Monday, July 28, 2014

The Bravest of Hearts


Your light shines bright every moment of everyday
I see that you don't always feel it
Know that those around you are touched, inspired and warmed by it

Go into the quiet, see the light that others see
Allow yourself to be touched, inspired and warmed by that light
Follow the bliss that permeates your cloak of humanness

See beyond the earthly circumstances to the unlimited potential you possess

The weight of the times drags you down
You continue to take steps; big and small
With a faith that carries all

Your shoulders show the heaviness that you carry
Your eyes show the sparkling of love
Your feet show the persistence of never ending hope

From stand still to trudge
Trudge to stomp
Stomp to march
March to skip
Skip to dance

Always making your way to Dance!

Thank you for being The Bravest of Hearts

Wednesday, May 21, 2014

What is Your Chronic Mindset?

What do many of us with chronic illness think about most of the time?  We think about whatever is chronic and getting in the way of living our lives to the fullest.  For me, it's my pain and fuzzy brain.  For some it may be cancer or mental illness.  When we think about the chronic illness part of our lives, it is very difficult to think past just that…illness.

No matter what illness we talk about, just the word 'chronic' insinuates something is wrong, there is a lack of something and we have limitations.  I want to help you change your mindset from the chronic thoughts of chronic illness to the chronic thoughts of chronic wellness.  Yes!  This is possible when living with chronic something.

Let's take the word, chronic and examine it for just a second. offers four similar definitions of this adjective.  The one most of us think of when using the word is, "having long had a disease, habit, weakness or the like."  I'm assuming that the habit that is mentioned must be a bad habit, although that is not clear.  And thank goodness it's not clear, because it leaves the window open for a new thought.  This new way of thinking about something being chronic could be my chronic meditation every morning.  Two of the other definitions that are given are completely in line with this alternate way of thinking about what chronic is.  The first says, "constant; habitual; inveterate." and the second is written, "continuing a long time or recurring frequently."  I have meditated for many years and it occurs frequently.  Best of all, meditation is good for me, I enjoy doing it and it doesn't hurt.

What is your chronic mindset?  No, really.  I want you to acknowledge it.  Good.  Does that line of thinking empower you or shrink you?  Does that thinking allow you to fully express yourself joyfully?  If your answers were, 'no' then it is time to find a new mindset.  Find something, one thing that you do that lifts your spirits.  Do you read uplifting or humorous books, write, help out in any large or small way?  We each have gifts and talents that are meant to be shared and if yours are shadowed by pain or illness, we all lose out.  Know that chronic illness is challenging and good things can come from it.  Start by allowing your body to experience what it is experiencing.  While you allow this, create some joy and watch it grow.

Changing our mindset and focusing on positive, uplifting assets we possess opens doors for a more joyful life.

Thank you for reading, forwarding and following,

Tuesday, April 15, 2014

Spring into Action…Gently

Ahh….Springtime.  The time when the early morning sun wakes us from our slumber, beautiful birds singing outside our window, nature begins waking with it's colors and life and we all emerge from the hibernation of Winter.  According to the commercials on TV and the ads in magazines, we should be skipping down the street in a flowy yellow dress with some theme song in the background. "It's a new Day, la, la, la."

Well, not all of us enjoy the sun peering through the window in the morning.  Especially if we just fell asleep after hours of staring at the ceiling.  The birds need a mute button because during a fibro flare, everything sounds like it's channeled through a megaphone.  Don't get me wrong, I love seeing the tulips emerging from the dirt and the grass regaining it's green color once again.  Although, when I see this, I wonder where the spring is in my step.  The song in my head goes something like, "Just get through the day with the least amount of pain, bahm, bahm, bahm…"

Of course there's no medical data showing that as the seasons change, flares become more frequent, but just ask someone with fibromyalgia. It's like saying that there's no proof that bad weather triggers arthritis pain.  Just because it's not proven in a lab, doesn't mean it doesn't exist.

These days, I'm all about recognizing that weather patterns can change my circumstances then adjusting accordingly.  My pain actually gets worse if I begin to get angry or stressed about the changed experience.  So, I do my best to forgive my body for the pain and do more to nurture my achy back or pained hips.  I think everyone should have a basket full of magic.  Fill it with a favorite bath salt, a good book, soothing music, a comforting blanket, peppermint foot lotion or a great neck pillow.

