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Not All Butterflies Are the Same

5/31/2016

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​I read and reposted an excellent article this weekend on facebook. While I reposted it for its important content, I saved it because it echoed the very thing that drives me:
Not All Butterflies Are the Same.
​Not all of us with Fibromyalgia (FMS) are the same.


Our FMS varies, our personalities vary, our preferences vary, the circumstances of our lives certainly vary-- thus what we are looking for to help us varies. We certainly all need the most current, accurate, helpful, etc. information, but the form that information comes in must be varied. We certainly all need tips, tools, worksheets, etc. to assist us, but their formats must be varied.

​This is not a new concept to me--I found it to be true very early in my quest to help others with FMS. I adjusted my approach to dealing with others with FMS. I changed how I wrote. I changed the type of tools I put together. I changed the type of meetings I had and talks I gave.

It is not a new concept to those of us who are blogging, speaking about, writing about, and increasing awareness about FMS--and that is why there are so many of us yet most of us are still able to develop a following.

​I am not necessarily talking about those who are seeking treatment alternatives other than those offered by main-stream medicine, although this certainly applies to them as well.
  • I am talking about those who are too overwhelmed to care about all the medical terms.
  • I am talking about those who feel too badly to fill out an entire book of information about their FMS.
  • I am talking about those who are doing their best to get through the day, let alone make sure their doctors are doing all the right tests, documenting correctly in their charts, etc.
  • I am talking about those who feel left out and misunderstood every time they check out the newest blog, website, or facebook page and find another book too long for them to read or too complicated, due to fatigue, fibro fog, pain, etc.
  • I am talking about those who are so very angry that every new source they seek out, hoping for something different, is saying what all the others say: "You must take responsibility for your FMS diagnosis, care, treatment, recovery, etc."
  • I am talking about those with FMS who are looking for simple, concise, one-step-at-a-time help.

I not only understand and empathize  with these people, but I have a name for what they are seeking: fibroBASICS. I even have a plan for how to provide it. I have a plan for how to provide what they are looking for beyond the first few steps, but also what they will need way down the line. My plan even goes beyond what other Butterflies need...

But I have FMS--I cannot implement that plan on my own. 
The good news is, the internet is full of other people--voices--like mine, who also recognize this need. I call these fibroVOICES.  I see that our collective voices can be used to drive more than the current goals in the "Fibro-world". I have a plan to bring our voices together, to be heard as one voice--fibroVOICE to meet the needs identified above.

​I want to be clear--I am not criticizing any of the existing organizations or their goals. I am not suggesting shortcomings in their leadership or any failures of any kind. Their work has been invaluable and will continue to be so. Because of it, all of our fibroVOICES exist. These established organizations need to continue down their current paths, for the benefit of all of those with FMS. But time and experience has revealed a need to build upon their work. The existence of the variations in Butterflies has created the need to compliment their work.

​While these organizations, writers, bloggers, etc. are doing invaluable work, their focus is not the same as mine. They create tools, workbooks, guides, worksheets, etc. but they do not meet the needs of the Butterflies I am talking about. Their focus is scholarly, research-driven, awareness-driven and their items reflect that. The Butterflies I am talking about are overwhelmed by these. There is nothing wrong with the items--but there are Butterflies with different needs.

​If you are one of the Butterflies who recognizes this need as well, please contact me. I am looking for like-minded Butterflies--and even non-Butterflies (non-fibro people) to focus on building upon and complimenting the existing works and organizations. I want to combine our fibroVOICES --VOICES of all kinds such as nutrition-centered, natural supplement-centered, alternative treatment-centered, conventional treatment-centered--into a stronger, goal-centered, coordinated fibroVOICE.

To clarify on "like-minded", I will spell out more to-the-point what I am thinking.
  • My goal is to develop fibroBASICS booklets, which are simple, concise, and short.
  • By breaking all the aspects of diagnosing, developing a treatment plan for, managing, and living with FMS down into these fibroBASICS booklets, we will be providing what so many are needing: Fibromyalgia Made Simple!
  • My goals go beyond providing fibroBASICS for those with FMS, but also for those trying to understand FMS--from their family and friend all the way up to the very busy physicians who are not getting clear directives and information from any source at this time in a simple, concise, one-step-at-a-time format that they have the time to read and implement.
  • Physicians too? Yes, all levels of healthcare providers and support therapies. Science may not have all the answers yet, and the science changes frequently, but that does not negate nor change the need for those in healthcare having these resources to draw from.

​These are big goals, and again, I have FMS--I cannot accomplish them alone. However, I know there are others out there--other fibroVOICES--and I would like to hear from you. I want to form a team--fibroVOICE.

​I would also love to hear from those of you who can relate to what I have said here. I would love to hear from you if you have been looking for what I am calling fibroBASICS. I would love to hear from you if the goals I have set make sense to you.

My email is meshea@mesheacrysup.com

Blessings to all Butterflies, of all varieties!
​LIVE your fibroLIFE to the FULLEST!
​Meshea




2 Comments
Margaret Morish link
6/26/2016 01:22:09 pm

I don't have email at this time I was taking meds for fibro and it worked very well. The doctor took me off and now I'm in pain all the time. I am on fentanyl patches but doesn't work as well as the meds worked with the patches. I also have spinal stenosi. The fibro has spread all over my body.

Reply
Meshea link
6/26/2016 01:30:40 pm

Margaret, bless your heart girl! Why did he take you off all the meds? Regardless, if he is not willing to work with you, it's time for a new doctor. They work for YOU. Always remember that. Be respectful and professional with them, but never settle for any doctor that isn't listening to you, meeting your needs. It's not their job to dictate to you, but to work with you and help you. BLess you girl! ~Meshea

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  • fibroLIFE
    • About Maysha
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