Nothin' Up My Sleeves

Although I was a professional clown for 10 years, there's no magic here.  I'm not pulling the wool over anyone's shoulders and I definitely don't have any secrets when it comes to my healing process.

I'm just like anyone else...you.  I've had great hardships, losses, I've felt unworthy and unlovable.  There were many times I felt as though life just crushed me and I was down for the count.  Ever since I was 3 years old, I've felt different; an outcast and that there was something wrong with me.  Each time the boulder of life rolled over me, I'd fall into a pity pot and soak there for a while, then I'd get angry and blame the world for all the despair it sent my way.  Every one and every situation around me was at fault.  Then I'd fight my way out of the pity pot and begin the journey of life again.  I practiced this pattern until I got really really good at it.  I was even proud that I pulled myself out so many times...and BY MYSELF.  That was a badge of honor, to do it on my own!  I didn't need anyone and I let people know too.  People, back then called me 'Spitfire' and I wore that name tag, front and center of my ego self.  I built up so many walls and escape routes that my mind was exhausted from remembering the maze of protection I used.

There were many baby steps along the way of opening my awareness, but it wasn't until I gave birth to my triplets when it really hit me.  I began to ask the big questions. Do I want to teach my children the same patterns, in life, that haven't worked for me?  Is there a better way?  If there were a way for me to heal in this lifetime, how could I do that?  Is there more to this life thing than just working, paying bills, feeling like $*** all the time and then dying?

I began my intense study of life and the possibilities of joy.  At that time, I didn't even really believe that life could be lived joyously, but I was determined to find out.  What would it hurt?  My first focus was my physical state.  I tapped more into yoga and exercise as more of a mindfulness activity than just the 'I should' attitude I had prior.  As I became more mindful, I began to feel again.  I was never a big cryer, but the awareness thing opened the floodgates.  Everything made me cry; movies, a first step, an observation of a kind gesture on the streets of Boston, you name it.  They were tears of joy.  Although, I didn't know that at first and I thought I was cracking up.

I gradually moved into a period in my life where I studied and took action with forgiveness in my life.  Those whom I blamed, whom I was hurt by and those I felt left me in despair, I forgave.  I took my time to find a small jewel I could take away from each of those relationships and brief interactions. To my great surprise, every single person and situation where I felt hurt and even broken hearted, there was a valuable gift.  As I came upon this gift in some, I'd get angry.  On one level, I didn't want to find a gift. That would allow me to continue to blame and be angry and get validation that it was just a horrible experience, period.  But no such luck.  There were many life lessons and unexpected gifts.

Oh, as much as I protected my heart, it began to open and it was painful and hard.  What if I soften and open my heart?  Of course people will take advantage and I'll be hurt even more, but I moved forward anyway.  I was cautious and intuitive with people and I began to trust again.

I had been diagnosed with Fibromyalgia during this opening of awareness and from the beginning I knew that it was a symptom.  A symptom of what...well, I'm still working on that one.  My belief is that once I uncover the root of illness in Me (mind, body, spirit), then I love and care for the root cause.  Once the root is healed, the symptoms go away.  It sounds simple, but why would it need to be hard?

I continued my journey and found my spiritual home.  That was 12 years ago and looking back, I was so scared and hidden.  Unity on the River taught me so much about myself, about the world and gave me a place to be different.  I was an in-cast.  I learned and practiced affirmations, vision boards, read spiritual texts, began taking classes to be a Minister and totally embraced the transformation happening within.

Most recently, after years of disheartening doctor's appointments and being shuffled around from one expert to another, I was referred to Human Nature Natural Health where I feel I found my individualized sustainable Health Care home.  It is a place I resonate with and I share similar beliefs and values with.  I feel that I'm on the right track to sustainable good health.  It's a process, like any other, that doesn't happen over night.  I'm fine with that.

This is just a snippet of my journey.  I wanted to share it to let others know that it is possible to find joy and health.  It means taking full responsibility for your life, awareness, health and growth.  I'm going to be direct and let you know that it's not a cake walk and it takes hard work.  My quality of life is worth it and yours is too!  No one can do it for you and it can't be done alone!  There is no cookie cutter, overnight solution.

The key for everyone is balance.  Finding balance in the health of Mind, Body and Spirit.  You are worth it!  I encourage you to take one step at a time and that step might be to realize that you must love you to find whole health.


Thank you for reading, forwarding and following my posts!!!
Terri

The Naturopathic Doctor's Visit

Yesterday, I had my first visit ever, with a Naturopathic Doctor.  I've done some alternative therapies in the past, like acupuncture, massage and reiki. Although, I've never had guidance around what combination would work best for me.  I've always felt strongly that, in conjunction with a doctor's expertise and a clear plan for food intake, exercise, the right supplements and treatments, my body would be able to heal.

I was nervous but hopeful about the Naturopathic Doctor.  I did my research ahead of time, and received some great feedback from others with Fibromyalgia, chronic pain and chronic fatigue.  My hesitation around seeing this doctor, was coming from my many challenging attempts to explain to a new doctor what I was going through.  My experience was that I'd be spending time and energy trying to prove myself to someone I didn't know and someone whom I didn't know if they could help me.  On many occasions, it's been a waste of my time and energy.  The feeling of hope came from the feedback I got as well as from a strong feeling that I'm on the right track with my healing.  I looked at this doctor's website and scoured through it to see if there were any red flags or green flags.  I found no red and all green.  One of the green flags was the doctor's approach.  He combines healing practices and beliefs from all over the world and not just America.  The information on his site was in simple terms and quite understandable to a fibro brainy person.  I liked seeing the information about diet and finding the right foods to eat based on your blood type and body type.  There's fancy scientific words for this, but my brain just doesn't retain that stuff right now.  I felt that what I was seeking was all in this one place; a healthy, all natural, alternative healing center that looked at the person as a whole.  Every system in the body needs to work with, not against, all the other systems in the body.  If the pancreas is not working efficiently and effectively, the sugars in the body are irregular leading to hypoglycemia or diabetes and can contribute to fat storage.  Spikes in sugar levels will take their toll on the adrenal glands, which in turn could lead to chronic fatigue.  Now, I'm not a doctor but, even in brain fog, I can see the obvious negative chain reaction illness can cause in the body.  Seeing that everything I had hoped for, in my medical care, may be under on roof, I was excited to see this doctor.

