Writing is a passion I can always remember having. When I was a young girl we lived in a very old house. My bedroom walls were covered with many layers of wallpaper. On a particular wall in my room there was a small hole hidden under the thick layers of wallpaper. I would sit and write letters about my inner most thoughts and feelings, and then I would neatly fold my letters and tuck them deep inside my bedroom walls. Thought after thought, and letter after letter rested inside those walls. For all I know the letters are still there.

Each letter I wrote helped me to release my fears, anxieties, and depressions. They gave me hope and made me feel connected to a source greater than myself. I always felt powerful and connected after writing my letters, although at the time I could not have expressed who or what I was connecting to. In fact I would address my letter to the unseen and all-knowing To Whom it May Concern. It gave me a sense of comfort to believe that there was someone/something that was concerned.

When I began this blog just over two years ago, in a sense it became that little hole in the wall for me – my space to share and process all my thoughts, fears, failures, triumphs, and epiphanies. And each of you became my To Whom it May Concern. And to my surprise my letters did not sit unnoticed. You took notice, whether you responded with a comment or a personal email, or even just read my letters and moved on, you have been here and given me the strength to continue writing. It has been a beautiful thing in my life, the catalyst really for my healing, and I thank you!

So when I am asked by FibroHaven members if I think they would benefit from starting a blog, my answer is always an emphatic YES! Whether you are passionate about writing or not, it is one of the most therapeutic things we can do. The benefits are endless.

From Health Benefits of Journal Writing, by Felice Willat

Marlene A. Schiwy, in her book A Voice of Her Own, talks about the healing dimensions of journal writing: “To create wholeness in our lives is to heal ourselves. Healing comes from the same root as whole and holiness. It is the attainment of wholeness of body, mind, emotions and spirit. For many women, The journal provides a gentle setting in which healing can take place. It offers one place where literally and symbolically, all of the pieces of one’s life finally come together.” And Lucia Cappaccione, author of The Well Being Journal, recognizes that illness can be a great teacher from within. “The most important message I learned from my disease is that the healing process is activated by a spiritual force that resides within. A journal can be a ‘living textbook’ for learning the lessons that the illness has to teach.”

I have learned so much about myself over the past two years of blogging about my illness. This is where it all began. FibroHaven – my little hole in the wall!

Whether you are inspired to begin a blog, or simply take up journaling, I encourage you to write, not just about your symptoms and your daily activities, but primarily about your inner thoughts and feelings. Research has shown that writing about your experiences reduces physical symptoms in patients with chronic illnesses, and isn’t that the goal for each of us. You find yourself here reading my thoughts because you are actively looking for ways to improve your quality of life. So – sit down, make yourself comfortable, and write about it!

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…

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.”

After my first week I am feeling pretty good. I am back in sales. It is what I know and what I have done well for many years. I am really excited about the company I am with now. Very smart, professional internet marketing firm. Great potential for me as long as I do the work and maintain my health. And that is exactly what I plan to do.

I think what I am most concerned about is maintaining balance in my life. For example, I did not make it to yoga this week. My body is letting me know loud and clear that I need to get to a class soon. I have a lot of motivation to make that happen.

I didn’t realize how much I missed being a working professional. I love getting dressed up, getting motivated during sales meetings, going out and meeting with clients and strategizing with them on business opportunities. It is a completely different kind of satisfaction than the satisfaction I have experienced with FibroHaven – plus I get paid for it! Bonus!

I know I am in the honeymoon period with my new career. I know there will be days when I will feel awful and either have to push through it or take the time to recover. But it feels great to contribute again, and it feels even better to know that I did the work to prepare myself to go back to work. I made the changes and the choices that I knew would benefit me. I made the commitment to myself to take back a measurable amount of control of my health and my life.

When I signed on with my new company, I did so as a long-term commitment. But FibroHaven is my long-term commitment too. I plan to document my progress here, sharing what is working and what is not. Discecting what I can do better, and continuing to explore the many alternative and holistic options for better health and wellbeing. I am putting different stresses on my body now, so I may require different tools – like acupuncture. I have always believed I would benefit from acupuncture but could never afford it. Now maybe I can. It is like investing in a good business suit. Neccessary!

So yes, the tone here will be changing – but the voice will remain the same – all me. I will have some big decisions to make about my support group too. That may be a commitment I cannot continue, but there is time to figure that out. I have time. I have options. I have hope.

I saw this great quote on facebook the other day and I put it in my status:

I have become my own version of an optimist. If I can’t make it through one door, I’ll go through another door – or I’ll make a door. Something terrific will come no matter how dark the present. ~ Rabindranath Tagore

There is always a door. One way or another, there is always a door.

One year ago today I sat down at FibroHaven for the first time and wrote this – Welcome!

In my very first post I shared what I hoped and intended to accomplish with my blog:

I have found the blogs I like best are the ones whose authors are aware they have an audience, yet they speak with a realness and simplicity.  They are authentic.  I image if I met the author they would be exactly as they sound on their blog.

