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…

How often have we struggled with our new reality?

How often have we grown weary and frustrated with trying to decide who we are and how we now matter?

How often have we wondered if it will ever get better?

For many years I ignored and hid my struggles. My symptoms were moderate enough for me to do so, and the only person who really knew my reality was my husband. But then my crash came and the days of pretending were over. I was faced with having to accept a version of myself that I thought was weaker, useless, less than. It took me a long time (and it is something I continuously work on) to determine that I still matter – that I can still have a purpose. I may never have the freedom again that comes with perfect health, but that does not mean I cannot have a meaningful and inspiring life. My mind still reflects back to the “healthy” me, and there are days I long to be her, but I have found a sense of value and purpose in the chronically ill me. I am whole, despite all that is missing. And truthfully, I like the new me more than I ever did the active and successful (and high strung and stressed out) former me.

Now how do I share my personal epiphany and encourage my new member without sounding preachy or all-knowing? Because if you read my blog regularly, you know I do not have all the answers. I am a work in progress, and I do a lot of my work in a very public way by sharing it here.

My message to my new member was this: Until you learn to let go of who you were, and accept who you currently are, you will not be able to move forward. You will be stuck trying to get back to a “you” your body is no longer capable of being. By continually looking back, you are fostering frustration and anger rather than acceptance and possibility. Examine who you are now, come to terms with it, and then make a plan to move forward.

Accepting where you currently are is not the same as accepting you will always be in this state. It is simply the first step in readying yourself to move forward. You need to be aware and honest with yourself so you can focus on doing the things that are within your ability that will help you move forward. Let go of what you used to be able to do, and work within your current capabilities. And it is work. But you can improve. You can get better. But only by letting go, and working to move forward.

We all have interests and desires and passions. Some we have had to let go and can be no more to us than comforting memories of the past. But others are still attainable and aid us in moving forward. For me, it is my writing. Some days my brain and body will not cooperate so I don’t even try. There are days when it is too miserable to sit at my computer, but my brain is active and swirling with great writing ideas. Now if I were totally together and on top of things, I would make myself comfortable on those days and use an audio recorder to capture the words running through my brain. But do I? No – not yet. I am a work in progress.

But here is the thing, by accepting where I am, I have opened the door and stepped out onto the path towards improvement and growth. I do not know exactly where I am going, I just know I refuse to stay still. Each day I carve out a new piece of my path. Somedays I make great progress, others I just kick some dirt around and examine the scenery. But the one thing I will never do on my path is just lay down and let the weeds grow over me. I like myself way too much to do that, and I am too excited to see where my road is leading.

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…

Throughout your life there’s a voice that only you can hear. It’s a call to the true value of your life – a call to make a difference that only you can make. If you never hear it, something magical will be lost. But if you hear it and heed it, then your life will become a wonderful romance and adventure. Now is the time. Jump in. Make a splash. Change the world.

Romance, adventure, a magical life – isn’t that what we all want? What we all hope to achieve? My voice is telling me I am not currently on that path, but that is okay, because I can hear my voice, and I trust it to guide me back. I trust me. I trust my journey, with all its offshoots and distractions. Today my splash is little, a ripple really, but I am building up momentum for a giant cannonball.

What is your voice telling you? Are you ready for a little romance and adventure?

I’ve been asked this question a lot since returning to work. What did you do before this? It is an interesting question and I don’t think I have decided how to answer it yet.

Do I tell them about the accident that brought my life to a screeching hault? Do I tell them about the months spent struggling to regain my ability to speak coherently? Do I tell them about the pain, the bouts of depression, the fatigue, and general disconnect from life? Do I tell them about starting this blog? Do I tell them how I was so inspired by this blog I started FibroHaven Foundation?

No, I don’t think I should. Essentially what they are asking me is how are you qualified to be in this position? What have you done in your past to allow you to do what you are doing in your present? They want to know what I have done, not what I have been through.

