The blog posts have slowed down. All three facebook pages have become home to “Civil War” this and “Historic Vicksburg” that. You have been shaking your head, wondering, “What is Meshea Crysup up to now?”
After nearly two years, I have finally met a group of people who, like me, believe that Vicksburg needs to embrace its History as industry! As exciting as that is, how would any of this help me with LIVING my fibroLIFE©?
Re-discovering LIVING my fibroLIFE©
Those of you who know me or have followed me very long at all are not totally surprised. In fact, you expect me to “shake things up a bit” and, frankly, you would worry about me when I do not. To be honest, I worry about myself at those times. If I am not cranking out blog posts, writing or editing a project, and/or posting away on facebook, either new information, inspiration, or laughs or freely sharing I feel too badly to be doing any of the above, I had better be on vacation, have company in town, or some other exciting reason! If not, yes, it is time to worry!
For those of you who are not as familiar with me, I will explain: LIVING and LIFE are emphasized in fibroLIFE© and LIVING a fibroLIFE© because I am determined to maximize LIFE and minimize fibromyalgia (FMS)! I am also committed to encouraging, inspiring, educating—dragging if necessary—others into doing exactly the same thing! If I am not maximizing LIFE, something is not right in my LIFE.
I have been mourning the loss of my beloved friend and co-director, Kathy Keeney, for several years now. I understand that seasons change and it was time for her to do something else, and I am behind her 100% in whatever she does in LIFE. Her presence as my non-fibro counterpart however was essential to the work we were doing. My vision for fibroLIFE© is no less valid than it was during that season we shared, but it has been impossible to find anyone else who shares in it—and has the time to devote to it—that Kathy had.
I have written about this many times. I have re-booted, re-configured, and re-worked my processes more times than either my readers or I care to count! Regardless of how confident I have been in my ideas, the essential ingredients for follow-through have just not been there. I cannot focus, plan, and produce consistently without a non-fibro counterpart due to all the many aspects of having a fibroLIFE©. If I could, I would still be working in the Real World. While I still have much to give to the World of All Things Fibro, I have failed to re-create the magic of our partnership. For me, failure is not an option!
Maybe the key is rather than re-creating, I need to focus on re-discovering?
When Hubby and I moved to Vicksburg, MS, because of his work, I was so excited! I love history and have had a special interest in the American Civil War for as long as I can remember. To my surprise—and disappointment—Vicksburg has not embraced its place of importance in history as I had expected. One of my first statements to our realtor was about how someone needed to do something about it. In fact, I even told her that if I did not have Fibromyalgia (FMS), I would lead the charge, pun intended! To do so, however, I would again need the help of a non-fibro counterpart or counterparts.
After nearly two years, I have finally met a group of people who, like me, believe that Vicksburg needs to embrace its History as industry! As exciting as that is, how would any of this help me with LIVING my fibroLIFE©?
The answer is so simple and obvious that I nearly missed it myself!
I have pontificated for nearly two decades on finding ways to remain active, connected, involved, passionate, productive, etc. in spite of LIVING with fibro.
I have told everyone that the key, for me, because of the type of things I am drawn to—educating about, developing processes, and motivating and inspiring change—is having a non-fibro counterpart.
I have stumbled-by-design into a cause I am passionate about that has a readymade pool of non-fibro counterparts!
I say “stumbled-by-design” because I have been actively seeking the answer to my situation. I have been not just hoping something or someone would come along! I have not been waiting passively for LIFE to happen to me. I have been engaging in what has been available to me and embracing the opportunities I have found!
NOT just hoping…
All are proactive…
All are choosing my life rather than life just happening to me!
I have Re-Discovered LIVING my fibroLIFE©!
I certainly could not start and sustain the organizations that I am now a part of because I LIVE a fibroLIFE©. But, with other members—counterparts—present to keep things focused and progressing when fibro is temporarily winning our never-ending-tug-of-war over my LIFE, I am LIVING my fibroLIFE© to the fullest again!
You are seeing posts related to the above lists on fibroLIFE©, MesheaCrysup.com, LIVING MY fibroLIFE©, and my personal fb page because, as I have always done, I am not just telling you how to LIVE a fibroLIFE©, I am showing you how I LIVE my fibroLIFE©!
I am leading by example. I am practicing what I am preaching. I am not saying one thing but doing another. I am educating those with and without Fibromyalgia (FMS) about the difficulties of LIVING in spite of fibro by sharing all I am involved with AND sharing just how much I rely upon, need, and respect my non-fibro counterparts! I cannot make a living like this, but I am LIVING my fibroLIFE© to the fullest!
I am so proud—blessed, happy, re-vitalized, renewed, etc.—to be an active participant in the groups that are moving Vicksburg forward by helping Vicksburg embrace its past—we are Re-Discovering Historic Vicksburg!
I am perhaps even more proud, if that is possible, to be an active participant in the World of All Things Fibro, sharing the journey, no matter what it involves, with all of you, as I move forward, finally, Rediscovering LIVING My fibroLIFE©!
Just a few I have to thank:
Part 3 of this ongoing series is about a very non-pleasant but all-too-real issue for many people, not just those of us with FMS:
This is actually a topic that is discussed a lot.
Whether or not the body is retaining and reabsorbing toxins when we are constipated is a highly debated topic in the world of All-Things-Medical. As with most things, I think the truth lies somewhere in the middle. Certainly, the colon is designed to hold fecal material, therefore it is unlikely to fail at this unless it ruptures. On the other hand, if the colon has too hold hardened stool too long, in large amounts, or both, it seems reasonable to believe it can become overloaded—pun really not intended that time—and possibly fail at keeping bacteria or toxins from being reabsorbed back into the body. For this reason, I do think we cannot dismiss that such reabsorption of harmful substances back into the body could certainly cause a fibro flare.
Strain and Discomfort
No need to see what the experts have to say on this one! We all know what it is like to have to strain to have a bowl movement. It can cause healthy people to be sore or feel exhausted, not to mention that this particular type of strain can lead to issues with heart! (I will not get into the physiology of this here, but the term if you are interested is Vagal Nerve Stimulation and it causes the heart to slow down, leads to heart attacks while on the toilet….)
The Actual Causes of the Constipation Themselves
Ironically—or perhaps just tellingly—some of the causes of constipation are things that can cause fibro flares in and of themselves!
We all know that many of our medications causes constipation as well. When we are in a flare, we tend to take more of some meds, therefore being in a flare can increase the likelihood of becoming constipated, thus forming a vicious cycle…
Many of the keys to this are actually covered above already, but some have not.
Was this “Not-so-Obvious-Cause…” a surprise to you or had you already identified it for yourself?
What suggestions or tips do you have to help avoid constipation?
I look forward to hearing from each of you! Everyone else is talking about it, so we might as well too! Do not be shy! ;-)
Meshea Crysup, fibroLIFE
While it is certainly true that I live with pain, fibro fog, fatigue, and mood/anxiety issues because of FMS, it is also true that in many ways my fibroLIFE© looks very much like the life of someone without Fibromyalgia (FMS). It is not that having a fibroLIFE© makes us overly exceptional. In fact, some people do actually have it worse than us and I readily acknowledge that. However, because of the “invisible nature” of FMS, every once in a while, I like to take the time to discuss what is going on in my fibroLIFE©. I do not do this for attention, sympathy, or any other personal benefit. I do it because I really believe the best thing we can do to increase awareness and understanding regarding FMS is to be open and honest about LIVING with and in spite of it. My goal is to help my followers not feel so alone, and hopefully pick up an idea or two. If those without FMS learn a thing or two along the way, that is, as we say in the South, “just all gravy”!
I have not been blogging much of late. As much as I love to write to help and stay connected to all of you, it takes energy and focus that I have not frequently had after attending to the priorities in my fibroLIFE©. Like you—like everyone-- I have to put taking care of myself first, then focus on my husband, family, home, etc. Not much has been left over of late!
