Celebrating Showing Up

On this day last year, I showed up for my very first day of yoga teacher training. I showed up, and I wasn’t even enrolled. I was #7 on the wait list, but sitting home, waiting for an email letting me know a space had opened up didn’t feel right, so I showed up.

And the class was full, and there wasn’t a space, but I approached the teacher anyways, and before she could tell me “No, sorry, there is no space for you.” I had blurted out my story – “14 years of chronic illness, was introduced to yoga last year, the only movement I have been able to do, feeling so much better, want to understand why, want to share with others…” “Okay, okay” she said to me,” go sit down. You are in.”

Those three little words changed my life. Literally. This past year has been a roller coaster of self discovery, improved health, and a deeper, more meaningful existence. I see the world with a completely new lens, a more loving, compassionate, and hopeful lens. And it is all do to the practice and philosophy of yoga – and to the fact that I keep showing up – even with my ever present chronic illness and when the old instincts to shut down, isolate, and retreat are loudly screaming at me. I grab my mat, step out the door, and do the best I can that day. And if my best is just being there, that is what I do. I show up.

Celebrating My Birthday & Re-Birthday

On this day last year I was reborn, a new person, a new me. And I really like the new me. I still have a lot of kinks to work out, and a lot more to explore and discover about myself. It is a lifelong process. But the changes have been radical and significant. And here is the really cool thing about this day. It is my actual birthday. I was born on this day 42 years ago. For 42 years on this day I have celebrated my birthday, but today this day has new and deeper significance.

I didn’t have to show up to yoga school on this day last year, in fact I almost didn’t. I told myself it was just not meant to be at that time, and I could sign up again when the new program began. In fact, I had convinced myself it was a good thing I did not get in because it meant I would have more time to heal and strengthen my body, and to improve my personal practice. But something drove me to show up – my gut, my intuition, my desire to heal. I am so glad I listened.

Celebrating You

So today I have a lot to celebrate. Today is a very good day. And I am so fortunate and blessed to have this wonderful community to share my happiness with. Yes, I created FibroHaven, and yes, I organize and facilitate FibroHaven, but it would be nothing if not for you. If not for each of you who shows up in your own way – at local meetings, leaving comments on this blog, commenting and interacting on our incredible Facebook page – if not for each of you showing up, there would be no community. So thank you – thank you for adding to my blessings and giving me so much to celebrate today and everyday.

I am committed to continue to bring all my growth, improvements, and insights back to FibroHaven. Look for a new post in The Blue Print Series soon, and other exciting news about what I am doing personally that is going to help enrich our community. I have said it before, but never tire of saying it – Community is Everything.

Thank you!

Much Love & Celebration,

Dannette

Asking for help is something I have never been good at, and accepting unsolicited help is even harder for me. This is something I have been working on as I feel it is due to an unhealthy amount of pride and ego. I never like to seem weak or vulnerable. Very primal of me really, like a pack animal that hides illness or injury to continue to blend in with the herd and not appear like easy prey. It is a useful survival instinct, but one that has not always served me well.

And I need look no further than FibroHaven to see the wonderful results of asking for and accepting help. Take a quick look around this website and you can see my attention has been elsewhere lately. And as I shared recently, it is not from a lack of love or interest, it is simply a choice to spend my time and energy where it is best suited right now and not wear myself out by doing more than serves me.

So there have been very few blog posts and local support group meetings, and only sporadic Facebook updates. FibroHaven had definitely lost some momentum. And people noticed. And as I began thinking about how I could address the situation I remembered an offer of help that had come to me some months previous. One of the most active, friendly, and positive members of our online community had generously offered to get more involved with FH and help in any way that she could. So I contacted her and asked if she would be interested in becoming an admin on our Facebook page. To my delight she said yes and our Facebook community has never been better!

Pascale has enlivened the page with new energy and interest – sharing everything from relaxing meditations to important information on tinnitus. People are engaged and interested, offering their opinions and experiences and caring when others offer theirs. Each time I check in I see there are new members and new conversations on interesting topics. And because we all experience FM and chronic illness differently, I am realizing how important and useful it is to have more than one voice posting and encouraging conversation.

