I do not consider it a failure that I meditated for the first week of May, and then let myself get away from it. Instead I think of it as a learning opportunity – a chance to examine my goals and purpose further, and to ask myself some thoughtful questions.

Why did I stop?

The easy answer is – I stopped because I went on a family trip, and with all the travel and socializing it was difficult to find the time. And when I returned home I had a lot of work to catch up on, and support group functions to prepare for. I was busy! I had to prioritize – right?

Yes, these are the excuses I gave myself for why I got away from my meditation practice, but upon reflection they are not very good reasons. Isn’t life’s “busyness” the very thing meditation can help me manage? It is certainly one of the things I am hoping it will help me to manage, so I took a deeper look into my motivation.

Why do I want to continue?

Why is this important to me?

These questions were easier for me to answer, because despite my lack of follow-through, my motivations have not changed: I want to be well. I want to be whole. I want the peace and clarity of mind that comes with the silence. I want the daily charge and reinforcement I feel each time I meditate. I want to be centered and grounded. I want to feel alive and open to the world around me. I want the restoration of body that comes with the soundness of mind.

In her book, Beginner’s Guide to Buddhist Meditation, Christina Feldman states, “Meditation requires patience, openness, and acceptance. Each moment in our life asks for our willingness to greet it as a teacher.”

Patience, openness, and acceptance. I wish all three for my life. Meditation is a path to the life I am desiring. This is why I wish to continue. This is why meditation is important to me.

So with patience and kindness to myself, I begin again. And if I fail, I will begin again. There are no rules, or pressure, or standards. There is only my desire, and my never-ending ability to grow and learn.

Last May I challenged myself to a 30 day writing project. My thought being, it takes roughly 30 days to develop a habit, so for each day in May I wrote a blog post. It was a success on some levels, but I failed at making writing a daily habit.

Writing is a form of meditation for me. I write more than what you see here on my blog. I do not always enjoy the process of writing, but I enjoy it most when I am singularly focused on it and my only purpose is on finishing my current sentence and thought. I love those moments when I am completely absorbed in the act of writing.

“Learning to be mindful and present, clear and attentive is the doorway to a life of depth and joy.”

Mindfulness is something I seek to achieve in all aspects of my life – writing, relationships, work, eating, exercise. I want to be happy and present in what I am doing in the moment, not regretful of my past, or anxious of my future. I want to learn to be present in the now, and find a greater joy in the present. I believe meditation is a path to the joy I seek.

I have dabbled with meditation – taking a group class here, listening to a guiding voice there. Each experience with meditation has been restorative and encouraging, but my knowledge and understanding of it is relatively minimal. So this May I am challenging myself to another 30 day project.

For the next 30 days I am going to explore different types of meditation, and practice meditating for at least 20 minutes each day. My goal over the next 30 days is to learn more about the many styles of meditation, and to find the one (0r ones) most compatible with my needs. I also hope in the process to establish a habit, and continue beyond May to dedicate the time each day to meditate.

“There is no end to the meditative process: it is a lifelong practice that can be undertaken by anyone, regardless of age and spiritual beliefs, and there is no right or wrong time to start on your meditative path.”

I am beginning my meditation journey with a book that is intended to help readers begin a meditative path, Beginner’s Guide to Buddhist Meditation,  by Christina Feldman.

Beginner’s Guide to Buddhist Meditation is a beautiful book, filled with soothing images and helpful charts. Organized in a way to guide the beginner from the basics – how to meditate, when to meditate, where to meditate – through the styles and obstacles of meditation, Feldman’s book opens a simple and straightforward door to meditation. There are no rights and wrongs in Feldman’s meditation teaching, only loving kindness and heartfelt communication.

“Meditative teaching is not an exhortation or demand but an invitation to explore the ways of walking new paths of mindfulness and wakefulness. It is an invitation to discover a deeper well-being and inner richness that can transform every aspect of our lives.”

One of my goals for my journey into meditation is, according to Feldman, one of the central teachings of meditation: to be at ease with the events of my mind and body.