Daddy has been very sick so I went home for a few days. That is a very long trip. While there, other than spending time with Daddy, I spent time with my son, other family members and friends. The stress of the travel, whirl-wind of visiting, and seeing Daddy so ill of course caused an increase in my FMS symptoms, but I did what I know works best for me: I rested as much as possible while there and once I got back home!
Speaking of home…
Everyone knows how it is when banks and insurance companies are not on the same page with a mortgage escrow account! If you do not know, I pray you do not find out! Hubby and I spent literally six weeks getting a mess resolved. Yes, that increases stress, which increases FMS symptoms.
It has been allergy season here in Mississippi, plus the end of summer/beginning of fall for us means hot and humid! We have been in the 90’s most of the time. We also had a string of thunderstorms for a few weeks. Yes, allergies, heat, humidity, and weather changes such as storms increase FMS symptoms.
We have now been in Mississippi nearly two years so I am working on actually finding doctors here rather than seeing the doctors I have had for many years back in Kentucky. Not only is it difficult to find doctors who understand FMS and work well with those who have FMS, but it is also emotionally stressful to start over with such important doctor-patient relationships. It has involved research, phone calls, obtaining referrals, making sure the doctors are in my insurance networks, etc. On top of that, there is a ton of paperwork to fill out once you finally get an appointment! Talk about increasing FMS symptoms! If I was not in a flare before I started the process, it will be a miracle if I do not go into one before it is all over!
Things have not been all bad, however.
First of all, I have become involved with the Vicksburg Civil War Roundtable group and the Historic Vicksburg Advisory Council. I am passionate about history as well as growing the ways we use “history as industry” to improve our local economy while bringing educational and cultural enrichment to others. Hubby is even going with me to our Confederate Christmas Ball! (Note to self: do all you can to avoid a flare and pray you are able to go to the ball!)
Secondly, I have met with a three locals with FMS who have asked for my help. It takes only a few minutes of listening to them for me to again know, beyond a shadow of a doubt, that I am supposed to help others with FMS. That is indeed a huge calling in my fibroLIFE©! That resurgence of inner-knowing brings such a peace—such comfort—which helps make LIVING with fibro more bearable.
That is what my fibroLIFE© has been like of late! Certainly I left out a lot of things like the mix-up with Hubby’s prescriptions I had to get fixed, the time I have spent at book club, the evenings out with our friends and Hubby’s “young engineers” that we have taken under our wings, the trouble it was to get the right parts to get our kitchen trash bind back as good-as-new, plus there was laundry to keep done, floors to keep clean…
You get the picture! My fibroLIFE© is actually a very normal life, mostly. Good things happening, bad things happening, complicated things happening, exciting things happening, everyday things happen, etc. And I have been managing it, in spite of having FMS. How? Mostly commonsense things, but that does not mean they are necessarily easy things. They take time, dedication, motivation, encouragement, etc. Most importantly, they take personal responsibility on my part, as well as a hefty does of "self-love" which in turn leads to adequate "self-care".
No, I have not been blogging as much of late, but I have been LIVING my fibroLIFE©! And, as always I want to assure you that if I can do it, I know YOU can do it too! I am going to keep right on LIVING my fibroLIFE© openly for all of you—showing you sometimes rather than just telling you that it can be done—always in an attempt to inspire, motivate, and educate to help YOU minimize your fibro and your maximize LIFE!
In Part Two of this series I am going to just get this one out of the way: Social Media!
Yes, I know, I am a blogger and I just shot myself in the foot, as well as all of my fellow bloggers because we all depend greatly on Social Media, but the truth is the truth: Spending too much time online can lead to a flare. Some people are online for other reasons, so Social Media is not the only culprit, however, it is a huge one, especially it seems for those of us LIVING a fibroLIFE©.
Granted, Social Media is a huge help to us and can play a positive role in our fibroLIVES©.
We could add to this list of positive aspects of Social Media fairly easily I am sure, so I am not saying it is bad for us at all. However, like all things in life, especially a fibroLIFE©, balance is absolutely necessary!
I am by no means trying to discourage anyone from using Social Media. I do want you to practice good habits however to avoid possible flares as a result.
Move Around Often
It is easy to get caught up in reading posts, chatting, playing a game, etc. and not realize how much time has passed. We even find ourselves ignoring that sensation nagging at us saying, “Ok we need to move some now.” Well, do NOT ignore that little voice! Instead, pay special attention to it. If you find that does not work, then set a timer to remind you. We all have them on our cell phones or you can even use a kitchen timer if you must. Determine how long you can sit—for most of us 15 to 30 minutes tops—and then be sure to STOP what you are doing, stretch, move around, and hydrate! Staying adequately hydrated will not only help avoid an increase in pain or headaches, but it will also help see to it that you are move more often because you will need to use the restroom.
Break up Repetitive Motion Activities
Moving around often will help this unless you are clever like I am and pick up your mobile device to multi-task while you are moving around! When you take a break from what you are doing online, truly take a break. Your hands, fingers, arms, and neck do not actually rest unless you use them differently. Standing up and walking while still online only helps the lower body—not the actual parts of the body suffering from repetitive motion activities.
Chew up the Meat and Spit out the Bones
I get really tired of reading posts, memes, and entire articles demonizing social media. Like all things, it is what you make of it. I am often amazed by the number of people who think every post is about them in some way. Also, some people cannot just allow someone else to have a different opinion—they just have to “set them straight”. Then there are those who do not just share for support, but they share every detail of everything, all the time. Do not get caught up in any of this! Take the good, leave the bad. Read what you can benefit from, ignore the rest. If this is difficult for you, set your social media filters to help you. Go ahead and unfollow, hide notifications, or even unfriend someone or unfollow a page or group if you find that content from them is truly upsetting you. “Chew up the meat”—the good stuff, and “spit out the bones”—the bad stuff, on social media. You should be controlling it, not the other way around! Keep proper perspective of things.
I am the world’s worst at wanting to finish something I am working on without stopping. Because of fibro fog and fatigue, going back to something I have started is like starting over for me. This, in turn, increases my anxiety to the point that I have increased symptoms just thinking about trying to return to something I did not complete. For this reason, I have to find creative ways to pace myself—to trick myself into not seeing things are unfinished. By using outlines for each of the things I write, I can stop after a heading is finished and not feel like I stopped in the middle of an article.
I am not a big gamer, but I do play Words with Friends. I have to keep a limit on the number of games I have going because I am so competitive plus I hate to leave my friends waiting for me to play.
I love to read, learn new things, and stay up on current events, plus I stay up on all the FMS info. When I go to Facebook, I always find things I want to or feel I need to read. Plus, I get many emails each day with content I want to or feel I need to read. I have had anxiety attacks over how many things are waiting for me to read! Rather than reading everything as it comes, I save the articles and read them when it is convenient and when I feel up to it. I only read while it still feels “good”, “productive”, or “relaxing” to me. Once it becomes the least bit stressful, tiring, or negative in some other sense, I simply stop. It is after all my choice as to what I read or do not read. Again, it is about you being in control of social media, not the other way around.
Another way to avoid being overwhelmed is to not participate in all social media. I simply cannot. I use Facebook regularly and twitter when I can. I try to keep a presence on LinkedIn as well. I left the others long ago. Social Media mediums count on, "If we build it, they will come." I have limited energy, as do most of you, so I cannot be one of those who joins every new option out there. Just because it is there, it does not mean I have to be a part of it. I choose to use what I am most comfortable with to cause less stress, thus be less likely to lead to fibro flares.
Do not let Social Media replace the Real World
This one is the toughest in my opinion. Often, we really feel the only people who understand us are our social media contacts. Plus, it is there for us anytime, day or night. We do not have to leave the house, dress up, look presentable, etc. The thing is, we need to dress up, look presentable, and leave the house sometimes! Also, we need to focus on repairing and/or strengthening our real-world relationships or creating new ones.
