Not Enough Time… and a good reason why

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It’s 8:15 pm and I was just going to leave the office and head home. We had been talking today about my “Good Grief” blog and someone said, “Lynne do you realize that you haven’t posted anything since last April!? There are a lot of people who have posted replies and you haven’t made any comments.  You can’t let these people down! I thought you were going to do a post a couple of times a week?”

My heart sank.

Yes, I had wanted to make sure that the blog had new posts as often as possible and that they would always share new information that would help people who had come to the NFA site looking for support and answers.  My intentions were good, but I just haven’t been able to do it.

Why?  Well the truth is I just haven’t had the time.

Really? How could I not have time for the people who have counted on the NFA and trusted me to provide them with hope, to tell them that things will get better and that they aren’t alone!

Not enough time? Yes, and I think I have a good reason why.

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You see I have read your comments, and many of them are the same ones I’ve heard from thousands of you ever since I started working for and with the FM community almost 17 years ago. It was because I was asking those same questions and making the same comments when I was diagnosed with FM 19 years ago that I was determined to make sure that the FM community had an organization to raise awareness and provide hope.  So if we are still asking the same questions and complaining about the same problems, you might question if things have gotten any better since the NFA was first founded in 1997, and my answer would be unequivocally…YES!

In 1997, very few people even knew the word fibromyalgia.  I would have given anything to have someone say, “yes, I know what that is, and I have heard you should be doing this, that and the other.” It would mean that they wouldn’t be give me that blank stare and I wouldn’t have to try to explain what I was dealing with. Now that almost everyone knows about FM, we don’t appreciate their awareness because we are still dealing with its pain and fatigue.

In 1997, if you had told me that there would be medications that could help some people with FM, I would have jumped (if I could have jumped) for joy! But today, if you aren’t one of those who has benefited from the medications approved to treat FM, it’s hard to appreciate all the time and effort it took to get interest in developing medications and get them approved.

Over time I realized, what at one time seemed like “an answer”, could fade in importance if the people looking for answers were still dealing with other things that were part of the problem.

So almost five years ago I asked myself another question.  What else can we do to help people with FM to have less pain, better family lives, fewer or no symptoms, and to never have to feel embarrassed to admit that they have fibromyalgia again?  How could I be sure that the community would get the support, compassion, understanding and better medical help they deserved?

Well, I spent a lot of time pondering that question and I came up with an answer that turned into what I called “THE PLAN”.  And it has been the execution of this plan over the past four years that has taken up every hour of the day (that I wasn’t volunteering for the NFA) to develop. And now at the end of September 2014, we are getting very close to being able to launch “The Plan”.

So yes, I haven’t been as diligent in writing my blog, and I haven’t been able to answer as many of your emails as I would have liked, but I believe that the launching of the Community Pain Center will help thousands and maybe even millions of people with FM and chronic pain and its help and importance will never fade, instead it will just grow more efficient and more capable of proving each of you with answers to your questions and help you find the solutions you have been hoping for.

[Stay tuned…more on the Community Pain Center in my next blog…and I promise you won’t have to wait long!]

~Lynne


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About the Author:

The National Fibromyalgia Association has been serving the Fibromyalgia community since 1997.
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Comments

  1. Belinda Stanford  September 30, 2014

    Can not wait! Thank you for all that you do!!

  2. Monika Arnettlink  September 30, 2014

    I am truly looking forward to this “Community Pain Clinic! ” I appreciate your time, efforts and compassion.

  3. Lynne Matallana  September 30, 2014

    Thank you for your support and kind words! It means so much to me!! Many thanks Lynne~

  4. Caryn Alperstein  October 2, 2014

    Thanx for all your wonderful work

  5. Donald  October 3, 2014

    Can’t wait for the new venture! Keep up the good work!

  6. Brenda Paarmley  October 4, 2014

    Looking forward to hopefullybgetbsomevreleif , ideas & encouragement

  7. Kristina Broome  October 14, 2014

    Lynne,
    Thanks for this great blog and giving people hope and information. I sent you an important fb message. It might go to your other folders.

  8. Wendy  October 15, 2014

    Wow, I am really impressed with all the great work you have been doing, Lynn!! I commend you for the ability to keep going as you have and to have been able to reach out to so many people and make them aware of what fibromyalgia is, what it does and how it can effect lives. Not only the fibromite, but the family also. Thank you from the bottom of my heart for all the hard work you have put forth and I will most definitely be a member for as long as you are here.

  9. AnnE.G.  October 25, 2014

    I am new here, just happened to ‘stumble’upon this site. I think I’m at home here. I’ve had fm for 10 yrs, plus the chronic migraines that go with it ; I don’t know which is worse. I could go on but I’d be preaching to the choir. I will just take my meds, get the heated rice pack for my neck and stay tuned.

  10. Sharon Fritz  October 30, 2014

    Thank you I can’t wait!

  11. Alex Granados  November 3, 2014

    Hi Lynne,

    I work with a doctor named Bill Rawls in North Carolina who has recently written a book about his struggle with fibromyalgia called “Suffered Long Enough.” He is a traditionally trained physician, but found the medical community’s treatments for his illness lacking, so he developed his own. Would you possibly be interested in writing something about the book on your blog? I’d love to give you an advanced copy if you’re interested. It’s out November 10.

    Thanks so much for your time.

    Sincerely,

    Alex Granados

  12. Misha  November 22, 2014

    Hi Lynne,
    I am very new to all of this…not the pain, but the “possible” diagnosis. My doctor has told me several times that FMA is what I have but not ready to document for some reason. I’m seeing a rheumatologist Monday whom my doctor says will be able to diagnose…I’m writing to thank you for your site and to ask for support. I’ve always been good at advocating for myself but I’m so tired that I feel I am losing the battle before ever getting to climb the hill (looks like a mountain)…trying to stay hopeful. Any suggestions? Thank you.

  13. Sandy  December 6, 2014

    Humor – such as “the light at the end of the tunnel isn’t ALWAYS attached to a train” and a lot of waiting. I used to be a great advocate too (so good I made a living at it) but it just seems to take too much energy. I try to remember all these other strong women who are suffering the same and don’t go to pieces. I hope your Rheumatologist was sympathetic and you’re feeling somewhat better by now. I have dealt with this since at least 1999 and I still find myself fighting the idea of a “new me” and “new life” when all I want is the old one back. I have found counseling to help a lot when I feel overwhelmed. Sorry, this is rambling but the closet door to my mind isn’t opening much today.

  14. nfadmin  December 6, 2014

    Thank you Sandy. My rhuematologist has been sympathetic and helpful…I’ve had somewhat of a break in pain today but last week was intense!
    Reply

  15. Ramona Barlow  February 3, 2015

    I just found out all this fatigue, insomnia, coma like sleeps when I do sleep, chronic pain, isb? Costochondritis, restless leg, pain with my osteoarthritis and venous reflux disease…migraine headache, hands hurting cramping shakey and adhesive capsilitis of shoulder from shoulder surgery, stiffening with PT or exercise, going crippled when trying to walk with back..si joints, hips, knees and the bruised feeling all over is all part of fibromyalgia. The meds make me sweat profusely all day this is Cymbalta 70 mg and now Savella 100 mg daily

    The meds do nothing to help! I’m depressed and tired…
    I’m ready for something to work for me, as we are all different on results
    I’m limited on exercise because my shoulder etc.
    I’ve been told not to and no PT and No surgery

  16. Hilary Neumann  October 30, 2015

    Thank for all you do! Hoping to find some help here!

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