We all know that even in the mildest flare, we can become consumed and overwhelmed by the pain we are experiencing – and even by the pain we are not currently experiencing, but are remembering and anticipating. Pain is a powerful motivator for fear and anxiety. I believe it is possible to overcome fear and anxiety, and I believe meditation can help by teaching me compassion, peace, and understanding.

“Understanding: Central to the Buddhist path is the understanding that we cannot avoid aging, sickness, or death. We cannot avoid all loss, sorrow, and heartache, and the endeavor to do so only magnifies pain. We do begin to see that confusion, agitation, fear, and stress may become optional in our lives.”

Fear and stress are an option? If this is so, I doubt we can just accept that it is. At least for me I know it will take practice to learn to let go of my ingrained responses and accept joy. I want to learn to find the joy that exists with the pain. I believe it is there. I just need to learn how to find it.

“Meditation is not about avoiding or softening the blow of moments of conflict and difficulty that we are bound to encounter during our lives. Rather it is a means to approach these moments with clarity, understanding, and calm.”

Beginner’s Guide to Buddhist Meditation is so rich in thought, context, and instruction, I am certain it will serve my desire to develop a regular meditation practice to reread it several times. It is simple and approachable, but Christina Feldman has packed so much guidance and wisdom into its short 96 pages, each time I open it a new passage jumps out at me. Just look back over all of the above quotes and you can see the richness of concepts and wisdom Feldman shares. It is a great tool to begin my journey into meditation.

Are you interested in learning how to meditate, or in deepening your current meditation practice? Then let me recommend Beginner’s Guide to Buddhist Meditation to you. And fortunately I can do more than recommend it. Feldman’s publisher Rodmell Press has again generously donated a book to give away to one commenter. Just leave a comment, and on May 14 I will randomly select a winner to receive this beautiful introduction to meditation.

Join me on my quest for more mindful living. Through meditation we can learn to find acceptance of our illness and joy in the meaningful act of living.

“In your meditation, as in your life, you will have to choose over and over whether to follow the paths of impatience, judgment, frustration, and complexity, or the pathways of patience, acceptance, balance, and simplicity. Increasingly, you will come to understand that the choice lies in your own heart.”

The valedictorian at my nephew’s graduation gave a funny and moving speech. She had the entire football stadium laughing with jokes about her mixed heritage – her mother is Mexican and her father is Jewish. She apologized to everyone unable to find a seat because her mother had her entire side of the family seated in the home-side bleachers. Such a witty girl, and by the time she changed the tone of the speech she held everyone’s attention.

Her tone changed as she went on to point out and talk about individual students – not the jocks, or the cheerleaders, or the ASB officers though. Her list was filled with the classmates who went mostly unnoticed over the past four years – students who stayed in the background for one reason or another, yet still made up the unique fabric of her graduating class. I found myself in tears over stories of students I had never met, and who maybe even my nephew had never met. She painted such a lovely picture of how each of them were individuals, and they should embrace who they are, and they should all be proud of the contribution they made to their graduating class. Her message really impressed and inspired me.

I woke up this morning thinking about it, and about how it applies to so much more than just her graduating class. I laid in bed thinking about how many of us with Fibromyalgia and chronic illness are like those students who remain in the background. We struggle to participate. We struggle to reach our full potential. We struggle to contribute to our homes, and our jobs, and our communities. Our lives are a struggle, and yet we still are – each of us – uniquely individual and valuable.

It is hard to honor your contribution when all you can see is what you are no longer able to do. It is hard to embrace who you are when all you can do is miss who you used to be. Chronic illness is hard, but as I once heard a very wise girl say, the fabric of our lives would be completely different if just one “student” made the choice not to complete this journey. Have compassion for yourself. Accept who you are. Embrace your individuality and honor your contribution. I do!

I guess I can just say that she is someone I reached out to individually because she was interested in getting involved in something I am doing and reaping great health benefits from, and now the whole thing has blown up in my face. I am just stunned at how my support and good intentions are now being twisted into such ugliness. It goes back to The Law of Detatchment and the lesson I learned there – “Today I will commit myself to detachment. I will allow myself and those around me the freedom to be as they are. I will not ridgidly impose my idea of how things should be. I will not force solutions on problems, thereby creating new problems. I will participate in everything with detached involvement.”