My appointment was 3 hours and nothing short of mind blowing.  One of the first things the doctor told me was that he did not want to hear about any diagnosis or challenges I've been dealing with.  He would read that later in my paperwork, after he did his unbiased exam.  His exam consisted of a finger prick blood test to determine my blood type, blood pressure, multiple pulse areas, examining my eyes and determining body type.  I was comfortable and able to stay in my clothes, not having to put on one of those horrific paper johnnies.  The blood type exam determines the best foods to eat and this, for me was the most crucial part.  I've tried for years to find the foods that work best for my body.  All I've been able to come up with is that sugar doesn't work for me and carbs, which turn into sugars in the body, don't work for me.  Not knowing much else, I just started cutting things out, hoping that I'd begin feeling better soon, until I found myself as a raw food vegan.  Come to find out, I should be eating red-meat protein at least 3 times a day.  Raw vegis don't work for my digestion and I was right about the sugar.  So...as they say in the south, "Butter my biscuits!"  Who knew?  This explains why I was craving meat when I finished my juice fast.  Oh, and he also said that with my energy levels at a 0, a juice fast is not a good idea.  Oops...too late.  The doctor concluded so many things about my current state of health.  He didn't need convincing.  He didn't even need me to tell him what my challenges are. He told me and was right on target.  He told me about my wacky hormone levels, the hypoglycemia,  the chronic pain, chronic fatigue, pancreatic cyst, IBS, poor memory, neuro symptoms connected to difficulty walking and so much more.  He was detailed, understandable and caring.

I was thrilled to have walked away with a meal plan designed to help me heal, therapeutic choices to consider and natural supplements that are formulated for my body type and specific challenges.  And to think, none of them have a big warning on them or a long list of small-print side effects that end in, "possible death".

It's important to me to have a team member who also believes that the body is very intelligent.  If given the love, compassion and support it needs, it can heal itself.  How many of us never put time or thought into how the body would thank us if we are gentle and compassionate towards it.  I now feel as though my team is complete and ready for the healing process to truly begin.



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Celebrating 50 Posts

I began this blog as a way for me to personally, process my journey with Chronic Illness.  I chose to post my inner most thoughts, be vulnerable, show my angers, frustrations, hopes and dreams.  I could have just purchased a journal or typed in a private folder, but I thought, "What if someone else is going through something similar and may relate or be inspired?"  Fibromyalgia needs to be visible and I want to be someone who is not afraid to put myself out there.  People should know more about this illness and what we go through on a daily basis.

It's been two full months of writing almost every day.  I've shared 50 posts and, all together, there's been 1,850 views.  Over 15 countries are now viewing my blog.

I'm incredibly honored that you all read and pass on my posts.  I've gotten some wonderful feedback and it does my heart good to know that my writing is helping not only me, but others as well.

Now, this part is for all of you...


Please let me know what you would like a follow-up post on.  It may be the juice cleanse I did,  the ECT decision I was making, or just let me know what you're favorite post has been so far.  Also, if you have any questions about the illnesses my body is challenged with, feel free to ask.

If there is any problem commenting at the bottom of this post, I invite you to join me on Facebook.  

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Terri Naroian
Boston, MA

Focusing on the Bigger Picture

Sometimes, with chronic illness, we focus on the pain here, the twinge there or the challenge every day brings.  Why wouldn't we?  Each time there is a doctor's appointment, we are asked, "So where do you hurt?  What type of pain is it? Can you rate your pain from 1-10? How has your sleep been in the last month?"  These questions are important so the doctor can assess your condition and treat the symptoms with prescription medications.  That is their job.

I realized that each time I had a doctor's appointment, I'd feel worse afterwards.  One reason was because I know, with a great deal of ER visits, that my body does not tolerate prescription medications and main stream medical doctors are trained to prescribe.  That is the way that they 'fix' people.  They don't have many other tools and are a bit perplexed when I don't fit into what they were trained to do.  I've had doctors tell me that they just don't know what to do with me.

The other reason is I feel worse after an appointment is because the doctor's draw my focus to the pain and discomfort.  It's a laser focus where it's even rated to a specific point.  Once my focus is directed to the pain, it heightens.  One thing I've heard at my spiritual center and had first hand experience with is the phrase, 'what you put your focus on increased'.  There is scientific evidence that if focus on the joy in life, you gain more joy.  If you focus on the things that are frustrating in life, you experience more and more frustration.  Of course this would apply to illness as well.  The more I focused on the pain, the more I felt it.  I've used relaxation techniques, meditation and mantras to practice focusing my attention on the gifts, the beauty in he world and happiness.  I'm not perfect and have more practice to do, but I am able to distract myself enough to shift the energy of the pain to something more beneficial.  It doesn't mean the pain has gone away, it's always there, it just means that I'm learning how to not allow the pain to rob me of a joyful life.

We all deserve to have a high quality of life!  I choose to seek out and focus on those people, things and aspect of life that help me feel as though I'm living life to the fullest.  Just because I have multiple medical issues (many of which doctor's don't know how to fix), I'm unable to work at this time, and I struggle with depression, doesn't mean I should just roll over and let life pass me by.  On the days when  my legs have some energy, I'll celebrate my mobility.  I'm even learning how to laugh at my brain fog

and the silly things I do because of the state of confusion I'm in at times.  We have a choice to either say, "Well, I guess that's just the way it is.  My life is not mine anymore.  It belongs to chronic illness." or we can say, "I'm going to rise above this chronic illness and not let it take over my life!  There are still many things that I can experience in the world.  There are many ways I can even make a difference.  I may not know how right now, but I'm going to keep looking until I find them."  Giving up is not an option for me.  I'm a seeker and I'll always be a seeker, despite what my body may be experiencing.


