I know it has been a few months since you have seen me around these parts… and trust me… I missed all of you more than I can say… I want to be honest with all of you as to where I have been, and what I have been up to.  It isn’t easy for me to do that, as I have BIG expectations of myself… I took a bit of a fall, and it isn’t something I am all too proud of, but it is the truth… I am human… I fall some times… but at least I know, from experience, that I always find a way to pick myself back up, and brush myself off…. which is what I have done, and I am ready to move forward…

In December, if you will recall, my family got to go on an amazing trip!!  We had 8 days of ‘family time’ on a cruise ship in the middle of the ocean… it was a long time in the planning, and the rest couldn’t have come at a better time.  I was really feeling burned out from all of the treatment, meds, pain, treatment, more meds etc… I really needed that break!  I did quite well on holiday, or so I thought.  I think I was in more pain than I let on, but I was trying to ignore the fact that my pain followed me on our vacation… I didn’t want for my pain to be the centre of everyone’s attention…

A few days in, I realized that my joints were bothering me in a way that they hadn’t before.  My Dad and I had to find a Farmacia at our first port of call so I could pick up some tensor bandages for my ankles… I’ve NEVER had problems with my ankles, but I think what happened, was while on the ship, all my muscles in my legs were ‘engaging’ with every slight movement of the ship… something I never even thought of!!  And with that my nerve pain became worse… But I ignored it the best I could… in other words, I probably over did it, but I wasn’t even thinking in terms of ‘pacing’… Screw it… I am having a ‘NORMAL’ vacation…. I refused to think about my pain… and maybe I did myself a little bit of a disservice… I mean I went through 2 grueling travel days (there and back), sitting in an uncomfortable plane seat, endless walking on the ship and in port… I did a LOT that I normally don’t do.. I was really proud at the time, but I know I pushed myself as far as I could go as well…

I came home with a nasty case of vertigo, and a body that was REALLY needing a holiday AFTER our holiday.. but I didn’t stop… I tried to take some medication to help my vertigo, but it didn’t help… It made me REALLY dehydrated, and my pain spiked as a result… the nerve pain was out of control… but I had a million things to take care of.. My Dad had major neck surgery the week after we got back, and I had no more than 5 days to put up the Christmas Tree, Do ALL my Christmas shopping, unpack, get back into the swing of things, visit my Dad at the hospital, support my Mom through Dad’s surgery etc… I LITERALLY spent 2 Saturdays at the Mall for 8 hours each, and would COLLAPSE into the front seat of Tim’s car, shaking, because I had hauled 15 pounds of shopping bags around the mall… I had STRANGERS coming up to me asking me if they could carry my things for me… obviously I was very APPARENTLY over-doing it… but I had blinders on.. Once again, I ignored my pain.. I pushed myself WAY WAY TOO HARD… and I wasn’t giving myself a chance to recuperate…

Once Christmas was out-of-the-way, my body tried to get my attention.. and I ignored it.  My SI joints have been very unstable since I had my son.. For years I have had a problem with them, and nobody has been able to find a solution. New Year’s Eve I dislocated them somehow.. and I was in agony for all of January… My Nerve Pain got so bad I went from being in agony to feeling desperate.  I finally got some relief in February, only for it to be a short break.  2 weeks after that they dislocated again… and I hit a WALL…  It is the most pain I have been in for some years…

My Doctor and Pharmacist decided to try me on Topamax… it is an anti-epileptic drug that is used for migraines and nerve pain.  I was getting 3 or 4 migraines PER WEEK, I was in agony because of the instability in my hips and back, and my nerve pain was SEARING to the point it made it almost impossible to wear clothing, let alone leave the house… I was house bound for 3 months straight, other than the occasional Doctor’s appointment, or visit with my folks… I was desperate for relief, and ready to try anything!!

Within 24 hours of taking Topamax for the first time, I felt horribly ‘wonky’.. dizzy, nauseous, EVERYTHING tasted HORRIBLE… I thought to myself, I can do this!  I HAVE to get beyond the side-effects…

But I didn’t.  It just kept getting worse….