That is the approach I hope to take in my writing.  I want to be real.

One year later I think my blog is exactly as real as I was hoping it would be and so much more.

I had no understanding at the time of the relationships I would form and the people who would reach out to me because something I wrote made an impact on them. I knew there was a need for a positive voice in the Fibromyalgia community, but I had no idea how much it would come to mean to me to be that voice.

My heart, soul, love, hope, spirit, and joy are in this blog. I doubt that I have ever been more proud of a personal accomplishment. Maybe that game winning home run I hit as the only girl on my little league baseball team. That was pretty cool! But seriously, FibroHaven is my baby.

Every time I read a comment like this from a recent post, I know I am doing what I am meant to do:

Thank you so much for sharing! I have only recently realized how important it is to reach out to those around me instead of hiding. I’m not weaker as a result of my illness. It is people like you that have helped me realize this. -Terri Simmons

Heart warming!

I have changed so much over this past year, and I doubt any of it would have occurred without this blog.

• I am more accepting of my illness
• I understand that I need to be my own best health advocate
• I understand the value and importance of researching every possiblity
• I recognize that there is no quick fix, no magic bullet
• I do not blame anyone or anything for my current state of health
• I have become more mindful of how my lifestyle choices contribute to my wellbeing
• I have a new spiritual awareness through yoga and meditation
• I am more in tuned to my body and my environment
• I am hopeful
• I feel loved
• I believe with all my heart that I will continue on this path to wellness and one day be symptom free
• I accept that there will be setbacks and obstacles, but that progress is still being made

If I had to give a number to my symptomatic improvement over this past year, it would be about 15%. Fifteen percent better than I was one year ago today. Wouldn’t you take that? Using the most basic of math, and not taking any variables into account, if I continue at a “15% a year” rate of improvement, I will be symptom free in just under seven years. After 13 years of living with a range of Fibromyalgia symptoms, seven years is acceptable to me.

But I don’t believe it will take seven years, simply because I cannot ignore the variables. If I had to give a number to my emotional and spiritual improvement (the variables) over this past year, it would be 60%. I am happier and more hopeful than I have ever been. I am at peace with who I am, and excited about who I am becoming. And I contribute the work I have put into FibroHaven for guiding me into who I am becoming.

I have put the work in, and I will continue to do so. I will continue to share and relate my experiences here. Some you will relate to, some you will not. But by taking the time to research and read, you are becoming your own best health advocate. Knowledge is power.

Thank you all for reading and commenting here. You are a big part of the reason I am feeling so loved and hopeful.

It was several years ago now that my therapist tried to help me resolve my physical pain by dealing with my suppressed emotions. Ironically, her recommendation to me was to write. She believed that through the process of writing, my muscles would begin to let go of everything they had been storing. Unfortunately I did not get very far with her. Maybe I was not ready to hear her and understand then. Maybe the time was not right. But today as I sit here writing about it, I am so much more aware and accepting of where she was trying to guide me.

My muscles are full of emotions I have spent the last 40 years avoiding.

The pain is stored there because that is how I unconsciously chose to process it. I stuffed it deep down inside to avoid facing it, but it doesn’t just disappear, it simply manifests itself into a different kind of pain.

My muscles are inflamed and toxic because I did not have the skills to manage and deal with the crisis in the moment. Who does have the skills? They are not easy to acquire. I still do not have them, but I am working towards it. It may take me the next 40 years, but at least I am now aware.

Healing is not a simple process.

First we must really come to terms with the source of our pain. For the purpose of this post I am focusing on emotional pain, but as we all know there are many other components to our pain (trauma, infection, toxin, etc.) that make this process even more complicated.

So where do we start?

Again, there is no easy answer. Years ago I started in the most logical place, therapy, and yet it turned out not to be my actual starting point. I had years of stagnant suffering after that, waiting for my health to change, but not actively making the changes necessary for my health to improve.

Looking back on it now, I am learning from my time spent in therapy, but it made little difference in my life at the time.

My true starting point in understanding how my emotions have contributed to my pain is this blog. Writing here has allowed me to explore and examine myself in ways I never would have otherwise. It has allowed me to acquire new tools and resources to actively apply to my intention of wellness.

What does that mean?

Well it means I am no longer sitting on my couch with a tub of mashed potatoes, convincing myself that my misery entitles me to eat it. And it means that I am no longer waiting for better health to find me, I am actively seeking it out. And it means I am no longer discouraged by the many set backs, because I understand it took years for this damage to occur in my body, and it will take years for me to correct everything, but each step I take towards healing tips the balance to the path of wellness and a better life.

For me, the tools and resources I have acquired to deal with emotional pain are writing, yoga, and meditation. The combination of the three have given me a greater awareness of the mind-body connection, which I believe is essential for healing our emotional pain.

Yoga and meditation teach you to connect with and examine your body, scanning for places of tension and pain. They teach you to acknowledge and breathe into those places, and not ignore what you are storing there. It has been an amazing process of self-discovery, and both practices often leave me more emotional but less painful.