Another pit we fall into with social media is the feeling that it is the only place we are accomplishing anything or making a difference. How many of us have at one time or still do spend most of our time online reaching out to others through our funny, inspirational, or educational and informative posts? I used to be online as much as I could every day for just this purpose and felt like a horrible failure whenever I could not. The stress from that kind of pressure caused me to have flares! It also took time away from other things that I really needed to be doing. We have to take care of ourselves, we have family and friends we are responsible to and for, and we have business and social responsibilities as well. Doing good things for others online should not become so important to us that we neglect these other areas. I personally still suffer from this one a great deal. Knowing I am not writing every day stresses me so badly, but I am also a wife, daughter, mother, friend, etc. I have to work everyday at keeping the negative aspect of the stress I put upon myself from taking away from how well I care for myself or how well I LIVE up to my other responsibilities in my fibroLIFE.
Relying totally on social media for our socialization just increases our literal, real-world isolation. It is up to each of us not to let that happen. While you may not have connected the two before, I assure you that maintaining balance--controlling social media rather than social media controlling us--is necessary to keep social media from actually contributing to your fibro flares.
Recently I had been dealing with a fibro flare. I was doing all the usual things to get a handle on it: resting, stretching, not over-doing things, staying hydrated, etc., but the flare just would not give way. I was even waking up In the middle of the night in horrible pain, stressed, chest hurting, etc.
Finally I realized that each night I awoke, I had an upcoming event on my mind. I had been dreading the event for weeks. In some ways, my dread was the same as most people would have, however, I had some unique and legitimate reasons for dreading it as well.
Now, I have been at this a long time, so saying, “No!” is something I have learned how to do. This, as you will find out later in this series, was not the usual “just say no” type situation. It is actually something I will reschedule in the future. Regardless, it was stressing me out just the same, so I made the decision then and there that I was just not going to do it. I immediately felt better.
The flare is not completely over, but I have no doubt that just making my decision will go a long way toward getting past it. Today, no doubt because I am feeling better, it hit me that there is a good blog topic here: Some Not-so-Obvious Causes of Fibro Flares!
Because I do not want the blog post to be too long, I am going to break it up into a series of blogs. It will cover a broad range of topics including physical issues, emotional issues, social issues, interpersonal relationship issues, and spiritual issues. I will try not to get into too much “story telling” but I will briefly identify how I determined that each was indeed contributing to a flare, what I found that helped get me past it, and what I have done to try to avoid repeating the same thing in the future.
Some may be thinking this will be a waste of time but I assure you fibro flares are not as straight forward as many think. We can probably all agree that family, friends, employers, children, spouses, parents, and even health care providers are often very unaware of things that can bring on a flare. However, I have found that often I have been as oblivious to the obvious as those around me were. Sometimes, even more so.
It is my hope that you will get some insight into your own flares during this series. Also, I hope some of you will comment or contact me to share your own discoveries of and solutions for Some Not-so-Obvious Causes of Fibro Flares!
Meshea Crysup, fibroLIFE©
When the Optimistic Motivator Feels Pessimistic and Unmotivated
As much as I love going on vacation with my husband, I am always anxious to return to my own little world. My Hubby and Cally to care for. My home to keep organized, clean, and comfy. My books and articles to read. My blog to write. My ideas to make tangible.
On top of all that--after all those things are not that big--I am going to finally get thin and stay thin. I am going to create the photo books I have collected pics for. I am going to get the clothing I have to give away organized neatly and placed in my car. I am going to file the seven months of bills that are in the very deep desk drawer. I may start sewing again--if my sewing machine miraculously started working again without being taken to the shop, which I meant to do. I may actually work out a song or two on my guitar from the list of songs I have been compiling from every road trip Hubby and I have taken in the last five years or so. Why, I might even sing them in front of people, somewhere, sometime…
Well, I am back from vacation. We got back three days ago in fact. Today, I am finally finishing up the laundry from our trip.
I need to go to the store, but I am very tired. It can wait; after all, it is just me and Cally the next few days and we can get by.
I really should start the re-write of my symptom tracker and coordinate it with my fibroBASICS©, volume one. My head hurts so badly though.
I really do need to read all the articles I have saved first anyway. My head is pounding though. I cannot hear the words as I say them silently in my mind.
Maybe if I read aloud? No, even my face hurts; my jaws, the muscles of my face, and even behind my eyes.
My arms hurt, my fingers hurt, my neck hurts, and my legs have decided to join the party. I am tired. I am always tired. I wake up tired. I sleep and sleep, but I am always tired.
Other than the last load of laundry, I have also run the dishwasher and made the bed. Now the tears. I am not going to accomplish anything of value today—again.
I will rest, get my shower, and make it to my book club. I have a little more than five hours to make that happen.
Laundry, bed made, dishwasher ran, and a shower plus book club! It is more than it sounds like, really! I never let people see me without my make up on and my hair done. Really, my accomplishments today will be more than they sound like…
Damn pain, fog, fatigue…
Damn constant battle with depression.
Laundry, bed, dishes, shower, hair, make up, book club—a very busy, successful, rewarding day. Normal, but I am saving the big, “WOW” stuff for tomorrow, or maybe even the next day…or the next…
Depends on the pain, fog, and fatigue. They are beyond my control. I refuse to succumb to the depression that comes with them.
My value as a person is not contingent on what I can or cannot do.
I am a human “being” not a human “doing”.
Whew, that is good news because today, again, I think I am done “doing”.
Tomorrow will be better! Heck, I might even feel better and break into being a whirlwind this evening after book club! The day is not over yet!
The day is not over yet!
That is more like it...
The day is not over yet...
Please click above for article complete with Pictures of Christine's "Dolls and Critters" and for her bio!
fibroLIFE Works© is Proud to Feature:
Christine unfortunately LIVES a fibroLIFE© but her fibroLIFE Works©!
To keep myself busy, I crochet. I have been crocheting since 1984 and really enjoy it. Now I make custom items for people, which is awesome - I get to do something I love, make a little money doing it, and make other people happy, so it's really a win-win-win! My husband and I also have an eBay store with a wide variety of items in stock. All of this gives me a reason to get up in the morning and try my best every day.
My dolls and critters are featured on www.facebook.com/chriscrochetedcreations
eBay store address: www.stores.ebay.com/kirkt45
I have been a part of fibroWORLD for a long, long time. Just after the dinosaurs, when MSN Groups was all the rage, that is when I got my start. I have not been very active the past few years for a variety of reasons, but for those of you who remember me, I am sure you are not surprised at my fibroAPPROACH©. For those of you that I am new to, “Yes, I can put “fibro” in front of ANYTHING!”
And, I am curious: What do YOU put “fibro” in front of? I hope to hear from a lot of you!
It all began when I founded fibroLIFE©. Just as its name says and demonstrates that having Fibromyalgia affects your life—all of it!
Not only do I LIVE my fibroLIFE© this way, but my desire is to help others do the same.
In my own very REAL way, with a lot of what I at least consider humor and, I hope at least a dash of inspiration, I share my experiences, what I have learned, and new information I come across in the hopes of helping anyone else with Fibromyalgia minimize the “fibro” and maximize the “LIFE” in their own fibroLIFE©.
In the past, now, and in the future, you will find me discussing and encouraging others to “LIVE” with and in spite of “fibro”.
I am revisiting some old topics and adding some new, but yes, I really can put “fibro” in front of EVERYTHING!
I want to be clear that I never—not now and not back in “the day”—have believed that I know enough to be an expert on all of these topics and all the others yet to be added. I know some about most of them, and am happy to share that, but I fully acknowledge and depend upon other fibroVOICES© in these areas as well. This is why I want to form fibroVOICE©. I want experts in each area to lead the way in developing the fibroBASICS© in their own niche.
I hope this explains clearly how I view fibroWORLD. I hope this clearly expresses my desire to help everyone with Fibromyalgia, or affected by it through affiliation, to face, yet minimize, the “fibro” and to find new, creative, and alternative ways to embrace “LIFE”. I hope this clearly shows you my heart in the matter: I am not an arrogant upstart who thinks she knows it all and can do it all. I just know how difficult it has been to get to the point I am finally at in my own fibroLIFE©, and I want to bring together others and meet the needs I see and read about daily.