I had many successful years working with Fibromyalgia before the accident. I am plenty qualified. But I am also concerned about how my illness may be perceived. It is something we have discussed at support group meetings in the past. Do you tell your employer/prospective employer that you are living with a chronic illness? If ever there was a slippery slope…

My current employer knows all about FibroHaven and seems completely unphased by it. He is actually quite impressed with what I have accomplished. But early on in my job search I am certain I was not chosen for a position because my potential employer read my blog. He basically patted me on the back and said “You are doing great things with FibroHaven. Keep it up.” This came shortly after he mentioned he has two close relatives with Fibromyalgia. Do you think his experience with them prejudiced his value of me? I do.

So how much do I share? I am not sure. The only thing I am certain of is that I do not want my diagnosis of Fibromyalgia to influence what my colleagues think I am capable of doing. I want my actions to determine my value, not my diagnosis.

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.

We all know that. So if change is constant, the only variable then is in our ability to adapt.

I was watching the Amazing Race Sunday night. It really is an interesting study on human nature and the ability to adapt to constant change – to the unknown. It is remarkable how certain temperaments rise to the top as they excel at adapting to unknown situations, while others battle themselves and their own teammates while flailing wildly at the unknown.

The ever important clue box is a great example of what I mean. Teams are given a general direction and told “that is where you will find your next clue.” So each team approaches the area not sure exactly where they must go.

Some teams calmly read their directions for more clues and talk it through, looking around together until they spot the box.

Other teams divide up to cover more ground, keeping each other updated and staying connected with their voices.

Then there are the teams that run around wildly yelling at each other, oblivious to the details of their surroundings. These are the teams that usually run past the box three or four times before spotting it. They are frantic and manic. They are out of breath, angry with each other, and completely out of tune with their environment.

For years my husband and I have joked we would make a great team on the Amazing Race. If I had to judge, I would say we would be most like the first team type – sticking together to take in our surroundings and find the clues. In fact, I am certain that is the kind of team we would be.

Change is not coming. Change is here.

Last Thursday my husband called me in the middle of his work day, except it was no longer a work day for him. After surviving many rounds of layoffs, this time he was the one terminated. He was calm when he relayed this life altering news to me. “Oh no, oh no, oh no, oh no,” was the only thing I could say. But he calmed me down and told me the one thing I believe to be universally true, “We are going to be okay.”

As soon as I slowed down long enough to recognize his calmness and listen to the truth in his words, I knew it was true. We are going to be okay.

Where we have been.

After the accident in late 2006, I tried to get back to working full-time, but my body could not handle the stress of it. My symptoms continued to worsen to the point that we both realized what I needed most was time. After much consideration, and resolving ourselves to the financial adjustments we would need to make, I quit working and have been focusing on my health and wellbeing ever since.

FibroHaven is the product of my time away from working, and I am so proud of what I have created – my blog, my support group, and my facebook community. It is through all of the FibroHaven components that I have learned so much more about who I am, why I have Fibromyalgia, and what I can do to improve my quality of life. I have a new spiritual awareness attained through the many mind-body practices I have introduced to my life, like yoga and meditation.

Each step of my journey away from work and with FibroHaven, whether I was struggling or succeeding, my husband was right there with me – taking it all in, and trying to interpret what it all means.

The time away from the stress of working has been a true gift to me. It has not been easy on our lifestyle. We gave up a lot of the comfort and luxuries that comes with two incomes. I am not healed, I am not cured, but I am better. Well enough that I know it is time for me to contribute again.

Strangely enough, something happened this week to reinforce that it is time for me to change my focus. Everyday I spend a lot of time on FibroHaven’s facebook page. It was a great complement to my blog, and a quick way to share timely, relevant links and Fibromyalgia resources. I was very happy with the work I had been doing.

Monday morning I shared my most recent blog post there, and then went off to my noon yoga class. When I came home and sat down at my computer I headed straight for facebook, but my page was gone:

The page you requested was not found.

It was like a shot to my gut – another loss. All that work gone. Disappeared! Sickening.

Today, I am kind of over it. Sad, yes. Disappointed, sure. But I recognize how much time and effort I spent on it and I realize that my time and effort are best suited elsewhere now.