I would RAGE when the dog barked… I would CRY when I couldn’t open a jar of peanut butter… Tim would ask me a question and I would BARK at him.. and then I would CRY because I barked at him when I didn’t mean to… I felt completely out of control of my emotions…

A week in, in an instant, I felt like someone flicked off the lights… I remember it as clear as day… I had gone to bed the night before reasonably happy… and woke up the next day as someone else…

People around me didn’t know what to expect… My personality changed.. as did my outlook… my half-full glass was not only empty, it had fallen on the floor and smashed into a million pieces…

I spent 3 days straight crying my eyes out…. like the ugly-I-cannot-control-myself kind of cry… and it scared the hell out of me… I knew this feeling… I had felt this way before… I WAS REALLY DEPRESSED…

After some investigation, I realized that the Topamax could have triggered it, and I abruptly stopped taking it… and I had a really honest conversation, first with myself, and then with my honey… I needed to try to figure it out, be honest… get real with myself…. re-evaluate the way I was doing things…

I have been off the Topamax for a few weeks now, and I cannot TELL you how good I feel.. even though I still feel like crap (if that makes any sense?!).  I am still in a lot of pain, but I am also feeling more like MYSELF than I have in a long time.. The depression has lifted, I am feeling strong… I am listening to what my body needs.. I am again becoming a ‘friend’ to myself, working WITH me, not against myself…

I have learned a lot of lessons in the process… and I am grateful.

I am not yet managing my pain, and I won’t lie, it is shitty most days… but I am acknowledging that.  I am not ignoring it anymore.  My need to feel ‘normal’ put in a really bad place… So I am learning once again to accept myself, the way I am… I am not always Graceful… but I am a work in progress… it is about the journey not the destination….

I am happy to be back.. and I am grateful to still be a part of this community.  Thanks for never giving up on me, even when I had given up on myself….

And PLEASE…. BE CAREFUL WHEN STARTING NEW MEDICATION.. IF THIS CAN HELP ONE PERSON, THEN IT WAS WORTH IT… IF you start a new medication, and you find that your behavior, personality, or mood takes a sudden DROP.. GET IN TO SEE YOUR DOCTOR RIGHT AWAY!!  ASK FOR HELP!!  Side-effects are very much NORMAL… but there is a difference between experiencing nausea, tiredness, weight gain, dizziness etc. AND DEPRESSION!!  Depression isn’t an acceptable or tolerable side-effect!!  And NO amount of pain control is worth your sanity, your well-being OR your life!!

I am happy to be ‘back’, pain and all… and I am grateful to have learned more about myself in the process.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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there are many things that you don’t see…

You don’t see the millions of tears I have shed,

or the way my heart breaks each time my pain prevents me from

doing all the things that most take for granted.

You don’t see the many times I have had to cancel on my friends,

or eat my meals in bed.

When you see me smile,

you don’t see the intense pain that flows through my body,

every minute of every day -

the copious handfuls of pills I have taken,

or the way my pain breaks my Mom’s heart.

You don’t see the helplessness my Dad feels, or

the sad resignation my son has so maturely made

on days that I just can’t play with him the way he’d like me to….

You don’t see the midnight tears, and how my love wipes them away -

he hides his anger well… never angry at me but loathing the pain he cannot take away.

When you look at me you don’t see

how much courage it has taken me to get out of bed that day,

or how hard it is for me to make dinner for my family some nights,

or do the laundry,

and sneak in some errands before my body starts yelling for me

to stop.

You don’t see my freedom, or lack thereof…

the many times I’ve been disappointed,

the many times I’ve felt like I have let my family and friends down.

With that said, you also don’t see

how grateful I am,

to survive each day.

This is only a glance into a life with an Invisible Illness.

Some take life at face value,

those living with and

surviving

Chronic Pain

cannot.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

(This post is from last May 12th National Fibromyalgia Awareness Day)

Do you know what it is like to wake up one morning in agony and for that searing pain to never go away?

Do you know what it is like to have Doctors look at you like you are a crazy, drug-seeking, lazy person who just needs to “walk it off” when all you want to do is die?

Do you know what it is like to have everything robbed from you?

Do you know what it is like to lay in a glass coffin with your eyes open, and watch life go on without you – while you watch helplessly?

Do you know what it is like to have to grieve over the loss of yourself, and have to get to know a whole new you?

Do you know what it is like to have NO memory of being pain-free?

Do you know what it is like to lose relationships with loved ones because they just cannot see past your pain to find your heart any longer?