Yes, I really can—and will continue to—put “fibro” in front of ANYTHING and EVERYTHING, because I want EVERYTHING to be possible for those LIVING a fibroLIFE©.
I am curious: What do YOU put “fibro” in front of?
I truly hope to hear from a lot of you!
LIVE your fibroLIFE© to the fullest EVERY day!
fibroLIFE Works© Returns!
My two favorite parts of fibroLIFE were fibroTRAVEL© and fibroLIFE Works©. I am happy to announce today that fibroLIFE Works© has been revived at our website!
What is fibroLIFE Works©?
Originally the title had a dual meaning: Making your fibroLIFE© “work out” for you or actually finding a way to “work” in spite of LIVING a fibroLIFE©. While both would still be appropriate, I have decided that in its revival, I will limit the title to actually finding a way to “work” in spite of LIVING a fibroLIFE©.
My reasons are:
Each time I add someone to the fibroLIFE Works© feature page, I will post a link to their information. I will add these links to the ongoing list of links my sister, Melanie Moake, RN, uses to keep our scheduled post queue filled. Therefore, it will actually be an ongoing reminder to our followers about the services, products, etc. available and encourage them to buy from them and/or utilize their services.
Would YOU Like to have YOUR fibroLIFE Works© Story & Information Featured?
If you have a business, service, product, etc. that you are involved with in spite of
LIVING a fibroLIFE© and would like to be featured at our website and have your information frequently shared for others to see, please contact me at email@example.com and include the following:
A brief bio about yourself and having Fibromyalgia (whatever you are comfortable sharing)
I am thrilled to be doing this again because, in the end, I truly believe what I am forever on my soapbox about: we can LIVE in spite of having Fibromyalgia. Any little thing I can do that may help just one of you find LIVING your fibroLIFE© a bit easier, more fulfilling, etc. is how I find part of my own happiness while LIVING my fibroLIFE©!
LIVE each day of your fibroLIFE© to the fullest!
The world must have "big picture" people, and I am thankful to be one. However, the problem with being a "big picture" person is you see so much to be done all at once. It has gotten me in over my head my entire life. One of the many, many things I had on my "to do" list when fibroLIFE© was booming in Paducah, KY, was developing network of FMS and related illness bloggers. There was no way our little group of volunteers could do all we were doing and accomplish that too. It does make me smile, however, to see that it was obviously a very good idea...
I am so pleased to announce that I am now a PROUD member of Chronic Illness Bloggers Network!
Chronic Illness Bloggers is the brainchild of Julie Ryan, of CountingMySpoons.com.
I was aware of CountingMySpoons.com and Julie Ryan, however we had never been in touch and I was not at all aware of Chronic Illness Bloggers Network until my friend, Celeste Cooper, told me I should discuss an idea I had with Julie. If Celeste suggests it, I usually do it, so I thought I would re-acquaint myself with Julie's work. That is when I stumbled across the Chronic Illness Bloggers Network.
My co-director, Kathy Keeney, returning to work in the real world, and then our move from Paducah, KY, to Vicksburg, MS, had really played havoc with my fibroLIFE-related efforts. After several false-starts, I had only recently found my footing again. I was so excited and wanted to join the network immediately. You cannot imagine my disappointment--and shock--when I did not meet the minimum requirements! I had not been blogging again, consistently, for three months. I was floored! All the years I have been online, active in what I call "Fibro-world", and I had allowed myself to become so irrelevant that I did not qualify to be a part of a group much like one that I had envisioned years before! I will tell you, that was a low moment for me.
Well, Celeste was right: I did need to connect with Julie Ryan, but there was no way I was going to approach this brilliant lady until I was qualified to join her network! I really only had to wait about six weeks--maybe less--but it seemed like an eternity! I must admit, however, there were days that I think the challenge kept me plugging away at putting out new blog posts in spite of feeling badly.
Finally, the time arrived, I applied, and, as they say, "The rest is history!"
No...actually, it is NOT history!
This is an important part of my new beginning. The blogging world has "grown up" while I was floundering, and I am learning new things daily from the network members. I am discovering very talented bloggers with a variety of styles and approaches, which are inspiring me--and challenging me a bit too! I am also meeting new people in the Fibro-world.
Not only do I benefit, but you, my readers do as well. Not only will I grow as a blogger, but I am sharing posts from my fellow network members on my facebook pages and my Twitter feed. Please, read them and start following them as well. These fellow bloggers--as you know, I call them all fibroVOICES--are working hard, each in their own way, to help everyone facing a fibroLIFE. They have much to share that we can all learn from, and I am sure that they too are encouraged when they see that their posts have been read, and especially when someone takes the time to comment.
Obviously a "big picture" person herself, Julie has also been generous with her valuable time and help. I am also enjoying interacting with the other bloggers! While I am still feeling-my-way as the new, yet old, blogger-on-the-block, in just a few short days I have become 100% sure that I am blessed to have been accepted into this network of bloggers.
I want to say up front:
I am 100% behind all the research that is being done.
I am 100% behind all the existing organizations, support groups, etc.
I am 100% behind all the bloggers, websites, coaches, books, aps, etc. that are out there, as long as they are not peddling snake oil!
I am 100% behind all of the Fibromyalgia Awareness initiatives, events, etc.
I am NOT being critical or finding fault with any of them. All they are doing is essential! Still, I have this nagging question…
What Do We Do While We Wait for the Science to Figure Out Fibromyalgia?
When I moved over 18 months ago, I was hopeful that I could decrease the number of physicians I had. After all, everything I was reading, being told by specialists I personally knew, and hearing at conferences was that Fibromyalgia management was shifting from specialists to primary care physicians. I sought out a highly respected local primary care physician, set up my initial appointment, and found him to be just as amazing as I had been told, but…
You guessed it: He did not feel he could manage my fibromyalgia medications. In fact, he told me that he would be questioned immediately if he wrote the scripts for the meds I was on.
I was floored! My treatment plan is extremely conservative as well as firmly rooted in traditional medicine. I consistently average taking only half of the pain medication I am prescribed. Other than the one pain medication, I am on anti-depressant and anti-anxiety medications, one of them a very old med, which have proven to be the most effective treatment for me over a period of several years. My medications, however, are not “the big three” that have been approved for FMS because those medications did not work for me. In fact, the three approved medications do not work for many people who have FMS.
My initial response was sort of like, “No problem! I have been at this a long time so I will teach you what you need to know about Fibromyalgia! I have taught two insurance-based health coaches, countless other people who have FMS, as well as their families and friends, and even physicians I know listen to what I have to say on the topic. I write about it, stay on top of the current news about it, and I LIVE it, so I am the perfect first fibro patient for you!”
While he had no doubts that I knew enough about it to do exactly what I was saying, he was still adamant that in this state, he would get called out immediately if he tried to manage my medications. Wow. I am still floored every time I think about that fact. My primary care physician cannot—would not be allowed—to manage my very conservative fibromyalgia treatment plan. On top of that, the nearest FMS doctor is an hour away, in a much larger town, and very difficult to get an appointment with.
I have a son still living back home, as well as many other family, therefore I travel back home frequently and have continued to see the same doctors for my fibromyalgia. My local, primary physician has been wonderfully understanding and willing to work with them should the need arise. While this has worked for me, it is inconvenient, and might well not be doable for other people in the same situation.
Seriously folks, I ask you: What is wrong with this picture?
Why, especially since FMS has finally been acknowledged as real, is it so difficult to find doctors who can and/or will treat it? People with FMS are overwhelmed enough without having to also search for, and often travel long distances for, physicians to treat FMS.
