I could tell you that I appreciate how thoughtful and well-researched Kathy is, or I could tell you that she challenges me to think about issues I might not otherwise, but instead I will just share with you her post. Be sure to bookmark the link to her blog. She is already well on her way there, and I know she would appreciate a visit from you. Enjoy!

Health Care Rumors

My Experience

I was in Indianapolis last week and saw something that totally amazed me. A group of at least fifty people protesting on the sidewalk in front of my hotel. I didn’t have my glasses on and I couldn’t read the signs so I sidled up to one of the door attendants and asked what was going on. “They’re protesting health care reform.” WHAT? Why in front of the hotel? “Because it’s illegal to protest in front of the capital” which is right down the street from where we were staying.

I decided to take a closer look and wandered closer to the protestors. The signs read things like “There is NO free health care!”, “Don’t take my Medicare from me!” “I’ll KEEP my doctor THANK YOU”, “NO MORE TAXES!” And other things that made me shake my head. Sorry, don’t remember them all but I do remember I was pretty aghast by the misinformation.

I had questions to ask so I stepped up the pace from wandering to purposeful…which is exactly when my husband started steering me in the opposite directions. He’s a federal employee and he knows me. He’d prefer I didn’t start anything in full view of his colleagues who were all milling about the lobby ready to go to dinner. I don’t blame him.

So I didn’t get to ask why these people were protesting, or more to the point, who had pushed their buttons and fed them some, as far as I could see, misinformation.

I believe we need health care reform. I appreciate Fibrohaven allowing me to share my opinions on the subject. Actually our Founder of Fibrohaven Support Foundation, Blogger, Writer and Holistic Health Advocate (I stole this off her Twitter page) refers to me as an “Information Savant” because I blast her with so much (usually relevant, in my defense) info…which I suppose is a compliment?

My Source

I do tend to dig around a lot for information, but I didn’t have to go far, in this case. Health care advocate (full disclosure: she was my advocate and I was able to receive disability retirement and health insurance because of her work. So I’m rightly biased.) Jennifer Jaff, of Advocacy for Patients with Chronic Illness, Inc has already done the research and blogged about her concerns for health care reform here. There isn’t much (if anything) about healthcare that she doesn’t know or can’t find out.

The Cliff Notes Version

Those people in Indianapolis were wrong. Public opinion is being swayed by rumors such as all our taxes will increase. If you make over $250K, it’s a possibility…everybody else, not likely. And health care reform will not force you to change doctors or insurance (as Jennifer says; “Poppycock!). Medicare is not going to go away and it appears that the prescription “doughnut hole” is going to be reduced. So there!

Who has been spreading the rumors? Some fingers point to Insurance Companies and “Big Pharma”. Others at the “rabid right”. The usual suspects, but it doesn’t really matter; the point is that these rumors are persuading the public (those folks in Indianapolis) that health care reform is a bad thing. And if the bills are going to make it out of Congress and onto the Presidents desk, somebody has to let our representatives know that we agree that health care has to be reformed.

There are a lot of good things going for the bills that have made it to Congress; coverage of pre-existing conditions, caps on out-of-pocket costs, and insurance companies will no longer be able to drop people because of health issues for instance. They are still hammering out how it gets paid for, but if they allow a public option “the Commonwealth Fund has issued a report that says that we will save $200 billion over ten years with a public alternative.” And the President will not support anything that is going to add to the deficit. So we can hope…

Do you care?

Why would you care? Health Care Reform affects everyone on some level. Especially those of us with chronic illnesses. While they aren’t addressing chronic illnesses specifically (you should see Jennifer’s comments on Facebook when she was trying to get an answer out of the white house!) however a cap on out-of-pocket expenses would be a good thing.

Why not keep an eye on it? Watch what is happening. Pay attention where you get your information. Don’t be like those people in Indianapolis. And make your opinion and your needs known. You can contact your representatives here.

What do you say to your representative?

Think about it for a minute. Why do you care? Express yourself. In my case my 25 year-old daughter has interstitial cystitis (which is in some way comorbid/related to fibromyalgia) and no health insurance. (She’s gone “off the grid” of health care. I won’t go too far into that, but I would prefer she was at least monitored!)  I have a sister-in-law in a similar position. I have a friend who had to declare bankruptcy when her son had leukemia, even though she had insurance. I know too many people like this. And dammit, my representatives are gonna hear about every last one of ‘em!

