You may remember, I was quite excited when Alltop created a page for the top fibromyalgia news.  Well, consider me thrilled.  Recently, a reader brought to my attention the fact that My Life with Fibro has been added to two additional sites as a recommended resource for fibrofolks.

• Masters in Health Care – 50 Great Blogs for Fibromyalgia Support
  • says folks should read My Life with Fibro “for lessons in how chronic pain can lead to some surprising self-awareness and insight”
  • made me blush with their sweet summary
  • includes many other (49, to be exact) sites you should check out
• The Daily Reviewer – Top Fibromyalgia Blogs
  • is quite similar to Alltop
  • features links to recent articles from each of the featured blogs

Thank you for your continued support and contributions.  I feel much like I did this night, when I waxed all sentimental.  I am humbled by the compliment paid to me by Masters in Health Care.  As I alluded to here and here, my primary goal when I started My Life with Fibro was to bring folks with fibromyalgia together and encourage them to learn from each other. I hoped to raise morale by raising awareness.

My goals remain unchanged.

What are your goals?  Why do you blog?  Why do you tweet?  If you don’t mind me asking, why do you read My Life with Fibro?   What more could I do for you?

I am compiling a list of questions folks have sent me regarding all things Mayo Clinic.  If you have one to add to the list, leave a comment or, if you’re more comfortable, email me kate at mylifewithfibro dot com.  I will post the answers in the next week or so.

8 Things I look Forward to

1. Monday Night Dinners
2. Weekends with family
3. Yardwork
4. Acambaro Fridays
5. Saturday Morning HGTV
6. Church
7. Walt Disney World
8. Our wonderful mattress, each night… and now

8 Things I Did Yesterday

1. Church
2. 3.5 hour nap (Seriously!)
3. Laundry
4. birthday call to Grandma J with Daniel, and Mom, and Dad
5. admired the garden and the deck of the Douglas
6. watered my herbs
7. caught up on blogs
8. updated my iBank

8 Things I Wish I Could Do

1. live long enough to accomplish my goals
2. be a patient advocate for fibrofolks, especially fibroyouth
3. finish my book(s)
4. sleep, like a “normal” person or operate on <5 hours sleep
5. spend time with family
6. attend BlogHer and TedMed
7. 100 push ups (almost there!)
8. meet my Twitter friends and fibrfolk friends

8 Shows I Watch (on DVR)

1. American Idol
2. Anthony Bourdain: No Reservations*
3. Bones
4. Glenn Beck*
5. Lie to Me
6. Mark & Olly: Living with the Tribes*
7. MythBusters
8. in-season dance show (ie: DWTS or SYTYCD)
   *I do not watch these shows regularly.  But sometimes during dinner or on the weekends Daniel and I will indulge.

If you’ve done something like this, comment with a link and I’ll be sure to read it.  I enjoy getting to know you and I will feel much less silly if I’m not alone in admitting I actually watch eight television shows.

I am off to bed.  I look forward to your links.

Last night I expressed concern relating to Fibromyalgia Awareness Day.  Tonight I will address said concern and share what’s been on my mind of late.

After reading many posts relating to today, I am reassured.  The bulk of pieces I found were uplifting, honest, and educational.  I am consistently impressed by the strength of the chronic pain community, and grateful for my fibrofolk friends.  I am proud to be a part of a community which is proactively taking steps to inform those unaffected by chronic pain and other invisible illnesses about…

Wait.

Of what are we working to inform them?  For what do we wish to raise awareness?

This sounds like a harsh question, but it’s had me doing some serious introspection over the last few weeks.  And I believe, if we can’t answer it selflessly, we have no need for Fibromyalgia Awareness Day.

Do we want someone to feel sorry for us?  Or do we want someone to understand fibromyalgia?

Are we concerned people think we are crazy and/or weak?  Or do we wish they knew fibromyalgia is an explanation, not an excuse?

Can I honestly define the purpose of an awareness day?  Or can I simply determine my interpretation?

Am I completely missing the point?

No.

I am, however, hoping the positive energy I’ve seen on the blogs today sticks with us as we go throughout the rest of the week, month, and year.  I hope we can share it with fibrofolks who are struggling, caught in a flare, or feeling lonely.  And, as I mentioned on Twitter today, I pray we set a high standard and don’t lead others to think fibro is an excuse for, or result of, laziness.

I hope we recognize it is our responsibility to help others understand fibromyalgia; we need to provide (and/or seize) opportunities for education, instead of simply complaining about symptoms.  And, when confronted by someone close to us (or otherwise) who doesn’t “believe” in fibromyalgia, I wish us the ability to calmly say “You’re right.  Fibromyalgia might not exist.  But, it doesn’t matter.  The symptoms do.”