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Clothing is Such a Pain

One of the aspects of fibromyalgia that hit me hard today, was how painful clothing can be.  This is something that I've found difficult to explain to doctors and others who don't have fibro.  For many of us, some days there's muscle or joint pain, some days there's headaches, some days our clothing hurts and most days it's a random combination of any of these.  It's easier to help people relate to the muscle pain because it can be very similar to a strain or exercising to the point where walking down steps is a stabbing agony.  Similarly, describing joint pain can be related to a sensation that many people have experienced.  When it comes to explaining the pain of seams, elastics, buttons or just a fabric rubbing against the skin as painful, I get blank stares.

Today started with an immediate discomfort from the collar on my t-shirt.  It was just a simple round neck t-shirt that I quickly threw on, to go for a walk.  As soon as it touched the front of my neck, I felt the pressure.  It was loose fitting, but just the fabric, gently sitting at the front of my neck, began to trigger the signals to the brain saying, "too tight!".  I've been at this long enough to know that if I didn't change into a v-neck shirt, I'd land myself into bed with a migraine.  I'm pretty sure my husband has gotten use to me jumping into my jeans in the morning and within seconds tearing them off to grab the leggings in the drawer.  He probably thinks it's a fickle girl thing, but nope, it's a pain thing.  I usually wear the basic round neck t-shirt to exercise, because that's what I have, and it doesn't bother me.  Every day is different and I've learned to pay attention, listen and respond to what my body is trying to tell me.

After exercise, it was the sneakers that were boring into the soles of my feet.  I still haven't figured out how a flat surface can feel as though it's drilling a hole into the bottom of my feet, but I can tell you it's torture.  So, those babies got yanked off and put away.  Then it was the seatbelt in the car.  Every turn or bump we went over, the seatbelt would saw just a little deeper into my skin.

I woke up this morning with a plan.  There was one thing I needed to do, and that was to get to my doctor's appointment, and one thing I wanted to do and that was to clean off the dining room table.   Often when I have a day that starts out the way this one did, I continue to adjust, listen and adjust again as quickly as possible so I can avoid a full blown flare.  It didn't seem as though it was too much to expect for the day and I would pace myself.  It's still hard to release, let go and accept that my body is needing some big, roomy clothes and a tempurpedic mattress.  Today the big roomy clothes and bed is where I landed and the dining room table is still cluttered.  I guess I'll save that for another day.

There's a level of stir crazy that I hit when I've been gentle with my body, staying still and listening for days on end.  I have an active spirit and when the brain fog lightens up, an active mind.  So, I push the boundaries at times, hoping that one day I'll just 'mind over matter' the chronic illness and will myself into health.  As much as I do believe that there is a cure for this chronic pain and illness, I also believe that it starts with awareness, inner healing and treatments that look at the body, mind and soul as a whole.  There needs to be a rebalancing of all the working systems of the body.

Gotta go, the wrinkles in this sheet, on the bed, are killing me.

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Sadness After a Great Day

I had the wonderful opportunity to speak in front of my spiritual congregation today.  In preparing what I would say and how I would say it, I was excited to get back on stage.  I use to dream about telling stories to groups of people, teaching classes on self care and self awareness.  These are things I use to do on occasion and each time I did them, I'd feel so alive.  I felt as though while I was teaching or speaking, things flowed with ease and grace and time disappeared. Today, I had my usual butterflies before I got on stage and while I was on stage, I was a bit jittery.  When I was finished, I could feel some of the bubbling of, "this is what I'm meant to do", coming up.   Then the tightness in my chest and the welling of tears.  I really wanted to enjoy and embrace the opportunity, but I walked away feeling extremely sad.

My husband and kids came to support me.  I got wonderful, caring feedback after the service.  I was even approached and told that I would be speaking again, many times.  When this wonderful woman said that to me, she was so confident it made me wonder if I had agreed to speak another time.  I hadn't, but it made me happy, sad and scared to hear about the possibility.

The very first time I did a public speech was in High School.  I was terrified and had a very difficult time finding a topic to talk about.  I finally decided that I'd talk about something that I didn't have to memorize.  I'd talk about a personal experience.  I took it as an opportunity to compassionately communicate how hurt I was when I was the new kid in school, 5 years prior, and I was treated very poorly.  With tacks on my chair, girls telling me I was ugly, to my face, and kids turning and walking away when I approached. I talked about how mean everyone was toward me and how lonely it felt in a new town with no friends.

The second time, was when I decided that I'd work as a clown at children's birthday parties.  I did so well with this type of speaking/performing, I built a business out of it and became a professional for ten years.

Then I became a fitness instructor teaching spinning classes and yoga classes.  All of this experience made it very clear to me that being a leader and speaker was something I had to do.  It is part of who I am.

Now, with fibromyalgia, I don't know how I'm going to feel from one day to the next.  I know that during the dry, Summer months I feel my best.  I'm capable of doing more and I feel more confident about committing to things in the future.  The last two Summers, I thought I may have overcome the fibromyalgia and chronic fatigue and made some big plans that carried into the Fall and Winter.  Unfortunately, I had to cancel once the damp, cold weather rolled in.  I let myself down and others who were relying on me.

My heart feels as though it's torn in two.  I'm called to speak!  I'm called to tell my story and inspire others to tell their stories and share the gifts they've gotten from their stories.  I'm called to lead.  There's a fire in my soul to speak the truth and encourage others to do the same.  This illness.  How can I let that fire burn when this pain and fatigue take over my body?  My soul has a strong and passionate mission and my body is experiencing illness that doesn't allow my soul to soar.

I have great Faith that I will find a way to allow my soul to soar.  I'll keep listening to Spirit and following the breadcrumbs.  The answer is within me....somewhere and in time, I'll hear it loud and clear.

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Hey! There's One

I'm glad that I'm watching out for the gifts because...I found one!  Although, I've known for a while I had this ability, my perception of it shifted today.  I've been reading tarot cards and doing intuitive readings for over 20 years.