You may not agree that health care is a right, but the current situation cannot be defended and should not be maintained. The status quo will continue if Congress does not do its job. So give ‘em an earful!

Yes, I can! I am honored to say, I have been asked by Everyday Health.com to become their new featured Fibromyalgia blogger. It has been in the works for sometime, and I have been quietly posting for a few weeks now, but I have held off announcing it until their new blog software and redesign goes live. Unfortunately there have been delays, and since the link to my blog will remain the same, I have decided to go ahead and share my happy news with all of you.

Fibromyalgia Health Haven is the name of my Everyday Health blog. I will be contributing an article once a week, most likely every Tuesday. The articles there will still have my personality, but will be slightly less conversational. Where this is my happy place, Everyday Health will be more like a place of business. A few of the posts there now are shared here, but starting this week forward, each post will be unique on Everyday Health. I will probably do as I am now and give you a little heads up and nudge to my posts there, or if you are a tech savvy reader you can add my new blog to your reader and be notified of my new posts that way.

I will also update you when the redesign is complete. They are working hard on building and developing a clearer Fibromyalgia community, with more information and resources. It is a great and growing site. And if you register with them you can start your own member blog if you are interested. I have said it many times before, writing is therapeutic, and I recommend it to everyone living with chronic illness. But if you are considering starting a blog through Everyday Health, I advise you wait until the new blog software is up and the redesign complete. Their current software is not very user friendly.

I am very happy and excited to have been asked by Everyday Health to be a featured blogger. They found me here on Fibromyalgia Haven, and felt I have a strong enough voice and write interestingly enough to be a featured part of their health community. Is there a greater compliment? I am honored, and look forward to contributing my patient perspective to the Fibromyalgia resources on Everyday Health. I hope you will visit me there like you do here. Thank you all for supporting my voice here, and contributing to this opportunity for growth. You inspire me!

P.S. Today’s EH post is on working with Fibromyalgia. I would love it if you would leave a comment over there with your thoughts on the subject. Thanks!

Fibromyalgia is such a bitch! Just go back and read my last post written on a good day when I was feeling lucky and supported. How dramatically different is this post. Don’t get me wrong. It is not that I am all of a sudden sad and hopeless, I am just once again humbled by the overwhelming nature of Fibromyalgia. I was just given a very firm and intense reminder of the unpredictable and debilitating status of my health.

Today is a new day, the start of a new week. The mirror is kinder and gentler today. Everything in my life that was put on hold last week is still here this week. My blog! Oh how I miss my blog on the days I am down and out. It is my lifeline. Those of you who left comments – even though I did not reply to them, they really helped me feel connected during my flare – THANK YOU!

So, now to regain my momentum. First thing, now that my brain is starting to function again, is to make a list of all the things I want to accomplish. Second, remind myself to take it day by day. No pressure, just keep moving forward and progress will happen. Third, honor my limits. It is so easy once you get on the good side of a flare up to try and make up for all the time lost. I am not going to do that. That time is gone, I cannot get it back, and trying to would only stress my body and possibly send me back in to a dark hole like last week.

Lastly, I am going to remind myself that I am so much more than my pain and fatigue. It is a part of who I am, not all I am. Fibromyalgia took last week away from me, but this is a new week. I will continue to work towards progress in all areas of my life, because yes, even though my blog is all about Fibromyalgia, my life is not. Seems weird that I have to remind myself of that, but then if you have ever been through a flare, you know exactly what I mean.

As each meeting does, last night validated all of the work I put into organizing the group, because each meeting and each interaction rewards me, supports me, and encourages me. I feel blessed and honored to be a part of the group, and proud that I played a part in bringing us all together. After each meeting, members are asked to rate the meeting and leave a comment about their experience. I would like to share with you a comment left by a new member attending her first meeting.

Dannette called the group “a bunch of scientists” once and that’s a pretty apt description. Very rarely have I ever run into people who were so interested in learning without having a (well at least I didn’t sense one…) hidden agenda. The people were kind and generous with both listening and talking and the interaction is a lot of fun. It is very obvious to me that Dannette nurtures this group and puts a lot of careful thought into how to best meet the needs of the members. The people who have joined the support group but have not yet attended a function are really missing out. This truly is a support group.

 

Can I tell you how happy this comment made me. Of course I appreciated what she wrote about me personally, but it was her overall impression of the group that pleased me the most. She sees the group as I do – kind and generous people who respect and support each other, and who are actively interested in improving their lives. We are a realistic bunch and recognize that there are so many layers to Fibromyalgia, and each book we share, topic we discuss and positive results we report is just a part of a piece of this million piece puzzle. But together we are a much greater force than each of us is alone.