You see I am part of a team, and my team has had a set back. But we are not out of the race. No way!

Where we are going.

We are not out of the race, because together we have calmly taken in our surroundings and recognized what we need to do to move on. My husband is a talented man. He will find work again. But in the meantime, I need to come off sabbatical and contribute. This means less time to spend on FibroHaven.

Not to worry. My blog is here to stay. I will just have less time for all the ancillary projects – like the now gone facebook page, and like my local support group. I am cutting meetings from two a month down to one, and I will be asking for someone to step up and assist me in running the group. There were also several other things I have been working on that will either not happen, or will have to wait.

Yesterday was our 6 year wedding anniversary. We spent the day focused and excited about our future. Change is here and we are ready to adapt – calmly, and together. I can’t wait to see where the next clue takes us.

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.

Last month I started a FibroHaven page on facebook. I have been promoting it quietly with a link on my sidebar, and with little fanfare we are already up to over 200 participants. It is meant to be a compliment to my blog and a quick way for me to share current articles and information. You do not need sign up on facebook to participate. Just click on this link to FibroHaven on facebook and join in on the conversation. If you are signed up on facebook, click on the “become a fan” button and the daily posts will feed automatically to your home page. I hope you enjoy this new format of FibroHaven. I know I am!

Today’s FibroHaven facebook post is shared from Lisa at invisibleillnessweek.com. In preparation of Invisible Illness Week, Sept 14-18, she has created a fun exercise to share 30 things about ourselves. If you have a blog of your own you may want to participate by sharing your answers there, but if you do not have a blog, you can share you answers in a discussion at FibroHaven on facebook. Lisa has created a great way to express ourselves to each other. Maybe this will be the tool you need to explain your experience and struggles with chronic illness to your loves ones. It is worth the try!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1996

4. The biggest adjustment I’ve had to make is: Losing my ability to be a full-time, productive worker. So much of my self-worth was invested in my career and it has been hard to redefine myself and understand my new purpose.

5. Most people assume: That my symptoms are mild. Because I am so  active in growing FibroHaven’s support community, I often hear remarks like “I wish I had your energy.” or “I wish I could do as much as you are able to.” I am excellent at hiding my misery. My husband sees it, and tells me I should not sugar coat how I am feeling. I talk lightly of my symptoms because it helps me and my mindset not to dwell. It is really for selfish reasons that I do not share the depths of my symptoms.

6. The hardest part about mornings are: Pain, stiffness, fatigue, dizziness – and my poor expectant puppies who are always so joyful in the morning, and confused by my sluggishness.

7. My favorite medical TV show is: I guess it would have to be ER since I watched it from its inception to its end.

8. A gadget I couldn’t live without is: My toes! Maybe not quite a gadget, but I can pick up almost anything with my toes. They constantly save me from the pain of bending over.

9. The hardest part about nights are: Looking back on the things I had planned to accomplish that day, but did not get done.

10. Each day I take 1 or none pills & 3 vitamins.

11. Regarding alternative treatments I: Am a huge proponent in yoga and meditation, but would love to be able to try more like acupuncture, massage, & biofeedback. It is so cost prohibited (see number 4). I am always looking for new cheap/free alternative treatments and find many by joining groups on Meetup. Some charge small fees, but many do not.  I have even found free yoga classes at local libraries and free meditation at a local center.

12. If I had to choose between an invisible illness or visible I would choose: Had to chose – I would chose the invisible illness I currently have as I have 13 years of experience in dealing with it. I would never choose to start over with a new illness.

13. Regarding working and career: I miss being the sassy, successful sales rep I once was. I miss connecting with people on that level. But I love the direction of my new career as a freelance writer. I can work from home, and around my symptoms, but it is not yet as financially rewarding as my previous career. I miss the freedom money brings. I miss dressing up to meet a new client. I miss feeling really good at something.

14. People would be surprised to know: That I am not as in control as I appear. I am full of pride and bravado. It makes me feel less vulnerable.