Each reading is unique and I enjoy helping people find answers and guide them through transitions.  I do readings once or twice a month and sometimes I'm a guest reader at a local monthly psychic fair.  Because of the fibromyalgia, I don't advertise or promote my services.  I just don't know when I'll be well enough to either leave the house or have the focus to do readings on a regular basis.  In the past, I have noticed that I'm energized after readings and my mood is lifted.

Today, I realized that during the reading, I'm not really a part of the process.  Obviously I'm shuffling cards, seeing symbols and using my voice to speak but the rest is flowing through me.  It's not coming from me.  If I begin to think about what information is coming through, I begin to try to analyze or interpret the information and the spirit connection is lost.  I learned a long time ago that I don't need to know the connections my clients are having with the information.  The message is for them, not me.  Many times, I don't even remember what came through after a reading.  I let my regular clients know this, because they ask me to go over what was said in previous readings.  Often during readings, I don't understand much of the message.  I relay what information comes to me through the cards or through spirit and ask if it makes sense to the client.  The majority of the time, the client has a direct connection to the information, which boggles me because I don't get it.  All I know is that as long as I get out of the way, the message the client is meant to receive, is received.

After todays reading, I was aware that during the reading, my body didn't hurt.  I wasn't exhausted and there was no brain fog.  The day, overall, was challenging with mood swings, pain, anger, frustration, boredom, and exhaustion.  I kind of dreaded the phone reading I agreed to do, because I was worried that the discomfort throughout the day would carry over and effect the service I was providing.  I take great pride in offering good customer service.

I went through my usual preparation of shuffling and clearing the cards, saying a prayer of intention and  affirming that I am acting as an open vessel, before the call came in.  The phone rang, I took a deep breath and answered.  The reading was delivered with ease and grace and my client said she was uplifted and motivated and felt much better due to the information I delivered.

The illnesses didn't exist during those 45 minutes.  The woman on the other end of the phone felt much better after the reading and said she very much appreciated everything I did for her.  It would be nice to do readings 24/7, if it were possible, because I naturally got out of the way in order to do what I love doing.

Is it possible that another gift uncovered today is the awareness that I need to get out of my own way?  Hmmm...

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Inspiration and Another Healing Song

This isn't just any song!  There's a story attached and it keeps getting more and more significant.  Calling All Angels by Train is a song I connected to during a time I felt stuck in the shadows.  The business I started, a yoga studio, was meant to support myself and my triplets.  At the time I was a single mom and needed to have the flexibility as well as the passion for the business I was operating.  Seasons of Yoga had both.  For two years, it grew and looked as though it would be the piece that was missing, financially in my family.  Then the fibro fog hit.  I wasn't even aware that my brain functioning had dropped.  I wondered why attendance was dropping and began to grasp at anything I could think of to save my business.  I made some poor decisions out of desperation, and I used credit to try to keep the business afloat. My business finances began to suffer and my personal finances began to suffer.  I was in a panic, I felt alone and felt there was no where else to turn.  I began to pray and one day, I heard this song.  Calling All Angels by Train, it helped me through, made me feel less alone and gave me some guidance.  I listened to that song over and over again.  Although, my business went into bankruptcy, my healing music, my family and my faith carried me through.

During the same time period, I was producing and hosting a couple of television shows at the community tv station.  One was a talk show called, Divine Time.  It focused on extraordinary people and their stories.  I wanted my guests to share how they came to be guided to the place they are currently. I wanted to know if they felt they were on their divine path and how did they found it?  Hearing these stories inspired me and my hope was that it also inspired my viewers.  One of my guests was an amazing woman named, Denise DeSimone.  Singing and spirituality were a couple of her passions, before I even met her.  My first introduction to Denise was at my spiritual center.  She was the guest singer and the song she sang was, Calling All Angels. A shiver ran through me and the tears began to flow.  At the time, I didn't know that her story would inspire me at a much deeper level than I ever expected  Telling you her story wouldn't do it justice, so here's a link of Denise telling her own story.

It's probably been about seven years since she was on my show and now I'm faced with an opportunity to heal my body.  Granted, I don't have a life threatening disease, but I still connect with her process, intuition and persistence.  Denise has been very busy since she's been cancer free.  She has written a book about her journey, From Stage IV to Center Stage.  I feel very strongly that her story can help all of us who deal with chronic pain, a change in lifestyle that we have little control over and so much more.

As a bonus to this post, my husband and I are in a position to have to replace one of our cars.  It's not safe and will cost us much more to fix than it's worth.  In the process of looking at all our options, none seemed feasible.  Just when I was at my wits end, Denise posted that she was selling her very safe, 7-seater, good condition car.  Everything about this car fit our needs.  Ray enjoys driving a large, solid car and the triplets are tired of being pickled in the back of my Prius. It didn't seem to meet my needs, as much, because I'm a carbon footprint watcher, save the trees, small living type of person.  Then, during meditation, it hit me.  It's the perfect vehicle for me!  Look at who's energy is in this car.  Look at what the purpose of this vehicle was.  She used it to travel from place to place to tell her extraordinary story of healing and it was packed full of her high energy books with the message of healing.  I can't even imagine the healing energy I can receive just by being in her car.

If you're interested in more information about the incredible Denise Desimone, here is her website http://www.denisedesimone.com/


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Mom Told Me I'd Have Days Like These

How many of us can truly admit that Mom was right?  Well, mine is  pretty on target with things and at 45 years old, I'm grateful for that.  Of course, at 15, she didn't know anything...so she's really learned a lot over the years. :-D

My Mom isn't one to give advice unsolicited.  She has always been one to allow space for growth and self learning and when we were ready for her two cents, we'd ask.  Even then, she didn't lecture.  It's more like answering just the question to not give more than what the inquisitor is ready to hear.