Do you know what it is like to never be able to find comfort in your own skin….. Never be able to let out a sigh of relief after a long day…. Never be able to get away from your worst enemy….. Never be able to be held by someone you love without it hurting??

Do you wake up in the morning and automatically put your feet on the floor without having to wonder if your legs will support you through the day?

Do you complain about rush-hour traffic, not having to think about how the extra 10 minutes in the car will affect your health for the rest of the day?

Do you walk by a stranger on the sidewalk and secretly wish you were them?

Do you know what it is like to be handed a life-sentence – yet you committed no crime?

Do you know what it is like to have to muster up every ounce of your courage to go to the grocery store…. a friend’s house… or even to the end of your walkway to collect the mail?

Do you know what it is like to have to say “No” over and over again – and have your heart-break each time because all you really want to do is say “Yes”

Do you know what it is like to live in a world that simply isn’t made for people like you?

I do…. This is my life… and it is the life of between 3-6 percent of the world’s population.  It is the life of anyone who suffers from Fibromyalgia, Chronic Fatigue Syndrome, and ME (Myalgic Encephalomyelitis).  It is a life of Severe Chronic Pain…. 24 hours a day…. 7 days a week….. 365 days a year.  It doesn’t go away on your birthday, anniversary, Christmas, New Year’s…. It doesn’t go away when you have had enough… when you are sick… when you are angry…. when you are sad…. It is constant and mind-blowing pain…. and there is NO cure.

We all are different – We have different dreams, different families, different lives… but the one thing we all have in common is that we fight for our lives each and every day, and fight to be understood.

We are human, we laugh, live, love, cry… just like everyone else… Only our journey through life is a little more complicated than some.

TODAY is the National Fibromyalgia/Chronic Fatigue Syndrome/ME Awareness Day – A VERY important day to all who suffer from these diseases… Please HELP US SPREAD THE WORD THAT WE CAN FIND A CURE!!!!

I urge you today to share this link with EVERYONE in your life… Wear PURPLE in Support of those who suffer….. Find another Fibro blog online, and leave a comment of support and encouragement, Call someone you know who is suffering, and let them know you are in their corner and will do anything you can to help them…. DO SOMETHING…. ANYTHING…. we need to spread the word and build a community of compassion… Pledge to be a part of the solution for people like me who live with severe pain every single day…..

Do you know what it is like??

If you do I honor you today, and want you to know that you are NOT alone….. I am here – waiting to ‘meet’ another member of this amazing community of people….

If by chance you don’t know what it is like, I urge you to close your eyes for a few moments and imagine what it might be like if you were to wake up one morning and have your like completely changed…..

When we try to understand with an open heart – we have the ability to break down walls.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen.  Please click on the link provided to return to the site of origin

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Cover via Amazon

HI EVERYONE!!

Has it really been THAT long since I blogged last?!?  *hangs head in shame* There is no excuse for my absence other than life has gotten in the way….  I have been having a hard time adjusting to a medication change, and it feels like I have been stuck in a void this past few weeks… like I woke up this morning and we went from Christmas to nearly Valentine’s Day in a blink of an eye… my apologies followers… I am a bad blogger.

I wanted to share something FUN with all of you!  We focus on our pain more hours than most will ever know… more hours than time can measure really, don’t we?

I wanted to start something productive for all of us, something we can do collectively BUT on our own as well… something that doesn’t necessarily have to focus on our pain…

So I have started our own Graceful Agony Book Club!!

No, I am no Oprah, and I don’t think my selections will sell zillions just because I have put the Graceful Agony stamp of approval on them   But nevertheless I think it is something that could lead us on an adventure!

The FIRST Graceful Agony Book Club will start THIS Saturday, Feb 5th.  And the book I have chosen is

- The Year of Magical Thinking by Joan Didion-

Don’t worry about having to run out right this second and pick up the book because you will have lots of time to read the first few chapters… I will set a certain number of chapters to read every few weeks, and then we can ‘meet’ and discuss feelings, thoughts, book characters etc… and then you will be left to read a few more chapters and so on…

So are you in?!?  Would you like to participate?  If you are unable to this round, no worries, if it goes as planned  we will keep this going!!