A group like this does not just happen. First it takes someone to decide to make it happen. And that someone needs to be commited – despite their own health issues – to nurture the group and put “a lot of careful thought into how to best meet the needs of the members.” But that is only the beginning. Then people need to join the group. And then the people who join need to trust their instincts and honor their need for support by participating. And when all those pieces come together, a night like last night happens – a night of sharing and caring and community.

I can’t tell you how much I wish I could create a group just like this for each and everyone of you. Everyday in comments on my blog, on Twitter, in message boards, I see the need for more connection, more support and more interaction for people suffering with Fibromyalgia and other invisible illnesses. My heart literally aches with the need to help. I feel like it is my purpose, and nights like last night reinforce my commitment.

So what am I going to do about it? I have been brewing a plan for awhile now. It is a slow brew due to the faulty filter and machine I call my brain, but it is brewing non-the-less. My blog Fibromyalgia Haven is just the beginning of my passion to create a Fibromyalgia community for everyone, like the small FM community I am lucky enough to have created here locally. I am lucky to have this group, but the key is, I created my own luck.

“Diligence is the mother of good luck.” – Benjamin Franklin

“Luck is what happens when preparation meets opportunity.” – Seneca

“I’m a great believer in luck, and I find the harder I work, the more I have of it.” – Thomas Jefferson

And that is the truth about luck. The harder I work, the luckier I get. I am here in this place, poised to heal and to help others heal, because I have worked for it. I am going to continue to work at it. It is the commitment I make to myself and to anyone who wants to join me on my journey. You are all invited, but it is up to me to make sure the journey reaches everyone, even those of you so far off the beaten path that you are certain no one will ever find you or care that you are there. I care! And as my wise friend Hillary reminds me often – you are loved, and you are not alone.

In my previous posts I listed the main social networking sites (part 1) and group forums (part 2) available if you are looking to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on general resources available, like blogs and websites. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.

Blogs

If you are reading this post then you are clearly already a reader of blogs and quite possibly have several you read and may even maintain one of your own. Blogs are a great way to share information and ideas. Fibromyalgia Haven has become my favorite place to go everyday. I have the chance to express myself here like I can nowhere else. My mental and emotional outlook is vastly improved since I began writing here, and I am constantly researching for new things to write about and share so my knowledge and understanding of Fibromyalgia has increased tremendously. I am proud to call myself a blogger!

I could not begin to list the multitude of Fibromyalgia blogs out there. I think I find a new one each day. But I will list several great sites which contain blog directories and make it easier for you to search a specific blog category. Here are links to the ones I am most familiar with followed by a description taken from their own site:

Alltop – Alltop is an “online magazine rack” of popular topics. We update the stories every hour. Pick a topic by searching, news category, or name, and we’ll deliver it to you 24 x 7. All the topics, all the time.  (P.S. – Have you noticed my Alltop “best of the best” badge I proudly display on my sidebar? Cool, huh!)

Blog Catalog – BlogCatalog is more than just a social community for bloggers; we are one of the largest blog directories on the internet. Whether you are looking to search blogs, connect with bloggers, learn more about blogging, or promote your own blog, BlogCatalog is for you.

BlogHer – The community for women who blog.

Bloglines – We track your favorite news, blogs, weather, and classifieds so that you don’t have to.

Delicious – The tastiest bookmarks on the web.

Digg – Digg is a place for people to discover and share content from anywhere on the web.

Google Blog Search – (Google needs no description.)

Networked Blogs – Blogs are social networks. Are you networked yet?

WordPress Blogs – Just Another WordPress Weblog

Yahoo 360 – A place that’s all about you to share with friends and family.

General Resources for Education and Information

Many of these sites have monthly newsletters you can sign up to have their top news e-mailed directly to you. It is a great way to stay on top of current events and news in the ever-changing Fibromyalgia community. 

National Fibromyalgia Association -The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

Fibromyalgia Network – We’ll keep you current on fibromyalgia treatments, coping tips, and research to enrich your life.

Fibro Center – A community of education, support, and understanding for people with Fibromyalgia. (I hesitated to list this site as it is sponsored by Pfizer, but if even one person finds it useful then it is worth putting my personal bias against Lyrica aside.)

