But I was never happy or content with that state of being. Who is? Who could possibly be? Even when we reach a state of acceptance with our illness, it does not mean that we are content living with it. I was certainly not content – a shell of my former self, and a shell of the person I could still feel inside of me. My true essence is not that of a sick person. My true essence is beauty, strength, light, love, and possibility! And I could feel each element deep inside me just waiting to burst through. Something had to change!

So I changed the only thing I had any amount of control over – ME!

Actually I did not change me so much are get reconnected with ME – the me deep inside that I had lost touch with over my many years of illness. She hadn’t gone away, she simply had been neglected. And the first thing I did to reconnect with her was to forgive myself for neglecting her, for neglecting ME. I had been doing my very best to cope with my illness given the skills and understanding I had available to me at the time. As we all know there is no manual on how to live with chronic illness. It is a complete process of trial and error. We are the pioneers of fibromyalgia. So where to begin?

I began with the simple belief that my life had much more meaning than my illness. I began to listen to my intuition, which told me things could be different, things could change. I allowed my true essence to become louder than my doubt, worry, frustration, and fear. I gave more authority to ME and less to my illness. I opened my heart to the truth of ME and began to allow hope and joy back into my life. I worked hard at not letting the once loud voice of my illness, which at times drowned out any other sounds, to again become the only thing I could hear.

And I did more work. Slowly, yet regularly I began practices and behaviors that reinforced ME and turned down the volume of my illness. I completely changed the way I ate – no more gluten, and a lot more veggies, nothing processed, everything fresh. I began a regular yoga practice, starting once or twice a month in the extra gentle, senior class, and slowly progressing over two years time until here I am today, teaching gentle yoga and practicing regularly. I began reading books, magazines, and web content that enhanced and reinforced my new focus. I found a local spiritual community where I feel love, hope, and an even greater connection to the essence of ME. I could go on and on, describing the ways I have worked over the past two years to reconnect with me, and disconnect with my illness, but I think you get the point.

I am not symptom free. I likely never will be. But what I am is hopeful, and happy, and whole. I am whole despite what is missing. I am whole despite what is different. I am whole despite my symptoms. I am whole because I am again living from my true essence, not from my illness.

We are all so unique and valuable. I believe we feel pain so intensely because we feel everything intensely. It is exactly our capacity to love that gives us this incredible capacity to hurt. We can chose to focus on the love, and the essence of our being, rather than on the pain and symptoms of our illness. It is not living in denial. It is not mind over matter. It is essence over illness. You are so much more than your illness! And you illness can never diminish or extinguish your true essence. You were born with it, and you will die with. Now is the perfect time to find your own way to tune into it and let it once again become what you live from. Your formula will be your own. You know what makes your heart sing. You know what makes you feel like a complete and whole being. You know what makes you YOU! Find a way to spend more time there. You are love, you are light, you are beauty, and you are hope! The world needs more of YOU!

(self reflection photo courtesy of www.jennypalu.com/selfreflection.html)

If you have been diagnosed longer than a few years, you most likely recognize the shift in the awareness and overall understanding of fibromyalgia. Yes, there are still uneducated nay-sayers out there, but the gap between reality and perception is definitely closing in and this is a very good thing. Awareness is key!

So again, what does all this Fibromyalgia Awareness mean and how do we benefit? Here is my take on the matter:

5 Reasons Fibromyalgia Awareness Campaigns are a Good Thing

1. No longer having to give a medical dissertation every time someone learns I have fibromyalgia.

Even if their understanding of FM is only as “that pain thing,” most people have heard of FM, know someone with FM, and have a general understanding of the debilitating symptoms of FM. I no longer feel like I am fighting a losing battle in trying to help people understand this complicated condition. Every day there are more and more resources out there, which generally give sound explanations and advice – like the American Pain Foundation, and their campaign to spread awareness. Good stuff!

2. A greater understanding and awareness of fibromyalgia in the medical community.

And again, yes, there are exceptions. We all have our doctor horror stories, but more and more I am hearing stories of wonderfully helpful and compassionate doctors; doctors serious about addressing the complex and highly individualized symptoms of FM; doctors determined to find ways to bring their patients relief and improve their quality of life. There is an ever increasing number of doctors out there determined to take on the ugliness that is FM, and this shift is a direct result of a growing compassion due to growing awareness.