If you are a part of the Graceful Agony family, either a chronic illness sufferer OR you love someone who suffers from pain and illness YOU ARE INVITED TO JOIN!!  Please leave a comment for me so I knowing you are planning to join in AND if you are NOT a part of the Graceful Agony Facebook group, it would be GREAT for you to join, as many discussions will go on over there as well   It is a private group, so let me know if you need an invite to join!!

So make plans to pick up the book, have it delivered, or download a digital copy, andI will meet you back here on Feb 5th to get the ball rolling!!

Books let us into their souls and lay open to us the secrets of our own.  ~William Hazlitt

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It was a week ago that I threw my lower back out, and unfortunately not much has changed… I am getting through one minute at a time, looking for distraction, giving into my pain, fighting through it, sitting with it, ignoring it, getting mad at it… doing whatever I can in the moment to get myself through….

There has been some downfall after my joints gave up… subsequent muscle spasms, over-compensating, referred pain.. all the nasty stuff that comes with it… so what started out as back and hip involvement has turned into a really heavy all-over body pain… sleep is hard to come by, food only serves a purpose – to add something to my belly other than the caustic meds that are swirling around in there… and the smile on my face hurts… meaning… it isn’t a joyful smile, more a grimace with the corners of my lips turned toward the sky… I am trying people, I am really trying…..

I have a Doctor’s appt. this coming Monday, and I am already dreading it…  I know it is coming… I will be told again that the ‘professionals’ think I am depressed… and I am NOT… Do they understand that there is a difference between feeling desperate when the pain rises, and having uncontrolled emotion that has an effect on everything you say and do in your daily life?  To me, there is a HUGE difference!

You know, the normal questions they ask to try to gauge how depressed you are….

Are you sleeping?

Have your eating habits changed?

Are you finding that enjoyable experiences in life are dulled or unappreciated?

Um… HELLO?  DO YOU KNOW WHAT IT IS LIKE LIVING WITH EXCRUCIATING PAIN DAY IN AND DAY OUT?

Yes, my sleeping patterns have changed, only because when I crawl into bed at night the searing hot pain won’t let me turn off…

Yes, my eating habits have changed, because when it is hard to breathe, and the pain immobilizes you, it tends to take the enjoyment away from making homemade chili, with fresh-baked buns, amd a lemon meringue pie for dessert…

Am I finding that enjoyment and pride I should be feeling when my son brings home a 100% on his science test, or do I laugh when I am watching that funny new sitcom?

Well obviously NOT… but it isn’t because I am depressed!!  It is because my pain is all-encompassing!

Dinner tastes like pain

Bread baking in the oven smells like pain

The smile on my son’s face is beautiful, but the ‘pain’ glasses I see everything through blurs things a little…

My heart can SOAR with pride, but my body has a different visceral reaction, and I can’t control that.

Holding hands with my love feels great in my heart.. it however hurts my skin…

And I would be over the edge JOYFUL spending an hour in my jetted tub with my wonderful lavender bath salts… if it was by CHOICE that I was in there… if I was able to lay back and read in the tub with a glass of wine, instead of holding the edge of the tub white-knuckled, and rocking back and forth because it hurts too much to sit on hard porcelain…

Depression is a serious illness, it shouldn’t be taken lightly, and I commend EVERYONE who admits to struggling with it, and getting proper medical help… God knows I have been there before… IF you are there right now, I urge you to let someone IN and get help… PLEASE… Depressions isn’t something to mess around with…

What I am feeling right now is very different….

The difference is.. If my pain lightened JUST a little at this VERY moment.. If  I could flip a switch and INSTANTLY come down from a 9/10 to a 7/10 I would be the happiest girl on the planet…. IN AN INSTANT!!

Depression doesn’t work that way… It takes weeks, months and years of multi-modal treatment to be able to feel happiness and joy when you are really suffering from depression…  The road can be long… It has been for me anyhow.

All I need is a 15 minute break from this nasty winded feeling that goes along with intense pain…

I have a beautiful family, amazingly supportive parents… a man who is in LOVE with ME… the real me…

I have a precocious and brilliant and compassionate young boy, and he is my world…

I have a creative mind, a big heart, and I love myself more than I have ever done in my life.. I accept ME.. and it has been a long process getting there… 36 years to be exact…  I accept the ME that lives in Chronic Pain each and every day… and I try daily to make the very most of the life I have been given.

I have a network of inspiring and beautiful friends in my life, and I ‘belong’…. THAT is the most wonderful feeling.