I've observed my mother live with Fibromyalgia since my late teens.  There wasn't much information about what she had, at the time, but we knew she was struggling with some physical ailment.  She had great fatigue, body aches, and she couldn't sleep at night.  And these are just the things I observed years back, so I'm sure there was much more she was trying to manage with her health.

Today, I give my Mom a nod of appreciation.  It just happened to be a more physically challenging day than I've had in a while.  I still woke up, put my feet on the floor and went out the door, for my morning joggle.  It was more of a zig zag joggle than usual.  I'm lucky we live on a fairly quiet street.  My balance was way off.  The energy from the endorphins, that I look forward to after exercise, just was not there.  Throughout the day, I would have half formulated thoughts of things that needed my attention, but I struggled to complete the though.  My balance was off so much that my husband didn't want me to use the outside grill to cook dinner, concerned that I may stumble onto the hot surface.

One of my daughters observed that my physical state was challenged and began to help me out.  I was sitting at the table, getting ready to tackle some of the half-thoughts of tasks when she insisted that I sit on the couch.  Her reasoning was that it was a "softer place to land".  I did a bit of reading and prepared for a meeting I have tomorrow, but mentally got lost in the process.  I think there must be signs I give off when I'm lost or confused because my daughter, then insisted that she help me to bed.

She walked me to the bedroom, brought me my basket of pills, water, phone, laptop and set out my PJ's.  Although, it was her bedtime, she sad with me for a little extra time.  I think she was just making sure that I was settling in okay.  On her way to bed, she told me to give a holler if I needed anything.  Warms my heart.

Although, my Mom didn't tell me that I'd have 3 amazing and compassionate children to assist me when I needed help, she did tell me that I'd have days that were more painful than others.  Mom reminds me that I don't have the flu, I have fibromyalgia.  She also reminds me that what is more important than the physical and emotional struggles is family and we move through the struggles to experience the quality time with family.


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Is Fibromyalgia a Catalyst to Something More?

Over the past 10 years, since I was handed a diagnosis of Fibromyalgia, I've been seeking answers.  During my search, doctors and research have made it very clear that it is not a disease, it is a syndrome.

My two favorite definitions of syndrome are from Dictionary.com;

1.  the pattern of symptoms that characterize or indicate a particular social condition.

2.  a predictable, characteristic pattern of behavior, action, etc., that tends to occur under certain circumstances: the retirement syndrome of endless golf and bridge games; the feast-or-famine syndrome of bigbusiness.

Neither one of these definitions indicate that there is any physical connection.  A social condition?  Does that mean that we were brought up in certain conditions that produced Fibromyalgia?  A pattern of behavior, action, etc.  Does that mean that if we change our behavior we can overcome the chronic pain, brain fog and deteriorating quality of life?

I can only speak for myself, but I know for sure that my body experiences severe pain and my brain function comes and goes, like the weather.  It is possible that my childhood trauma may have triggered something within my psyche, but as for patterns of behavior, and actions.  I disagree.  The part about 'social condition' indicates that maybe I choose to be disabled because somehow, socially, I believe that is my place in the world.  Why would  I choose that?  I know that I am health, abundance, creative, mindful, intelligent and here to make a difference.  These are my truths, so why would I accept anything less?  I won't and that is why I continue, after 10 years of moving forward with courage, faith and strength to find some answers.  I am passionate about sharing my process in order to inspire others to keep moving forward with their process.  We all have the answers within and my answer may not be someone else's, so all I can do is share what works or doesn't work for me.

As I look at the diversity of this medical challenge, and how it effects people very differently, I wonder if this is a catalyst to move each of us into finding our own paths.  Some of us experience Chronic Pain that is relieved by Aqua Therapy and that was the opposite of my experience.  Some of us can work full time jobs and some can't.  Some of us have multiple other conditions that we're working on juggling along with the misunderstood fibromyalgia.  Each of us could tell a very different story.  Are we being drawn to work this out as a community, but as individuals?  So far, doctors don't really know what to do with us.  Prescriptions have so many side effects that we either need to choose to not take them or we must take others to counteract the side effects of the original.  In my case, my nervous system is so amplified and overwhelmed by stimulus, that I tend to experience severe side effects.  My body literally can't tolerate most prescriptions.

Along with my nervous system being in high voltage, I have uncovered a gift.  At first I didn't make the connection, until I met a fellow Fibro woman who shares the same gift.  We are extremely intuitive.  I have a knack for seeing future events and patterns leading in a particular direction in people's lives.  I wasn't aware of this until I lost a few friendships after sharing what I thought they already knew about what was ahead for them in their lives.  The confirmations of these 'predictions' came when years later, I got emails or an invitation to have coffee and I was told of their current circumstances.  They shared what I had said to them years prior.  I actually thought everyone's brain could see patterns leading in certain directions.  I use my gifts in this area, now, reading tarot cards and coaching others on their spiritual journey.  This is not my calling, I'm sure of it.  I know that everyone has the ability to be aware of the direction they are moving in and to tune into the answers they seek.  I use my skills as a stepping stone for them to gain the confidence that there are messages and guidance for them, and that they can be open to them on their own. Our society is so conditioned to rely on others to lead them and 'fix' their problems that we've been convinced that we must be dependent on the medical field, or the education system and the monetary system (but don't get me started on that).  

There are times when my intuition is so intense that I struggle to be around someone who is not aware of the path they are taking.  They may not even know that they have a choice on their journey.  

"When you have to make a choice and don't make it, that is in itself a choice."  ~William James  

This, I believe is when Universe makes the decision for you.  It may not be the path of least resistance, but it is a path.  On the other hand;

"Once you make a decision, the universe conspires to make it happen."  ~Ralph Waldo Emerson

So, know what your top values are and make your decisions based on your top values and know that the universe is on your side.

I look forward to sharing more of the things I've learned on my path with fibromyalgia.

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To ECT or Not to ECT, That is the Question

Both of yesterday's doctor's appointments revolved around the possibility of using ECT as a treatment for the major depression I experience.  Electroconvulsive Therapy has been proven many times over to be 80% effective with depressive disorders.  It came up as an option for me because my body doesn't tolerate prescription medications.