3. New diagnostic criteria.

One of the main reasons fibromyalgia has not been easy to diagnose, treat, and even understand is there is no definitive diagnostic test. The fibromyalgia tender point test is so subjective that many medical professionals did not place any value in it as a means to diagnose FM (and therefore avoiding dealing with FM patients altogether). The results can vary from day to day with each FM patient, and each practitioner brings their own subjective understanding to the process. Too much variance! But now that FM is widely accepted as a legitimate chronic illness, clearer and better diagnostic criteria are being developed, and this is a very good thing. There is hope that eventually there will even be a definitive diagnostic test, possibly Brain Imaging, saliva, or blood testing. Better understanding and treatment are on the horizon.

4. A greater understanding of what can and will help alleviate symptoms of fibromyalgia.

While there is no clear cut – “Do this, Don’t do that” – we do have a better understanding of the lifestyle changes we can make that will help improve our quality of life. We understand that mindful movement is important for our bodies, with the key word being mindful – mindful of our own unique bodies and limitations. We understand that nutrition plays a large role in exacerbating the symptoms of FM. I have yet to meet a person with FM that did not benefit from eating a healthier diet. We understand that relaxation and stress management play a huge role in the severity of our symptoms and our ability to cope. Yes, our minds and bodies are clearly connected. We understand that we have a measurable amount of control over the suffering involved in living with a chronic illness. We have choices!

Happiness is a choice, not a condition. ~Carlos Santana

5. Hope and Community.

HOPE: More and more  I am reading and hearing success stories of people learning to live well with fibromyalgia. This is not the same thing as living symptom free of FM. Living well generally occurs after a period of emotional exploration leading to eventual acceptance – acceptance that we are whole, despite all that is different – we have options, despite all that has changed – we are valuable, despite all we have had to let go. With acceptance, we are free to explore the potential of today and the promise of tomorrow. And we are all full of potential!

COMMUNITY: More and more I am seeing new bloggers in the fibromyalgia community, more facebook groups, and just a general outreach and community building effort. I have said it before and I will say it again – Community is Everything! Where else would we turn for understanding, support, information, education, encouragement? Some of my dearest friends have come to me through my FM community. I love when I see friendships form between people who have connected on a blog, or facebook page , or twitter. It is happening everyday, and it is a beautiful thing!

So this is what awareness looks like. This is how awareness creates change. And this is how we each benefit from the continued awareness of fibromyalgia created by campaigns like Fibromyalgia Awareness Month, and Fibromyalgia Awareness Day. Get involved. Do something to help spread awareness – talk about it, write about it, leave a comment on your favorite blog, send an article or a great online resource to your doctor or your loved ones. Do something. Be a part of the change.

Thank you all for helping me make FibroHaven a place of hope and support. Thank you for inspiring me this past year, and for motivating me to make next year even better. You give me strength!

Wishing lots of comfort, joy, and love to each of you this holiday season. Your light shines brightly. I know, because it is what guides me.

The Rusnaks ~ With Love

The Benefits:

Yoga heals. A recent study on yoga for fibromyalgia conducted at Oregon Health & Science University confirms what I have been experiencing since beginning my yoga practice 18 months ago – “yoga appears to assist in combating a number of serious fibromyalgia symptoms, including pain, fatigue, stiffness, poor sleep, depression, poor memory, anxiety and poor balance. All of these improvements were shown to be not only statistically but also clinically significant, meaning the changes were large enough to have a practical impact on daily functioning. For example, pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent.”

Yoga is a joyful practice, and the results are undeniable as is clearly demonstrated in my own personal experience and the above referenced study. I cannot say it enough. Yoga heals!

I can, and am getting better! I am not only feeling physically stronger, I am also feeling mentally and spiritually stronger. I have hope. I have joy. I have peace. I have a new love and enthusiasm for life that I have not experienced in many years.

