Healing from chronic illness is so much more complicated than just treating the symptoms. Prescription meds may help us cope, but they do not correct the original imbalances that led to dis-ease. And with difficult-to-understand illnesses like fibromyalgia and chronic fatigue syndrome, it is not always possible to pinpoint just one specific cause. Often it is a series of causes like a traumatic event experienced while in the midsts of some other type of recurring life stressors. There are many different types of traumas that can lead to chronic illness – physical, emotional, viral, environmental. With so many possible factors, it is easy to see why treatment is so difficult.

Knowing your trigger.

When putting together my blueprint, it was easy for me to pinpoint the exact moment when my trigger was switched – the day I broke the porcelain toilet with my head. Yes, I would definitely say that qualifies as a trigger. And the immediate downward spiral of my health from that day on is a clear indicator that the physical trauma opened the door to chronic illness. So I can with confidence say that my trigger was physical. That is the easy part. But what I must also consider is how my lifestyle leading up to the trauma left me predisposed to developing chronic illness.

Not everyone who suffers a debilitation head trauma ends up with fibromyalgia.

The concussion and brain trauma that resulted were expected outcomes to the physical trauma, but the pain and fatigue that increased daily were not. So why did I end up with fibromyalgia after the head trauma? Was I genetically predisposed to it? Did my lifestyle leading up to the accident leave me vulnerable to chronic illness? In both cases I believe the answer to be yes. But I am not a medical professional, and I cannot change or debate my genetics, so I am only going to focus on my lifestyle leading up to the event.

Busier is not always better.

I had what I thought at the time to be a very healthy and active lifestyle. I had a great job, a fun and active social life, I exercised regularly, ate well, was in a healthy relationship  - sounds pretty perfect, right? Well upon reflection it was not so perfect after all. In reality I was wound so tight that I was just waiting to snap. I never said no to anything. I was always on the go, never really taking the time to relax and enjoy my life. I was simply pushing through one experience to get to the next, like a small child who won’t drift off to sleep for fear of missing out on something. I had to be engaged and involved in everything because it was how I defined myself – “I am Dannette, the girl with the most active and full life ever!” With or without the head trauma, my lifestyle was eventually going to catch up with me. A crash was inevitable.

So while I can easily state that my trigger was physical, the depleted state of my being leading up to the physical trauma likely left me vulnerable to the prolonged crash of chronic illness.

Why is it so important to understand all of this? Again, I am not a medical professional, so this is all theory on my part based on living many years with chronic illness, and my current experience with improved health. The reason I think it is so important to understand the trigger is because I believe it will best inform how we should approach our own unique blueprints for healing.

My trauma was physical and so is my treatment.

Unless this is your first time reading my blog, you know that I directly attribute the healing I am experiencing to my regular practice of yoga. I was very athletic leading up to my accident, and tried many times over the course of the first 13 years of my illness to return to my former athletic ways, only to fail and end up in miserable pain. When I discovered the healing powers of gentle and restorative yoga, my body responded immediately. I found movement without pain! And because of the neurological nature of FM, yoga is an excellent mindful movement to practice as it regulates and balances the central nervous system.

I did not have any viral issues to address, like so many people with FM and CFS do, so in a way I am fortunate. My blueprint is pretty direct. I have seen tremendous improvements by incorporating gentle movement back into my life, and by addressing several other contributing issues like food allergies (eliminating gluten), and toxicity (heavy metals).

Of course this is a simplified explanation of the many years of trial and error it took me to piece my blueprint together, but I believe if each of us take the steps to really address and acknowledge our triggers, we can begin to piece together a blueprint for healing. Take a long and truthful glance back on your life before the trigger. Were there other factors of your lifestyle that may have left you vulnerable? A difficult marriage or childhood? This would require adding an emotional healing component to your blueprint. Do you see where I am going with this?

I am no longer the girl who thinks I need to say yes to everyone and everything. In fact I try very hard to participate in only things that nourish me, and eliminate people and activities from my life that do not. Healing requires effort, and sometimes we have to make hard choices. It also requires us to be able to honestly reflect on how we, unknowingly or not, contribute to our own illness. It is only with awareness that we can make progress. So if you are ready to begin you blueprint, start here: What’s your trigger?