My first reaction to the proposition of going through ECT treatments, was, "No way!".  I definitely had some preconceived notions about the procedure. I thought that it would be painful and I didn't know enough about it.  This brought up lots of fear.

So, in most cases where I sense fear, I research.  While online, I learned that ECT is the benchmark that many pharmaceutical companies base their medication effectiveness on.  My doctor confirmed these findings also.  There hasn't been one medication that has come close to being 80% effective in treating depression.

I, of course, had many conversations with my husband about this option and he was extremely concerned that it may send me into a fibro flare for who knows how long.  The electric shock does cause the muscles in the entire body to clench.  While we talked to the doctor, I mentioned Ray's concerns and also told Dr. S that I suspected that his worries stemmed from his passion for movies.  I was right.  He said that he kept thinking about one move, a long time ago, that had a character who went through some rudimentary electric shock treatment.  She assured him that today's treatments are very safe, professionally monitored and I'd be under anesthesia for less than 15 minutes.  Ray seemed to be much more at ease about the process after hearing more about the current practices.

As I continued to research, I also found some scientific studieshttp://www.painjournalonline.com/article/S0304-3959(06)00002-9/abstract
studies showing evidence that fibromyalgia pain can be greatly reduced with ECT treatments.  This was all good news!

As someone who will never give up on the possibilities of a better quality of life, I'm willing to try new (and sometimes scary) things to get better.  It is so exhausting to constantly be aware of my thoughts and turn them around to the positive.  I get tired of using my energy to keep that tugging sadness at bay, every day. Each day feels like I'm walking through thick mud, making sure my posture is upright (because tests show that lifts the mood), and when I least expect it, the slightest touch sends fireworks of pain through my body.  My strong belief that I can live a life with ease and grace carries me forward.  I realize, in this time of evolution, the chances of every minute of every day, being easy and graceful, are slim.  That won't stop me from pushing on the edges of the evolutionary timeline.

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Disclaimer:  In no way am I a doctor or professional health care provider.  Any and all information that I share here is my experience.  Always consult your doctor with questions or do your complete research.  This blog is not medical advice and I am not advocating any medical treatments.  What works for me may not work for you, so talk to your doctor.

Vacationing in Shambhala

It's been one of those days.  Every minute was a challenge to focus on the gifts and to stay positive.  I utilized all my tools to combat the negative thoughts, the physical and emotional pain and it was exhausting.  I had two back-to-back doctor's appointments an hour away from home.  I've become aware that when a doctor begins to ask me questions, I fall into the defensive.  I've encountered many physicians who have told me, to my face, that Fibromyalgia is a catch-all diagnosis and that I'm just too sensitive.  The next step was to pull out the prescription pad and send me home with pills.  It took a year and a half for doctors to realize that my body was not tolerating prescription meds and that was after numerous ER visits with side effects.  I had been communicating, as best as I could, that I have never been able to take prescription medications.  It got to a point where doctors would look at my laundry list of medications that made me very sick and told me that they 'prescribe', so there was nothing they could do for me.  One particular doctor said to me, "I just don't know what to do with you."  With a foggy brain, poor memory and low comprehension skills during a flare, I was ineffective in advocating for myself.  So, today, I brought my husband along for support and also as an extra set of ears in case I didn't understand or couldn't communicate well.  Once the doctor began asking me questions, my anxiety began to raise and I became fearful that she either wouldn't support the diagnosis of fibromyalgia or she wouldn't hear what I had to say.  I've often felt judged in situations like that.  When Ray noticed my anxiety heighten, he quietly leaned over and reminded me that the doctor is just collecting information.  He said she's not judging me, she is just trying to help me by determining what the next treatment step would be.  With his support, I was able to breathe a little easier.  In the end, the doctor did come up with a treatment plan that I was ready to try and it doesn't include any pills.


I left the appointments feeling hopeful, although there was still this inner tugging of sadness.  I feel this tugging every day and I bless this sensation my body is feeling, I affirm that I am healthy and whole and I ask to know the blessing, now.  Sometimes I get an answer, but not today and that's okay.

My physical and emotional energy levels felt depleted when we got home.  This is a familiar experience in my body and I know what I need to do when I get to that point.  I need to have a little to eat and to lay down.  Sometimes, resting my body in a quiet and comfortable space helps me recover in a matter of a half hour or, sometimes it takes the rest of the day.  Not today, I needed to drive my kids here and there, then we had a much needed family meeting, which lasted a great deal longer than planned.  Granted, at this point I still hadn't rested or eaten.  As my energy plummets, it is much harder to manage the pain and depression.  That tugging becomes a strong pull until everything hurts and the tears feel inevitable.

My rest has begun, six hours after it was truly needed.  I definitely pushed myself too far today.  This is good to know, so I can plan things much better next time.  Small snacks to bring in the car would have helped.  Agreeing on an end time for our family meeting could have helped or even having the family meeting in my bedroom while I rested could be helpful next time.  All good lessons for me to keep in mind.

After today, I've decided that I'm going on vacation.  I'm going to the wonderfully sacred place of Shambhala.  Many people believe this place to be a myth and many believe it to be a state of mind you can reach through enlightenment.  I choose to believe that it's a real and beautiful place of love and peace.  A place that knows the secrets of being and living in harmony with each other and our planet.  I'm going to rest and rejuvenate and learn some of the ancient teachings so I can bring them back with me to share them with my community.

Part of the myth is that when the world reaches the worst point ever with violence, natural disasters and overwhelming poverty, the residents of Shambhala will emerge and teach us how to live without violence and in harmony with our planet earth.  Before this happens, more of us need to wake up.  We each need to take responsibility for our part in the demise of the planet.  Then take massive action to correct where we have gone astray.

My journey begins in about 10 minutes when I close my eyes for the evening.  For now, I can only travel to Shambhala in my dreams, but maybe someday, I'll be flying off to the Himalayas.  I can let go of the circumstances of my day and know that my soul is whole, healthy, peaceful and connected to the energies of Shambhala.  Bon Voyage!