Today I woke up aching all over and walking into walls.  Really…my daughter even asked why I walked into the wall.  I misjudged the area I had to walk through the doorway.  I haven't felt a flare like this in a while, so I looked out the window and there it was.  It was grey and cloudy.  The clouds looked like they were going to burst with the pressure of the water inside.  That pressure, I feel in my head.  What I did was putter a bit to get some food, tea and my pills and I bumper carred my way back to bed.  I had a bunch on my to-do list but I knew that it would be more frustrating and painful to push myself through the list.  I sighed, embraced and accepted that my to-do's will be to-done another time.

It's so important to know our bodies and to accept each moments.  On the days we feel better or even good, we can get two days worth of to-do lists done.  Then celebrate!

Thank you for reading, forwarding and following!!!

Monday, March 24, 2014

WAIT…Is This What Normal Feels Like?

Today has been a day like no other day in the last few years.

I woke up refreshed, which took me off guard.  I'm so use to waking up to the gentle alarm and slowly increasing simulated sunlight and feeling as though I was running a marathon in the dream state.  Today, I opened my eyes and immediately noticed that it was five minutes before my alarm.  My eye lids were not sticking to my eyeballs.  They were unusually moist.  I turned the alarm off before it went off to avoid waking my husband.  The process of getting my legs off the bed and sitting up is typically at a snail's pace.  I started the process taking it slower than molasses, but felt some energy and strength in my legs.  I swung my legs to the floor, sat up and stood…all within seconds.  Any other day, if I had tried that, it would have either been excruciatingly painful or I'd be on the floor.  Not today!  Up and at-um.  I think my hair may have even been floating in the wind with the swift movement.

I reached the floor at the bottom of the steps and paused.  I looked back up the staircase and realized that I alternated legs and didn't hold the handrail all the way down.  I was tempted to try it again, but I didn't want to push my luck.

On most days, I throw a long winter coat over my PJ's to drive the kids to school, but not today.  Today, I got dressed!  I can hardly believe it.  A nice fleece top, jeans and sneakers.  Not that anyone would notice the difference with the long coat, but I could.  Once the kids have been dropped off, I head back home and slowly crawl back into bed with a heating pad.  I'll get up for lunch, dinner and the bathroom but my body aches so deeply when I move that it's hard to get anything done.

I got home from the school run and cleaned the living room, put the laundry away, planned dinner and set up a list of things I could do for the rest of the day.  At noon I left for a day of errands, driving in the sun and visiting the great coast of Maine (about 40 minutes from my home).  I returned home at dinner time with much accomplished.  There was some pain in my neck and torso, but nothing strong enough to knock me down.  Since I've been home, I've done about two hours of paperwork and a Skyped tarot card reading.  Oh, and I'm writing my blog.

This day looks a lot like what I observe from most of society.  Putting daytime clothes on and physically moving and being productive for most of the sunlit hours.  Who knew I'd see this kind of a day again?!  What an incredible blessing!

Now I'm shooting for two 'Normal' days in a row.  Whoo Hoo!  Three cheers for good days!!!

Thank you for reading, forwarding and following!!!

Thursday, March 13, 2014

How Do We Keep Hope Alive?

I was diagnosed with Fibromyalgia in 2002.  My triplets were two years old and the pain in my shoulders prevented me from holding my babies as much as they/ I wanted.  Although I've observed my Mom fighting and struggling with Fibro for many years before my diagnosis, I decided that I'd never give up on the possibility of overcoming this illness.  I had goals, dreams and babies to raise and support.

I discovered that yoga was a great way for me to manage the pain of Fibro and exercise helped with the Fog.  My determination lead me to becoming a certified yoga instructor and eventually opening my own studio.  After a few years of teaching, the yoga began to trigger flares of full body pain.  I pushed through; trying different methods of rest, epsom salt baths, heating pads, massage, etc… The pain only got worse.  Eventually, the exhaustion took over and I could no longer handle even the slightest amount of stress.  A good day would dangle glimmers of hope and a good month would convince me that my efforts were paying off and I was overcoming this illusive illness…until waking up and feeling as though a truck ran over me.

