The National Fibromyalgia Association is the leading non-profit organization dedicated to improving quality of life for people with Fibromyalgia. Their website has been a great resource for me as an FM patient, advocate, and support group leader. The NFA is focused on creating programs dedicated to spreading Fibromyalgia Awareness, like the Fibro Focus events that took place last year, which my support group was fortunate to participate in.

The NFA truly is the leading authority on Fibromyalgia, so when they asked me to help spread the word about the free online version of Fibromyalgia AWARE magazine, I was more than happy to help.

Fibromyalgia AWARE Magazine

Published by the National Fibromyalgia Association, Fibromyalgia AWARE is the first and only consumer magazine dedicated to the subject of fibromyalgia.

The comprehensive publication offers straightforward, insightful information and support. This reliable resource will help to improve the quality of life for people affected by fibromyalgia. The magazine includes:

• The latest news in research
• Helpful information on general health and well-being
• A balanced approach to treatment options
• Lifestyle and self-management techniques

As a non-profit organization, the NFA relies on purchases of the print version of the magazine to help them continue their mission. But now they are offering a free online version to reach and help as many people as possible.

Now we all have free access to the great stories and editorial produced in each quarterly issue. For example, here is a small sample of what you can find in the Winter 2009/10 issue of Fibromyalgia AWARE:

• Making the Invisible Visible: The Science Behind Fibromyalgia
• How to LIve a Balanced Life: Lessons from Practice of Tai Chi
• Your Best Night’s Sleep: Tips to Get the Rest You Need
• Making the Right Online Connections

There is even a special section dedicated to Disability – determining if it is right for you, dealing with the myths and landmines.

So there you have it. Quality information from a quality organization. Bravo to the NFA for creating this free online version and making this valuable information more accessible. I am happy to support their efforts and get the word out to all of you.

If you haven’t already, click on the link above to the Winter issue and get your free copy. Happy reading!

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

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.

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?

Dear Friends,

I am pleased to announce that the Fibromyalgia Wellness Project is now up and running and ready to receive participants. This is a research project sponsored by the National Institute of Arthritis, Musculoskeletal and Skin diseases, National Institutes of Health. Its purpose is to evaluate a new web-based self-management program that aims to help people with FM discover ways to reduce symptoms and improve health through a completely personalized self-monitoring approach that takes no more than 5 to 10 minutes per day.

In using this program you will create your own personal database of symptom patterns and self-management strategies that will be analyzed by the project’s proprietary analytical methods. After sufficient use (depending on how frequently you use it–we recommend at least four times per week), the program will provide you with personalized feedback about strategies that lead to reduced symptoms for you. The feedback you receive will be derived from your own personal inputs over time, which is why your on-going participation over several weeks is needed. This allows you to experiment with different strategies and lifestyle changes (e.g., bed times, meal times, self-help practices, exercise, stresses, herbs, supplements, medications, and more) to find out what works best for you.

Please go to http://www.fmwellness.org/index.htm to learn about the project and sign up.

We will be continuing to upgrade and refine the site in the coming months. I hope you find the project beneficial, and welcome your participation.

Best regards,
William Collinge, PhD, MPH
Principal Investigator
The Fibromyalgia Wellness Project
http:www.fmwellness.org

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

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

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

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

Healing is not a simple process.

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

So where do we start?

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

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

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

What does that mean?

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

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

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

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

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

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

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

I 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.