Fibro and Fatigue Centers – Whether you have been diagnosed or misdiagnosed, whether you have been searching for years to get your life back to “normal” or you are just starting to feel it slip away – there is help and hope!

Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia

FibroTalk – Online Community Support

We Are Fibro – The Social Support Network for those Living with Fibromyalgia

Please feel free to add your blog or favorite site in the comments.

27/30

Social Networking Sites

Twitter – The day I wrote Conversation on Isolation I hopped onto twitter and posted the following comment: “Twitter is a great way to combat the isolation of Fibromyalgia and chronic illness. Bravo to everyone who makes the choice to reach out.” Of the 258 comments I have written on twitter, this one received the most responses and re-tweets (reposting of my comment by fellow tweeters to help spread the message). Twitter is a great way to connect with other people living with Fibromyalgia and chronic illness. Last week I left a brief tweet that I was not feeling well enough to participate on twitter, and I received many well wishes and encouraging responses. It moved me deeply. I highly recommend giving twitter a try. Here are a few tips.

1. When you create your profile keep in mind the kind of people you want to connect with. If you have Fibromyalgia, are a passionate reader, love to knit, and are living a gluten free lifestyle, include all of that in your profile and it will help others with similar interests find you.

2. Upload a photo into your profile. It doesn’t have to be a photo of you. It can be a photo of an eggplant if you want. Go crazy. Be original. People are more likely to follow you if you have an image in your profile, and once you get active and start tweeting they will immediately identify you by your photo.

3. Make your tweets meaningful to your intentions. If you sign up and start tweeting about the tacos you made for dinner, that may not interest any of your followers, but if you include info on a great gluten free taco seasoning you used, then you are sharing meaningful and interesting information that will likely start a conversation.

4. Search other tweeters to follow with similar interests by using twitter search and keywords – ex: Fibromyalgia, #Fibromyalgia. The hashtag (#) placed before a word helps to organize the published updates which in turn helps with your search.

5. Join a Twibe. For every area of interest, there is a twitter group to join, and if not – start your own! I belong to twibes for Fibromyalgia, gluten free, bloggers, and writers. It is another great way to find people to follow and start making connections.

6. There are many, many twitter applications out there to help you. I have no specific recommendations, but if you decide to join twitter just do a quick google search to help find them. How is that for vaguely helpful!

7. Follow Fibrohaven on Twitter! Come on now. You know I am a lot of fun and I sometimes even have something useful to say!

Facebook – Most of us know facebook is a great way to reconnect with old friends, and to stay in touch with family members, but there are also many groups and causes on facebook to join.

I belong to Fibromyalgia Awareness. It is a global group with 12,877 members and over a thousand discussion topics. You can always find a conversation going on and I have met several women who I now call friends from this group. If Fibromyalgia Awareness is not a good fit for you, there are several other groups you can join like I Will Not Let Fibromyalgia Run My Life, or Fibromyalgia Sucks. 

There are also several blogs you can follow on facebook including Fibromyalgia Haven.  Each blog has its own page and message board so you can dialog with the blog’s author and other followers. It is a great way to create small intimate communities.

And if you just want to get away from Fibromyalgia for awhile and connect with people that love In-N-Out burger as much as you, there is a group for that too! In addition to Fibromyalgia Aware, I belong to a writers group and a group for fans of my favorite author (T.C. Boyle) just to name a few. Facebook is worth joining just to explore all of the possibilities. 

Meetup – Meetup is a great resource to find events and groups in your own community. Their motto is Do something • Learn something • Share something • Change something. Everyday someone is creating a new group on topics from Fibromyalgia and CFS, to book clubs and clubs for beagle owners, groups for personal growth and the law of attraction. You name it, there is probably a group for it.

Meetup is the site I use to organize my support group. For a small annual fee we have a wonderfully organized website with a message board and calendar to list our events. So even members who are never physically at a meeting can contribute and participate. I am also regularly being contacted by other meetup organizers and members looking to participate in a meeting or sponsor an event. Meetup is an excellent resource. Currently there are 78 Fibromyalgia meetup groups worldwide – 57 Chronic Fatigue, 75 Chronic Pain & 52 Chronic Illness. Maybe there is a group close to you!

Myspace – I am not active on myspace, but I did a simple search that came back with nearly 10,000 pages related to Fibromyalgia.

So you see, there are a lot of options just within these four examples. The best way to research them is to go ahead and create a personal profile so you have access. There is no risk or cost to you, and if it turns out not to be the environment for you, you can easily delete your profile. If social networking is not for you, maybe an online forum will be. Check back tomorrow for my post on the multitude of forums out there.