Basically what it all boils down to is I tried to help someone before she was ready to face or accept any changes that would be required of her to take control of her health. She is not ready, and I am perfectly okay with that. I did not and do not judge her, I just let her know that the opportunity is still available to her and that I would gladly go with her (and I am just talking about going to a holistic chiropractor, nothing too scary) to help alleviate her anxiety.

Now I am being accused of not showing her understanding or compassion and of pushing her away. Really the email blind-sided me and blew me away! And this was my favorite line – “Just remember I and many others have FMS and cannot predict how we will feel on certain days.” Okay, really, because I was not aware of that! Seriously, I guess I am a little mad. Now I am pondering how to respond to her, realizing full well that she possibly could read this post before I reply to her email. I am mad and offended. I did miss a call from her one day, and because I did I gave her my private cell number for her to reach me and even that offended her. I am starting to think I just cannot win with her.

But then what does that mean for her future with the support group? She has really enjoyed and benefited from each meeting she has attended and I would hate for her to lose that over a misunderstanding, but I am at a loss of how to salvage this relationship. The last email I sent her was so positive and encouraging and yet she still thinks I am pushing her away. I get the feeling she is projecting a lot of personal stuff onto me, and I am not sure I can reason with her. I am not sure I have the energy to reason with her, because remember, I have Fibromyalgia “and cannot predict how I will feel on certain days.”

I have had members join and leave the group because it was not a good fit for them, and I am fine with that. I have never had issues with a participating member though, so I am at a loss. I know I cannot be all things to all people and still honor my own health, but my every intention toward her was pure, and my head is spinning over her reaction. What to do? What to do? At this point, I really have no idea what I am going to do.

My Favorite Posts from the Last 30 Days

1. I Do Not Want to Think About Fibromyalgia Everyday - This post came on day three of my assignment when I realized the reason I have not been writing about Fibromyalgia everyday is because I do not want to THINK about Fibromyalgia everyday. I really enjoyed this post because I got to shout out loud, “I am more than my diagnosis!”
2. Secrets of My Soul - Every secret of a writer’s soul, every experience of his life, every quality of his mind is written large in his works. – Virginia Woolf. This is a piece from a creative non-fiction/personal essay class I am taking.
3. Conversation on Isolation - This started as a conversation in the comments of a previous post, but I made it into a new post to continue the conversation, and also to applaud the commenter, Kathy, for speaking out and holding me accountable for my word choice.
4. Practice May Not Make Perfect, But it Can Make a Habit - Hope that my 30-in-30 writing assignment will make writing more habitual for me.
5. Things I Love #6: My New Office - My new Fibromyalgia friendly office. Love it!
6. The Law of Detachment - In order to acquire anything in the physical universe, you have to relinquish your attachment to it – and how this applies to me and my support group.
7. Misery Loves Company - Where I proceed to rip apart the most ignorant, inaccurate and judgmental acupuncturist to every treat Fibromyalgia. His article perpetuates every negative and inaccurate assumption about Fibromyalgia and chronic fatigue.
8. My Six-Word Memoir - I have pain, therefore I am. NOTE: I have pain, but I am not my pain. Look for a post soon on “I am…”
9. Fibromyalgia Affects Everyone: An Interview with My Niece - I interviewed my 13 year old niece about her thoughts on having an Auntie with Fibromyalgia and how it affects her. Maybe my favorite of my favorite posts.

Most Informative Pieces from the Last 30 Days

1. Why I Love Yoga, and Why You Will Too - I cannot emphasis enough how much I have come to love yoga and the improvements in my symptoms since I began practicing several weeks ago. This post is my attempt to entice you to try yoga for yourself.
2. New Book on Fibromyalgia – Claims to Fill in the Missing Pieces - Information from a press release I received – not an endorsement.
3. Bloggers Unite for Fibromyalgia Awareness Day - On Fibromyalgia Awareness Day, I shared how some of my fellow bloggers acknowledged the significance of the day on their blogs. Great way to discover some new bloggers.
4. Review: Treating Fibromyalgia Naturally — So You Can Shine Again – From the womentowomen.com newsletter. I found this to be a very realistic, in touch and accurate assessment of Fibromyalgia.
5. Online Social Networking for Fibromyalgia Support and Information - Part one in my series on Fibromyalgia support and information – focus on social networking sites.
6. Online Forums for Fibromyalgia Support and Information - Part two in my series on Fibromyalgia support and information – focus on online forums and support groups.
7. Online Resources for Fibromyalgia Support and Information - Part three in my series on Fibromyalgia support and information – focus on blogs and general resources.
8. Join Hillary for Her Next Teleseminar - I continue to follow and recommend the meaningful work of Hillary Rubin and her inspirational message about embracing your diagnosis as a gift, teacher and blessing.
9. Self-hypnosis for Treatment of Fibromyalgia - Just one more possible tool for our toolboxes.

