Thursday, August 20, 2015

Broken, Not Bitter. An Author's Life with RSI (and TOS)

Writers can't write when their computers disable them. My story of how Thoracic Outlet Syndrome and Repetitive Strain injuries stole my excellent nursing job and years of pursuing my writing career is on The Creative Penn blog today. If you depend on a computer to get through your day please read how you can prevent life-changing injuries.

Monday, July 20, 2015

My Life is Not About I Can't. It's About I Can. Reflections on Living and Writing with TOS and other RSI

July is Disability Pride Month. 

I don't spend much time on this blog because I've moved on from those dark days of pain, despair, and hopelessness that limited my abilities, stole parts of my life, and denied my dreams for years. Disability is a place I no longer want to visit, although it defines my life and makes me who I am. Each day I move forward and make the most of what I can do. Since it's been a while since I last posted to this blog, I'd like to share a little bit about what I've been up to and how I manage to do it. My message: Never give up. Even a little bit can be a lot. This blog post originally appeared on The Balanced Writer.

Respect Your Limitations ~ Live Your Dreams

photo by Edward Samuel via Dollar Photo Club
Ask any writer and she’ll tell you it’s difficult to manage writing projects while balancing life’s more immediate responsibilities: parenting, marriage, family, friends, a job. When I started this writing life my biggest issue was finding time to write. I worked as a nurse, had a young child, a husband, a home, all of the above. I wrote when the opportunity arose, often after everyone else went to sleep. It was slow going, but I didn’t care. I knew I’d finish the book someday.  

Then something happened that I never expected, and it left me unable to write for years. An inappropriate computer work station at my job left me with thoracic outlet syndrome, carpal tunnel syndrome, bursitis, tendinitis, headaches, and chronic musculoskeletal and nerve pain. All of this led to three surgeries and years of physical and occupational therapy. Yet despite all of the medical care, my chronic pain issues continue to require some level of management every day.

Needless to say, this makes it difficult for me to achieve my goals as a writer, but with these injuries came something I had longed for: plenty of time to write, because the job became history and my new occupation was to get well. What irony. Yet I am unwilling to allow my disabilities to stop me from pursuing my goals, and proceed at my own pace, heeding the words of my very wise doctor: “Respect your limitations.” This requires a delicate balancing act. I often feel like I walk a tightrope, one day in perfect harmony with the rope and the next day teetering on its edge.

Writing with this type of disability involves a variety of tools, devices, and strategies. For example, I rotate my writing between a PC, laptop, and iPhone. Sometimes I skip the keyboard and use pen and paper. I also use Dragon Dictation, an excellent tool.

I manage almost all of my social media via my iPhone. It is indispensable, allows me to take advantage of small chunks of time, and helps me accomplish more than I ever would if I relied solely on a PC or laptop. I’ve used it to write sections of my books, emails and letters, my never-ending to-do lists, and endless research. Automated programs like Hoot Suite and Tweetdeck are also useful in coordinating my posts and tweets.

Daily physical care of my injuries (which flare easily and frequently) involves topical and oral pain relievers, heat and/or ice, and hand splints. Periods of rest and avoidance of keyboarding are mandatory. Aquasize classes twice a week help keep me flexible. Massage therapy and chiropractic are often used modalities.

When on a healing break from writing I read, studying the writing process and learning more about publishing and marketing. I also indulge in novels in a variety of genres.

Five years ago I was able to return to work two days a week. I don’t write on work days and I don’t beat myself up if I’m unable to write for several days after a work day because of a flare-up (my job, unfortunately, requires computer use.)

These are just some of the ways I manage to balance my physical disabilities and my writing life.

A common “rule” for writers is to write everyday. This isn’t possible for me, and so I don’t. Some might say I’m not a writer because I don’t work every day. I disagree. I work when I’m able to – physically - and when that’s not possible I do what I must in order to recover from any overuse so I can scratch out another page or two and slowly work my way to The End.

