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!

How do you filter all this information?

Who do you believe?

Where do you go for your expert advice?

Fibromyalgia has slowly become current. And by that I mean with FDA approval of drugs to treat FM, and with the marketing that comes along with it – to us via media, and to health practitioners via free samples and kick backs – Fibromyalgia is visible. So of course every health expert and health blog must have something to say on it or they are not being current. This benefits us in a lot of ways, but it also creates a problem of authority.

Who do you trust?

Who do you believe?

I recently received an email asking me about a current book on Fibromyalgia. Is it authentic? Is it worth the read? Is the author simply looking to cash in on the newest hot topic?

Having not read the book myself I could easily have said “sorry I have not read it” and moved on, but by creating this blog I have positioned myself as a type of authority on Fibromyalgia (and I believe patient experts are the best experts), so I shared with her my general opinion on all Fibromyalgia related information out there:

Knowledge is power. If you are interested enough from researching the book, I say get it and read it. It may turn out that you disagree with the authors findings/opinions on FM, but it can often be just as helpful to read literature we disagree with, as it is to read a tried and true information source.

But be a savvy reader. Blind faith, blind trust in “authority” is just scary. Especially in this age of the web when anyone can write and publish an article, and call themselves an expert. A healthy amount of skepticism is good. Trust yourself first, and then take away from your research the things that serve you best. I have had several people tell me that yoga sucks! I disagree, but I leave it at that. It is not up to me to convince them otherwise. Because truly, the only thing I am an authority on is my daily battle with Fibromyalgia. Keep this in mind when reading all the “expert” advice out there; you are your own best authority.

And the sign said everybody welcome, come in, kneel down and pray
But when they passed around the plate at the end of it all,
I didn’t have a penny to pay, so I got me a pen and a paper and I made up my own little sign
I said thank you Lord for thinking about me, I’m alive and doing fine ~ Five Man Electrical Band

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.

I am thankful for my smart, funny and charming husband. I am thankful for the years he selflessly held us together while never making me feel inadequate. I am thankful for his companionship, his commitment to our partnership, and his unending loyalty, support, and love.

I am thankful for my parents. For all the words of wisdom and encouragement when I need them most. For instilling in me the belief that there is nothing I can’t do. For loving me unconditionally. For letting me find my own way, but always being there for me when I need them.

I am thankful for my sis. For checking in on me nearly every day to see how I am doing – regardless of what is going on in her life. I am thankful that she loves me completely without expecting anything in return. I am thankful for our sister lunches and the quality time we spend together.

I am thankful for all my family – My Granny, Aunts, Uncles, Nieces, Nephews, Cousins, and for the family I married into. I scored with my in-laws! I understand how fortunate I am to have such a loving extended family, and I am very thankful for each and every one of them.

I am thankful for my friends – old & new. My friends who know me sometimes better than my family. My friends who love and support me regardless of what I am able to contribute to our friendship. My friends who understand when I need to cancel a lunch date or head home early from an evening out. I am thankful for my awesome friends!

I am thankful for my new job, and for my new boss for seeing in me the potential to shine in his company, and for giving me the tools to do so. I am going to be a rockstar!

I am thankful for my Casey girl. I miss her so much this Thanksgiving. The first one without her in 14 years. I will miss her big soulful brown eyes pleading with me to share some Thanksgiving dinner. I will miss the way she greets all of our guests with joyful abandon. I will miss the gentle way she had with my Granny. I will miss the sound of her snoring after a long day of socializing with family. I miss her a lot – and am so thankful for the years we had together.

I am thankful for our current crazy critters – all four of them – and their unique and joyful personalities. Life is not dull around here.

I am thankful for the warm cup of coffee I am currently sipping, the fuzzy slippers on my feet, the blue sky out my window, and the waves crashing on the beach just down the street.

I am thankful for the potential of today and the promise of tomorrow.

I am thankful for the swirl of words in my head, and for my cold but nimble fingers that eagerly guide them to this page.

I am thankful for this page, and the many other pages that make up my blog. I am thankful for FibroHaven, in all its components.

And I am thankful for you! Thank you for taking the time to read my blog. It is a greater honor to me than you will ever know. Thank you if you have ever left a comment. Thank you if we have connected on twitter or facebook. Thank you for allowing my voice into your life.

Finally, I am thankful for everything that has happened in my life to lead me exactly where I am today – full of potential and promise.

Happy Thanksgiving!

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.

All the things that make me a spirited chef, make me a horrible baker. I simply have no tolerance for carefully measured preciseness. I learned long ago that baking is not my forte, and I avoid it accordingly.

That being said, I recently discovered the easiest and most delicious Gluten Free Peanut Butter Cookie recipe that even this girl can master. Simple, simple, simple!

Ingredients

• 1 egg
• 1 cup sugar
• 1 cup peanut butter, any kind
• 1 teaspoon baking soda
• 1/2 teaspoon salt
• 1/4 cup chocolate chips (optional)

Directions

• Preheat oven to 350º. Prepare pans: line with aluminum foil or parchment paper, or oil generously.
• Put all ingredients into food processor and pulse until well blended. Or mix thoroughly by hand.
• Make dough into (about) 36 evenly sized balls. Arrange balls on prepared pans leaving an inch or so between them. Add chocolate chips, if using, lightly pressing one or two into the top of cookie.
• Bake until they flatten out a bit and start to brown – 12 to 15 minutes.
• Remove from oven and leave on sheet for several minutes, until they begin to firm up, then carefully remove to cooling rack

Yum, yum, yum!

But this adventure chef could not leave well enough alone!