When Pascale first extended her offer of help, I was interested, but not clear on how I would utilize her. But when the time was right and the need increasingly apparent, it became very clear. I am so glad I reached back out to her and asked. And I am so proud to have her as a new voice for FH and in our FM community. And judging by the many conversations going on over there right now, so are you!

So please join me in welcoming Pascale, and thanking her for stepping in when it was most needed. Like all of us, she is doing this while continuously learning to live well with chronic illness. Some days we manage better than others. Somedays our voices are lively and active, and somedays we need to retreat. But with such a wonderful and caring community to return to, you can be sure FibroHaven will continue to inform, encourage, and inspire.

And thank you to The Fibromyalgia Network for taking notice of the new energy on FibroHaven and sharing our page with your community. You have been a positive and informative resource for all of us for many years. The work you do in invaluable!

Much Love,
Dannette

It’s been one of those weeks.

One of those weeks when all I have wanted to do is shut myself up in my room and lose myself in books, movies, and God willing, some good sleep. It is my (and I am sure most of our) default position to “retreat” and isolate when I am feeling bad. And it is a desire I have given in to many times throughout my illness.

But I have noticed something.

I have noticed that by staying present and showing up for my life and my responsibilities, I am frequently rewarded with beautiful distractions from the symptoms that would otherwise consume me.

This has been an incredibly high pain week for me. In the past my pain would have been the reason for not moving, but I am in yoga school now, and I cannot make the decision to isolate myself without making the decision to miss the instruction I find so deeply rewarding.

Tuesday

So Tuesday morning I dragged my stiff, aching body to an 8AM yoga class. For ninety minutes I moved, stretched, and warmed my body from the inside out, and while still very much present, my pain became more tolerable.

But then the class work began, and for three hours we sat discussing the philosophy of yoga. Several times throughout the day, as my body got stiffer and stiffer, I told myself “Just go home.” But I stayed. I stayed because I knew my misery would not change if I were home alone with it, and I very much wanted to be present for the lessons of the day. So I stayed.

We ended the day with another 90 minute yoga session, and while still experiencing pain, I was better than I had been in the morning – and much better than if I had stayed home all day focusing on my pain.

Wednesday

Wednesday evening we had a support group meeting. I started our local group because I understand the need for community – the need to connect with others who understand how you are feeling. But I was miserable, and did not want to go. Yet at 6:30 I found myself there, surrounded by other members having an equally bad day (week, month). We ate and talked and had a really great time – the very best reward for making the effort and commitment  to show up.

Thursday

Thursday was much the same as Tuesday – yoga class all day. In my mind Wednesday evening I was preparing the email I was going to send to my instructor, explaining why I was not in class Thursday morning, and yet Thursday morning came, and there I found myself – stretching and moving with my fellow classmates.

After our morning practice, we sat in a circle and did what my teacher calls “checking in.” Each student takes a minute to share where they are and how they are feeling about their practice. I sat and listened as student after student shared what drives them and motivates them in their practice – what inspires them to keep showing up. Again, I was deeply humbled by the universal nature of suffering.

From divorce and custody issues, to the death of a parent, to abuse and addiction, to just generally being lost about the purpose of life –  there was a lot of pain being worked out and worked through in that room. After everyone had shared we sat silently, absorbing the beauty of the moment, and then my teacher asked, “How many of you feel better just by being here today?” Every hand in the room went up.

Community

On FibroHaven’s Facebook page I wrote this: There is nothing I can do alone that isn’t infinitely improved with the support of community. I founded FibroHaven on this belief: Community is everything. I directly attribute my growth and healing to the strength I gain by surrounding myself and connecting with those in the communities I have chosen to be a part of. Most people in my yoga community do not know I live with fibromyalgia. It is not important that they do know. I have my support group for that. What is important is that I have found (or created) communities that nourish and sustain me, and most importantly communities that inspire me to keep showing up.

What motivates and nourishes you?

