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Monday, December 5, 2011

Question of the Week:
What Is Your Grown-Up Christmas Wish?

I have been listening to Christmas songs on Pandora radio lately to get myself into the holiday mood.  One song I keep hearing over and over is "My Grown-Up Christmas Wish."  That song got me thinking about what I really need this holiday season.

With my plan for the New Year in my sights, my grown-up Christmas wish this year is for courage and determination.

You see, I am embarking on a tough journey in 2012: treating my chronic Hepatitis C infection. To do this, I am going to need all the physical, mental and spiritual fortitude I can muster. I'll need lots of support too.

Treatment will be 24 weeks of weekly interferon injections and multiple daily doses of anti-viral pills--ribaviran twice a day and a direct acting antiviral (DAA) three times a day.  There are lots of potential side effects, from flu-like symptoms, fevers and chills, to nausea, fatigue, rash, irritability and even depression.  I already know that some of these side effects will make the symptoms of some of my pre-existing chronic illness worse and that worries me.  Plus treatment might be extended beyond 24 weeks depending the results of blood work taken at week twelve.

Then, once I am done, I'll need six months to recover, time I'll also spend waiting to see if the treatment was successful.

I tried doing treatment back in 2007, and three weeks in, I experienced so many side effects that I stopped.  Looking back on that horrible experience, I realized that I failed because I didn't have the support of a medical team that was actively addressing my side effects.  Since then, I've gone to great lengths to put together a team that I thank can help me get through Hep C treatment successfully. 


Thankfully I also discovered a new book written by Lucinda Porter, RN called Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C.  I read it over the weekend and plan to review it for you in-depth tomorrow.  Let me say that her book put my choice to treat my Hep C into a perspective that helps me let go of my fears and anxieties about treatment. 

As someone who is managing multiple chronic illnesses, I feel compelled to try and treat the one health condition that could possibly be cured: my chronic Hep C infection.  It's not going to be an easy fight, but I think it is my best shot to prevent some pretty scary complications down the road.  Plus I really hope that decreasing my chronic illness burden will have positive benefits in the long run.

I really need to do this.  The longer I wait, the harder it will be to get the outcome that I desire.  So really, I have nothing to lose trying treatment again...and everything to gain if I am successful.

So what about you?  What are you wishing for this holiday season?  Do you have a grown-up Christmas wish you'd like to share with me?

If you are a fellow ChronicBabe blogger, let me suggest that you write your own post about your holiday wish this week and submit it for the next edition of the ChronicBabe blog carnival by Friday, December 9. 

You can also leave me a comment here (please shoot me an email if Blogger is giving you any commenting problems) or head over to my favorite place, the Oh My Aches and Pains! Facebook page, to share your wish there. 

Here is my favorite version of My Grown-Up Christmas Wish by Amy Grant:







You can find Free From Hepatitis C: Your Complete Guide to Healing Hepatitis C at Amazon.com:




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Friday, December 2, 2011

A Friend Asks:
So, Why Do You Write?

The loneliest people in the world we writers are. Except that, while we are conversing and laughing with ourselves, we manage to shed our loneliness . . . to scatter it as we go along.
~"What a Life!" 1928; quoted by Fred Hobson in Mencken: A Life, Random House, 1994

A recent e-mail I received encouraged me to write a post on the subject of why I write.

Overcoming Writer's Block

Before I can talk about my motivation for writing and the benefits that I have received from it, I need to talk about the actual physical act of writing, because chronic illness doesn't make getting words onto paper or a computer screen easy for me.

I am plagued with constant pain that travels from my neck down my arms and into my hands. When I use my hands too much, the pain travels from my hands up my arms to my neck. It's quite a vicious circular cycle. This constant pain prevents me from using a pen and writing on paper for more than a few lines. It also prevents me from typing on a keyboard for more than the few minutes. Since this is the traditional way that writers practice their craft, the first hurdle to overcome in my pursuit of writing has been finding alternative ways to write.

Using a speech-to-text program, specifically the computer program Dragon NaturallySpeaking, has been the solution for me.

That said, there is something almost unnatural about speaking out loud to write. For starters, I am embarrassed to do it in front of other people and worry about being overheard while I am in the process of "writing." After all, in my mind, writing is about being quiet, not talking.