Just yesterday, Necie Edwards, one of my trusted fibroVOICES©, posted a link to an article by Daniela Semedo, PhD, in Fibromyalgia News Today entitled:
Fibromyalgia Treatment Often Depends on Physician’s Specialty
This is all too true! In fact, in spite of having been acknowledged as a legitimate condition, the job of setting consistent treatment standards has not been taken up by any organization.
Also, recently, the Senior Director of the American College of Rheumatology wrote this response to another of my most trusted fibroVOICES©, Celeste Cooper:
… the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010. This endorsement was published and cannot be “undone,” so readers can and will continue to see that endorsement online and in print. However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease…"
This is the reason he gave:
“For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time. This means readers can always find more recent information than something published 6 years ago – and that is the case here. An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.”
For the complete article, click here: http://fmcfstriggerpoints.blogspot.com/2016/04/acr-responds-to-inquiry-on-fibromyalgia.html#.V2qxc4-cHIU
Traditionally, rheumatologist have been the lead in diagnosing and treating FMS. Now, they are no longer supporting guidelines for its diagnosis. Even better, the reason why is basically because the science is always changing.
I am floored again. Yes, we are learning more and more about FMS all the time, and that is a good thing! We are also learning more about cancer, heart disease, diabetes, arthritis… The science behind medicine is always changing! That has not stopped us from having standards followed across the board by all healthcare providers for each of these conditions! The symptoms monitored, the wording used when discussing them with each other and their patients, etc. is consistent! When the science changes enough, they all change along with it, but in the meantime, standards do exist!
There are many excellent books already written that could be adopted and/or adapted to set these standards. One in particular is by Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain. Yes, the science has changed since it was written, but not so much that the basics it covers—what I call fibroBASICS©--have changed. In fact, in many ways the science has supported, backed-up, and validated what Celeste said in her book.
Now back to my original question:
What do we do while we wait for the science to figure out exactly what Fibromyalgia is?
Perhaps the better question is: Why are we waiting for science to figure out exactly what Fibromyalgia is?
The fact is, many of us are not.
We have become active, passionate voices, talking about our own experiences with FMS. We are keeping up with and sharing the news about FMS, and relating it back to our own experiences with FMS. We are educating one another. We are supporting one another. We have become coaches, authors, bloggers, speakers—patient experts--fibroVOICES©.
At my website and in my blog, I share information about and links to the fibroVOICES© I trust in my own fibroLIFE©. If you would like to be featured, have your blog listed, or have someone in mind that you think should be featured and listed, please send me your info and I will check it out. FMS varies from person to person, therefore I fully acknowledge that treatment modalities must vary as well. I am happy to include anyone except Snake Oil Peddlers.
In the meantime, while the science continues to advance, change, etc. the various existing FMS groups will continue to work within their own niches. I encourage us to continue to support one another.
On a personal level, it is my goal for us to get this point across and achieve these goals:
The information exists and has been proven over a period of years now--We know a great deal about how to manage FMS, how to find the best individualized treatment plan, how to support and help those with FMS.
As well as LIVING a fibroLIFE, do you struggle with weight?
I really would love to hear from you!
It is very hard, and I do not know about you, but some days,
I feel very alone with my battle. ~Meshea
My Big, Fat fibroLIFE©!
Heck of a title, huh? Can any of you relate?
Well, for me, this is just how I really feel about it.
I am five feet, zero inches tall but heavy enough to be six feet, six inches, and that is by my reasonable standards, let alone what the crazy weight charts have to say on the matter!
Here are the facts:
And currently, I am losing the battle with weight so yes, I am LIVING a Big, Fat fibroLIFE©
Points I Want to Make:
What Am I Going to Do?
Well, now that I have gotten all of that out of my system…
At the same time, I am going to be happy, positive, and forward thinking—typical me!
I am going to LIVE my Big, Fat fibroLIFE©!
Besides, even when I am thin folks, I am over-the-top and bigger-than-LIFE most of the time anyway. ;-) Those of you who know me, feel free to verify that in your comments! ;-)
May you LIVE your fibroLIFE to the fullest every day!
Meshea Crysup, Founder fibroLIFE©, LIVING a Big, Fat, fibroLIFE©
A while back, I had planned to write about what "LIVING" means to YOU--to challenge each of you to LIVE your fibroLIFE to the fullest--to embrace reality for what it is and then RUN WITH IT! Instead, I found myself unable to issue the challenge to you or even to do so myself because of a fibro flare. Or...maybe I did LIVE up to the challenge myself? Let us see what do you think as I share that event with you now. ~Meshea
For Such a Time as This
I have had weight loss as a priority all this year--and when you LIVE a fibroLIFE, you can only get so much into a day. So, this week, rather than writing FIRST, which is what I used to do, I have taken my morning walk with Cally. Yes, it was the right thing to do for her, and for my weight loss goals, but after, I have had to sleep at least three hours. Then, I have had other priorities to attend to. Laundry, cooking, cleaning, shopping, errands, etc., all of which take a great deal of energy on my part, resting in between, etc. Frankly, I have run out of day each day thus far.
I have been in horrible pain at night, finding it too much even to do twitter and facebook updates really. I am even behind on Words With Friends, which is my favorite form of distraction from the pain. Therefore, I have not gotten back up, as I used to when unable to sleep, to write either.
Today, rather than being better, I am actually worse. The night was horrible with pain beyond words...a true "If I were a horse..." night for sure. Morning found me exhausted, sore as if hit by a train multiple times, with swollen hands, feet, and face, hot flushed skin, and nauseous to the point of needing to just be very still. Cally and I did not walk. The only cooking I have done is to to microwave Hubby's Jimmy Dean Delight this morning. No cleaning, no laundry...no Words With Friends even. I am still behind on Twitter and facebook. Those of you who know me well will know how badly I feel when I tell you I am still in bed actually, hair and make-up left undone. Yes, FMS is kicking my butt today!
I did pass some time, however, watching a movie. Yes...those who know me...I said "watching". You see, I almost always have Fox News or The History Channel on, playing in the background, but I rarely "watch" anything. I am a "listener". I stay busy...going from resting to folding laundry...back to resting, then Swiffering the floor...then resting. I actually only "watch" something when Hubby is home or when I have ladies over to watch movies, either faith-based, historical, classics, or Broadway-type productions. Today, however, I watched a DVD I had bought for just such an evening...One Night With The King...which is the story of Esther. Peter O'Toole, Omar Sharif, etc. Faith-based and a classic...for I am truly a multi-tasker at heart, from birth I think!
I would like to say that I enjoyed it. I really did try but I just feel so very badly and it goes so against my grain to just sit and "watch" something when I am alone and there are so many other things I want to accomplish. In case you have not gathered yet, that is what LIVING is to ME. I am happy when I am actually working toward doing one of the many, many things inside my head and heart...and almost always that means writing to make a difference. Rather it be about my childhood...for it was not The Brady Bunch, my failed marriages, my failures as a parent, my struggles with faith, or, of course, my moment-to-moment battle with FMS, for me, LIVING means making the best of all that has happened in my life.
If sharing any of my hard-lessons-learned helps just ONE person, then I will gladly share it all...for that is the heart I was born with. I cannot believe for a moment that God allowed a child to be born into the hard life I had...the fear... such fear...and the resulting ultimate lack of good judgment I showed from time to time, the resulting, never-ending struggle with faith...and the horrible battle I have now with FMS, all for naught. No, I do not fancy myself a modern-day Esther. I will never save an entire people by winning the love of a great king...but I write freely of my struggles to help those who have the same struggles...many of which, for whatever reasons, whether shame, embarrassment, fear, etc., do not openly talk about their needs or reach out to others.
Like each of you, I hate being this way. I am educated and capable of earning six-figures, taking care of myself, having and doing as I please...but for my health. Instead, I am in bed, still. Hair not done, make-up not done, and all I have accomplished is "watching" a movie--.but FMS will NOT rob me of LIVING today. I will not be ashamed, for FMS is a real illness. I will not disappear from the blogs, facebook, twitter, etc. I may not be as active as I would like, but I will...I have...poured my heart onto this blank screen...as cleansing as a simple, blank piece of paper was to me when I was a frightened child.