There were Three Holidays/Days of Observance in the Month of May

1. Are You Aware? Fibromyalgia Awareness Day is May 12 - In 1993, May 12 was designated as the International Awareness Day for Chronic Immunological and Neurological Diseases. The National Fibromyalgia Association (NFA) joined the Awareness Day effort in 1997 and has led the call for increased recognition of fibromyalgia each May 12.
2. In Honor of Every Mom Living with Chronic Illness - Happy Mother’s Day!
3. Take a Minute and Pause - In observance of Memorial Day.

Fun and Mindless Posts I Wrote on What Normally Would Have Been a Down Day

1. 15 Counterproductive, Needless, and Delaying Things I Did Today - I had a lot of fun with this post, and if you have not yet watched the 2 minute video on procrastination, it is a must! Maybe I should move this up into my favorite posts category.
2. Best Chocolate Cake Ever! Just Happens to be Gluten Free – Yummm!
3. It’s a Down Day – Example of a post I never would have written were it not for my assignment. It was day 12 and I was feeling awful, but committed to completing my assignment. Not much of an effort, but much better than giving up!
4. Taking the Easy Way Out – Day 13 was not much better, so I copied 25 Random Things About Me from my facebook page and posted it here. It was the easy way out, but it still honored my commitment. Yea me!
5. Recognize My Wall? – Just another bad day.
6. Another Careless Doctor to Avoid – Found something quick and simple to write about, but that doesn’t mean it is not worth the read.

So there it is, my last thirty days! I am seriously impressed with what I was able to accomplish, and very proud that I never gave up. There were moments – as early as day three – when I wondered “why did I do this to myself?” and I had several loving and caring people in my life tell me to take it easy and not demand too much of myself. It really would have been easy and perfectly understandable to quit on one of the many bad days I had throughout the month, but that is just not me.

Fibromyalgia has taken many things away from me, but I am still the same determined, stubborn and resilient person I have always been. I still have the abilities that made me a top sales rep at my previous job, I just need to apply them in a new and less demanding direction.

You know the saying “objects in motion stay in motion,” well this was my mantra when I was in sales. The more I got out there everyday to visit accounts, the more new accounts and new sales seemed to fall into my lap. Wouldn’t you know it, the same thing happened in the middle of this writing assignment. I picked up a new monthly newsletter that I am going to be writing for, and something else so exciting I have to wait until everything is finalized before I share it with you. Fibromyalgia or not, very cool things can happen if you believe in yourself, honor your passions, and never give up on your potential.

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

From Acupuncture Today. This quote picks up in the middle of an article written by Kaleb Montgomery, DTCM. He is expressing his frustrations over patients he has treated who stop coming, even though they are experiencing benefits. There might be a good message in there if he wasn’t so short sited. I am leaving my own comments and opinions bolded and in parenthesis throughout the article because it is fun and makes me feel good. Feel free to join me!

In another case, a woman with fibromyalgia and chronic fatigue was referred to me because she was not progressing. This woman had so much pain in her jaw and teeth that she was unable to eat solid food. For the last six years, she had only eaten steamed vegetables and tofu pureed in a blender and slurped through a straw. I am not sure why she limited herself to just steamed veggies and tofu, I know that if pain limited my diet to liquid, those two foods would not be my first choice of sustenance (First judgmental comment here. He has charmed me already). As we will see, more likely her outrageously limited food choice was probably a reflection of the mental/emotional root of her illness (Of course she has mental and emotional problems, she has Fibromyalgia after all. What other explaination could there be for her food choice? She is crazy!).