What do you love? Where do you find community? It doesn’t have to be through yoga. And some people even shy away from support groups. But each of us has something that we love and that inspires us. Is it reading and discussing books? Check out your library for a local book club. Is it knitting? What a great way to spend some time, knitting and sharing patterns and design ideas with like-minded people. Do you love your church? Maybe there is a committee you can volunteer for. Or if you are interested in volunteer work, find a cause you are passionate about and volunteer for them.

There are days when yes, it is best to honor your body and rest. But I think we have all experienced the days when somehow we managed to show up to a scheduled event, and were rewarded for doing so with laughter and a lighter heart. You walk into a room and see a familiar smile, and your face feels lighter. You hear a familiar laugh and your heart warms. We need community, even if only for a much needed and welcomed distraction from the reality of living with chronic illness.

Friday

Today is Friday, and my pain is better. Showing up this week did not make me worse or increase my pain. Showing up this week nourished me, and encouraged me to keep showing up. That is what community does.

I have learned many things so far on my path, and the one lesson that appears repeatedly is that this is a process.

Healing takes time, and although I am caring for myself better than I ever have, there is still an unpredictable nature to fibromyalgia I cannot avoid. Setbacks, sidesteps, and distractions are all part of the process. That is an important point to emphasis – they are PART OF THE PROCESS. They do not separate me from the process, but they do challenge me to redirect my focus and discipline myself to get back on track when the distraction has passed.

The retreat I attended took place at a beautiful desert center in the community of Joshua Tree – the same Joshua Tree that inspired U2′s fifth album. The setting was beautiful and serene and COLD! Each building at the retreat center was designed by famed architect Frank Lloyd Wright. Wright designed buildings in a way to bring the outside in, meaning there were lots and lots of uncovered windows giving a sense that we were sitting in nature rather than a in building. Beautiful and quirky yes, but the design also made the rooms drafty and cool.

Our first evening we settled in the great room by the cozy fireplace for a restorative yoga practice. I chose an unfortunate place to lay my mat, and within 5 minutes I began flaring up from the cold draft hitting the back of my neck. I moved my mat to a more comfortable spot closer to the fire and was able to really enjoy the practice, but the damage was already done. I was in a flare.

One of the things I love most about yoga is the gentle way it warms my body from the inside out.

It is like an internal heating pad! And for a person with a regulated central nervous system, this internal warming would have corrected any discomfort caused by the cold draft. But for me it was too late.

I lay in bed that first night unable to sleep because of the extreme pain in my neck and head. The house started buzzing early that next morning with energy and excitement so I got up to join in. In truth I was pretty miserable, but I did not want to shut myself off from the other amazing women who were a part of the retreat. I was drawn to the buzz of energy and sound of laughter.

The last thing I wanted from this retreat was to experience a flare while I was there, but I chose not to let it become the focus of my experience. Instead I tailored my experience around it.

I participated in the gentle morning yoga practice but skipped the active evening session. I made sure I had plenty to eat and drank lots of water to keep hydrated in the dry desert air. And I accepted the help when my massage therapist friend generously offered to work on my neck. Massage is something I have resisted for some reason, and oh how silly of me! The tension in my neck was so great from the cold draft that my left eye was twitching uncontrollably. She was able to release the tension and helped me to assure my flare would be shorted lived and that I would be able to enjoy my remaining time at the retreat. I also credit my regular yoga practice for decreasing my flares and recovery time.

Today I am in what I call the “hang-over” stage of a flare.

The worst is over, but I still need to be mindful not to over do it and re-trigger. I know the gentle yoga sessions helped me, along with the wonderful massage, but in truth the thing that helped me most was the friendship and community I felt there.

I had the option of staying in my room to rest and recover, but instead I chose to interact with the wonderful women there. Their kindness, sharing, and laughter restored me and helped me remember I do not suffer alone. I was the only woman at the retreat with fibromyalgia, but each woman there is dealing with her own type of suffering – depression, addiction, abuse – and their honesty and bravery inspired me. I felt safe and understood amongst them.

It was unfortunate that I experienced a flare while at the retreat, but in a way it opened me up even greater to the experience, and because I was open about how I was feeling and did not try to hide it,  it became an avenue for others to share their own pains and struggles.