From davidji, Dean of The Chopra Center University:

“Rituals are powerful behaviors. And when you combine ritual with meaning, amazing things happen – you get transformation. And transformation is a form of evolution. So by adding meditation into your daily set of rituals, it will effortlessly become a part of you.”

Each morning we wake up to a new guided meditation in our email inbox, and it has taken just six short days for me to appreciate, and even crave the meditations led by davidji. I think I am well on my way to creating a new morning ritual!

Todays meditation began with a body scan. This is an important and very powerful exercise we can all do daily. It does not need to be part of a meditation practice. On its own it is a great way to become present and in tuned with individual sensations in our bodies – good and bad. Often it happens that we acknowledge the pain and lose sight of the rest. A body scan will allow you to become aware of the parts of you that are quiet and comfortable, even in the most severe flares. If you begin your day with an active awareness and celebration of the good, it may just help to manage the other.

So while seated comfortably with my head phones in, I followed the gentle, almost seductive voice of davidji as he lead us in a celebration and exploration of our bodies. First, I celebrated my toes:

“How are my toes doing? How are my toes? Let’s celebrate my toes.”

I did not get past my toes and I was already smiling and joyful with this exercise. My toes felt good! Happy little toes! Happy to stretch and wiggle and slide across the cool, smooth surface of the wood floors. Who knew toes could bring such joy? (Besides my little Koko. She loves toes!)

As we proceeded to scan and bring awareness to our bodies from the toes up, I discovered more and more things to celebrate. I celebrated my feet for the stability they bring me – moving on to my shins and calves, on up to my knees – celebrating my knees for all their flexing and bearing, and for how hard they work. And on and on upwards. It was a magnificent celebration of my body – the same body that for so long has been the source of so much pain – physical, mental, emotional. Not today. Today it was a celebration.

Can you imagine scanning your body right now and finding things to celebrate? I hope you can. And if you cannot, please, try the day six meditation for yourself. It takes about 15 minutes from start to finish. It may be best to try it in the morning, but anytime you can find to sit down and meditate is a good time.

So today was a success, as have been the previous five day’s meditations. I am so pleased I signed up to participate in this challenge, and grateful to have you to share it with. And I would really like to know – what did you celebrate today?

Researchers used functional magnetic resonance imaging (fMRI) on 36 female subjects – 18 fibromyalgia patients and 18 healthy subjects – to obtain their newly published results:

Our results clearly show that individuals with FM have greater connectivity between multiple brain networks and the insular cortex, which is a brain region previously linked with evoked pain processing and hyperexcitability in FM,” said Dr. Napadow. The research team found that patients with FM had greater intrinsic connectivity within the right EAN, and between the DMN and the insular cortex — a brain region linked to evoked pain processing. “In patients with FM, our findings strongly implicate the insular cortex as being a key node in the elevated intrinsic connectivity,” added Dr. Napadow. “Patients demonstrated greater DMN connectivity to the left anterior, middle, and posterior insula.” In the right EAN, FM patients demonstrated greater intra-network connectivity within the right intraparietal sulcus (iPS). Researchers found no differences between the FM and healthy control groups for the left EAN or the MVN.

Essentially what that means to us is that there is a new study demonstrating a diagnostic difference in the brains of people with fibromyalgia and how we process pain.

This study will need to be duplicated and reduplicated before we see any big changes in the diagnosis and treatment of fibromyalgia, but it is good progress. Not only does it add validity to fibromyalgia, but it could lead to a decisive diagnostic test for the diagnosis of fibromyalgia. This has been one of the greatest barriers we have faced in the acceptance and treatment of fibromyalgia.

Story Source:

Wiley-Blackwell. “Resting Brain Activity Associated With Spontaneous Fibromyalgia Pain.” ScienceDaily 30 July 2010. 1 August 2010

What do you do when you are having a relatively good day, but suddenly hit a wall? Do you push through, or do you slow down and give in to it? There is a BIG brick wall looming just ahead of me. Can’t decide if I want to try and hurdle it or lay down before I smash my face into it! Let’s discuss. I would love to know how you manage.

There were many great responses that are worth taking the time to read. After reading them I knew I wanted to continue the conversation with a new blog post, and as often happens in life, I was further inspired to do so by my yoga practice today.

I was in a new class with a new instructor. This is always a thrilling and completely terrifying experience for me. Will I be able to keep up? What is their teaching style – gentle and nurturing or kick-butt boot camp style?