My advice to anyone who uses a keyboard for any significant length of time is to always be aware of your posture; sit up, don’t slump. Take frequent rest breaks. Listen to your body. If you feel any pain, stop and take a moment to stretch. Muscles, ligaments and nerves can easily become injured from overuse and need tender loving care. These injuries can take years to heal, and some may not heal at all. Often, surgery is required, and is no guarantee of freedom from pain and return to full function. For more information read this.

My story has a happy ending: I’ve learned to manage my disability to the point where I am able to pursue writing at my own very slow, but slowly productive, pace. In April of 2013, I succeeded at publishing my debut novel, Blue Hydrangeas, an Alzheimer’s love story, in paperback, ebook, and audiobook. I’m working on a second novel, Swim Season. I have this blog, a Facebook page, Twitter, and Pinterest presence. I teach classes on how to publish your own book. My writing dream is alive!

Sunday, November 17, 2013

Dreams Can Come True - You're Reading One

It's been a while since I last posted on my TOS journey.  Much has happened recently, in spite of my TOS, and I've been focused on that instead. 
I published my first novel, "Blue Hydrangeas" on Kindle back in April and in paperback in September.  This was a project started in 2002, years before my TOS and other repetitive strain injuries made it nearly impossible for me to pursue writing as any kind of career or hobby. 
The manuscript languished on my hard drive, waiting for better days.  Occasionally, I'd open it up and tinker with it, refining the prose, tightening the story, preparing for publication, etc.  In May of 2012, a friend suggested I publish on Kindle, and I figured, why not?  It took me almost a year to publish, but I did it and to glowing reviews. 
Seems as soon as the digital version went live readers were asking for a paperback, and so I managed to put that together, too, which turned out to be a much more difficult task and impossible to complete without a little help.  So, due to these two milestones in my life - achievements I thought I'd never see - I've neglected this blog. 
The best I can offer my readers is a little hope, and some encouragement that TOS and repetitive strain injuries can be managed and the pain can be controlled enough to bring us to a point where we can go on living and achieve our goals. 
Publishing this book has opened a new door for me.  The last seven years have been fraught with disappointment and frustration over the fact that I could not pursue my dream of becoming a published author.  I had tried the traditional route before becoming disabled and failed to gain any support.  I could not even consider the possiblity of starting that process all over again - the research, the letter writing, the waiting - with an uncertain outcome.
But, as I went through the process of learning how to live with my injuries, the publishing world changed.  Independent publishing became more acceptable and more achievable.  When I reentered the arena, I had a new avenue in which to pursue my  dream, one that I could travel at my own pace.
I am in complete control of my project, and while that is scary it is also necessary, because like so many others with repetitive strain injuries I am an overachiever who pushes herself well beyond her limits.  With someone else directing my progress this could be disastrous, but with myself at the helm I am able to steer a safe and steady course, avoiding flare ups and preventing myself from crippling myself in the process.   
Sometimes we need patience and acceptance in treating these disorders, allowing our bodies to heal and conditions to arrange themselves to best suit us and our new abilities.  Situations change. Attitudes adjust.  While we are healing, the world moves on, waiting for us to come back and start living again.

Wednesday, August 7, 2013

It's All About the Stretch

At last, scientific evidence of what I and a number of the alternative health professionals I've worked with have known all along: it's all about the stretch.  More specifically, it's all about connective tissue.

"Connective tissue joins your thigh to your calf; your hand to your arm; your breastbone to your clavicle. As you move, it allows your muscles to glide past one another. It acts like a net suspending your organs and a high-tech adhesive holding your cells in place while relaying messages between them. Connective tissue is one of the most integral components of the human machine. Indeed, one could draw a line between any two points of the body via a path of connective tissue. This network is so extensive and ubiquitous that if we were to lose every organ, muscle, bone, nerve, and blood vessel in our bodies, we would still maintain the same shape: our  'connective-tissue body.'"