It is so humbling and empowering to recognize that we are not unique in our struggles, and most especially to recognize that we are not alone. We all live with our own particular pains and suffering. It is how we deal with those pains that either separates us or brings us together.

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…

I was surfing around through my old posts, looking for an appropriate one to share, and I came across this post I originally published October 13, 2008, the same month I began my blog.

Selflessly Selfish

I struggle every day with who I am. I am different because of the Fibromyalgia. I am not the independent, fiercely productive person I once was.

Every morning I envy (but am grateful for) my husband and his ability to jump out of bed, hop into the shower, and rush out the door on his way to a destination where he knows his purpose and is able to perform at a high level. I lie in bed with muscle soreness, a dizzy head and complete exhaustion and wonder, “how am I going to contribute today?”

And it is not simply how am I going to contribute to my house and my husband, but how am I going to contribute to my physical and emotional wellbeing, and how am I going to contribute to the world around me.

Sometimes it is the smallest things I do that contribute the most and make me feel the best. I dry my hands on a dishtowel rather than a paper towel. Yippee! I just saved a tree. I pick up the wrapper from a straw that a fellow patron at the coffee shop has let the wind take away. She doesn’t know it, but I do and it makes me feel good.

There are days when I let the wrapper blow away. Days when I tell myself I am in too much pain to bother, but I never feel good about those moments. I always feel that I have given up or given in to the Fibromyalgia. If too many of those moments build up I get depressed, and then it becomes even harder to live productively with FM.

That is the point I am trying to make. I struggle to be a better person for myself. To be someone that, in spite of all that is different in my life, I still feel useful and productive, and that in very small ways I am contributing to my world. By trying to be conscientious and selfless I am being selfish, because I am the one who benefits the most.  And the small things add up.  They really do make a difference.

So what did I do that was so great today? Nothing so far, but the day is not over. I still have time.

Wow! Rereading this post really took me back. It really made me take a moment and reflect on how much has changed in the 18 months since I began this blog.

And that is what I want you to know about me: I have changed. I am different. I am improved.

I am no longer at the mercy of Fibromyalgia. I am a participant in my health, not an onlooker. And I got here by making many small changes:

I created a community, starting with this blog, which brought people like Kathy into my life. I began sharing more and worring less because I have a greater support foundation to rely on.

I began doing research and filtering the abundance of information on Fibromyalgia to determine what fit best for me. I determined a holistic approach was more appropriate for me than the pharmaceutical approach taken by most doctors.

I added supplements to my daily care.

I began practicing yoga and cut gluten out of my diet. Through research, trial, and error (and believe me there were years of error) I found what works for me and my health.

I slowed down…… and took many baby steps to avoid making those painful leaps.

This has been a true journey, and I am so grateful for how far I have come. It was not without work, setbacks, and a lot of effort. But the foundation for my change came from the belief that I could improve, and that it was up to me to figure out how.

I am still frequently tired and dizzy in the mornings. I still have daily symptoms. I am not always able to contribute. But my progress is discernible.

I hope this encourages you. I hope you are able to look closely at your daily habits and routines, and distinguish what nourishes you from what holds you back. There are many components to Fibromyalgia we cannot control. Take a look at what you can, and honor yourself by making the best choices for your particular situation. You can change. You can improve. Believe it!

First let me start by saying I am thrilled to be working again. Thrilled that my body is cooperating for the most part. Thrilled to be out in the world, making connections, networking, and feeling like a productive person again. Is it horrible that my self worth is so closely tied to my ability to make a paycheck?

All my work on FibroHaven was satisfying emotionally and spiritually, but never financially. I LIKE MONEY! I like the freedom it brings. I like contributing to my household again. I like seeing a light at the end of our Debt Highway.

That being said, I have missed FibroHaven – missed my blog and facebook community, missed tweeting with the FM community on Twitter, missed the local members of my support group and our therapeutic meetings. It has all been neglected.