The teacher has a dramatic effect on your yoga experience and sets the tone for the entire practice. My favorites are the gentle leaders who guide with simple, clear directives and encourage everyone to honor where they are on that particular day. A good yoga instructor understands that our bodies can be different from day to day – even from morning to afternoon, and afternoon to evening. This is just one of the reasons why yoga – with the right instructor – is an excellent mindful movement for fibromyalgia. But I digress…

Just a few moments into my practice, I knew I had chosen the right class. He was gentle and clear, explaining how to elongate the spine while bending gently to the side. With my eyes closed, I focused on his voice and his directions, and found new joy in a pose I have done many times. It was a great “ah-ha” moment and my body responded with pleasure.

And then he said something that I felt like a wave rushing through my entire body:

Find the space between pleasure and pain, and rest there.

I was instantly overwhelmed with the intention and deep meaning that statement held for me. Much deeper than the obvious benefit it was to my practice on my mat that day – it is something we can all apply directly to living well with chronic illness everyday. Read it again. Read it several times. Read it out loud.

Find the space between pleasure and pain, and rest there.

How does it make you feel? For me, I felt empowered – empowered to know that space exists and empowered to know I was learning how to find it.

The space between pleasure and pain. This concept is difficult for the fibromyalgia sufferer. It is a space many do not know how to reach. And even if we do reach it, we may not be able to appreciate it, as we have become conditioned to brace ourselves for the next surge of pain. Admit it, some of you think finding this space is as likely as finding a unicorn there when you reach it. Right?

But this space is real. It does exist. We just need to learn to quiet ourselves long enough to find it, and then trust it enough to relax into it.  It is like finding the silence between our thoughts with meditation – the silence is there, we just have to learn to find it. It takes effort. It takes practice. It requires mindfulness. But it is real.

Rest. A simple word that is a difficult concept for those of us living with chronic illness. Often we are forced to rest, and it is anything but restful. Then, sometimes we chose to rest, but we are distracted by all the other “more productive” things we can be doing with our time. We fail to see how productive resting truly is.

Like all mindful approaches to living, embracing and living in the restful moments is a process. It takes work. How ridiculous does that sound? It takes work to learn how to rest. I wrote it. I believe it. And it still makes me chuckle reading it.

In general, our culture does not embrace rest. We have been conditioned to make the most of every moment. Multitask. Leave no stone unturned. But what bad could possibly happen by leaving a few stones be while you embrace the joy and restoration of rest? Really? Why can’t we learn to love the silence and enjoy the rest?

We can, but it is going to take work – and practice. We have a lot of conditioning to undo. And it is not going to undo itself. Through yoga and meditation – I am starting to come undone. I am unraveling and letting go of the tension I held so rigidly to for years. My space between the pleasure and the pain is growing and I am learning to rest there. I am learning to embrace my chosen moments of rest, rather than wait for the brick wall to force me into it.

You have that space too. We all do. Even on the days when you are certain it does not exist, it does. If you believe it, you can begin to find your way to it – and rest.

Last May I challenged myself to a 30 day writing project. My thought being, it takes roughly 30 days to develop a habit, so for each day in May I wrote a blog post. It was a success on some levels, but I failed at making writing a daily habit.

Writing is a form of meditation for me. I write more than what you see here on my blog. I do not always enjoy the process of writing, but I enjoy it most when I am singularly focused on it and my only purpose is on finishing my current sentence and thought. I love those moments when I am completely absorbed in the act of writing.

“Learning to be mindful and present, clear and attentive is the doorway to a life of depth and joy.”

Mindfulness is something I seek to achieve in all aspects of my life – writing, relationships, work, eating, exercise. I want to be happy and present in what I am doing in the moment, not regretful of my past, or anxious of my future. I want to learn to be present in the now, and find a greater joy in the present. I believe meditation is a path to the joy I seek.

I have dabbled with meditation – taking a group class here, listening to a guiding voice there. Each experience with meditation has been restorative and encouraging, but my knowledge and understanding of it is relatively minimal. So this May I am challenging myself to another 30 day project.

For the next 30 days I am going to explore different types of meditation, and practice meditating for at least 20 minutes each day. My goal over the next 30 days is to learn more about the many styles of meditation, and to find the one (0r ones) most compatible with my needs. I also hope in the process to establish a habit, and continue beyond May to dedicate the time each day to meditate.