Gluten free cookies are great, but I wanted sugar free as well (link between sugar consumption and chronic pain), so I substituted 3/4 cup Agave Nectar for 1 cup sugar (adding the chocolate chips adds sugar, so leave them off if you want sugar free cookies). To compensate for substituting a liquid for a dry ingredient, I added 1 tablespoon of Bob’s Red Mill Gluten Free Baking Flour.

The result was a moist, chewy, peanut buttery delight! I baked the cookies Friday evening to take to a Halloween party on Saturday. The cookies were a big hit! If I had not told them they were gluten and sugar free, I doubt anyone would have known.

Cookie Disclaimer

Just because something is gluten and sugar free does not mean that it is nutritionally good for you. But this is the time of year we all know we are going to indulge a little. So if we are not always going to make the best possible choices, we can at least minimize some of the indulgence. And with this recipe, you won’t even realize you are making a sacrifice.

Following up on the Progressive Relaxation guided technique of week one, in week two we learned a simple and useful technique called Mini-Practices.

Mini-Practices

For relaxation to benefit you the most, you need to learn how to relax and calm yourself upon your command. This skill can be very helpful when you are feeling increased tension or pain, but are unable to go to a secluded area to do progressive relaxation.

To Do a Mini-Practice:

1. Stop yourself in whatever you are doing
2. Take a deep breath
3. Say the word “relax” to yourself
4. Slowly exhale
5. As you exhale  focus on the sensations of relaxation
6. Allow your jaws to relax, allow sensations of heaviness to flow downward from your shoulders throughout your body
7. After 30 seconds go back to what you were doing – regardless of how well you have succeeded in relaxing

Reminders to do Mini-Practices

Your goal is to do about 5 mini-practices the first day and then gradually build up to about 20 mini-practices a day over the next few weeks. You can remind yourself to do a mini-practice in many different ways. Some people do a mini-practice every time they feel annoyed or tense. Other people do one every time they stop at a stop light or pick up the telephone. You can remind yourself to do a mini-practice by placing adhesive “dots” around the house (by the door, near your mirror) or on personal belongings (such as a watch, or pocketbook). Every time you see a “dot” you will be reminded to do a mini-practice.

It doesn’t matter how you choose to remind yourself to relax, what is important is that you practice frequently. Little by little you can develop a habit of keeping yourself relaxed throughout the day.

Learning to relax really is a skill. We live in a constant state of flight or fight. Learning to shut that down, even if it is only for 30 second increments is a powerful tool.

After practicing this technique for a week I can say it is something we should all learn and add to our coping skills toolbox. I have not counted to confirm that I am up to 20 mini-practices a day, but the cumulative affect of the number I am doing is very positive. I have a greater feeling of control over my emotions and enjoy the short sensations of relaxation. They are kind of addicting! I find myself doing one each time I wash my hands – and I am compulsive hand washer.

Try it for yourself. It is such a simple and useful technique there really is no reason not to try it. The researcher did mention that some people have an aversion to the word “relax” (feels too harsh), and if this is the case with you, it is perfectly acceptable to find your own word – chill, easy, breath, etc.

Be sure to get yourself a pack of the adhesive dots. They are a fun and useful way to remind yourself to relax.

This time of transition in my life has been trying to say the least. An emotional roller coaster would be a better way to describe it. One second I am excited by possibilities and the next second I am crushed with defeat. Sounds a lot like life doesn’t it?

It just so happens that a research study I was slated to participate in months ago started up last week. It is a local study on yoga and cognitive coping skills for the treatment of Fibromyalgia. I was hoping to end up in the cognitive group since I already have a good handle on the yoga, and  since the trials of this past month have left me in serious need of some coping skills. Fortunately that is exactly where I ended up.

Last week was our first session and we spent most of the two hours getting to know everyone in the group. Then we proceeded on to the first of the eight Pain Coping Skills we will be learning over the course of the study. Progressive Relaxation is a guided technique. While laying or seated in a comfortable position, we followed the directive of the study leader and proceeded with a focused tightening and relaxing of targeted muscles.

Starting from our heads and working our way down, we slowly and purposefully tightened and relaxed major muscle groups. It was a controlled and relaxing exercise. Before we began we rated several of our symptoms on a sliding scale – pain, fatigue, brain fog. At the end of the exercise we were asked to rate our symptoms again.

I think everyone agreed it was  relaxing and we all felt somewhat restored. But for me it did not elevate my pain. Some of my muscles that had been burning – like my upper back between my shoulder blades – did experience relief, but then other muscles where my pain was more sharp and focused seemed more painful after. It is hard to tell whether the pain actually increased from the movements or if I simply became more aware of it when the overriding burning pain subsided.

Our homework was to repeat the exercise twice a day listening to a DVD recorded by the lead researcher. My homework left me with the same experience. So I suppose I would say for me it is a good technique for burning pain, but not so good for sharp, stabbing pain.

This week we are learning a new technique, and so on throughout the eight weeks of the study. Their hope is that one, two or maybe even all eight of the skills they teach us will help us and be implemented into our daily routines. That is my hope too!

My second hope is that I will be able to continue on with the study after I have started working again. It is a possibility that it will conflict and I won’t be able to complete the eight weeks. That would be a disappointment, but I will worry about it when the time comes.

For now, I will continue on and report here what we are doing and whether or not it is helping me.

Do you have any experience with Cognitive Coping Skills/Behaviors? I would love for you to share your experience with it. Was it helpful to you? Do you continue to practice the skills you learned? Do you practice daily or do you target your practice depending on your symptoms?