So no, I am not depressed… I can see all my blessings…

There is just a wall of pain up between me and all of that…

Pain is the issue at the moment… Depression is not.

I just have to convince ‘them’ of that.

I want TREATMENT for my PAIN… I am not interested in taking a medication I don’t need.

I AM FRUSTRATED… and I am ALLOWED TO BE…

Wouldn’t ANYONE feel that way after 168 days of unrelenting pain? 7 days in agony and counting…. (Okay so it has been more like YEARS than days.. but I mean this past ‘flare’)

I am STILL blessed… I’d just like to get back to embracing those blessings…

I have a bear hug bubbling up inside me… I just need to be well enough to give it away.

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen. Please click on the link provided to return to the site of origin

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Some incredible things happened in the past year, but I was knocked down more than a few times as well, and for that I was relieved to end the year and start anew…

It was a perfect dichotomy I guess… You can’t have one without the other, or you can’t appreciate the good without the bad… or whatever cliché is used to make one feel better….

I had the intention of writing about all the wonderful things that transpired over the past year, and a wonderfully cheerful look at the year ahead… but since we rang in the New Year, I can honestly say I haven’t had the head space to be ‘cheerful’… I will be completely frank… So far 2011 has been rough… really rough…  It has sucked… and I know I am not the only one who is feeling this way….

I was having a hard time managing my health before we went on our holiday the beginning of December… it was SUCH a great trip, and a VERY needed break… but it has been a solid month of pain and frustration since we have been back.

Who am I kidding?  It has been 10 months of solid pain without much reprieve, and I am REALLY feeling beat up and worn down.

When I first was diagnosed with multiple illnesses that lead to a life of severe chronic pain, I felt like something was being overlooked.. Yes, I have a very severe case of Fibromyalgia, with secondary neuropathy… Yes, I have Endometriosis with adhesions that haven’t been removed… Yes, I have other varied illnesses, disorders, or defects that lead to the intense pain I feel everyday… but from the VERY beginning, I have asked to have other things addressed… namely, my back and hips…

It took 26 months (18 of which I was misdiagnosed, and another 10 months on a waiting list) to have a lower back CT scan and x-rays done… and I was so hopeful that they would find a reason for my crippling pain which has caused me to walk with a cane at times the past 4 years… it showed NOTHING… and I was devastated…

Through the last 3 years of intense treatment and therapy, I have asked over and over for my back issues to be addressed more aggressively… I have been in physio many times, and from that and the support I have had by a  wonderful Chiropractor, I knew that I had developed some MAJOR ligament problems, but I have never been given a solution, or at least a proper way of dealing with it….

“Jolene, you have Fibromyalgia, which makes you hyper sensitive to pain that might not  necessarily be have a valid SOURCE.” I have been told many times…

BUT THERE IS SOMETHING ELSE GOING ON!!!!!

If I as much as isolate and tighten my glutes, I can completely dislocate my SI joints, THAT is how unstable my lower back is… I cannot do Kegal Exercises for my pain because that is enough to dislocate my SI joints as well…THAT is not Fibromyalgia…

When I can look into a mirror, and SEE a big sack of swelling over my tail bone… there is a VERY real source… you do NOT get inflammation just because….THAT is NOT Fibromyalgia…

When I put my arms over my head and lean over to do a gentle side stretch my hip rolls and POPS out of its socket… THAT is NOT Fibromyalgia….

When I can’t put any weight on my left leg for days, and all I can do is either tuck myself into the fetal position, or rock back and forth to distract myself from the 10-inch knife that is going right through my spine, there is something WRONG….

When my back becomes so tight that I have no choice but to over-compensate and end up pulling all the muscles in my groin and butt… that is NOT just being sensitive to pain.. there is something STRUCTURALLY WRONG WITH ME!!!

If I go a month without this intense back pain I am feeling like the luckiest woman on earth….  Sometimes I go TWO months without it… but when I feel the crack or pop I know in that instant I am screwed… and it takes days and sometimes weeks to recover… it is the kind of pain that isn’t touched by ANY medication, and the only ‘cure’ is to get it to POP and CRACK back into place… THAT IS NOT FIBROMYALGIA….

As some of you know my Dad had spinal surgery before Christmas, and he has been in a great deal of pain since… It has been a hard recovery for him, and he still has a way to go… If we can somehow make it easier on him, we will….