Increasing evidence shows a link between chronic pain and connective tissue, although this has not been well studied in the past.  In a recent article published in The Scientist, Helene M. Langevin, MD (quoted above) discusses the relationship between pain, connective tissue and acupuncture.  I was told long ago that my pain issues were due to "bunched up connective tissue" and "myofascial pain syndrome."  The only real relief  I've gotten is from the smoothing out of these tissues through manual manipulation and massage.  Acupuncture helps, too.  So it seems we were on the right track after all.

Thursday, July 4, 2013

Independence (From Pain) Day

Funny thing about TOS: when I feel bad I don't like to talk about it.  Who wants to hear about another's aches & pains, or how many pain pills they took today, or how they couldn't do what they wanted to because they hurt so much?  On the flip side, when I'm feeling really good I don't want to talk about that either, because I'm afraid I'll jinx myself and start the cycle all over again.  Alas, this TOS life is complex.  Yet, I will admit that for the last two or three days I have been feeling wonderful, with little pain and functioning like a "normal" person, or at least my "normal," before TOS and my other repetitive strain injuries railroaded my life.  No simple feat, these pain-free days.  They follow a series of alternative therapies and remedies mixed in with some mainstream medical magic: acupuncture and soft-tissue reprocessing from the Pain Whisperer, Tom Chi; a 45-minute all-over body massage by the wonderful Connie Wehmeyer at Subtle Energies; a trial of Curaphen, a pain relief health supplement by Euromedica; a cortisone shot in my right shoulder; weaning away from Cymbalta, an anti-depressant used to alleviate chronic muskuloskeletal pain; an Aquasize class at the Y; lots of ice to elbows, ankles, and shoulder; Topricin pain cream; and plenty of rest and sleep.  It is not a quick or easy job to manage pain.  In fact, it's rather time-consuming and round-the-clock.  Disability is not fun for anyone, especially me because I feel I have so much to offer and so much to do and be, and as you may have surmised it can get expensive.  Insurance does not cover any of the alternative therapies, and what mainstream medical treatments they do cover have to earn their approval.  Sometimes it's frustrating trying to find a system that works.  Then there are times when all the pieces fall wonderfully together and some sort of pain nirvana is achieved, which is where I am today.  Whatever I'm doing, it's working for now, and I'm grateful.  Happy Independence Day! 

Friday, May 17, 2013

Perfect TOS anthem

This is one of my favorite Third Day songs, and it's reverberating in my head lately as I go about doing the work of publishing and promoting my book, at the risk of exacerbating my pain issues.  I need to slow down.

Saturday, June 9, 2012

My Pain Diary

One of the characteristics that chronic pain sufferers share is the willingness to try anything within reason to eliminate, relieve, or manage  their pain. This may lead to an eclectic collection of over the counter and prescription medications, some or none of which may be effective; pain relieving rubs, creams, oils, and gels of dubious effect; and gadgets and gizmos that may or may not  live up to their manufacturers' claims.

I confess, I have my share of pain pills, preparations, and pain relief tools, the most recent of which is an iPhone app called My Pain Diary: Chronic Pain Management, which is about the most helpful app I own. It's super easy to use, and works just like its developer says it should.  Let me tell you more about it.

Developed by a man named Damon, who lives with RSD/CRPS (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome), the award-winning My Pain Diary is completely customizable and allows you to keep track of several pain conditions at once. Even better, you create your own list of conditions rather than pick from a pre-selected list. You also create your own lists of:
  •  trigger factors
  •  adjectives that describe your particular pain
  •  the specific parts of your body affected
  •  the remedies you use to gain relief 
Tracking the intensity of pain is easy, either by using numbers (0-10) or faces (emoticons). 

To track even more information, you can add notes at the end of each entry.

Like pictures? You can include them in your entries.

And, if you suspect the weather may be a catalyst for pain, you can keep track of it, too.

The app also lets you graph your data, which allows you to analyze your pain history and look for common patterns.

You can  also create a written report, which can be shared with your doctor and other pain management practitioners via email or print.

All this for $1.99.

I could go on with more features and benefits, but I'll let you look into for yourself. My Pain Diary:Chronic Pain Management