I've also had a really hard time disconnecting the use of my hands from writing. In the past, writing flowed from my brain out into my fingers; the greatest challenge was getting the words typed quickly enough as they spilled out of my thoughts. Now my writing comes out of my mouth and there is a censorship that happens along this route: a process we all engage in when we have a conversation with another person. It's been challenging to just let the words flow out of my mouth when I am "writing."

Of course there's also the issue of technology interfering with the writing process. Speech-to-text programs need to be trained, and even then they can't always figure out what you're saying. Occasionally, they go rogue and start typing sentences that makes absolutely no sense what-so-ever. On occasion, I've had to postpone my writing and turn my computer off because I couldn't get the technology to cooperate.

Shedding Loneliness

I admit I wasn't much of a writer before I became chronically ill. I mean, sure, I wrote a lot of reports and grant proposals as part of my job as a social work administrator. And I occasionally attempted to keep a personal journal. But the truth of the matter is I never really had the time to devote to writing in any meaningful way because I was so busy with so many other things. Which was really quite too bad, since I always had the inkling somewhere in the back of my mind that I would really like to try taking a stab at writing a book.

So how ironic is it that one of the true gifts that chronic illnesses has given me is copious amounts of time which I can apply to the pursuit of writing?

Granted, it took some time to figure out how I could physically write after I became chronically ill. Then once I got that down, the Universe nudged me in the direction of blogging through my friend Cyndi. Like me, she experienced that inkling to write but could never find the time between work and all the other things competing for her time. After a shared conversation about the topic, she suggested that a friendly competition might get us both started writing in earnest.

Hence was born the "Blog a Day in the Month of May" challenge in May of 2009.  And the rest, as they say, is history.

Over to the past two years, as I have consistently written and posted to my blog, I have succeeded in connecting with many other people living with chronic illness like me. The act of writing and then sharing my writing with the world has truly helped me shed some of my loneliness. In fact, writing my blog posts has become the focal point of my day during the "work" week. It has become so important to me that if I miss a day due to my illness or events beyond my control, I feel a little sad, lost and ungrounded.

I've enjoyed writing so much that I actually started writing a second blog called The Seated Gardener where I share my passion for container gardening, another gift given to me by chronic illness.  Not to mention all the blog carnivals I participate in, other sites I guest post at and the social media places I participate in related to my blogging efforts.

Beyond Chronic Illness

All writers have to start somewhere and often the easiest place to start is writing about yourself. Surprisingly, living with chronic illness gives me a lot of writing material. Now that I have an established writing routine, I rarely find myself at a loss for a topic to write about as my ongoing adventure in learning how to live my best life despite chronic illness somehow always presents me with new challenges, discoveries and situations that lend themselves to blogging.

But I am finding that the more I write, the more I find myself drawn to trying out other genres of writing too.

One of the writing challenges I have yet to accomplish is NaNoWriMo: National Novel Writing Month. NaNoWriMo challenges participants to write 50,000 words during the month of November and bills itself as a novel starting exercise that can help you write your first book. The official NaNoWriMo event, filled with pep talks, support groups, online forums and badges, takes place every November, although anyone can choose to complete the challenge any month during the year.

I attempted NaNoWriMo in 2009 but was hampered by my physical limitations to writing and my uncooperative technology. I'm not sure why I didn't attempted it in 2010. I chose not to try it this year since I was in the midst of getting carpal tunnel surgery done on both of my hands--one at a time of course.

What I do know is that since the seed of NaNoWriMo was planted in my brain in 2009, the Universe has deposited within me four intriguing science fiction story ideas that I feel compelled to explore and develop. What these ideas will turn into, I'm not quite sure.  But perhaps it is time for me to start living my life vicariously through characters of my creation! Then I could ditch the chronically ill body that is holding me back from experiencing real-life and explore a realm where chronic illness can't hold me back. (Well, at least not as much as it does in reality!)

So now that I have the interest and motivation, maybe it's time to figure out how to remove these new roadblocks to writing longer pieces of work. Perhaps the key to completing this challenge successfully is modifying it so it is more doable for me, which might mean writing 50,000 words in 60 to 90 days instead of 30.  Whatever it is, I'm going to figure it out and of course share it with you here on my blog.

So, why do I write?
  • To overcome the loneliness chronic illness imposes on my life.
  • To become more passionate about and engaged in my life.
  • To loosen the stranglehold chronic illness has on my life.

Thank you, my friend, for asking me this question.




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