“There is no end to the meditative process: it is a lifelong practice that can be undertaken by anyone, regardless of age and spiritual beliefs, and there is no right or wrong time to start on your meditative path.”

I am beginning my meditation journey with a book that is intended to help readers begin a meditative path, Beginner’s Guide to Buddhist Meditation,  by Christina Feldman.

Beginner’s Guide to Buddhist Meditation is a beautiful book, filled with soothing images and helpful charts. Organized in a way to guide the beginner from the basics – how to meditate, when to meditate, where to meditate – through the styles and obstacles of meditation, Feldman’s book opens a simple and straightforward door to meditation. There are no rights and wrongs in Feldman’s meditation teaching, only loving kindness and heartfelt communication.

“Meditative teaching is not an exhortation or demand but an invitation to explore the ways of walking new paths of mindfulness and wakefulness. It is an invitation to discover a deeper well-being and inner richness that can transform every aspect of our lives.”

One of my goals for my journey into meditation is, according to Feldman, one of the central teachings of meditation: to be at ease with the events of my mind and body.

We all know that even in the mildest flare, we can become consumed and overwhelmed by the pain we are experiencing – and even by the pain we are not currently experiencing, but are remembering and anticipating. Pain is a powerful motivator for fear and anxiety. I believe it is possible to overcome fear and anxiety, and I believe meditation can help by teaching me compassion, peace, and understanding.

“Understanding: Central to the Buddhist path is the understanding that we cannot avoid aging, sickness, or death. We cannot avoid all loss, sorrow, and heartache, and the endeavor to do so only magnifies pain. We do begin to see that confusion, agitation, fear, and stress may become optional in our lives.”

Fear and stress are an option? If this is so, I doubt we can just accept that it is. At least for me I know it will take practice to learn to let go of my ingrained responses and accept joy. I want to learn to find the joy that exists with the pain. I believe it is there. I just need to learn how to find it.

“Meditation is not about avoiding or softening the blow of moments of conflict and difficulty that we are bound to encounter during our lives. Rather it is a means to approach these moments with clarity, understanding, and calm.”

Beginner’s Guide to Buddhist Meditation is so rich in thought, context, and instruction, I am certain it will serve my desire to develop a regular meditation practice to reread it several times. It is simple and approachable, but Christina Feldman has packed so much guidance and wisdom into its short 96 pages, each time I open it a new passage jumps out at me. Just look back over all of the above quotes and you can see the richness of concepts and wisdom Feldman shares. It is a great tool to begin my journey into meditation.

Are you interested in learning how to meditate, or in deepening your current meditation practice? Then let me recommend Beginner’s Guide to Buddhist Meditation to you. And fortunately I can do more than recommend it. Feldman’s publisher Rodmell Press has again generously donated a book to give away to one commenter. Just leave a comment, and on May 14 I will randomly select a winner to receive this beautiful introduction to meditation.

Join me on my quest for more mindful living. Through meditation we can learn to find acceptance of our illness and joy in the meaningful act of living.

“In your meditation, as in your life, you will have to choose over and over whether to follow the paths of impatience, judgment, frustration, and complexity, or the pathways of patience, acceptance, balance, and simplicity. Increasingly, you will come to understand that the choice lies in your own heart.”

Rare is the Fibromyalgia patient who embraces exercise.

Not only does it elicit a pain response in most of us, but it also sends our defenses up. Too, too many times we have heard the unsolicited advice, “If you would only exercise you would feel much better.” We could all give examples of some of the insensitive and inaccurate things we have heard, that is not at question here, but what is under consideration is what truth is there in those comments?

It is hard to consider the validity to a comment that has raised our defenses and left us feeling misunderstood. But what if, regardless of how misinformed the comment and commenter, there is an underlying validity to it? Should we continue to be defensive and ignore what instinctively we already know? Who are we hurting if we do this? Not them, that is for sure.

Be Mindful

The fact is, not all exercise is good or even possible for most Fibromyalgia patients, but some form of mindful movement is essential if we ever want to improve our symptoms and our overall wellbeing. And yet it seems so counterintuitive: “It hurts to move, so you are telling me I need to move?” How does that make sense?