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I Choose to Fly

With chronic illness, many times people are taken away from the things they use to do.  Activities they enjoyed, strived for and were good at.  Fibromyalgia is no different in the way that it has instigated shift in my life.  I'm compelled to look at my life differently now.  I went through a grieving process as I let go of the expectations and dreams I had before chronic illness.  I defined myself as the business owner, the long distance runner who planned to do a marathon, the risk-taker who flew on the trapeze, the spiritual leader and consummate learner.  I was convinced that all of those things were in the past and at one point, I had a shivering vision of being the mom, wife and homemaker who gave up on herself.  A shell of a person with no light in her eyes.

That vision rattled me and sparked the strength within.  I know that my life is not over and I don't have to live the rest of my life as a shell of my former self.  I'm only 45, people are living until 150 these days.  That's a long time to be in the world and unhappy.  NO WAY!  That would also be subjecting my family and friends to nothingness.  I wouldn't have anything to offer, give and share with them; just dead grey eyes.  I'm not done here, in my life and in the world.  I believe everyone has something to offer to benefit society, especially those who have challenges.  We're the ones who find out what we're made of and the choice between giving up or flying smacks us in the face.  I choose to fly!

Now that I've made the choice, I can move forward to explore how I can fly.  There's no wavering here.  I need to try new things, explore a different angle of the old things and listen to my inner voice.  One thing I do know about myself, at this time, is that my confidence fluctuates quite a bit with the challenges of major depression.  Medically, there's a treatment plan in place, but there must be a personal plan also.  I can't afford to waiver, I must stick to my choice to fly with a firm commitment.  As @Tony Robbins would say, "If you're going to take the Island, you must burn the boats.".  There's no turning back.

Looking at the things I assumed I wouldn't be able to do, I realize that with some small adjustments, I can still take part in some or most of them.  I'm able to do coaching sessions and Tarot card readings over the phone and I can schedule them for when they work for me.  There's my business.  It doesn't have to be a large, hustle and bustle business.  I can be an independent contractor making my own schedule and choosing who I work with to make sure I'm not overwhelmed and the quality of service stays in tact.  Running has always been a huge part of my life.  It's something that lifts my mood, keeps me fit, and brings me joy.  The vision of the marathon really wasn't about the marathon, it was about doing what I love to do and that's run.  Letting go of the attachment to what I use to define as running, I can redefine running to fit into my needs.  It's more like a joggle that turns into a walk.  I'm outside and I'm still enjoying the exercise.  As for the spiritual leader, I have a feeling this just comes through me.  Again, shifting my perception of what that use to mean.  I envisioned speaking on stage and sharing The Word and encouraging others to connect with their malkutah, inner kingdom.

It seems as though, I live this and may be a spiritual teacher just by being and living it.  Also, I can learn through books, documentaries, online classes that have no time frame to complete.  The trapeze...I'll let go of that one.  Just thinking about it makes my body hurt, so I guess it wouldn't bring me joy anymore.

As for new options, I'm still exploring.  Writing brings me joy and doesn't feel like a chore.  It seems to be something that my heart just feels it needs to do.  I'm also pretty good at predicting the weather.  My body tells me when a cold front or rain is coming.  When the barometric pressure drops, so does my energy and a weight sits on my shoulders.

It feels as though I have a good start to finding the 'new' things that I can do in this world that bring me joy.  Ultimately, I know it's more about being.  Once we are comfortable being who we are truly meant to be, our gifts naturally emerge with ease and grace.  That's flying.


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All I Need to do is Look Up

During one of the most physically and emotionally painful times this past Winter, I had an ongoing dream at night and vision that would come during the day.  During the waking hours, I would use my training with awareness, acknowledgement and choosing to change my thoughts.  These tools weren't working and I didn't know why.  It was frustrating because I've used these tools before and I was able to refocus my attention on something uplifting or joyful or plain old distracting.  I eventually realized that there must be something more I needed to learn from this dream.  I needed to explore it further.  This is a scary proposal because I was worried that I would spiral down to a place where I couldn't return.  Thoughts of, maybe I'm meant to be a crabby, crippled old lady at age 45.  Regardless of the fears, I chose to explore my dream further.

I saw myself sitting on a cold, stone, dirty, slab floor.  My knees were bent and tucked under my chin with my arms wrapped tightly around my knees. I felt cold and every part of my body hurt including my heart.  The walls, all around were only about two feet from where I sat.  This small space had walls made of large, round rocks.  Although they were round, they fit together perfectly, not letting any light through.  It was very dark, quiet, scary and lonely.  I couldn't hear anyone or anything from where I was.  It felt as though moving was just a waste of energy, so I saw myself sitting, motionless in the dark for what felt like months or even years.

As I opened myself up to what I was seeing in the dream, I acknowledged the pain and the cold and the loneliness.  I was able to embrace the experience even though it was sad and desperate.  I then saw myself, in this dank dungeon, lift my head.  My eyes scanned the dark stone walls from the floor to the ceiling.  What I saw was amazing.  A small window with light shining through.  I had not known it was even there.  It must have always been there, but I never looked up.  I had been consumed by what I was seeing and feeling from my limited perspective, on the floor.

This was a great revelation!  I'd like to say that the walls disappeared the light became brighter and surrounded me fully in that moment, but it didn't.  I knew the light was there and life was just waiting for me, but I also needed to learn how to stand again.  I needed to take deep breaths again.  My body needed to warm with the sunshine.  There was still a process I had to go through to make my way out of the dungeon and into life again.

As I move through my process of exploring and seeking the gifts that are hidden in the dungeon, I'm realizing my purpose and my place in life.  My friend, @Jackie Woodside touched on this today, when she spoke at @Unity on the River.  She said that no matter what our outer circumstances are, we all have treasures and talents to share with the world.  It's a matter of trusting and having faith in this and uncovering our gifts.