Thank you for your powerful example of strength and honesty.

Come back Thursday for my meaning of today.  And now, whatever your interpretation of the meaning of Fibromyalgia Awareness Day, please share it… along with a link to your post.

I’m not convinced we are doing the right things, for the right reasons.  In fact, I worry we are missing the point.

I know worrying usually proves worthless.  And I hope this is no different.

No matter what, I thank you for your support and encouragement.  Thank you for helping me feel human.  Thank you for understanding the bizarre things only fibrofolks can.  Thank you for challenging me to push my limits and to recognize when I need assistance.

G’night!  I can’t wait to read what you have to share.

Well, how is that for a rambling entrance? Do I sound as tired as I look? But, that’s me. And I’ve put off this post long enough. I have picked up my compy, with the intention of publishing a post, no less than thirty times over the last two weeks. Each time I’ve wandered off to enjoy our awesome view at Disney’s Animal Kingdom Lodge, or fallen asleep, or taken a shower, or gone to bed, or switched laundry loads, or caught up on your blog in my Google Reader, or hit up Etsy, or stalked facebook friends, or brushed up on my relationship with my Rebel, or watched Daniel type, or talked on the phone, or negotiated interest rates for our credit cards, or cooked dinner, or updated my Goodreads, or taken my medicine, or gone to the doctor, or worked, or taken a nap, or gone to a birthday party, or… avoided you all together.

Let me explain.

We left for Florida the afternoon of Friday, March 20. Saturday was our best friend’s wedding… and we arrived to the wedding with a dead camera at the hotel, a dead camera in my purse, my cell phone dead in my purse, Dan’s phone dead at the hotel, and Dan had to borrow a tie from… drum roll… the groom. Yeah. We were a wreck. All this can only be topped by us forgetting to pick up my medicine from the pharmacy before we left town. Thank you to Walmart for transferring my prescription and having it ready for me in Orlando (in a super-nifty recyclable drawer-type thing).

During our first 24 hours in Florida it became apparent that our vacation came at the perfect time. My poor Daniel was nigh unto exhaustion and I was starving to death for time with him. And time to play.

I don’t know if it’s because I’m an only child, or because I’m a sentimental fool, or because I have a vibrant imagination, or because I am Kate, and Kate likes happy things… but I love Disney. Seriously. I’ll admit it. Tonight I looked up the Tarzan and Camp Rock soundtracks. No purchases… but still. I spent 3 minutes iTunes-ing Disney! And yesterday I had the Carousel of Progress song stuck in my head. And two days ago I woke up singing the Haunted Mansion song.

Anyway, we were saved by the trip. And, for the first time, I experienced what I call a “grown up vacation.” The sort that should include a recovery period. And maybe even a recovery patch to assist with the return to real life. My vacation was so useful that, when I tried to remember my drive to work (during Expedition Everest) my mind was blank. Totally blank. Can we say success?!

I now know why people love to travel with their sweeties. I mean, I always enjoy being with Daniel, but never before have I had a whole week of Daniel. No college. No work. No homework. No articles. Just loads (though never enough) time to talk about life, politics, education, religion, peace, joy, work, goals, travel, family, friends, fears, plans, people, and such. We spent two hours one evening on a bench in front of China at Epcot just chatting it up. Those two hours are among my favorite with Daniel. Ever.

On the flip side, I’ve never before experienced returning to work after a dream vacation like this. My last real vacation was nearly two years ago, and I’d only been working at my job for two weeks, so it didn’t feel real until after my vacation (so we won’t count that). I’m surprised how strange it has been to get back to work and our other responsibilities. But Daniel and I have prayed to be able to handle the adjustment and we have been doing very well. In fact, we’ve been a happy and efficient pair. Hooray for successful vacations!

If you haven’t taken one recently, I suggest you do. You’d me amazed how much you can do while being frugal. I find vacations are a super-motivator for saving money and reducing spend. I also find anticipating the trip is half the fun. But it’s dangerous if you’re not careful… no one wants to be so busy looking to the future that they forget to enjoy the present. And it’s dangerous if you overdo it. Be careful with your fibromyalgia or chronic pain condition. A vacation is only as good as its lasting benefits. And pain may be lasting but it sure isn’t a benefit.

I will close this post by saying I am sorry for my absence. I appreciate your support as I struggle with feeling as though I’ve neglected you. I feel a bit guilty. I always dislike the blogs that post rarely and use every post apologizing for writing rarely. And here I am. Doing that. Please accept my apology. I have my upcoming posting schedule planned and I’m taking requests. Although I don’t promise when I’ll get to them, I can promise I will schedule them and start my research. Thank you for your support. I look forward to your ideas.