Each time this cycle of hope and disappointment would make it's rounds, I'd think about ways to stop the emotional roller coaster.  An easy way would be to shut down the feelings of hope, in order to avoid the disappointment on the other end.  This just doesn't feel as though it would enhance my quality of life.  It sounds more like giving up and that's not a concept that works well for me.

Maybe, just maybe, I'm hoping for the wrong things.  My mind has been set on overcoming Fibromyalgia so that I can get back to my life.  That life was many years ago.  There is a chance that my old life just doesn't fit for me anymore.  Come to think of it, the high stress and loads of responsibility that comes with owning and managing my own business don't seem to fit for me anymore.

I refuse to believe that I no longer have a place for hopes and dreams in my life!  I just need to allow them to be realistic to my abilities.  I can cook a wonderful dinner for my husband and kids, when I'm feeling up to it.  I can enjoy an amazing book as long as I let go of the expectation that I'll remember the last chapter I read.  I can be funny, joyful and caring.  I can trust my true friends will support and love me for who I am, not what I can or can't do.

I hope for a day when Fibromyalgia is understood and can be managed and eventually eliminated.  It may not be in my lifetime, so until then, I'm keeping hope alive for all who have and will be affected by this illness.

When I can, I will and when I do, I do with all my heart and soul!

Thank you for reading, forwarding and following!!!

Thursday, February 6, 2014

Weather Forecast

My personal experience shows that New England and Fibromyalgia are not a great match.  A popular quote says, "If you don't like the weather in New England, just wait a minute."

I've heard many people with fibromyalgia talk about how it seems as thought the biometric pressure has an impact on pain and stiffness.  I also wonder if it has an impact on emotions.  Could the change in air pressure be squishing our brains.  Would this explain brain fog?  I'm hoping wacky theories may inspire some researchers to find some answers for us.

This Winter, in particular, I've noticed that a few days before a big storm, I begin to experience a headache.  The pressure in my head increases as the storm approaches and the day before, I become irritable and my thinking becomes fuzzy.  The day of these storms, my brain is completely on the fritz and depression kicks in.  A thought will begin and just as quickly leave a blank space.  In the middle of sentences, I forget what I was saying and words become jumbled.  Is there a word for dyslexia of speech?  I also notice that reading is useless.  I understand the individual words as I read them but a sentence means nothing.  Imagine trying to make sense of a storyline with a sentence like, "Josephine blah de blah happily do re with blah me fa." I think it's only human to experience extreme frustration, confusion and disappointment when we know we are so incredible capable of functioning in the world…most of the time.

I've wondered if it would be easier if I had brain fog all the time.  I would have the opportunity to accept what is and learn how to live my life within the parameters of the fog.  I've had extended foggy times lasting 3 or more months.  During that time period, I went through the stages of grief and came around to accepting the condition and learning how to function in the world then the fog lifted.  I could see clearly, speak full sentences and even go out to tend to my garden without forgetting why I was suddenly standing in the middle of the yard.  I was overjoyed about feeling like myself again.  My brain felt as though it had been reattached giving me the desire to shout, "I'M ALIVE!" followed by a maniacal laugh.  The extremes of living with a brain and no brain, sight and no sight, mobility and no mobility are a huge challenge.  I think it would be an easier road acclimating to different abilities than having functionality come and go seemingly randomly.

Of course, through all of this analysis, my spiritual beliefs emerge.  I do believe that the ups and downs of the fibro roller coaster are a part of my life for a reason.  I'm learning so much about myself and how the world works.  I'm given the opportunity to learn resilience…often.  Not only is resilience useful in an ever changing world, it also opens a door to focusing on what is truly important in my life.  I've learned that even though I feel more like myself when my faculties are functioning at a high level, the aptness of my body is not who I am.  One thing that is important in my life is opening up to the true me.  I'm defined by my heart and soul and how I show up in the world, not by my physical or mental abilities.  Redefining who I am is my growing edge.  It's easy to see what I'm not and I'm on a mission to begin uncovering who I am.