We are not alone in our suffering. One of the unexpected benefits of the teacher training program is the camaraderie I have found with the other students. Suffering is not unique to fibromyalgia, and the program has reminded me of this. Each of the students was drawn to yoga from a different need, and listening to the stories of others has helped me understand how universal suffering is, which has allowed me to let go of the limiting belief that anything I am experiencing is unique or unusual.

I do not have to accept the level of suffering I have been living with for 14 years. Suffering is found in more than just the physical manifestation of FM. It can also appear as self-judgement and criticism, guilt and regret, isolation and silence. These are all conditions we create in response to our illness, but they are also conditions we can change. As we being to improve our mental and emotional suffering, our physical suffering improves naturally – and vice versa.  Love yourself. Be kind and gentle to yourself. Embrace your body’s natural ability to renew and restore. It can and it will if you nurture it properly. You are worth the effort!

The Challenges:

I still have symptoms and must remember to continue to listen to my body and honor what I am feeling. I experience so much joy in movement, but given the neurological nature of FM, it is possible and even likely to over do it and trigger a flare. It is not in the practice of yoga that I find myself overdoing it, but in the routine of my daily life. Because I have so much more energy and much less pain, it is easy to get carried away and take on too much. I do not want to slip back into the unhealthy patterns that lead up to and contributed to the severity of my FM – always on the go, saying yes to everything and everyone, never slowing down to enjoy the moment and breathe! But the good news is that when I do experience the symptoms of a flare, they are shorter and less intense. I recover more quickly. I am hopeful that the 2 week and 2 month flares are behind me!

Taken in Sedona AZ after a 3 hour hike - something I could not have done just one year ago.

If I had to nail down the one thing that has benefited me the most, it would be the understanding that I can and do control my health. Fibromyalgia is a very real condition, but that does not mean it is a permanent condition. We have options, and there are things we can do and lifestyle changes we can make that will diminish the symptoms we experience. I have no idea if I will ever completely eliminate the symptoms I experience, but I am continuing to improve and better my quality of life. If I only improve to the percentages stated in the study above, that is enough improvement for me. But I believe I will improve much more!

As much as I want each one of you to experience the same improvements I am, I understand that we all must take our own journeys. Yoga may not be your exercise of choice, and that is okay, as long as you choose something that improves your health and slowly betters your quality of life. Did I mention it has taken me 18 months to get to where I am? It does not happen overnight, and it certainly has not been a straight line from my first yoga class to the teacher training program I am in today. If I had to map it out it would make us all dizzy! But there has been a lot of joy in the journey so far, and I have a lot of motivation to continue on, regardless of the obstacles and dangerous turns ahead.

Make the choice – choose to improve, choose an exercise you love, choose to feed your body the foods that nourish and heal, choose to love and forgive yourself, choose to love and forgive others, choose health. It is possible. The choice is yours!

One of the first things I tell new members of FibroHaven support group – above everything – we need to learn to be our own best health advocates. Fibromyalgia is a condition with no known cure. There is not, and likely never will be, a single approach to treat and manage the condition. Most doctors do their best within their limited resources in identifying and trying to treat each of the separate symptoms of the condition, but few are masters of treating the whole.

In their desire to bring you relief, you may leave with one prescription for pain, another for sleep, and still another for IBS. And when those fail to bring the desired results, or when the side effects are worse than the condition they are intended to manage, you start all over with a new prescription, and new hope that this time it will be the answer. And the cycle continues. Even for those whose symptoms are improved, and their days are made more manageable, the condition remains.

So our anger and frustration builds. We see doctor after doctor hoping this one can help – that one will know, and when they can’t, and when they don’t, we blame. We blame our doctors for not understanding, and we blame the pills for not working. We dwell in a state of feeling hopeless and misunderstood. We lose faith that it can ever get better. We become defeated, and in doing so our symptoms grow in strength and severity because we have relinquished our control. Fibromyalgia wins. We lose.

Can you see how depleting this continuous cycle of hope and disappointment can be?

