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

No, Really. Stay Home.

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. 

Monday, February 17, 2014

Your Life with RA is One Year Old!

Today is the first anniversary of The Book being published! (Well, actually yesterday was, but I’ve been sick so that’s a bit of a delay).

Most of my life, I’ve dreamed of having a book with my name on it. Not inside the cover, as a mark of ownership. No, the dream was the kind of book that has the name on the cover proclaiming “I wrote this!”

When I decided to create a five-year plan that would make the dream a reality, I didn’t expect to get there ahead of time. Being able to publish a book I was proud of was one of the most important moments in my life and the thrill still hasn’t worn off. Every now and again, I get out a copy of the paperback and pet it a for a bit while smiling like an idiot.

I bet everyone who has written a book does that.

(crickets…) No? Maybe it’s just me.

Usually, though, having a book with your name on it is not the whole story. Once you send your baby out into the world, you hope that it will find a home among people who will like it. You hope that the idea you had while you spent hours in years in front of the computer will blossom into something real. My idea of Your Life with Rheumatoid Arthritis was that it would be a friend and a mentor that could help people live well with RA. And I am overwhelmed that it actually seems to have become just that for many who have read it. I’m touched by the review and emails that tell me this little book of mine helped someone find their way to a better place with RA.

There are two aspects to the hopes you have for your creation. One is the love of the work, the hope that others will read it and find it useful or entertaining. That is the most meaningful thing of it all. But in all honesty, but the other is financial. Well, sort of. Most people who are driven to write do so with the hope that someday, they’ll be able to make a living from it. Most authors don’t dream of ridiculous fame of the J.K. Rowlings or Stephen Kings, but of the kind of career where it is your job to write books. A time when you can get up in the morning and start writing your book (or tearing out your hair about your book), rather than squeezing it into evenings and weekends. It’s less about your books making you money, then them allowing you to write more of them.

A year ago when my book first saw the bright light of day, my goal was to sell 1000 copies by the end of the year. For a new author in a highly specialized genre, it was a somewhat ambitious goal, but one that I thought was attainable. When the numbers reached 600 in August or thereabouts, The Boy admitted that he’d mentally prepared to comfort me when I didn’t reach my goal, but now thought he probably wouldn’t have to. And he didn’t. Your Life with Rheumatoid Arthritis sold its 1000th copy on December 19!

Can I make a living from it? Not quite yet, but I have paid bills from the proceeds, including cover design and editing of my second book, 7 Facets: A Meditation on Pain, released in September. The publishing of which was just as big a thrill as with the first one.

I’ve also used the book to give back to a cause that’s important to me. In August, I held a fundraiser, donating 50% of every copies sold over two week period to Show Us Your Hands!. Being able to use the book to support Show Us Your Hands!’s mission of uniting and inspiring the inflammatory arthritis community was very meaningful. I plan to do it again.

So, what’s next? Book II in the Your Life with Rheumatoid Arthritis series has an outline and a few chapters of the first draft completed. Writing it is being squeezed into evenings and weekends.

It’s been a whirlwind of the year. I’ve made new friends, learned an astonishing amount about indie publishing, have become a better writer and, I think, a better person. And it is because of all of you who’ve hosted my blog tour stops, all of you who’ve bought the book. You are the reason that I can make a new five-year plan of finishing the Your Life with Rheumatoid Arthritis series. And you are the reason that I’m living my dream.

Thank you from the bottom of my heart.