Like the first example, we got great results in just a few treatments. After one treatment, her teeth felt so much better that she was able to eat fresh crispy lettuce for the first time in six years. In our next treatment, she told me that she asked her dentist if acupuncture could help tooth pain and he said no, so she was going to stop treatment even though she had continued to improve this week as well (Okay so the patient is a little short sited as well. Probably what made her an easy target for Mr. Montgomery). Needless to say, I was frustrated and tried to convince my patient that the dentist was wrong because she actually had improved. However she would not change her mind and I did not see her again.

Again, the story would have ended there except that I spoke to the health care provider that referred her to me in the first place. This time the health care provider called me because he was mystified by our patient’s behavior. This patient had come back to them for continued treatment. When he asked why she had stopped seeing me even though it was the only thing that worked, she insisted that she did not want to talk about it. Every treatment she came in and asked, “What can I do to get better,” and he would say “Why don’t you go back to see Kaleb?” She would refuse to talk about it and of course did not call me for more treatment (She sounds more scared and confused to me than mentally and/or emotionally unstable. Maybe they could have gotten further with her with compassion rather than frustration and labels).

For me the most interesting part of this story is not that she stopped coming for a treatment that was working. I eventually came to the conclusion that she was not ready to heal yet (This is a very really possibility and problem. Sometimes an illness becomes so much a part of who we are, it is hard to imagine our life without it. What if she was receiving disability and could not survive without it? Frightening to think of having to start over and redefine your life when you have been conditioned to live with and expect pain. If I was told tomorrow I was cured of FM, I am not sure I would trust it. It would take time to make the mental adjustment – time and compassion from my health practitioners. That does not make me mentally and emotionally unstable, that makes me human.). We all have gotten advice from friends, maybe about a bad relationship, that we dismiss to the eye-rolling dismay of our friends or family. Later on, when the situation plays out exactly as predicted by our friends, we say “Why didn’t you tell me!”

This patient could not yet let go of her disease. The fascinating bit for me is that she continued to spend her time and money to get a treatment that was not working and that she knew would probably not work. If she had just discontinued treatment and not gone back for more, then I would have still been frustrated but could have chalked it up to tight finances or her not being ready to heal thus far. However, the baffling part was that she still spent good money on ineffectual treatment. Why?

My guess is that like many fibromyalgia/chronic-fatigue patients, she used her illness to get attention, love and support from friends and family(OMG! What an idiot! Seriously! What can I say here? He is so clearly detached from the reality. Please, someone, say something intelligent for me here, because I got nothing but OMG!). She had forgotten how to get attention in a normal healthy way. I hypothesized that her support network would quickly get fed up with her if she stopped seeking treatment all together, so to keep up appearances and be able to play the “I am doing everything I can” card, she had to keep “trying” to get better (Really! Again, excellent hypothesis by a clearly compassionate and in-tuned healthcare provider – she says with extreme sarcasm. When can I get an appointment?) .

Nothing is quite as irritating as someone who is sick but is unwilling to try to help themselves (Unwilling? Confused maybe. Scared maybe. But unwilling? Never!). People stuck in that rut quickly find themselves alone and friendless. Being alone and friendless is not what my patient wanted. She wanted the attention, but needed to get/stay sick because it provider her an excuse for something (Without mentioning the obvious typo in this sentence, I am again just going to reply – Idiot!). I did not find out what this something was for her, but I have found it out in other patients. I find this pattern very common in fibromyalgia/chronic-fatigue patients. So common in fact that I will cut this off now and continue this train of thought in my next article by exploring fibromyalgia/chronic-fatigue more. (Ohhh! Can’t wait for the next article, in which you perpetuate every negative and inaccurate assumption about Fibromyalgia and chronic fatigue. Do you have a newsletter? Sign me up!)

Initially I did not plan to share this article with you, but I hope that by shining a light on what is so grossly wrong about Mr. Montgomery’s way of thinking, less people will think like him. People with Fibromyalgia need compassion, support and understanding, not judgments and labels.

22/30

In my previous post I listed the main social networking sites available if you are looking to 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 the many online forums and support groups available. 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.