I have had many days like yesterday.  Days where the joy flows with ease and grace.  This is what I seek and know that as my joy flows, my gifts become more clear to me.  So on that rare occasion, when

I feel as though I'm standing on the dark side of the moon, all I need to do is look up!




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Thanks to Those Who are There When I'm not All There

Fibro fog is a funny fact of fibromyalgia.  It can feel anywhere between a light haze and heavy smog.  Sometimes I don't even realize that I'm experiencing brain fog during the light haze days.  Things are a little fuzzy, words don't come to mind very quickly and sometimes I find myself wandering about with no real destination (in the house, of course).  The heavy smog phase feels light a weight on my head and shoulders, my eyesight weakens, my hearing becomes very sensitive and communication is challenged.

Get togethers with my family can be interesting.  My Mom, my sister and I all experience brain fog.  If someone actually recorded holidays, it could be a sitcom.  We could all be in different stages of fog, but we are so happy to be together that we chat up a storm (as women do), and often don't make any sense to an onlooker.  I'm not even sure if we understand each other because comprehension is hindered too.  Since complete thoughts are a challenge, words are hard to come by so we tend to make up our own words.  My Mom is notorious for speaking backwards, switching either the order of words in a sentence or switching the first letters of consecutive words.  At this point, we don't even stop to point out the mix up, we just keep on gabbing.  It is nice to have close family who understand each other, or don't :)

The fibro fog causes me some confusion which makes me self conscious.  This is one of the reasons why social situations are a challenge when my brain is experiencing a fog.  I realize that there are many times when I am around people and they can't tell if a fog has rolled into my brain.  I present very well, when I need to, but it takes a great deal of effort.  I have one friend whom I contacted via email to let him know about a get-together we were having.  When he showed up, I said that I was really glad to see him and that I kept meaning to email him to let him know about the event.  He replied by telling me that he did get an email, with all the details of the event and I actually sent two, on two consecutive days.  He may have been able to tell I was having a week-long brain fog after that conversation.

I go through stages of being around friends, my spiritual community and calling those who are important to me and times when I hunker down, waiting for the fog to pass.  This past Winter was a tough one.  I spent a lot of time hibernating.  There were a few Sundays that I pushed myself to go to Unity on the River, but I didn't talk to many people.  Then there are times when my brain is clear, with thoughts and ideas flowing.  These are my most social and talkative times.  They're also my most productive times, because I can formulate plans and full thoughts and communicate my thoughts effectively.

I'm grateful for those people in my life who are always there for me.  During some of the more blinding fogs, I question if my friends or family are there for me.  I know this is just part of the illness and that if I could stretch my faith, and reach out to my friends during foggy times, they would remind me that they'll always be available when I need them.  I have to admit, FB has been a place where I can feel connected when my brain doesn't.  I can be as active or inactive on the social network as I need to be and find that everyone is still there when I return from fog island.

So to my family, my former work associates, my blog followers, my HS classmates, my spiritual community at Unity on the River and my FB friends, thank you for being there for me even when I'm not all there!

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Dear Sleep,

You sure are an illusive one.  And tricky too.  I appreciate visiting you each day with my fluffy blanket pulled to my chin and my cozy tempur pedic mattress gently holding me.  Between you and me, I'm fortunate to have the opportunity to visit you when my body needs the rest.  Our visits each evening are comforting and our brief hour or so get-togethers during the day are appreciated.

Often when I hunker in and close my eyes, it feels as though you arrive very quickly.  Sometimes my body aches and pains interrupt our time, but other than that, I feel relaxed and within your spell.  Can you tell me why when I do awake from your spell, after visiting for 8 or 9 hours, I still feel weak and tired?  Isn't this your area of expertise.  My understanding is that your role is to help my body and mind rejuvenate so I can visit Waking Time with energy and invigoration.

Lately, Waking Time has offered me some exciting and inspiring experiences that help distract me from the physical challenges and I've been energized by these prospects.  So, I apologize for not keeping our scheduled appointments; nightly at about 10pm.  There are just so many ideas flowing through me, I'm motivated to share them on this blog and the best time to do that is when the family has settled in for the evening.

I've also missed our daily nap time visits that my body craves at about 2pm, but last week, you were keeping me under your spell for three or four hours when we agreed on an hour at the most.  I do ask that you respect my wishes because balance between you and Waking Time are very important to my overall health.

Sleep, I do love you and have spent extra time with you, especially this past Winter.  We learned that the extra time was detrimental to my overall health and you kept tempting me and drawing me in.  This is very difficult for me.  Due to the Chronic Fatigue, Fibromyalgia and Depression, I'm going to have to set some clear limits.  I realize this will be an adjustment for you and I know that in time you'll see that I'm not abandoning you.

Tonight, I'm going in to do a sleep study.  I'll have more answers once the results come in and can make some clear decisions about you and me.  I realize that some of our challenges are not all your fault.  Sleep, you and I are fortunate to have someone close by to give us feedback on how the time we spend together goes.  Ray tells me that I grind my teeth pretty badly, I run in my sleep and sometimes kick him by accident.  Recently, he told me that I was swinging my arms in the air when I was under your spell.  I can only assume that my body was imagining doing laps in the pool.  I'm not sure if you've known about this unusual activity while we spend our time together, but I do take responsibility for those interruptions.

In this moment, I'm struggling to keep my eyes open.  My body needs you and I can feel your pull.  I would enjoy spending some time together this afternoon, but I've been advised against it in order to get the best results from the sleep study.

So, lets work together in the future.  No more pulling, tempting and drawing me in, during the day for hours on end.  I ask that you make yourself available for when I need you and we stick to a schedule as well as we can.  I'll visit between 9pm and 10pm and occasionally during the day for an hour.  I can even help us stay to the hour by setting a gentle alarm to remind us that we must part until the evening.

You're important to me and I know we can work this out.  We're a team and we need each other.  Thanks for all that you provide for my wellbeing and thanks for understanding.  I'll be closing my eyes and visiting again tonight.  Till then, my friend.