In the past 15 years of my chronic illness expedition, I have met some amazing individuals living with Fibromyalgia, a chronic health challenge that causes persistent and inconsistent pain throughout a person’s body, while leaving their appearance looking quite “fine.” Even though I live with and know more about lupus, fibro has shown to be a constant companion for many to face in addition to their lupus diagnosis. Sometimes, their diagnosis begins with fibro or they discover a relative somewhere within their family tree who has lived with it for years without knowing what to call it (as it was with my own mother). Whether the medical and research communities want to stand behind the connection or not, there are many of you who do.
One of the many things I’ve learned about the fibro community is that pain is a strong motivator. With lupus, pain is sometimes present or may be more present in our days than we would like it to be, but not one of the key symptoms associated with our illness. When someone lives with pain, it affects and changes us to seek out answers, information, resources, or alternatives at a level that we may not be naturally inclined to act. As someone living with lupus and looking just fine, it is easy for me to decide not to talk about my health. I can blend in without too much effort, keeping the internal chaos as invisible to myself as it is to the person standing in front of me. However, I started out with a great deal of pain, before I knew that lupus was ravaging my kidneys, and I know that I showed my pain in the way I attempted to walk, reach, sit, smile…live.
I have been granted an opportunity to meet with many local people and have become part of the strong Fibro community here in the Portland Metro area. If you are interested in meeting some of them, many are members of their Ning community that I have listed down in the right margin here under “MLWT Networks.” I receive emails from locals living with fibro (as well as worldwide) on a regular basis, more so than from people living with lupus. They speak about what they are looking for, what they are doing and how they are thriving in spite of their constant pain. Many are open about asking for help, even if it is a difficult thing to accept at times. They welcome visitors to their groups in order to ease the discomfort a new environment can create for many of us. The emotional wall seems much more flexible for these individuals and, I suspect, their life with pain moves them to keep connected to something or someone with hopes to mute their body’s hurtful signals to any degree possible.
Although my mother lives with, what she has been told by her doctor, “secondary fibromyalgia”, I still don’t ‘get it’ and I know I truly won’t ever fully understand what she goes through. I do, however, want to learn more (and hear more) about as many fibromyalgia experiences as possible, because I know I will be able to better appreciate the information I receive coming from the ‘trenches’ more than I will from a research article or medical/pharmaceutical presentation. I want to be here for my mom in a way that will actually acknowledge her unique experience and offer her the support that she needs, when she needs it.
To honor those many people living with fibro that I have met through MLWT, I will be hosting two book discussions in a row that focus on living with Fibromyalgia. The first book is FibroWHYalgia, by Sue Ingebretson, and our discussion on Shelfari.com will begin October 1st. To kick things off, Sue has offered a free, signed copy for the lucky winner. Even if you don’t get around to picking up a copy of the book right now, you can still join in on the discussion and we encourage you to do so. It’s a chance to have a conversation that is guided by the topics covered in the book and an opportunity to perhaps learn about additional resources that may be of help in your own fibro experience.
Here’s how you can get the FREE copy of Sue’s book for the discussion:
- The contest will run from today September 15th until 11:59 PM Pacific time, Friday, September 23rd.
- The winner will be selected in a random drawing on September 24th. I want to keep this give-a-way free of strings requiring you to do anything to win. However, since this is for our MLWT Book Discussion group, you will need to register a free account with Shelfari.com. It is a great place to meet others reading the books you are and MLWT isn’t the only group. Authors are also beginning to sponsor their own discussions, so it is worth the effort and a great way to keep up during the winter reading months.
- I would also like to add your email addresses to my new seasonal enewsletters (The MLWT Muse) that highlight wellness updates and resources to know more about, both local and outside ofOregon.
- I will contact the winner via email on September 24th, and they will have 48 hours to reply in order to claim their prize. (So be sure your email address is correct!) After 48 hours I will move on to another winner.
To enter this give-a-way:
- Sign up for the MLWT Mailing list (directly to your right on the MLWT website) and leave a comment below letting me know you’re signed up. Then,
- Sign up for the MLWT Book Discussion Group on Shelfari.com .
- If you are already registered for either or both of these, just leave a note in the comments here to enter your name!
Once the winner is chosen and has claimed their prize, Sue herself will contact them by email with her congratulations and get their mailing address for the prize copy. The winner should receive it in time before the MLWT discussion really picks up.
Best wishes to you all for the win and I’m looking forward to the upcoming discussion!
To learn more about Sue and her book, you can find her on Twitter (@SueInge), her Facebook fanpage , and her book’s website www.FibroWHYalgia.com . She is also an MLWT Guest writer and you can enter her name in the search field on my website to bring up posts that she has contributed so far.