I do not have firsthand knowledge of most of these site, so please note my inclusion of them is not an endorsement, it is for informational purposes. The description after each link is taken from the sites own tag line.

Online Forums/Support Groups

Daily Strength – Free, anonymous support from people just like you

Fibromyalgia Support Form – The Official Fibro-Support Center

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

FibroHugs – Support for Fibromyalgia

FibroTalk – Online Community Support

Flickr – Simple Pleasures with Fibromyalgia

Healing Well – On Diseases, Disorders and Chronic Illness

Health Boards – Health Message Boards

Live Journal – Express Yourself, Share Your Life, Connect with Friends Online

MD Junction – people helping people

Patients Like Me – Share your experiences, learn from others, and connect with patients just like you

Pro Health – Commerce with Compassion

UK Fibromyalgia Forum – The new discussion forums for those with Fibromyalgia in the UK

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

WebMD – Better Information. Better Health.

As you can see the options are many. I have spent time on a few of these boards and I can say some were simply too negative for me, while others were full of inspiration and hope. If you make the decision to become involved, take your time to find the community that is best suited for your needs. Do not get discouraged if the first board you try does not suit you. Just come back to this list and pick another. I would love to hear your thoughts and experiences.

20/30

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

Hillary Rubin

Personally my journey began back in 1996 when I was working in the fashion industry for Prada in NYC and was diagnosed with MS. Like most I was upset, angry and thought my life was over. At the same time I also found yoga and now from keeping up a healthy lifestyle (left fashion), yoga and other holistic tools am living symptom & drug free. What worked for me that I also teach is to embrace the diagnosis, empower myself through taking action and enjoy the experiment process that is a constant evolution.

 

I am involved with the So Cal MS Chapter as a speaker, expert and yoga teacher. My business I am not a Mess ™ is dedicated to help others see there diagnosis as a gift, teacher and blessing. Yes – I know that takes time but I have been able to do this and have created products to help like my Yoga DVD Foundations, Free Growth Worksheets and will be starting Free Tele-seminars in March (http://www.askhillarynow.com) to answer questions regarding diagnosis, wellness and what to do with our challenges. 

 

After reading Hillary’s e-mail I took the time to review her website and read more about her philosophy. She has founded her life’s work around her mission to share how she embraced her illness, learned from what her body was telling her and is now living symptom free. I was intrigued so I signed up for her free tele-seminar on March 25th.

March 25th was a particularly bad day for me. Just two days after my lab Casey had passed and I really was not in a good frame of mind for the call. I almost did not call in, but the thing that motivated me to follow through was the hope that I would get something out of it to share on my blog and with my support group. For the first fifteen minutes I sat listening, but not really hearing what Hillary was sharing, but eventually the sound of her voice and her passion and enthusiasm sucked me. Before I knew it I had written 5 pages of notes! Here are just a few bullet points from my notes:

• What is your health worth to you?
• You are responsible for your health.
• You are more than any diagnosis.
• Love yourself in the way you want others to love you.
• Growth isn’t linear, it takes time.
• Our mind feeds our body – the subconscious is powerful.
• Shift from “I have” to “I was diagnosed.”
• Journaling gets “it” out of your body.
• Know that you are not alone.

The message Hillary shared on her call was inspiring. At the end of the hour my heart felt lighter and much of the sadness had left me. Within minutes I began writing my tribute post to Casey and my grief began to leave me. I felt blessed for the time I had with her instead of a sense of loss. Now I am feeling inspired to apply Hillary’s message to my health. If it worked for my grief, it can work for my overall wellness. I feel like I am already on a similar path, and it is no coincidence that my path crossed with Hillary’s. 

Yesterday I received another e-mail from Hillary offering a free MP3 of the tele-seminar. I have not listened to it again, but I plan to. And I wanted to offer the link to any of you who feel you can benefit from her message. I think everyone can, so here is the link: Ask Hillary Now

It is an hour long, so make yourself a cup of tea, grab a notepad and get comfy. I promise it will be worth your time. She has another call coming up on April 29th if you would like to sign up for it. Just click the link in her above e-mail. If you do listen to the MP3 I would love to know what you think. If you do not find your blessing there today, I hope you find it somewhere!