15. The hardest thing to accept about my new reality has been: Letting go of my old reality, and all the control I had. Type A, control freak faced with a debilitating illness… It may take me 13 more years to accept my new reality. Except I am convinced in 13 more years “debilitating illness” will not be a part of my vocabulary!

16. Something I never thought I could do with my illness that I did was: Support and encourage others. In the depths of my despair, when I was looking for guidance, I never thought I could become a voice for others. But I have, and it has helped me more than I would ever have thought possible. Thank you for letting me be a voice for all of us.

17. The commercials about my illness: Make me cringe! Take a pill, and then life will be all sunshine and rainbows. BARF!

18. Something I really miss doing since I was diagnosed is: Dancing… Moving my body in a carefree and painless way. I would sometimes go out with my friends and dance for 6 hours straight. I would just feel the music and let it move my body. I can’t believe that this body was once able to move like that. But it was, and I miss it.

19. It was really hard to have to give up: Should I talk about my sales career again, or would that be redundant? It was very, very, very hard for me to give that up. Almost like starting your own business, turning it into a great success, and then just handing it off to someone else to reap the benefits. Even worse, that someone lost all my best accounts and ruined my territory. Such a shame!

20. A new hobby I have taken up since my diagnosis is: I was going to say my blog, but that is my passion, not my hobby. Then the answer must be poker! My husband and I began playing in a regular Friday night came several years ago. I seldom missed a week, even if I was not feeling well, because poker is sometimes the only thing that can distract me from my pain. There is a level of focus and concentration that is needed to play well that takes me right out of my pain and fatigue. And I do play well. Poker is fun!

21. If I could have one day of feeling normal again I would: Take my hubby and my dogs and backpack around  Catalina Island. Something we did back in my health days (minus the dogs – no dogs allowed – but this is a fantasy, right). It is like having your own private island with isolated beaches to explore. I miss the feeling of strapping all that I need onto my back and heading out for the day. Freedom! A day of freedom from this body would be priceless!

22. My illness has taught me: That I am not invincible. That I am not in control. That my pain is there for a reason. Still working on figuring out the reason.

23. Want to know a secret? One thing people say that gets under my skin is: “It could be worse.” They are right, but pointing out that it could be worse, does nothing to actually make it better.

24. But I love it when people: Treat me like they always have – like I am still an intelligent, funny, viable person – like I still matter.

25. My favorite motto, scripture, quote that gets me through tough times is: “It could be worse.” Okay, no –  just kidding! That is what I meant by still being funny. We have to have a sense of humor, right?

I don’t think I have a saying that gets me through tough times, but I do love and believe in the saying “The harder I work that luckier I get.” There is going to come a day when my symptoms will be in control, and I know I will be considered lucky, but I can assure you luck doesn’t just happen. It is going to take a lot of hard work for me to get that lucky.

26. When someone is diagnosed I’d like to tell them: There is hope. You are not alone. You are not crazy. What you are experiencing is real.

27. Something that has surprised me about living with an illness is: That my marriage has thrived along the way. Somehow we have managed to grow together instead of apart. You probably think I am one of the lucky ones – and I am! – but again, luck is not random. I am lucky and our marriage is strong because we have worked hard at it, and we are still a work in progress. I am still learning to communicate and to trust and to let go.

28. The nicest thing someone did for me when I wasn’t feeling well was: Accepted me and my limitations, and did not judge or try to fix things. They were just there for me while letting me be.

29. I’m involved with Invisible Illness Week because: Because it is important. Because Fibromyalgia is invisible, and like so many other chronic illnesses it is misunderstood. And because it is up to us to help people understand. We cannot just sit back and will them to understand. We have to open the doors of communication and use productive means to enlighten everyone to our invisible illnesses. Not everyone will get it, but with each that does we are that much improved.

30. The fact that you read this list makes me feel: Like you care. This is so much longer than I anticipated it would be. I had a lot to say, and everything I said was pure and honest. It felt really great to do this exercise, and I appreciate you for taking the time to read it.