Yesterday, I read an article in the paper in which the Weather Network is quoted as saying the winter weather will continue through the month of March. And I almost cried. As the winter from hell shows no sign of abating, I know I'm not the only one who's had it with this crap.
Herewith an antidote and reminder that we just have to hang in there for another couple of months and then the world will look like this.
Monday, March 03, 2014
In almost 1400 posts over the last 9 years, I have shared my life here on The Seated View. Many of those posts were about RA, fibromyalgia, chronic pain and disability and my thoughts and feelings about living within a reality that is sometimes difficult, sometimes funny and sometimes just… life. Some posts were explorations of social phenomena, others reviews, photos and yet others brought the intensely private into public view. Why did I decide to share this part of my life on the Internet? Why do I continue? This is my entry in the Partnership for Palliative Care blog carnival exploring why we blog or share in social media about our illnesses.
This blog carnival was prompted by the story of Lisa Boncheck Adams. More specifically, Bill and Emma Keller using Adams to make a point about terminal illness and those who choose to share the reality of what it’s like to live with an illness, in this case metastatic breast cancer. Much has been written about this story (here and here, for starters) and much as I’d love to jump on that particular bandwagon with a good rant, I won’t.
Well, not exactly.
For most of my life with RA and disability, I pretended to feel better than I actually did. I tried really hard to be normal — whatever “normal” is — and very few of my friends knew about the intimate details of RA and disability. I would rather not go somewhere then admit I needed help using the bathroom. I went to school full-time, when my illness would probably have done better if I’d done it part-time. I looked at myself and didn’t like what I saw. I was silent about this very important part of my life.
After my big flare nine years ago and finally finding a medication that worked, I decided to honour the miracle by changing myself. I set out to become the person I’d always wanted to be and to live with emotional honesty. Blogging was a tool for that, became the place where I wrote about illness, pain and disability, where I explored living in a way that told my story honestly, to others and myself. Here, I challenged myself to live thoughtfully, explore new horizons and to always tell my truth.
The truth, it turns out, wasn’t always pretty. Because life with a chronic illness and disability isn’t all heroism, soft hues and stirring soundtracks, as in the movies. Our lives have aspects which are challenging, raw and painful. Icky, one might say. There are days when you curl up in the sobbing heap, days of anger, profound sadness and learning the lesson for the 47th time that month. There are also moments of great joy, moments of such transcendent purity and beauty that you wonder how you got so lucky to have this life you do. And I have decided to share not just the latter, but the hard parts, too and what started out being an exercise for me, grew into something completely different.
In telling the story of my life, I began to deliberately shine a light on all of these things that are normally hidden behind the stereotype, the things we so often live through in isolation. There is a subtle — and sometimes not-so-subtle, thank you Mr. and Ms. Keller — pressure for us to be bravely stoic, to suffer in silence, to shut up about the icky things. And there is a power in finally no longer being silent. No longer hiding, pretending that your life is different than it really is. Telling it like it is gradually brings acceptance, makes you okay with who you are and from there, it’s not so very a long journey to actually liking who and what you are.
And it turns out that what I wrote was actually helpful for others in the same situation. When I wrote about what pain felt like, others sent the link to their friends and family to help them understand. When I wrote about those things that “should” be left unspoken — sex, suicide — I received comments and emails from people telling me it was powerful, it was their story and thanking me for bringing it out in the open. And I heard from others who don’t have chronic illness, pain or disability who told me that my honesty meant they understood better than before and that often, they share the feelings I wrote about, but from a different experience. And I am grateful to everyone who are part of this conversation.
Writing about your experience, whether it be chronic illness, parenting or your love of animals, builds bridges. Bridges to others who share your experience and in sharing, you build a community. Bridges to those who do not know what it’s like to live with the challenge you do and in sharing, you build awareness and connections to a wider community. Writing about your experience erases taboos, deflates stereotypes and breaks down barriers.
And that’s why I write about my RA, Fibro, chronic pain and disability.
Thursday, February 27, 2014
The problem with writing the first book in a series is that eventually, you have to write the second book. Especially as the best way to sell books is to write more books. When you would like your books to someday be your primary source of income so you don’t have to have quite so much of a day job (and therefore more time to write books), getting going is a good idea.
But I’ve had the hardest time doing that. And not just because it's hard to write when Lucy insists on "helping."
Initially, there was the quite understandable reveling in Having A Book Out and I spent a lot of time promoting the book on blog tours and the like. Whenever I talked about starting the next book, people who love me would do an intervention and tell me to enjoy Having a Book out. So I did.
Then I picked up another freelance gig at the start of last summer, fully knowing that this would take away any time I’d otherwise have to write the book. I was okay with that — by that time I’d realized I needed some non-book time and this exciting project was just what I needed.
And so it’s gone since then, one thing or another taking precedence over writing. They were all important, most of them something I had to do, some thrust upon me by various outside forces.
With one thing or another, although I do have an outline, I’ve actually only written 2 ½ chapters.
If I keep this up, the second book in the Your Life with Rheumatoid Arthritis series should come out somewhere around my 83rd birthday…
There are times when the itch to write is bad and I have hallucinations of disappearing for six months, holing up in a a cabin in the woods or by a lake with a dock or a house on the beach. They all have this in common: they are isolated and far away from other obligations. In these daydreams, I have weeks and months in front of me with no distractions and nothing to do but write and absorbing nature.
