I write about my adventures in learning how to live my best life despite chronic illnesses
and share those stories here with you so you can do the same.
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Wednesday, September 8, 2010

Fibromyalgia & the Occasional Glass of Whine

"I shall hear no whine before it's time"Image by TW Collins via Flickr
Yesterday I attempted to get back into my normal swing of things. I'm dealing with a major fibromyalgia flare-up and it sidelined me over the long Labor Day holiday weekend, resulting in a brief absence from my blog and my Twitter account.

As I jumped back onto Twitter to catch up with my friends, many who also live with chronic illnesses, I found it weirdly and reassuringly coincidental that several other people were sharing that they were having a rough time right now. They offered me support and I supported them too.
In the process of sharing and caring, I got inspired to write this post.

I know that many of my tweeps (friends on Twitter) use Twitter to vent. To the uninitiated, it might seems strange to use this very public forum to discuss how you really feel, but it works oddly well because the people that don't want to hear how you really feel just won't follow you. The people that do follow you on Twitter are the people who share similar experiences and are looking for people who understand what it is like to live with chronic illness.

So when my tweeps and I feel sick and flared-up, we dish, vent, complain and whine.

Which got me thinking about whining and wondering why whining has such a bad rap, especially since it is something we all do. In fact, I think that whining is one of those necessary steps along the path to making changes in my life. I often find it isn't until I really get in touch with how unhappy, disgusted, frustrated and upset I am about something that I find the courage, motivation and determination to change.

Plus, on those occasions when I am stuck in complaining mode, whining becomes a sign to those closest to me that it is time for some straight talk and a
kick in the butt.

I know that some healthy people might think whining is a tool used by sick people to annoy others, but I see the occasional whinefest as a legitimate way to express the harder, rougher and more difficult aspects of living each day with chronic illness. And in a lot of ways, going onto Twitter and choosing to whine to those who really "get it," instead of people who would rather not hear it, might just be one smart coping choice.

What do you think? Is it O.K. to indulge in an occasional whine to a sympathetic ear? Do you let your close friends call you on your stuff if you get too whiny? Does whining help you build up momentum to make changes?

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Thursday, September 2, 2010

Bits and Pieces About Fibromyalgia

An example of a breaking news intro graphicImage via Wikipedia
I signed up for Google Alerts on fibromyalgia news just to keep up-to-date on breaking developments. It's lead to some pretty interesting discoveries in the past few weeks and I wanted to share three of them here with you.

New Diagnostic Criteria

While I agree that the criteria used to diagnose someone with fibromyalgia could be improved, I am not sure that the latest effort from the American College of Rheumatology represent a step forward in this process. But rather than take my word for it, head over the the Fibromyalgia Network website, read the article Patients Weigh In on the New Diagnostic Criteria and click the link at the bottom of the page to Take the Survey. The survey takes you through the process of completing the new assessment form and gives you an opportunity to 1) leave feedback and 2) download a PDF document of the new criteria you can share with your doctor.

Yes, according to the new scale I still have fibromyalgia, but the questionnaire didn't included queries about all my symptoms. Plus I think it overlooked certain parts of my body affected by fibromyalgia.

It's Not Looking Good for Xyrem

The FDA discussed Xyrem about two weeks ago and the review panel expressed some concerns about safety. The panel members worried that the approval of Xyrem for the treatment of pain and sleep disorders in fibromyalgia might lead to the drug being used inappropriately. After all, Xyrem is a prescription version of the date rape drug GHB.

Interestingly, their concerns and my concerns are not the same. As I have discussed before in Xyrem: How Does This Make Sense?, I worry about being paralyzed in bed and unable to respond to an emergency like a fire or earthquake. I still think this treatment for fibromyalgia is akin to hitting a nail with a boulder--the whole approach seems like overkill.

Plus I found an interesting article from Devin Starlanyl about her experiences with Xyrem that points out some unexpected side effects.

News to Me

Finally, this most likely qualifies as old news, but the information was new to me.

Researchers found
using PET scans that the pain receptors in the brains of people with fibromyalgia appear occupied. These receptors being "in use" provides a scientific explanation for why pain medications are of little help to people living with fibromyalgia. Much like not being able to park a car in a space that is already occupied, pain drugs can't help if the targeted brain receptors aren't available.

What interesting news have your heard recently about fibromyalgia? Share it here with us in your comment.


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Wednesday, September 1, 2010

Wordless Wednesday: The Angel Courage

the angel courage(click on the image to read the story of Courage the angel)


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Tuesday, August 31, 2010

Please Show Amanda Some Love Today--She Is Getting a New Liver!

Amanda Goodwin
I saw a tweet from my blogging friend Amanda Goodwin last night. She finally got the call. A liver donor has been found for her! She is receiving her new liver today.

You can read her announcement on her blog.

I am asking everyone to visit her blog and flood her with lots of comment love today. Then please keep her in your thoughts and prayers as she and her family go through this journey together.

The surgery is just the start of her recovery process...

I visited her blog a few days ago and read the most wonderful post that she wrote about the gift of an angel figurine she received named Courage. That story really touched my heart and I think it will touch your heart too.

I really believe that her angel has come through for her today.

So you have your assignment for today: show Amanda some love through a comment on her blog, a prayer or the gift of a healing thought.

Then say a pray of thanks to her donor and their family. It is tragic and sad that this family lost their loved one, but let them be consoled in the knowledge that, in death, their loved one saved two lives (read Amanda's post for the details).

Finally, if you are able, please consider becoming an organ donor yourself. You can learn more at Donate Life America.


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