We all have a process we're going through in life.  Some see the process as a fight or struggle and some see it as an opportunity.  Most of us can see both sides of the coin but if we begin to put more focus on the opportunity than the struggle, we'll see many more blessings for us in the process.  Remember, blessings are not a reward we get at the end.  Blessings are a byproduct of our willingness to wake up.

Thank you for reading, forwarding and following!!!

Monday, January 20, 2014

Laughing at Myself

It's helpful to have a sense of humor when it comes to chronic illness.  I think I'd go nuts if I took these fibro fog antics too seriously.

Last week I was feeling terrible with an upper respiratory bug.  These illnesses are a challenge to recognize in the sea of fibromyalgia symptoms.  It wasn't until my breathing became labored and a cough appeared that I realized the additional fatigue, digestion issues and foggy focus were exasperated by the virus.

During this time, I continued to drive my children to school and on this one day, I (or we) had a great laugh.  At their school there is a car line at the back of the building.  I was sitting in the stopped traffic listening to the joyful noise of happy kids in the morning (well, two out of three isn't bad).  I remember my mind beginning to wander to what the day would bring me and carefully calculating how much energy I was beginning that particular day with.  Protocol for the car line is that the three front cars let children out and drive off then then next three drive up, drop off and so on.  As we sat, the three cars in front of me stopped and students hopped out and entered the school.  The cars in front of me drove off in single file and staying in pattern, I began to move the car ahead and continue to drive.  As I rounded the corner of the building, passing the drop off points, I heard my son gently say, "Mom?"  I politely said, "Yes?" and he replied, "You…we need to get out of the car."

As soon as they saw me smile, the laughter erupted from all four of us.

I ended up dropping them off at the side of the building and they walked around elbowing each other and laughing together.  If I were lacking a funny bone at that time, I would have missed the gratitude I felt about starting the day on a high note with my three teenagers.

Thank you for reading, forwarding and following!!!

Friday, January 17, 2014

I'm Built for Hibernation

My whole life I've struggled through the Winter months.  I always thought this time of year was difficult for me because of me.  I blamed myself for not being energetic, happy or motivated.  As I tried to correct my wrongness or weakness, I spent a lot of time observing my behaviors, what worked and what didn't work to help me be at least tolerant of the dark, cold months.  Somehow I developed a belief that there is something wrong with me because I'm unable to be myself for 5, 6 and sometimes 7 months of the year.

I'm beginning to understand that I do have extreme drops in hormone levels with vitamin D and thyroid.  Knowing this is a relief because I can take action to counteract these drops.  Also, it helps me understand that I haven't done anything wrong and there is a good chance that beating myself up, about not enjoying New England Winter months, wasn't going to make it better.

I've decided that I'm going to try to be gentle and compassionate to myself, particularly my seasonal challenges.  Instead of fighting against the decreased energy, I'll rest more.  Instead of trying to get things done when it feels as though I'm trudging through mud, I'll do only what I can do comfortably.  This means that I'll begin to not push myself so hard.

I can feel and see, over the years, the extreme difference in me from August to February.  For years, I've told people that I don't thaw out, from the Winter, until July.  I also feel that August is the only month of the year where I feel most like me; the motivated, energetic, smiling, joy filled me.  By January I feel like a lump and I dream about a cave of my own with all the food and warmth to last me through the next four month.  No…really, ask my husband.  I tell him that a warm tiny home with warm food (that I don't have to cook) would be ideal for me.

During the years of blaming myself for being so uncomfortable with Winters, a cave and an opportunity to hibernate felt like I was running away.  It felt like giving up because why would I be so different from others?  I was still comparing myself to those around me and felt less than because I wasn't like them.

I no longer feel less than.  For me, I need to slow down and use less energy. It's important for me to learn how to embrace the flow of my internal seasons.  A warmer climate, year round, may be helpful, but for now while my kids are in school, I'm taking it down a couple of notches.  I will allow myself to put some of my projects on hold and cut down on some of the regular things I do.  Now, hibernating sounds and feels like a thoughtful gift to myself.

This blog is a great tracking system for my personal seasons.  During the months when I'm feeling more like myself and not hibernating there are many more posts than the months of hibernation.

Thanks for reading, forwarding and following!!!

Thursday, January 9, 2014

Will Leading Technology Help us With Chronic Illness?