It is this disappointment and incredible letdown that I believe can be alleviated if we reevaluate our expectations of the fibromyalgia doctor-patient relationship. Despite all efforts, our doctors are limited in the relief they can provide. If we understand this going in, and set reasonable expectations for what we hope to achieve under their care, we free ourselves to possibility rather than despair.

First, we must change our expectations of what a doctor can do.

A good doctor will partner with you and guide you to make the changes necessary to improve, but even the most fibromyalgia literate doctor cannot make this go away. Know this going in and you are much more likely to have a positive experience and partnership with the right doctor.

I did not start healing until I took control of my health out of a doctors hands. Once I understood they do their best, but their best is limited when it comes to fibromyalgia, I began to make the changes I needed to begin healing. Because I chose to manage my symptoms without the use of pharmaceuticals, my need and expectations of my doctor were reduce considerably.

I incorporated alternative medicine, finding tremendous relief from a holistic chiropractor. His treatment was unconventional in that he rarely adjusted me, but used laser therapy and also addressed my nutrition, introducing me to a gluten-free diet. He also worked to eliminate several infections I had including heavy metal toxicity.

Once my chiropractor worked with me to consider how nutrition played a role in how I was feeling (something, remarkably, I had never considered), I began to examine all areas of my life to see what changes I could make to begin living well with fibromyalgia.

I incorporated yoga to get moving again. I began meditating to help me find balance and peace amidst all the chaos of chronic illness. I became more active with my support group to connect with people who validate my feelings and experiences. And I began to improve. Slowly, gradually, I improved. But more beneficial than any physical improvement was my emotional improvement. I found hope.

By making these changes I took control of my health. A loss of control is something we all struggle with. When we give that control to our doctors, and they fail to make acceptable improvement in our lives, where does that control go? Do we keep giving it to others who, despite their intentions, are limited in their ability to help, or do we take it back. I say take it back.

Walk into your doctors office and let them know, I know you cannot cure me, but let’s see what we can accomplish together to make me better. Better than anyone, you can – and should – determine what is best for you.

You know how it is in those moments when you get completely inspired – everything is brighter in that instant and you know your life is forever going to be changed for the good. Then you get home, and you set the books down. Life picks up exactly where it left off and you forget. You forget how inspired you were. You forget how to change, how to be better. Heck – you even forget to read the books. Yep, that is exactly what happened.

So I haven’t read his books yet, but I do get his monthly newsletter, and the title of this month’s article really spoke to me: Vulnerable Leadership.

That is exactly how I am feeling these days as the founder and leader of FibroHaven – vulnerable.

You see, my purpose is to share and encourage. I want to be a positive voice and a leader in living well with Fibromyalgia. But how can I do that when I have been feeling miserable since May? Since 1996 really! It is something I struggle with everyday. And it is the reason I am feeling vulnerable today.

I choose not to share the miserable stuff here. You know all too well about it. I would not be explaining or describing something you have not experienced many times yourself. But how do I balance the vulnerable me – the me that lives daily with the ever present and fluctuating symptoms of fibromyalgia – with the hopeful me – the one who embraces life as much as possible despite my constant fibromyalgia companion.

I don’t know. I do not have the answer. But in his article, Mike shared five key principles of vulnerable leadership, and that is where I am going to start.

1) Admit and own your mistakes

My mistakes are many! Daily even. Do you know I have been planning a relaunch of FibroHaven for months? It is still going to happen, and it is going to be really exciting when it does (great new features I know you are going to love), but as the creator, leader, and main cog of FibroHaven, I have dropped many balls.

Sure my health is partially to blame, but so is my procrastination, and my lack of follow through, and my frustrating tendency to sit back sometimes and let life come to me. It doesn’t, and it won’t. It is on me to make this happen. I chose FibroHaven. Nobody asked me to do this, but now that there is this wonderful community connected because of it, I need to follow through better – and I will.

2) Share your fear and insecurity

My fears are many too. Putting myself in the position to be a voice of positivity and change, I fear letting you all down by not changing quickly enough myself. I believe in a holistic approach to wellness, and I have been perusing that approach for a better part of a year, but I am nowhere near well. I fear this makes me a hypocrite and a fraud.