In a moment, an hour, a day--just as I began feeling so badly, I will again feel better--if only for a moment, an hour, or a day...but I will LIVE each of them--rather good or bad--to the fullest. FMS is but a condition of my body...not the condition of my spirit! My body endures FMS but my spirit is stubborn, ambitious, and determined! There may be errors, for I am not at my best--but LIVING to ME is reaching out to each of YOU and SHOWING YOU that FMS is but a condition of our lives, not the end-all-be-all-result of our LIVES. You see, I do not know that there was a destiny that brought me to this place...perhaps, perhaps not. But I do know this: where ever I am, whatever my situation, FMS raging or just chomping at the bit to do so, I will LIVE as my determined, stubborn, ambitious heart dictates. I will live at all times for "such a time as this"! Not for some grandiose moment of ultimate moment of importance, but for each simple, precious moment I have!
I want to add this: I learned as a child--a very frightened child--that no one really lives like The Brady Bunch, and that was perhaps my greatest lesson. I interject that here because it applies. It is so important to see that LIVING with, IN SPITE of FMS, as difficult, unfair, painful, etc. as it may be, is not really a unique challenge...but rather the exact SAME challenge every living being faces. Perhaps, in some bizarre way, we are even lucky, because having FMS forces us to face this truth head on.
I know myself--and what LIVING means to me--and I have tried to share that here with you. Now, as I had planned all week, but in a very different way than I had planned, I challenge each of YOU to do exactly the same. Define, each of you for and within yourselves, what LIVING really means to you, and find a way, IN SPITE of all--not just FMS, but all adversities--find a way to LIVE at all times for "such a time as this"!
May you LIVE your fibroLIFE to the fullest today and every day!
Introducing a new feature at MesheaCrysup.com: Living a fibroLIFE…
Yes, it is true, I seem to find a way to put “fibro” in front of everything, but I am sure you have come to expect nothing less of me! ;-)
What are fibroVOICES©?
Actually, they are not a "what" but rather a "who". Simply put, fibroVOICES© are individuals who are speaking to and for those of us with Fibromyalgia.
They are the ones writing blogs, authoring books, coaching, teaching, researching, treating, encouraging, inspiring, and never giving up on helping each of us with Fibromyalgia LIVE their fibroLIFE© to the fullest.
Why is this a “New Feature” at my website?
I have never nor ever will believe myself to be the ultimate authority of Fibromyalgia! There are so many intelligent, talented, and dedicated individuals who have created so many great books, blogs, etc. I am in awe of the work they have done and I want to be sure those who follow me are aware of them.
Each of our fibroLIVES© are unique, thus, how we experience Fibromyalgia is unique. While I am positive I have information and experiences to share that will be helpful to some, I know I am not the perfect fibroVOICE© for all. I would be doing an injustice if I do failed to introduce you to fibroVOICES© other than my own, therefore I am introducing you to the fibroVOICES© I trust in my own fibroLIFE©.
Each fibroVOICE© brings their own unique gifts and talents to what I can the “Fibro World”. By providing you with other fibroVOICES© to choose from, I hope everyone will find several that they relate to, feel comfortable with, and ultimately trust.
So please, come to www.MesheaCrysup.com and check out the drop down menu under “fibroVOICES©”. I have several there already and will be adding more as quickly as my fibroLIFE© allows.
LIVE each day of your fibroLIFE to the fullest!
Founder of fibroLIFE
If I were read to that title as a blog follower, my first thought would probably be, “When does Fibromyalgia not really interfere with LIVING?” I expect that was your first thought as well. Certainly, it impacts every day, but some days are undoubtedly worse than others.
Some days it feels as if FMS is barely allowing you to even exist! How does one LIVE on those days?
Eternal optimist, champion of positive thinking, and all-around annoyingly perky person that I am, I must confess, even I struggle on those days—a day like today.
Then comes the voice of doubt:
Look at you! Who are you to tell people they can LIVE a LIFE of substance, value, happiness, and fulfilment in spite of having Fibro? You are not going to make your luncheon and meeting today. You are not going to accomplish the things on your “to do” list. You cannot even go to bed or stand or sit without hurting beyond words! I, Fibro, am calling the shots today! In fact, we both know I, Fibro, actually call the shots every day! I, Fibro…
Every ounce of my being rebels:
Fibro, you should have stopped while you were ahead!
Yes, you are playing havoc with the things I want to do at this moment, but you will NOT stay at this level! You will let up and when you give an inch, I am going to be physically and mentally ready to take a mile!
O.K. I am kidding myself about the “physically ready” part, but I am on a roll here…
The real battlefield is after all in my attitude.
I am at a loss at this moment. I am being run over, knocked down, imposed upon and within, and made to like it but I am also stubborn, determined, and a fighter!
Just give me an inch Fibro…
I dare you!
I WILL take a mile—one step at a time—but I WILL take it!
At the moment, the battle is not going my way, but in my mind, I already see its end. I am the victor!
When Fibromyalgia really interferes with LIVING, this is how I LIVE through it...
I fight the battle within my mind. I battle, and I beat, the negative thoughts. I visualize—I focus on when the symptoms let up and what I will do—the LIVING I will do when that happens. I focus on the things that inspire me, the hopes I have, the plans I have, and the relationships I have.
Not everyone copes in the same way—I understand that. But we must each fight, and win, the battle in our own minds. Not everyone feels they still have inspiration, hopes, plans, or relationships. That may even be true, but you do not have to let it remain true.
You will have FMS no matter what you focus on—no matter what you think about or allow to LIVE in your mind. CHOOSE what those thoughts are—that is the first step! And remember that not choosing is choosing by default. It is just allowing “whatever” to move in and rule your thoughts.
Who we are—actual LIVING—begins in our thoughts. Retain command of those, and you will never lose yourself! Win the battle in and of your own mind and when Fibro gives an inch, you will be ready to LIVE your fibroLIFE.
I saw a social media meme the other day that was joking about how we used to answer the phone, which had only one ring tone--RING--without any idea of who was on the other side waiting to speak to us AND we SOMEHOW survived! I had to "ROFLOL!"
I also saw one that showed a phone receiver dangling in the air, hanging by its chord from the phone on the wall and it said, "This is how I used to block someone from calling me!"
Again, I had to "ROFLOL!"
I recall many people I knew thinking "back in the day" that taking the phone off the hook or not answering once we had caller ID and could see who was calling were just awful things to do. I was never one of them. Even then, I knew that a telephone was MY tool, not the other way around!
So many of us with FMS hate talking on the phone. (It is exhausting, stressful, and draining to most of us, but that’s another post on another day!) Guess what? You do NOT have to! A telephone is a tool for YOU to control. Do not let it control you instead.
I personally talk to my husband, parents, children, siblings, and a few friends that I know do not text or who would not opt to call me unless they really needed to. Other than that, everyone else knows to text me if they want to reach me. In fact, if my friends see my name come up on their caller id, they answer with, “What’s wrong?” because they know I do not talk on the phone.
Out of necessity, I do accept business calls, but I have the numbers programmed in my phone so I know who is calling. I do not answer just any number that comes up. To deal with all other calls, I even frequently have my voicemail greeting say, “If you need to contact me, please text me, and I will reply when I can” It does offend some people, but most adjust quickly.
Do not feel guilty! You have the right to control who you speak to, when you speak to them, and to communicate in alternative ways. Actually, considering the fact that nearly everyone has a cell phone, tablet, etc. with them at all times, most people have decided that their phone is a tool for them to control, not the other way around. Those of us with FMS are not the only ones!
I know you have all seen the memes on social media--the ones like: "No one really wants to hear how I feel so I hide it all the time". Often they go on and on to talk about how alone it makes the person feel, what a lie they are forced to live, etc.
I understand that people relate to them--I have been there, done that! However, now, these memes infuriate me! I want to "Soap Box" every time, right then and there!