I just watched a youtube video about Watson.  Some of you may recognize this computer as the one that played the game Jeopardy on television.  It has been designed to have cognitive computing intelligence.  The video I watched, What will you do with Watson, got me thinking about technology and medicine.  In a partnership between MSK (Memorial Sloan Kettering) and IBM, they'll be using Watson in the fight against Cancer.

After watching a few videos, I began to have contrasting feelings around the concept of Watson assisting with patients.  Posing the question, what would I do with Watson, I immediately went to my experience with Fibromyalgia.  During the 11 years since I was diagnosed, I've met with numerous doctors who have not been equipped with enough information about Fibromyalgia to adequately treat me.  The go-to phrase, that I heard often was, "I don't know what to do with you."  And because they didn't know what to do with me, I suffered and went through numerous unsuccessful and expensive treatments for many years.  I often faced a crossroads of giving up or seeking out yet another doctor in the hopes that I would find help and health one day.  I persisted in the shadow of feeling as though I was a cast off or misfit because I had medical issues that are not known or misunderstood.  This made me feel invisible and unworthy of helpful treatments, compassion and attention.  If the medical specialists don't see my illness as a real illness, does that mean that it doesn't truly exist?  NO!  It exists and deserves attention.  I deserve treatment that works for me and doesn't have a catalog full of side effects (but that's a whole other blog in itself).  So, could Watson help people who are in similar situations as me?  We are the forgotten children set to wait in line until there's enough independent research done.  Then will we get our turn?  Will it be too late?  How many of us will have given up by then and lived a poor quality of life because medical research hasn't caught up with us?

For years, it was assumed that my sadness through the cold winter months was because of seasonal depression.  Although I had numerous other symptoms pointing to a thyroid issue, the blood tests showed that I was in 'normal range'.  With my new doctor, he took my symptoms into consideration at the same level of importance as my blood tests.  We discovered that thyroid treatment eliminated the sadness.  This is just one example of how medical science doesn't consider the lower edges of their bell curve or symptoms having as much importance as blood tests.  Some of us don't fit into the bell and appear to be in normal range for blood tests.  It doesn't mean we are less important or less deserving of a high quality of life.

The topic of research and data being entered into Watson brings up another question.  Who is monitoring the information getting loaded into Watson?  Will they ensure that the information is independent of the parties that fund research in order to sell more prescriptions? Is Watson working for the betterment of the patients or the engorgement of funder's bank accounts?

At this time, I'm going to assume that Watson is for the benefit of the patients, with that and lowering medical bills being the highest priorities.  In that case, Fibromyalgia patients may benefit as well.  There is new research done every day in regards to Fibro and relaying this new information to doctors takes time.  Watson could make the information available to doctors at a much faster pace.  Medical professionals will not have to take time away to go to conferences to learn about new findings in this area.  This information can be accessible in the exam room.  Watson will be capable of evaluating the symptoms, blood tests, research and treatments without emotion or stress clouding decision making.  I can see how a computer would have the ability to keep the goal of offering the opportunity of the best quality of life and health to each patient.  I feel the project of using Watson in health care, has the potential to benefit people by getting them the best knowledge of their diagnosis and treatments faster than ever before.

Although I've had poor experiences with my diagnosis' and treatments, I believe Watson will be a great improvement to how medical care is handled now.  Without my past experiences, I may not have been able to see the benefits as clearly as I see them now.  I'd let Watson analyze my medical data and I'm incredibly curious about what he'd spit out.

Thank you for reading, forwarding and following!!!

Monday, January 6, 2014

Let Me Tell You a Secret

You have very important work to do!  This is something no one else has agreed to do and only you can do it the way it is meant to be done.  You see, we are all an integral piece of the puzzle.  Just like the stem of a flower is crucially important for the beautiful yellow tulip.  Without the stem, the tulip wouldn't be a tulip.  It may not even be.

You're here for a reason and only you can uncover what that reason is.  Many people will try to convince you that they know best but they can only speculate.  There is guidance you can use along the way to find your purpose.  Watch people who are inspiring to you, listen to your intuition or go to a sweat lodge.  Whatever you choose to do to allow your gifts to unfold, start today.

I believe in you and you should too!

Thank you for reading, forwarding and following!!!