19/30

I am taking a writing class. It is a six week, creative nonfiction class on personal essay. Here is a short description of personal essay from my class syllabus:

In his introduction to the definitive anthology on the subject, The Art of the Personal Essay: An Anthology from the Classical Era to the Present, essayist Phillip Lopate writes, the personal essay “should certainly be celebrated, because it is one of the most approachable and diverting types of literature we possess. The hallmark of the personal essay is its intimacy…. ” He goes on to explain, “At the core of the personal essay is the supposition that there is a certain unity to human experience.”

My main purpose of taking this class is to better my writing skills for my blog. So much of what I share on Fibromyalgia Haven is my personal experience of living with FIbromyalgia, and I want to continue to do so in a manner that you can relate to and that you will enjoy to read. 

So my first assignment was this: “Choose a “first” in your life—a first kiss, a first communion, a first parking ticket, a first marriage, etc.—and write up to 500 words describing what happened and how you felt about it at the time it was happening.”

I chose to write about one of my favorite childhood memories; the first time I saw snow. I am sharing it with you as a way to document my growth as a writer and also because this is my happy place so I want to share a happy memory with you. This is an early draft of an idea I plan to eventually expand into a long essay.

First Snow

My mom parked the car in front of the café and I could barely wait to jump out. It had taken us two days to drive the 16 hours from Huntington Beach, California to Soda Springs, Idaho. Sixteen hours of carsickness and arguing with my sister over the front seat. It was a lot for a five year old to endure. I could see my dad through the big paned windows of the café and my excitement grew. Two months prior he had come to Soda Springs by himself to find a job and a place for us to live. He was sitting in a booth smiling at us, and I could not wait to run to him for one of his fierce bear hugs. I had missed him very much.

Maria Pace-Wynters

As I opened the car door I was immediately thankful for the new red fur coat my mom had bought me. It was thick, bulky and unfamiliar, and it caused me to move awkwardly as I got out of the car. The air was cold and brisk on my face, forcefully demanding my attention. My sister ran past me and raced into the café, anxious to be reunited with our dad, but I just stood there on the sidewalk disoriented.

My nostrils hurt with each inhale. My hands and fingers began to sting. It was cold, REALLY COLD. Then just as quickly, the cold was eclipsed by something even more foreign – a soft and gentle feeling of wetness brushing against my face. I paused there, confused and mesmerized.

I stood on the sidewalk with my arms out to my sides and watched as giant white flakes floated down from the sky and landed gently on my extended arms. So beautiful! What is this? The contrast of the white flakes against my red coat gave me the impression that the flakes were landing only on me and nowhere else. It was pure joy! I remember standing on the sidewalk, looking at my outstretched arms and spinning slowly. What was this beautiful gift that was welcoming me? It was a pure moment with no fears or uncertainty, just bliss.

And then I heard my mom laugh and the trance broke. She was standing with her hand on the door to the café laughing at me. It was nice to hear her laugh again. It had been a while. “It’s called snow silly,” she said. “I told you we were moving to a place where it snowed.” The day my mom told me we were moving to a place where it snowed, it meant nothing to me. Two months later as I stood there watching the flakes land and disappear over and over again, I knew my life was going to be different. I ran to my mom and took her hand. As we entered the café and our new life, I looked back at the snow with wonder and an expectancy of the new discoveries that lay ahead.

10/30

When I got up this morning my first thought wasn’t “I wonder what new and exciting thing happened in the world of Fibromyalgia overnight.” No, it was more along the lines of “Mmmm, coffee.” and “Do I want eggs or cereal for breakfast?” “How cool is it that Rice Chex are gluten free so I can have cereal for breakfast!” “Shit! I better get that check in the mail today!” Nope, nothing Fibromyalgia related until it was time to sit down and write. So now maybe I am thinking that to successfully pull off my 30 in 30, I may be writing some posts not specific to Fibromyalgia, but more specific to the mundane nature of my thoughts. Hope you all don’t mind!

I guess in a way you will get to know me better. For example you now know I swear occasionally! I have actually considered on several occasions starting another blog dedicated to my thoughts on life in general – politics, news, pop culture, stupid people, etc.. I even had a tag line in mind – “This is my space, these are my thoughts, so SUCK IT!” It makes me laugh every time I think of it, but I could never keep up that level of angst. It is just not me. It is obvious by the tag line that I am anticipating backlash to running my mouth off, and why would I ever willingly invite that kind of stress into my life? I will just keep writing those kind of posts in my head! An internal monologue on life. Now that is a great title!