The thing that brings me back to share my philosophy is that I believe in my heart that I will get better. I will improve. I am on a wellness journey, not a crash course. And my hope is that by sharing it here with all of you, something I say may trigger a change in you. Something I experience may inspire you.

I have two purposes on this journey – get well, and encourage you to take your own wellness journey. But there are moments when I feel like “Who the hell am I to encourage someone else when I have so little to offer myself today.” I like it when those moments pass. And fortunately they always do.

3) Don’t take yourself too seriously

This one is pretty easy for me. My sense of humor is my lifeline, my core, my compass. Laughter really is the best medicine, and I am usually the first to laugh at myself. I can share funny and embarrassing things about myself here (and I have) because it is real, and that is life.

Remind me to tell you about the day I ended up ankle deep in wet cement because I thought the construction guys were coming on to me – not yelling to warn me about the wet sidewalk they had just laid. That ended well.

4) Share your own process, journey, and challenges

That is exactly what this blog is – my shared journey. Good to know I am doing this right!

5) Ask for and receive help from others

Oh this is a tough one for me. Now I will be the first to advise you to do this for yourself, but to put it in practice in my own life – that is so hard for me. Again, refer back to my often feeling like a hypocrite. It is for reasons like this.

Do as I say not as I do, right? Wrong! I really need to work on this for myself. There are so many areas where I could use help just with FibroHaven. Who knows, maybe if I were not so stubborn and short-sighted I could have launched the new site by now. I don’t know. All I know for sure is that I am flawed. I have a lot of work to do on myself. And sometimes this makes me reluctant to get on here and advise and encourage you.

But please know this, that everything I share on here, I share because I care. I know how dark this chronically ill life can seem at times. I know how isolating it can be. My hope is to shine a tiny little light, and maybe start a conversation or two.

One of my greatest moments came the other day when two people I met through FibroHaven became friends because of FibroHaven. One lives in California, the other in Virginia. Their paths may have never crossed were it not for FibroHaven. That is it. That is what it is all about for me. And that is what keeps me going on the days when I feel like no one should look to me for advice and support.

There is a reason for all of this. Maybe I am meant to fail and flounder. Maybe that makes me more real. I don’t know. But I do know that I love this community. It gives me courage and reinforces my hope.

And there it is. My vulnerable side…

Rare is the Fibromyalgia patient who embraces exercise.

Not only does it elicit a pain response in most of us, but it also sends our defenses up. Too, too many times we have heard the unsolicited advice, “If you would only exercise you would feel much better.” We could all give examples of some of the insensitive and inaccurate things we have heard, that is not at question here, but what is under consideration is what truth is there in those comments?

It is hard to consider the validity to a comment that has raised our defenses and left us feeling misunderstood. But what if, regardless of how misinformed the comment and commenter, there is an underlying validity to it? Should we continue to be defensive and ignore what instinctively we already know? Who are we hurting if we do this? Not them, that is for sure.

Be Mindful

The fact is, not all exercise is good or even possible for most Fibromyalgia patients, but some form of mindful movement is essential if we ever want to improve our symptoms and our overall wellbeing. And yet it seems so counterintuitive: “It hurts to move, so you are telling me I need to move?” How does that make sense?

A lot of research has been done on this topic. Article after article has been written touting the benefits of exercise for Fibromyalgia. Here is a summary of the benefits of exercise for those with Fibromyalgia from WebMD:

helps restore the body’s neurochemical balance and triggers a positive emotional state

boosts levels of natural endorphins — pain-fighting molecules

triggers the release of epinephrine and norepinephrine, hormones that are known to boost alertness

burns calories and makes weight control easier

gives range-of-motion to painful muscles and joints

improves a person’s outlook on life

improves quality of sleep

improves one’s sense of well-being

increases aerobic capacity

increases cardiovascular health

increases energy

places the responsibility of healing in the hands of the patient

reduces anxiety levels and depression

relieves stress associated with a chronic disease

stimulates growth hormone secretion

stimulates the secretion of endorphins or “happy hormones”

strengthens bones

strengthens muscles

Would your life and your symptoms benefit with even one of the listed improvements? Then let’s step back from our conditioned response to exercise and think about how we can approach mindful movement with more positive results.