Please listen: You are not doing anyone any favors by pretending you are O.K.
It is true that no one wants to hear us complain about every ache and pain we have, and I seriously doubt if any of us want to even try to explain them all anyway. However, that does not mean we should simply say we are “fine” or “O.K.” when people ask how we are doing.
First and foremost, we have the right not to have to pretend all the time! Pretending is exhausting and the last thing we need is something else to drain our limited energy.
Secondly, how are we going to educate the public about FMS if we are not honest about it? Seriously, think about that. We already know we “don’t look sick”, mostly because we work really hard at it to be perfectly honest. In fact, I have begun using that fact to help me with this situation.
My standard answer has become, “Thank you! I work very hard at looking this good! I even made this dinner my main priority for the day, and slept as much as I could, using my “good” energy to get ready and to be engaging this evening!”
Obviously, I’m not advocating that you give everyone all the gory details. Other common comments I make are:
· I am doing well considering I am fighting a fibro flare.
· I am happy to be able to be here. I was not sure I would make it because FMS pain kept me up most of the night.
· I am doing well today. Thankfully, I’m not mentally foggy, in horrible pain, or too terribly fatigued.
· I am doing pretty well, but I am foggy today so just take that into account if I say something that sounds loopy!
· I am doing pretty well, but I did have to take cab because I am too foggy to be safe to drive.
If we use these honest but limited types of responses, we can reduce our own stress as well as begin to change the mindset of others regarding FMS.
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 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.
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 firstname.lastname@example.org
Blessings to all Butterflies, of all varieties!
LIVE your fibroLIFE to the FULLEST!
I have read many articles in the past which actually blame FMS on over-use of antibiotics, so there is no doubt, if I looked, I could find articles that would support that fibro flares can be brought on by antibiotic use. Furthermore, there is no doubt that we all need to be as educated as we can be regarding FMS, but in the end, how much does it matter?
If you are not inclined to dig that deeply into the existing research, does that mean you are not doing a good job of managing your FMS? If you do not feel well enough to read an article on the subject, should you force yourself to do so anyway?
I do not know if it is easier for you, but when I am not feeling well, the basics are certainly enough for me! In fact, I run into people all the time who say they do not want to hear all the science, because it overwhelms them. That is why I have come to advocate that we create plenty of information and tools that deal with just the basics—of course, I call them fibroBASICS.
First of all, fibroBASICS to me means just what it sounds like: what are the usual, every day things I have to do to manage FMS. Among “my bag of basics” is making ONE change at a time. I know that if I make more than one change, if I go into a flare, I have no way of identifying which change caused, or at least contributed to, the flare.
So, going back to my fibroBASICS, I know that recently the only change I have made in medications or supplements is the addition of an antibiotic for a Urinary Tract Infection (UTI). Granted, the UTI alone could have caused the flare, but I had been battling the UTI for a bit before I started the antibiotic. The UTI alone was causing me not to feel as well as usual, which I had duly noted.
Next came my first antibiotic. The first antibiotic did not increase how badly I was feeling from the level I had noted from just the UTI. When I had my follow-up appointment, however, the UTI was not entirely gone. That is when my doctor decided to go with a different antibiotic.
Within an hour or so of taking the new antibiotic, my pain was through the roof! The muscles in my hands, arms, and legs began pulling, hurting, and burning so badly—it was definitely a significant increase in pain! Of course, this could have been a fluke, so I reserved judgement, until I took the second scheduled dose—then I was sure! Every time I take a dose of this particular antibiotic, I have had the exact same increase in pain.
The increase of pain of course has increased my overall stress, made me more tense, and has caused me to not rest as well as usual. These three factors equal a Fibro Flare for me, every time.
I want to stress a few points:
· First of all, you cannot know what causes a flare if you make more than ONE change at a time.
· Secondly, similar items may cause you to react differently, as demonstrated by the first antibiotic not causing an increase in by FMS pain but the second one certainly did.
· Thirdly, regardless of the “science” behind it or not behind it, for me I have identified that this antibiotic is an issue. After all, we know that FMS varies from person to person, thus the causes of flares can vary from person to person.
So, can antibiotics cause Fibro Flares?
Without getting into the science behind it, I have identified yes, they can—but they do not always do so.
More importantly for me, I have identified that one particular antibiotic certainly causes an increase in my FMS pain.
I still advocate learning as much as you can about FMS, but I do understand how badly FMS makes you feel and there is a lot of information out there to cover, some of it even conflicting. So, I understand if you do not pour over all the research and updates.
I do want to stress, however, regardless of how much you read or do not read about FMS, always stick to your fibroBASICS. Make one change at a time so you can identify what causes your Fibro Flares. Hopefully, this will help you avoid them in the future.
There are a few people in the Fibro World that I trust implicitly, and as I have often said, Celeste Cooper is one of them. Yesterday she sent me the link to her latest article regarding the state of affairs for those requiring pain medication. As with anything she puts out, I need not add to it in any way. I do want to point out, however, that it is far more than just excellent information. It is actually a list of things you can do to help you with your situation. You could not purchase better advice from a more informed person. Here is the link: Guidelines for Pain Warriors
I do want to share my own feelings on this issue:
· I am appalled that pain management has essentially been set back by 20 years or more by the current rules.
· I am appalled that the practice of medicine has gone from the doctor’s office to the legislature’s unqualified opinions.
· I am appalled that Celeste has needed to create the list in her most recent post.
· And of course I am appalled, but also so very sorry and angry, that this is yet another burden that those with FMS—all with chronic pain actually—are having to take upon themselves.
Thank you Celeste Cooper for stepping up yet again, and personally sacrificing your time to put this together for those in need.
LIVE your fibroLIFE to the fullest!
Book Review: TAKE BACK YOUR LIFE Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse, Fibromyalgia Coach
TAKE BACK YOUR LIFE
Find Hope and Freedom from
Fibromyalgia Symptoms and Pain
by Tami Stackelhouse, Fibromyalgia Coach
I have been familiar with Tami Stackelhouse, via her online presence, for several years. I am very happy to see her many accomplishments and not at all surprised that she came up on my radar as I began researching the latest books to help those with Fibromyalgia (FMS).
One of the main things I most liked about this particular book is that it does not bombard the reader with an explanation of FMS that is so in depth that one needs a healthcare background to understand it. In fact, I found that she understands what I have been shouting for years now to anyone who will listen: We who are blogging, writing books, etc. are overwhelming people who are looking for help with their FMS and the reason they are looking for help is because they are already overwhelmed because they have FMS! I was thrilled to see that Tami acknowledges the need to have a basic understanding of FMS, which she explains very well, as well as acknowledging that readers are not reading her book to become an expert on the medical-end of FMS but to find help in getting better!
Will this book help you find help in getting better?
Well, while this goes without saying, I feel I must say that if you are looking for the proverbial “magic beans”, they are not here—but they are not ever going to be found anywhere! No matter what book you read, doctor you see, treatment you try, etc., you will not find that sort of easy, magical answer. That said...
Tami does a fantastic job of balancing hope and realistic expectations in this book. She fully explains that many factors determine just how much you can improve, including how bad you are to begin with, how long you have been as bad as you are, and how much effort you put into getting better. While she does emphasize the “how much effort” aspect, she does not do so in a condescending way, making you feel guilty if you do not improve to the same level she has, so do not shy away of this book for that reason.
Tami has organized the book well, comprehensively covering the identified goal while keeping the book relatively short, given the vastness of the subject. She covers traditional medicine as well as alternative medicine, and goes above and beyond providing links to worksheets or tools she has created to help you with the actions she suggests you take, and much more.
Most effective to me, however, is her ability to use examples from everyday life to explain her points. These comparisons, or metaphors, stick with you, aiding in remembering what she has told you, keeping it straight, and applying it to your life. This method makes it an amazingly fibro-user-friendly self-help book. Again, she “gets” that readers are already overwhelmed and have bought the book for help. This book, if utilized as intended, certainly delivers.