PS

During the vacation I got after myself about dropping the ball on a goal of mine. But, rest assured, I finally started something big. And one day I’ll tell you more about. But, in the mean time, I’m here for you. What can I do?

I always seem to be pondering an issue, product, or theory and I often think of questions I’d like to ask my doctor (or chiropractor).  I trust their opinions above any other medical field worker I’ve met (and I, like you, have met a small army of them), so on the way to my appointments I always make a mental note of my discussion topics (a habit my mom helped me develop to get the most out of the dozens of appointments we went through trying to get a diagnosis). Despite these efforts, if I go to an appointment alone, I neglect to remember my questions upon entering the exam room.

So, there I sat in Dr. Arkins exam room, all excited about the form and how it prompted me for additional questions.  And in all the excitement I chased off all memories of questions.  Awful timing.  A few trigger memories finally led me to remember a few questions and I jotted them down.

After handing the paper back to the nurse I felt a bit self-conscious.  My questions were extremely varied and had exactly nothing to do with the purpose of my appointment.  I mean, seriously.  I will spare you the uninteresting details (which I’d have to make up) and get to the one I know you’re all interested in.  I simply wrote “mattress.”  Yep.  Not even a question.  Just a one word reminder for when the doctor came in.  And when Dr. Arkins came in armed with the questionnaire and my file he was ready to discuss everything I’d written down.  Even the oneword “question.”

He asked if I was looking into a new mattress.  I said something along the lines of “Well, more like dreaming about one.  But I am curious if you think it’s worth saving up for a memory foam mattress.”  This led to a very rapid discussion in which he expressed disbelief that I didn’t already have a non-spring matress, offered to write a letter prescribing a memoryfoam or Tempur-Pedic mattress, and wrote said letter.  All in less than five minutes.  He then explained that, even if insurance won’t cover it, I could and should use my HSA.  And, he added, since it was December 31st I best get on the ball so I could meet my deductible before the new year.

Wow.  I walked out of the office feeling giddy.  I hadn’t asked for the letter.  Nor had I expected one.  And I certainly had not considered that by sundown I would own the Rhapsody Bed by Tempur-Pedic…

If you’re not familiar with Alltop, it’s pretty much the coolest concept ever.  Guy Kawasaki, inspired by PopURLS.com, created what he calls “an online magazine rack of popular topics.”  If you haven’t checked it out I sincerely recommend it.  The site is divided into subjects, one of which is fibromyalgia.  Other subjects worth checking out include Arthritis, Pain, and Lupus.

Also included on http://fibromyalgia.alltop.com are a few of my personal favorites: The Fibromyalgia Research Blog (previously discussed here) and The Fibromyalgia Experiment.  If you don’t currently read these blogs, start.

Thank you Guy Kawasaki for recongizing the fibromyalgia community.  I appreciate you listening to direct tweets for fibrofolks like myself.  And, most of all, I am grateful for the outlet.  Grateful more folks with fibromyalgia will have access to great blogs, news sites, and reference resources.

image from BN.com

And per their advice I read Eat Right 4 Your Type by Dr. Peter D’Adamo.  To be honest, this book left me feeling a bit… hungry.  And maybe hopelessly lost.  So I purchased Cook Right 4 Your Type and this whole theory seemed more appealing and doable.  I highly recommend both books.  And, I confess, D’Adamo’s theory sure seems to make sense.

image from Wal-Mart.com

Over the next few weeks I will gradually implement his advice for folks with my blood type.  Each day I will introduce an attribute of the blood type diet and discuss how I will implement the attribute in my life.  Based on what I have read and heard this will be a challenging process but I am willing to do whatever I can to alleviate my chronic conditions, namely my fibromyalgia.

Have any of y’all tried this diet?  Has it helped any of your chronic conditions?

Last year I found The Fibromyalgia Research Blog and have since enjoyed reading ByTheBay’s posts regularly. I recommend the blog to those with fibromyalgia as well as those close to fibrofolks. The blog discusses research and studies relating to fibromyalgia and chronic fatigue as well as various options for treatment and/or pain management. It is often the case that a post discusses a treatment option I have found helpful (like aquatic exercise) or explains and supports an observation I have made about fibro (extreme sensitivity to noise).

Since this latest flare-up began in early March I have begun the habit of additional reading and research about fibromyalgia. As I find interesting information I will be sure to bring it up in an “I Read:” post.