Be Gentle

This really is a matter of reconditioning our response to, and expectation of movement. Societies idea of exercising for health is to push through the pain; No Pain No Gain. Absurd really, and an approach that will guarantee failure for those of us living daily in pain. Take that approach and turn it inside out and then upside down. Gentle, mindful movement is the key to exercising with Fibromyalgia.

If you are familiar with my blog at all you know I am a huge proponent of yoga. Well I learned the hard way recently that I need to revise my ardor of yoga.

I Love Yoga, But Not All Yoga Loves Me

My first experience with yoga years ago was a No Pain No Gain experience. Even though I made an attempt to explain Fibromyalgia and my limitations to the instructor, she still pushed me way beyond my means. It was an awful experience and I was done with yoga. Fortunately, Fibromyalgia has taught me to consider and reconsider everything, because, when given the opportunity to practice yoga again, I did and had a completely different experience. It was one of the greatest epiphany moments I have had. Movement without pain. Hallelujah!

But then recently I had a setback to my love affair with yoga. For financial reasons I was no longer able to attend the gentle yoga classes that were having such a positive impact on my health and my symptoms. I was forced to look for alternatives; I tried YouTube videos with no success; found a few sources on Facebook that were okay, but not great; rented a few DVD’s, not even close. Then I resorted to buying a Yoga for Beginners DVD. I mistakenly interpreted “for beginners” as meaning “gentle.” Boy was I wrong. Massive failure and major flare-up.

But We Are Resilient – Remember

So I looked again specifically for “gentle” yoga, and I found a free class being offered at a local library. My love was back. I spent the next restorative hour in mindful movement so gentle I sometimes wonder if it is really benefitting me, but it is. The result was no flare, days of improved cognitive function, better sleep, and decreased pain – all from one class!

Not All Movement is Created Equal

So you tried yoga and it hurt and sent you into a flare and now you are done with exercising. Exercising is not for you. I could not possibly understand how severely exercise hurts you because if I did I would not be telling you to do it.

I understand all of the reasoning behind not exercising, because I used them all myself for many years. And if I had tried yoga again and it had been anything other than gentle and restorative, I would still be reasoning myself out of attempting any form of movement. It is understandable. We have become conditioned by our pain. But the really great thing is that we can also become reconditioned.

First you must trust that your muscles need movement. The longer they remain inactive, the more severely they will continue to hurt, the less energy you will have, and the harder it will be for them to support your frame. Your muscles want and need to move.

Next you have to find the appropriate movement for you. It may not be yoga. Maybe it is Tai Chi or Qigong. Maybe it is some form of water movement. Maybe it is a slow and gentle walk. Find what works best for you. Find what you love and what makes your body say Hallelujah.

Finally you need to accept that you will feel sore and there may be some discomfort, but you should not become discouraged by it. Consider how long you have been inactive. Honor you body and your limitations, but do not use them as the reason for not trying.

As with all things Fibromyalgia, there is no easy answer or quick fix, but if you intend to get better, then mindful movement is a necessary step towards wellness. Do not give up if your first attempt is a failure. Regroup and recommit yourself to mindful movement. When you find what works for you the rewards will be many, including an increased range of pain free movement. And as I like to say – be sure to take baby steps to avoid the making the painful leaps.

I am approaching the one year anniversary of my blog. I have grown a lot over the past 11 months. I have made many wonderful new contacts. I have learned to be more open and honest about my health – with myself, and with my family and friends. I understand more about the causes and contributing factors of Fibromyalgia. I could go on and on about my growth, but this post is not about me. This post is a celebration of you.

If you were to ask me the most important thing I am taking away from this past year, I would say YOU. From the members of my Meetup support group, to my blogging buddies, to my facebook friends and to my twitter team – everyday I am amazed by the quality people stricken with chronic illness – my chronic community.