So that is my little dilemma for today. How to keep up the integrity of my blog and complete my writing assignment without forcing the content? I will figure it out. It is really more of an opportunity than a dilemma. It reminds me of a great excerpt from Steven King’s memoir On Writing:

I had been playing with the idea of writing a little book about writing for a year or more at that time, but had held back because I didn’t trust my own motivations – why did I want to write about writing? What made me think I had anything worth saying?

The easy answer is that someone who has sold as many books of fiction as I have must have something worthwhile to say about writing it, but the easy answer isn’t always the truth. Colonel Sanders sold a hell of a lot of fried chicken, but I’m not sure anyone wants to know how he made it. If I was going to be presumptuous enough to tell people how to write, I felt there had to be a better reason than my popular success. Put another way, I didn’t want to write a book, even a short one like this, that would leave me feeling like either a literary gas-bag or a transcendental asshole. There are enough of those books – and those writers – on the market already, thanks. (King, 8-9)

As startling as it was for a moment to recognize that the great Stephen King (author of an uber number of novels) doubted his own purpose of writing a book on writing, once I digested it, it almost came as a relief to me. On a much less prolific scale I get it! I had those same thoughts when I first began Fibromyalgia Haven several months ago, and I am having those doubts again as I consider an alteration of format. I do not want to be a gas-bag or asshole either!

So bear with me as I navigate these new waters. My content is still very important to me and I am going to be diligent about finding my new balance. This blog is and forever will be dedicated to Fibromyalgia, but after reading Stephen King’s book on writing, I realize it is okay to add a little personal flare here and there. And I promise, I will keep the swearing to a minimum.

3/30

It started with my blog, which forced me to open up about the fact that I have Fibromyalgia, and about how very hard it is to manage my life sometimes. I feel like I have finally come clean, and that I no longer need to keep up the appearance of the strong, healthy person I once was, and used to pretend to still be. My life feels more honest now. Fibromyalgia Haven has brought me integrity and self-acceptance. And it has brought me a new set of online friends and contacts which I value very much.

Then the support group happened. I think my blog helped prepare me to lead my support group. I don’t think I would be a very effective leader if I was still too ashamed or embarrassed to talk about my health. I take a lot of pride in the organization and planning, and I feel so fortunate to have the ability and desire to help the group grow, learn and prosper. The women in the group are fantastic! Such a smart, fun, friendly group who listen with compassion and share with honesty. Everyone is eager to improve their health which has lead me to do a lot of  research for resources.  My research has been very educational and enlightening, and best of all it took me to the next great thing in my life right now, the Wellness Center.

Initially I went to the Wellness Center to ask them to be a sponsor for our group and allow us to have our meetings there. Shortly after touring the facility I realized the enormous potential the Center had to help me improve my health and my life. And not just because of the classes and fitness expertise that they offer – each person I have connected with there has in some way contributed to the development of my support group – whether it is through contacts, or resources, or simply with encouragement. They are more than just a sponsor for the group, they are an interested and active partner. And it is working both ways. They have referred several people on to me who were looking for resources and information about Fibromyalgia, and I was very happy to help.

Fibromyagia is a part of my life for a reason. I can no longer ignore or deny it. I no longer want to ignore or deny it. Now that I have opened my life to the reality of it, my life has improved. It makes me think of the great Mexican painter and hero Frida. Her life was shaped by the pain she suffered as a result of the tragic bus accident. There is an inseparable duality between her pain and her passion for life that overwhelms her art. Would her art be as spectacular and enduring if not for the accident that sentenced her to a life of unbearable pain? I wonder. Was she meant to suffer so she could tap into her creativity? Much of her art is gruesome in its depiction of her struggles, and yet it was not without hope. 

Viva la Vida is Frida’s last painting. It was finished in 1954, the year of her death. She was bed ridden, highly medicated, and just a shell of her former self. So where did she find the inspiration to paint such a hopeful painting? Maybe it was because she lived her life exactly as she was meant to, working with her disabilities and limitations instead of working against them. Maybe it was because she knew she lived her life honestly and with integrity. Whatever the reason, I admire her greatly. And right now, in this moment, I believe I am on a similar journey to creating a legacy of my own.

Viva La Vida - Long Live Life!