And there other times where I feel hopelessly overwhelmed with the thought of writing another 70,000 words. Where I look at my outline of 40 or so chapters and want to curl up in a ball at the thought of how much there is to do. I remember the last one. The last one was a massive project that took three years. And sure, I think I can write faster now (as long as I stop taking on other projects to distract me), but it’s still going to be a really long time doing a really big and hard thing.
I know the key is to narrow my focus, look only at one chapter at a time, but right now, I can only see the enormity of the task ahead lost in the forest, unable to see the individual trees. It’s feeding on itself, periods of procrastination interspersed with moments of looking at the book, only to whimper and slink off back into procrastination. Repeat ad nauseam.
I read this wonderful post by Kristen Lamb reminding me that sometimes, the quest for perfection can trip you up and maybe that’s what all of this is about. That I want each chapter to be perfect, to require less editing — perhaps even though editing? — so I can get to the point they aren’t finished writing and happy with my new baby. But it doesn’t happen that way, does it?
So. After reading Kristen’s post, I decided that the only way to get in the groove is to take a baby step every day. To go back to the beginning and write a paragraph or even just a sentence every day. To stop fretting over the 70,000 words that I haven’t yet written and start focusing on the 10 words I can write today.
Do you have any suggestions for getting off your arse and get going?
Tuesday, February 25, 2014
A few weeks ago, I wrote a post about the theory about why it’s important to stay home when you’resick. Today, I’ll be sharing the real life story of what happens when someone who has RA and is on an immunosuppressant gets “just a cold.”
Two weeks ago, I picked up a cold. It’s been going around in the agency that provides my attendant care and the staff had not been wearing masks. It was an annoying cold to them, but not something that flattened them sufficiently to stay away from work. My experience was very different.
It started slow for a few days, then arrived in full force, settling into both head and chest. I got a cough suppressant, but didn’t want to use it – I was coughing up gunk and knew it wouldn’t be a good idea to suppress that.
During the day, the incessant cough prevented me from doing much of anything. And it wasn’t just a regular cough. It was coughing fits, paroxysms of coughing that several times a day slammed my throat shut, making attempts at breathing more like a whistle. After two days of relentless coughing, every muscle in my back, shoulders and neck were screaming, my fibromyalgia in full flare. As were my elbows — moving my hands to my face to blow my nose four times an hour pushed both RA-damaged elbows to the limits of their mobility.
Friday, I went to see one of the partners in my doctor’s practice. He said my lungs were okay, then told me to keep up with the cough syrup and add my rescue inhaler. They did nothing.
Saturday morning, I got up after another night of not sleeping and by now, my voice was going, too. I could feel crud accumulating in my lungs, unmoving, sticky and clogging up my breathing. My brilliant sister told me about cough syrup with codeine and I limped off to a walk-in clinic. A young doctor, to whom I will forever be grateful, also prescribed a steroid inhaler, which would help break up the cough. Given how many times a day I was experiencing the pinhole breathing/whistling extravaganza, this seemed like an excellent idea.
Saturday night, I took a hit of the steroid inhaler. And spent the next half an hour sitting on the edge of my bed and coughing up gunk from my left lung, gradually clearing the area in the upper lobe that had been clogged. Then I took the dose of the new cough syrup and shortly thereafter told David “I am floating.” And then I finally slept.
Codeine is da bomb.
The next two days continued in the same vein. My nose was stuffed, which made me breathe through my mouth. This made my throat dry — I have gone through more lozenges than I thought existed — which exacerbated the coughing. Coughing made my nose stuffy, requiring three Kleenex to clear.
Yes, this is all very gross, but there’s a point to this story.
I continued using the steroid inhaler twice a day. Still, whatever had cleared after the morning dose, would accumulate again and I usually spent 3-4 hours every night trying to clear my lungs without much luck. Feeling your lungs fill up with a sticky mucus that is next-to-impossible to clear is pretty scary. I coughed and coughed and coughed, sounding like a car that won’t start. The laryngitis was in full swing and when I did try to talk, it made me cough more.
I knew that the steroid inhaler was the only thing keeping a bad case of pneumonia at bay and just barely at that.
I saw my own doctor a week ago and somehow, magically, still didn’t have pneumonia. She told me to use the steroid inhaler three or four times a day. This is when things started getting better, the more frequent use of the inhaler keeping the gunk in my lungs from solidifying. Well, I’ve continued to sound as if I’m sick, coughing, blowing my nose and my voice is, in the words of my dear friend Ken, “(hilariously) awful.” I’m still using the steroid inhaler, still taking the brilliant cough syrup and still have gunk in my lungs, but I’m on the mend. It’ll probably take another couple of weeks before I’m all the way to healthy again.
This experience has also meant skipping two or three doses of Humira. I’m keeping my fingers crossed that there’s enough of it in my system that my RA won’t rear its ugly head again.
Having RA means that when I got sick, it hits me harder and stays around for longer. Being immunosuppressed triples that impact. This time, it was the quick thinking of a young doctor that kept me from getting dangerously ill from “just a cold.”
If you know someone who lives with an autoimmune disease and is immunosuppressed, please help keep them healthy. Stay away when you’re sick. And if you have an autoimmune disease, are immunosuppressed and the people around you don’t understand why you ask them to stay away when they’re sick, use this post to tell them why they should.