I think we all clearly understand about how hard it is to find balance living daily with chronic illness. It is always a matter of “If I do this, I know I will not be able to do that.” Prioritizing, making sacrifices, coming to terms with limitations, and on and on. Living well becomes a matter of balancing options and making smart choices.

I can tell you the smart choices I have been making for the better part of a year are really paying off now. I completely contribute my ability to work to the elimination of gluten from my diet and to my practicing yoga. My body has responded and rewards me every day. Even on bad days, I recover more quickly and have new tools – breathing exercises, stretching, etc. – to help me through.

But my heart is still in FibroHaven. So now it is up to me to find the balance. I know I can. I know I will.

And breathe…

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.

I was thrilled to get the opportunity to meet Lynne Matallana, founder of the NFA. We share a passion to support, educate, and raise Fibromyalgia awareness. I have looked to her example many times over the course of the last several months since beginning my blog and support group. Meeting her in person did not disappoint, and only fueled my desire to make a difference in our community as she has.

Dr. Andrew Blumenfeld of The Neurology Center was the featured speaker. He focused on Fibromyalgia as a disease of the central nervous system and gave an exceptional presentation. He faced a hungry audience with the grace of a man confident in his understanding of our complicated disease – and he does classify Fibromyalgia as a disease – not a syndrome, disorder, condition,.etc. In his estimation, a medical condition that produces disability is a disease. Then Fibromyalgia most certainly is a disease.

I have long been convinced that Fibromyalgia is a neurological disorder, and the newest research supports that it is. I asked Dr. Blumenfeld if there would eventually be some form of brain imaging test for a definitive diagnosis of Fibromyalgia, and he believes there will be. In fact the main reason he gave for there not being one currently is the cost involved. It is encouraging to know that one day – maybe soon – there will be a direct route to a diagnosis, not the “process of elimination” route we all had to take to get our diagnosis.

The evening was a great success. I received so many comments of appreciation from the audience. It reinforced my belief that we do not take our diagnosis in stride; that we are all looking for answers; that we want to feel supported and understood; and that we want to be well. I appreciate the NFA asking me to take part in their Fibro Focus series and am very excited to be able to share with you the information on the next six Fibro Focus events scheduled around the country.

Fibro Focus Colorado

Date: September 19, 2009, 5:00PM.

Contact: Lannette Johnson, lannette@colofibro.org, 303.847.3421

Location: Pinaacle Events Center, 1001 W 84th Ave, Federal Heights, CO

Fibro Focus Illinois

Date: September 22, 2009, 7:00PM

Contact: Diane, dabulls@gmail.com, 847.895.9596

Location: Schaumburg Township Building, 1 Illinois Blvd., Hoffman Estates (Chicago), IL

Fibro Focus New York

Date: October, 1 2009, 6:30PM

Contact: Kathy Zabliski, kzabliski@verizon.net, 315.946.4498

Location: Thompson Hospital Simulator Room, 350 Parrish St., Canadaigua, NY

Fibro Focus Pennsylvania

Date: October 6, 2009, 7:00PM

Contact: Tennille Morrow, paws_rule@comcast.net

Location: Lancaster General Health Campus, 3rd Floor Conference Room, 2100 Harrisburg Pike, Lancaster, PA

Fibro Focus North Carolina

Date: October 19, 2009 – time TBD

Contact: Cathy McCarthy, Triangle Positive Energy Fibromyalgia Group, csuspect@mindspring.com, 919.489.5316

Location: Triangle Region, North Carolina

Fibro Focus Michigan

Date: November 12, 2009, 1:00PM

Contact: Ruthann Bruce, arubobb@wideopenwest.com, 734.981.2519

Location: Merriman Rd Baptist Church, 2055 Merriman Rd., Garden City, MI

Are any of these events near you? I hope so. It will be well worth the investment of your time to attend. You will be amongst friends, find people who understand, and learn from a Fibromyalgia literate doctor from your community.

I would like to give special thanks to Megan at the NFA for all her behind the scene organizing of the event, and for the photos you see above. And also to Pfizer’s marketing team, Liz and Katie from Weiss Comm, for all the hard work they did. It was a joy working with all of you. Best of luck on your future Fibro Focus events.

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!