Writing is where I come to process everything. This is where I put the piece together and try to make sense of them. Without this blog, I am certain I would still be waiting for my health to change.

So how can you take what I have learned and apply it to your own path to wellness?

First, you have to be ready to take your journey. You have to be ready to do the work and the research to find the best tools and resources for you. Then you have to understand that it is a journey of endurance and not be discouraged by the inevitable setbacks. You have to believe that you are worth the effort and that better health is possible.

If you are not there yet, like I wasn’t not that long ago, keep reading, keep researching, don’t give up. Never give up! Better health is possible. Once you believe it is, your journey will begin.

I have been feeling pretty awful lately. I can always count on the heat of summer to bring on several really bad flares, or just one continuous knock-me-on-my-butt-and-suck-my-joy-of-life kind of flare. This summer had been kind, mild even. And then last week happened. Wouldn’t you know, it picked my birthday week to turn miserably hot. Blech!

Perspective: Regardless of my enthusiasm for turning 40 and the promise of a brighter future, I still have a lot of work to do. I still have an active and severe case of Fibromyalgia. I am still learning to manage my symptoms. I am not in control – yet.

When flares happen they also force me to prioritize. How important is it really if I am not caught up on the laundry? As long as there is something clean to wear, not very. Will my friend still love me if I cancel lunch on her AGAIN? If she is really my friend, then yes.

The biggest thing I have battled with during this flare is my commitments. I had a very big and important local support group meeting to coordinate when this flare was just beginning. I felt out of focus and disconnected through the entire event, but with help, I made it happen. It was a great evening attending by members of FibroHaven and also people in our community looking to understand and learn more about Fibromyalgia. I have the NFA to thank for the event, and plan to do just that in my next post. On my list of FibroHaven related priorities, this event was at the top.

My blog would be next on that list. Notice the lack of posts from the last few weeks? It is usually the case that I write less during a flare, but in this instance there is another reason I have not been posting – guilt.

Several months ago I made the commitment to write a post a week for Everyday Health.com. I felt it would be a great way to help raise awareness for Fibromyalgia and add some good articles to my writing portfolio. What I didn’t expect was how it would affect my writing on my own blog. I like to come here sometimes and just blurt stuff out, or share a random thought or two. I really have no rules or structure for this blog. It is purely me in the moment. Everyday Health is different. There I put on my serious and authoritative hat. My writing there takes a different level of commitment and energy from me, and last week I decided I was not up for submitting an article.

But that decision was not without consequence. I felt guilty for not following through on a commitment. And every time I considered writing a post here, the guilt of not writing one there kept me away. That is not what I signed up for. Bottom line, this blog is my priority. So I really had to take the time to consider where I went wrong and how I could correct it. Where I went wrong was in agreeing to writing there in the first place. It was my ego that fueled that decision. When they contacted me to be a featured blogger for them, I was thrilled by the compliment and it was that euphoria that motivated my decision. I did not consider how it would affect the work that I am already doing here and with the other components of FibroHaven.

Priorities: FibroHaven is my priority, in all its forms, and anything that takes me away from my commitment to it, or minimizes my experience with it is not beneficial to me.

I am no longer going to be writing for Everyday Health. I appreciate the opportunity they gave me, but I recognize that I have not given it my best, and I will not settle for doing anything less.

Perspective and priorities. I know you have heard it said, listen to your body. Pain is your bodies way of trying to tell you something. Sure the message with this flare may have been as simple as “it is hot,” but I’m choosing to believe there is a bigger message, and I feel confident that I focused on the right one. It feels good to be back!

I spent my twenties in a haze of parties and adventure. Oh the fun I had! I paid for that fun in my thirties. My thirties have been a decade of pain and frustration. After developing Fibromyalgia in my late twenties, I spent most of my thirties a slave to my symptoms.

But that is all changing. It started with this blog, and all the research I do to stay informed and up to date. Knowledge is power I tell you. I am learning more and more that I can feel better, and that there are things I can do to take back a measurable amount of control over my health. These are all resources and tips I have shared with you in the hundred plus posts I have written. I try very hard to practice what I preach, and the more I do, the better I feel.

So bring on forty. Forty is going to be my decade for health and healing, for wealth and wellness. I am ready for forty!

Pardon me while I spend this week celebrating. I have many things I want to share with you – like the great support group meeting I had last week attended by Lynne Matallana of the National Fibromyalgia Association. What a treat that was! But I am not going to be sitting in front of my computer too much this week. Instead I am going to be practicing yoga and meditation, going to lunch with family and friends, getting pedicures with my big sis, and honoring my health as much as possible to prepare for this next decade.

I am so looking forward to what forty will bring, and I am grateful to have this space and all of you to share it with. You are a gift I treasure each day. Thank you for taking the time to read what I write and occasionally leave a comment when the mood strikes. I appreciate you more than you know!

Happy Birthday to me!

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!