, isn’t it? Well, yes and no. Yes, you can do it in your PJs lying on the couch with the dog on your stomach. But it is actually takes quite a lot of energy, as well. The constant nature of social media means you can end up in a situation where you never get any rest. Make sure that doesn’t happen by organizing your day. Decide how often you will be on social media and for how long. Set times when you are not online. Maybe even turn off your phone.
I know, that’s crazy talk. If you can’t make yourself turn it off, at least turn off social media notifications. You might be surprised how blissfully these for your life can get without the constant buzzing and beeping.
Automate & schedule
Whenever possible, schedule as much as you can. This enables you to a work ahead. You can write posts for your blog or social media when you have the energy and schedule them for publication days or even a week or two ahead. Then you can focus your energy on the conversations that are created because of some of these posts.
Pinned posts on Facebook or an automated Direct Message on Twitter can be great ways of saying welcome to new members or followers. Even want to include a mention of the fact that you have a chronic illness, too, and need to conserve your energy. Make a note to yourself to get in touch with them. Not immediately, sometime within the next week will be just fine.
You don’t have to do this alone. If you are a moderator or group admin, get people to help you. Find the people who offering solid information and support in the group and invite them to become more involved. Talk about alternating with being the lead so everyone who is in that supportive role gets some predictable time off. This is invaluable — it helps you get the rest you need so you can be fully engaged when it is your turn to moderate the group
If you are blogger, ask people to share their story or specific information in a guest post. Perhaps do the same for them. You will give each other a day off, and share your message with new people.
Spend time in real life
Step away from the computer on a regular basis. Put your phone down. Read a book, go for walk, spend some time with friends laughing and having a good meal. Time away from the screen is important for balance. And having an off-line life will also give you more to post about!
How do you take care of yourself when blogging or running a group?