A lot of research has been done on this topic. Article after article has been written touting the benefits of exercise for Fibromyalgia. Here is a summary of the benefits of exercise for those with Fibromyalgia from WebMD:

helps restore the body’s neurochemical balance and triggers a positive emotional state

boosts levels of natural endorphins — pain-fighting molecules

triggers the release of epinephrine and norepinephrine, hormones that are known to boost alertness

burns calories and makes weight control easier

gives range-of-motion to painful muscles and joints

improves a person’s outlook on life

improves quality of sleep

improves one’s sense of well-being

increases aerobic capacity

increases cardiovascular health

increases energy

places the responsibility of healing in the hands of the patient

reduces anxiety levels and depression

relieves stress associated with a chronic disease

stimulates growth hormone secretion

stimulates the secretion of endorphins or “happy hormones”

strengthens bones

strengthens muscles

Would your life and your symptoms benefit with even one of the listed improvements? Then let’s step back from our conditioned response to exercise and think about how we can approach mindful movement with more positive results.

Be Gentle

This really is a matter of reconditioning our response to, and expectation of movement. Societies idea of exercising for health is to push through the pain; No Pain No Gain. Absurd really, and an approach that will guarantee failure for those of us living daily in pain. Take that approach and turn it inside out and then upside down. Gentle, mindful movement is the key to exercising with Fibromyalgia.

If you are familiar with my blog at all you know I am a huge proponent of yoga. Well I learned the hard way recently that I need to revise my ardor of yoga.

I Love Yoga, But Not All Yoga Loves Me

My first experience with yoga years ago was a No Pain No Gain experience. Even though I made an attempt to explain Fibromyalgia and my limitations to the instructor, she still pushed me way beyond my means. It was an awful experience and I was done with yoga. Fortunately, Fibromyalgia has taught me to consider and reconsider everything, because, when given the opportunity to practice yoga again, I did and had a completely different experience. It was one of the greatest epiphany moments I have had. Movement without pain. Hallelujah!

But then recently I had a setback to my love affair with yoga. For financial reasons I was no longer able to attend the gentle yoga classes that were having such a positive impact on my health and my symptoms. I was forced to look for alternatives; I tried YouTube videos with no success; found a few sources on Facebook that were okay, but not great; rented a few DVD’s, not even close. Then I resorted to buying a Yoga for Beginners DVD. I mistakenly interpreted “for beginners” as meaning “gentle.” Boy was I wrong. Massive failure and major flare-up.

But We Are Resilient – Remember

So I looked again specifically for “gentle” yoga, and I found a free class being offered at a local library. My love was back. I spent the next restorative hour in mindful movement so gentle I sometimes wonder if it is really benefitting me, but it is. The result was no flare, days of improved cognitive function, better sleep, and decreased pain – all from one class!

Not All Movement is Created Equal

So you tried yoga and it hurt and sent you into a flare and now you are done with exercising. Exercising is not for you. I could not possibly understand how severely exercise hurts you because if I did I would not be telling you to do it.

I understand all of the reasoning behind not exercising, because I used them all myself for many years. And if I had tried yoga again and it had been anything other than gentle and restorative, I would still be reasoning myself out of attempting any form of movement. It is understandable. We have become conditioned by our pain. But the really great thing is that we can also become reconditioned.

First you must trust that your muscles need movement. The longer they remain inactive, the more severely they will continue to hurt, the less energy you will have, and the harder it will be for them to support your frame. Your muscles want and need to move.

Next you have to find the appropriate movement for you. It may not be yoga. Maybe it is Tai Chi or Qigong. Maybe it is some form of water movement. Maybe it is a slow and gentle walk. Find what works best for you. Find what you love and what makes your body say Hallelujah.

Finally you need to accept that you will feel sore and there may be some discomfort, but you should not become discouraged by it. Consider how long you have been inactive. Honor you body and your limitations, but do not use them as the reason for not trying.

As with all things Fibromyalgia, there is no easy answer or quick fix, but if you intend to get better, then mindful movement is a necessary step towards wellness. Do not give up if your first attempt is a failure. Regroup and recommit yourself to mindful movement. When you find what works for you the rewards will be many, including an increased range of pain free movement. And as I like to say – be sure to take baby steps to avoid the making the painful leaps.

From The American Pain Foundation:

September provides a unique opportunity to highlight the work organizations and individuals do all year to improve pain treatment, raise awareness, dispel tragic myths and spark much needed change in order for people to get the pain care they deserve.

The first ever National Day of Action for Pain Awareness will be held on Saturday, September 26th, 2009.   On this day, we hope you and your community will join together, share your stories, take pictures, and show the country that together we can make a difference.