You are not a passive bunch, you are passionate. Passionate to learn, and to share, and to heal. Passionate about your craft and your creativity. Passionate about your friends and family. Passionate about your causes and your concerns. And I want to honor your passion. Some of you may have read this list before, but I think it is worth sharing again. We can all use a reminder every once in a while about how valuable we are. And you are valuable – each and every one of you. Valuable, and so much more.

Who You Are

You are survivors.

You are scientists.

You are strong.

You are seekers.

You are smart.

You are sensitive.

You are stoic.

You are resilient.

You are resourceful.

You are artistic.

You are intuitive.

You are compassionate.

You are genuine.

You are proud.

You are beautiful.

You are passionate.

You are brave.

You are creative.

You are wise.

You are empaths.

You are private.

You are each different.

You are complicated.

You are connected.

You are givers.

You are a community.

You are family.

You are friends.

You love life and want to live it to the fullest.

You seek knowledge and understanding.

You appreciate empathy.

You have great senses of humor.

You have hope.

You are real.

You are much, much more than your illness.

Everyday you show me how valuable we all are. Everyday you impress me. Everyday you overwhelm me. And everyday you remind me that we are so much more than our illness. But just in case you do not always remember this yourself, look back over the list and take in all that you are. Pick out the ones that apply most to you, and really think about them. Focus on them for a few minutes. Say them over and over again in you mind. Be proud and say them out loud. Spend some time focusing on all that you are, not on all that you can no longer be. Your illness may be invisible, but you are not.

Today I want to share with you this very important video of a presentation Lynne gave in 2007 at a patients conference. It is important to note that she is speaking to patients here. This is not an intro to Fibromyalgia. She is speaking to her peers, to all of us.

The video is an hour in length, so keep that in mind when you prepare to view it, but please do watch it. It will give you comfort to know that the most recognizable Fibromyalgia leader understands and is actively working to better our lives and provide us hope for our future.

Here are some highlights Lynne covers in the presentation:

• We are all different
• You can get better
• There is no magic bullet
• What you are experiencing is real
• You can take back control of your life
• Listen to your intuition
• Give yourself permission to take care of you
• You are a person first, a patient second
• This is our journey

On this journey you are going to learn not only the things that are going to help make you feel better, but maybe even help make you a better person. I think I am much more compassionate. I think I am much more sensitive. I think I am much more aware. Lynne Matallana

videoplay?docid=6512742079926657347#

Man I have a lot going on right now – a lot of good things going on right now. I have teased in the past that I am working towards bigger and better things for FibroHaven. I want this to be more than just a blog where I come to relieve my tension, share my experiences, and hopefully educate and entertain you. I want this blog to be the foundation for a whole infrastructure of community, heath, and wellness, which we are all so hopefully pursuing. And I am working on it.

To that end, I am finding that each day I have more and more on my plate. Today for example, this is what I am hoping to accomplish:

To-Do List

• write two blog posts
• read the assignment and complete homework for business class I am taking
• email back the 14 people who are waiting so patiently for my response
• prepare for meeting tonight to cover progress of FibroHaven launch
• confirm details with guest presenter for support group meeting on Wednesday
• schedule August meetings for FibroHaven support group

Whew!

Now mind you, todays list is this long because I accomplished nothing productive over the weekend – except having a great bbq with my family and catching up on some movies I have wanted to see – but nothing that would make my “to-do” list more palatable.

So when I found the image above, I thought it was a great reminder for me. Yes, I am “chewing” a lot right now, but like that yummy strawberry the tortoise is so happily munching on, it is all good for me. Everything I am working on and working towards will not only enrich my life, but it will also enrich everyone who becomes a part of my vision for FibroHaven – one great big community where we all share, and support, and connect, and explore. A community where no one feels isolated or alone. A community where when you are in the middle of the storm that is life, you can retreat to for a little shelter and protection – a Haven!

It may not be the most organized haven, and it may sometimes progress like the tortoise instead of the hare, but it will be a haven none-the-less. Our Haven! And the great thing is you all understand. You all get it. I didn’t need to get on here today and apologize for anything. I just came on here to share. Because I can. Because I know you will understand and you will listen. That is what I am working hard to develop – a place where we can all go when we need a little understanding.

Note to self: write two one blog post.