On my “Fibromyalgia Made Simple” scale, I give this book a 10!
Tami Stackelhouse encourages hope and healing as a coach, author, and founder of the International Fibromyalgia Coaching Ins...titute. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style help women with fibromyalgia take back control of their lives.
Healthline named Tami’s blog as one of the "15 Best Fibromyalgia Blogs of 2015" for its quality and contribution to the fibromyalgia community. Tami is also the author of the international best-seller "Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain."
Visit Tami's personal blog at www.MyRestoredHealth.com or the Institute at www.FibromyalgiaCoachingInstitute.com
I remember being a pre-teen and experiencing horrible pain “down there” that I really did not know how to describe. That did not matter, however, because I was not going to tell anyone about it—ever! I had never heard anyone else talk about pain “down there” unless they were talking about “those women”—you know, the ones who did “bad things” and did not “take care of themselves”.
Now I was certainly not brought up in a house where talking about “down there” or sex was taboo, but regardless, my lips were sealed—until I was in my forties! Even then, I did not talk about it. Instead, I wrote about it—in my fibroLIFE Daily blog.
Fibro Secret three for me: Vulvodynia
Once again, I was hurting in a place and in a way that I was just not comfortable telling anyone, but I was determined to have some answers, so I turned to the only friend I could share such a secret with: Google. I entered the phrase “vulvar pain”, Google did what Google does, and once again Google showed me that I was not crazy and I was not alone. I was one of the unlucky ones experiencing Vulvodynia.
Excerpt Below From www.mayoclinic.com
Vulvodynia (vul-voe-DIN-e-uh) is chronic pain in the area around the opening of your vagina (vulva) for which there is no identifiable cause. The pain, burning or irritation associated with vulvodynia may make you so uncomfortable that sitting for long periods or having sex becomes unthinkable. The condition can go on for months or years.
If you have vulvodynia, don't let the absence of visible signs or embarrassment about discussing the symptoms keep you from seeking help. Treatment options are available to lessen your pain and discomfort.
The main vulvodynia symptom is pain in your genital area, which can be characterized by:
The pain you experience may be constant or occasional and can last for months or even years, but it can vanish as suddenly as it started. You may feel the pain in your entire vulvar area (generalized), or it may be localized to a certain area, such as the opening of your vagina
I had certainly learned about Vulvodynia in nursing school, but all I can imagine is I had not had any symptoms for a while at that time so I did not put two and two together. In fact, I do not think I ever came across the term again until Google showed me. Also, obviously the symptoms listed could be from other things, such as a Urinary Tract Infection, a Yeast Infection, etc. I had always spoken up when I felt the symptoms fit a UTI, and once I was older, I had sought care also when the symptoms fit a Yeast Infection.
Rarely did I actually have a UTI, however. Nor do I ever recall being diagnosed with and/or treated for an actual Yeast Infection. I do know I was given antibiotics for a UTI several times since obviously “something was going on” in spite of the negative test results. As I got older and had to see the doctor about so many symptoms which, once I was diagnosed, almost always ended up being attributed to my Fibromyalgia, I just dealt with the symptoms myself rather than discuss yet another thing with the doctor.
Vulvodynia, however, is not always as simple as UTI-type symptoms, and at times it certainly was not for me. I would have times, in public, such as when giving a lecture or talking to my mother-in-law, when suddenly I would have a sharp, spasmodic, burning pain just hit me “down there” from out of the blue. Over the years, I have become pretty good at not showing just how much pain I am experiencing, but I have never learned to totally cover this one up. When whoever I was with would see the look on my face and say, “Oh my, are you okay? What happened?” I would sort of smile and laugh it off with something like, “Oh just one of the many odd fibro-spasms I have to live with.” Then I would find an excuse to be by myself to deal with the pain as quickly as possible without being too obvious that the pain was “down there”. That is the kind of day I was having when I finally turned to my friend Google.
In the years since that day, my friend Google and I check out the phrase “Fibromyalgia and Vulvodynia” every so often. Each time, we come across more and more information like the following excerpts:
One of the most painful effects that sometimes happens in women who have fibromyalgia is a disorder known as vulvodynia.
Women with vulvodynia are 2 to 3 times more likely than other women to suffer from other chronic pain conditions, such as IC, IBS, or fibromyalgia, according to results from a meta-analysis of studies pertaining to that issue, published in the July issue of Obstetrics & Gynecology
The examples could go on and on, but you get the picture: More and more, Vulvodynia is being linked with Fibromyalgia. Apparently, more and more women are speaking up about this Fibro Secret of having pain “down there”. I am glad to be one of them, especially if it will help someone else. But for those of you still keeping the secret, I do not want you to feel badly. I wrote about this for the first time probably four years ago. I said the word out loud in a conversation with my husband for the very first time just this week. I understand how hard it can be to share your Fibro Secrets, but I know that if you really need to, you can do it. Sharing an article like this or information from online or a pamphlet might be a good way to start.
Several years back, I started noticing the sounds of music when I was putting my make-up on. I felt silly when it suddenly occurred to me that it was coming for the upstairs apartment we were renting out at the time. Our young tenant and friend loved his loud music. Relieved that I was not hearing things, I gave it no other thought--until the apartment was empty but I was still hearing music.
A very close family member is schizophrenic, so you can imagine what I immediately feared: I was truly scared--scared silent! Most of my life I knew I was not well, yet I was in my thirties before finally being diagnosed with Fibromyalgia. I knew the, "This one's problems are all in her head look..." all too well. Those days were finally, mostly, behind me and I was determined to keep it that way, so I remained silent--but the music did not.
I continued to hear the music almost every time I put on my make-up. I was also hearing it when I would try to go to sleep as well as when I was trying to concentrate on what people were saying to me or when trying to focus on television or movie dialogue. I was also no longer always standing in the same place when I would hear the music. It was playing in my head anytime and anywhere it pleased. Sometimes I could identify a song, other times just certain instruments. There were also times when the music would be just low enough that I could almost make out what it was, but not quite. That was especially frustrating for me.
One especially frustrating morning, I decided to take a chance. I Googled "I am hearing music when none to be heard." I am not sure what I expected exactly, but I was pretty sure it was going to involved words like mental, crazy, etc. Thankfully, I was wrong! Instead the word that came up was familiar to me but not in the vein I had expected. It was Tinnitus! "Musical Tinnitus" to be exact!
I had suffered from Tinnitus my whole life but I only knew it as ringing in my ears. I was aware that some people heard roaring, buzzing, or even whistling, but for me, it had always been just a ringing. In fact, it was rare if I did not have ringing in my hears at one degree of loudness or another. I had been told that part of it was the medications I took, but since the Tinnitus came before the meds, it was mostly identified as part of my Fibromyalgia. In fact, some statistics say as many as 75% of those with FMS also have Tinnitus.
Relieved, and with a hard copy of the information in hand, I finally told one of my doctors what I was experiencing. Thankfully we have a solid, mutually respectful relationship because the glance he gave me over the spectacles placed lowly on his nose was speculative, to say the least. "I have never heard of Musical Tinnitus!" he said. Laughing, I said that if I had not found many legitimate, reputable articles about many other people suffering from it, he still would not have heard of it--at least, not from me!
Several years have passed since my big reveal, and I have met several other people who also are hearing music where there is none to be heard. I have even had discussions about it with a couple of specialists, and they were unaware that Tinnitus was so prevalent in those with FMS. Proudly, I told them that my life's motto is, "If you're gonna be a bear, be a grizzly!" therefore, I did not just hear ringing, buzzing, or roaring! No, I had a band in my head--sometimes even a whole orchestra-- and most of the time I enjoyed their musical selections! They laughed, which is what I intended. Yet again, I have found that my sense of humor is my best coping mechanism when it comes to LIVING my fibroLIFE. I am especially glad--and relieved--that I am able to laugh about this particular Fibro Secret!