This charge is being led by APF’s Power Over Pain Action Network (POPAN). Please visit www.popactionnetwork.org to learn more about the network, the leaders in your state, and visit the Events page to get involved in or post activities happening near you!

Get involved. Sign the petition. Become an advocate for the elimination of the undertreatment of pain. Click on the events page and browse the 40 events scheduled across the country or check out their Action Toolkit and schedule your own event.

If getting involved with the American Pain Foundation is not right for you, how about participating in the Virtual Conference over at Invisible Illness Week? National Invisible Chronic Illness Awareness Week is September 14 – September 18.

From Lisa Copen, founder of Rest Ministries and creator behind National Invisible Chronic Illness Awareness Week:

Regardless of where one’s spiritual ties are, there is an fundamental human desire to feel understood, to feel like those you love have some idea about what you are going through. One of the most difficult adjustments to illness is that you feel life is passing you by and no one around you even realizes it. We hope through our conference we can provide a place where people find the true source of being validated in their pain, how to live joyfully despite their illness, and of course, we want to increase awareness about how many suffer silently. Like our theme says, ‘A Little Help Gives a Lot of Hope.’ It really does.

In her continuing effort to make a difference Lisa has scheduled four speakers per day giving special presentations and taking calls from you on the phone for an interactive, encouraging, and educational forum that will leave you feeling refreshed and hopeful that chronic illness doesn’t have to define who you are!

But wait, there’s more…

My 30 Things About Me post was another way I am participating in all of the activities Lisa organized and promoted for Invisible Illness Awareness week. And on Monday September 14, my blog post will also be dedicated to increasing awareness of invisible illness. Do you have a blog? Would you like to participate? Sign up at Bloggers Unite and commit yourself to the cause.

Isn’t it encouraging to learn about these efforts to improve our chronic pain and our shine a light on our invisible illness? Even if you are not capable of getting personally involved, take comfort in knowing there is a movement toward progress and change.

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.

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

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

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

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

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

Happy Birthday to me!

Finley

Monty

Moby

But then Koko happened. My sister’s friend Judi volunteers for an awesome animal rescue and placement service Barks of Love. Most of their animals are rescued from shelters before they are euthanized or rescued from people no longer able to care for them. It is a great organization staffed by caring and committed volunteers. Judi and Barks of Love will do whatever it takes to rescue an animal and place it into a good home. Fortunately for me, she thinks we have one, because when she posted a picture of a foster pup needing a good home, I was done. In my heart she was already mine.

Koko

My health was definitely a consideration for all of us when deciding if Koko was a good fit for us. It would not be reasonable or fair for me to adopt a high energy dog that needs excessive exercise. My husband is already the designated dog-walker, so adding one more leash was not an issue for him, but if she needed more walking than he has time for it would be a problem. Dogs are great to help encourage us to walk and be active, but as we all know there are days when it is just not possible. I know I am fortunate to have a husband to compensate for my unpredictable health. And it turns out that Koko is the perfect fit for us after all.

She is smart beyond belief! Mostly house trained when we got her thanks to the great fosters with Barks of Love. Her name was Justice, but we changed it to Koko and she answered to it by the end of her first day here. She is playful but not crazy. In fact she gets most of her energy out on her walks with Rob and in playing with Finley. They have become great friends. I was fortunate with Casey and Finley. They had the knack of matching their energy to mine. If I needed to sleep in, they let me. If I needed quite time and space, they respected it, and somehow, Koko is already doing the same. She really is amazing!

Give her a toy to play with or a bone to chew on and she is in heaven. She puts herself into her crate when she is ready for a nap. She seldom whines, she respects authority, and has already learned several tricks. Did I mention she is amazing?

Rob and I were not blessed to have children of our own. Koko, Finley, Monty and Moby are as close as we will get to raising a family. Casey filled my heart with love for 15 years, and when she was gone I had no place to direct it. Lucky little Koko is the new beneficiary of all that love. She is not replacing Casey. She is honoring Casey. I had a dream the night before we were to meet Koko. I was standing at my front door and Koko was on the other side. As I reached to open the door I looked down and Casey was standing there wagging her tail, excited to meet the newest member of our family. It was all the reassurance I needed that Casey is fine, and that Koko belongs with us.

Casey

Welcome to the family little Koko!