As a way for him to stay connected with his online illness community, as well as for him to stay comfortable, and avoid frustration, I talked him into getting a laptop.  I would be lost without mine, AND his computer had a lot of issues, and I believed he had to wipe out his hard drive anyhow…  It wasn’t worth putting in the time, money or frustration into it anymore….

This past Tuesday he had asked for me and my honey to come over and help him disassemble his PC, and drive him to the store so he could deal with transferring data to his new laptop.. And we were more than happy to help. I made the mistake of leaning over to pick up his PC tower and both heard and felt the CRACK…

I knew I was in trouble…

We barely made it home….

And I have been stuck on the couch, writhing in pain ever since…..

Ice, heat, meds, stretching, massage, baths, back brace… nothing is helping….

What a fantastic way to start the New Year!!!

So yes, it has been a rough start…. my nerves are frazzled, and they are in hyperdrive… every minute or so I get a wave of PAINFUL “Goosebumps” that make me want to crawl out of my skin…. My stomach is churning… and my get up and go, got up and left….

As my honey gently massaged my back last night I let out some hot frustrated tears, while he silently supported me and hoped to somehow make it better… HE can’t see me like this… My Mom and Dad can’t either… it creates this helpless feeling in everyone, including me.. I don’t know how to make it better…

THIS IS NOT FIBROMYALGIA!!!!!!

One thing for sure… I am getting down to the bottom of this.. I am not being placated anymore… I will not let them prescribe me yet another medication in the hopes that my body will become LESS sensitive to pain… THAT is not the issue, and I know it.  I just need to be heard… I have enough pain to deal with every day, I don’t need this…

Angry?  Maybe…

Frustrated?  Absolutely…

Have I had it?  In a heartbeat…

Will I keep on keeping on?  There isn’t a doubt…

I am not letting the system fail me again… not this time…  I am not letting them convince me I am just depressed, or that I need to exercise, or that somehow Vitamin D will make me feel better…

It is time to get down to the bottom of this…

Thanks for listening to me rant my friends… That wonderfully hopeful post for 2011 is coming… just not today….

**If you are reading this anywhere other than www.gracefulagony.wordpress.com it is because this post has been stolen. Please click on the link provided to return to the site of origin

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HAPPY BIRTHDAY TO YOU!!!

HAPPY BIIIIRRRRTTHHHDDDAAAYYY

GRACEFUL AGONY!!!!

HAPPY BIRTHDAY TO YOU!!!!

CAN YOU BELIEVE GRACEFUL AGONY IS ONE YEAR OLD TODAY??

365 days ago, I made the commitment to myself, and to whomever wanted to take this journey with me that I would share my life openly, honestly, and completely, in hopes that I could somehow make my ‘Chronic’ life purposeful.

I nervously wrote my first post, and published it… and waited… I didn’t know if my words would be heard by ANYONE…

I wrote my second post… and my third… and the craziest thing happened!  PEOPLE FOUND MY BLOG!!  People were actually reading my words!!!

I very quickly realized I wasn’t the only one sitting ‘alone’ with my pain… There were so MANY people feeling the things I felt, experiencing the things I did, and crying the same frustrated tears I cried.

I FINALLY found a place where I was completely understood.  And it was the most overwhelming feeling I have ever had.  I cry at this moment as I look back upon this past year and reflect on how quickly my ‘heart’ changed, how my perception of my pain has gone through a metamorphosis,  and how the courage of others inspired me to find my own strength….

Shortly after starting this blog, I also started a facebook-based support group… and I don’t honestly know HOW, but people started to join… 15 members… 20 members… 30 members… People started to open up and share openly about their OWN lives with Chronic Illness and pain… And I made heart-to-heart connections with strangers from across the world who were suffering the same way I had been for years.  Who KNEW that these ‘strangers’ would end up being my dearest friends, and an integral part of my every day life. You all know who you are, and my heartfelt appreciation, and my utmost respect goes out to all of you… Thank you for making our family what it has become this past year… it is ALL because of you!!

Much “LIFE” happened in between writing posts, making friends, and sharing experiences this past year….

Some of us experienced great loss and began personal journey’s of grief…

Some of us found love…

Some of us lost it…

Some of us found hope,

and others needed the hope and strength that only OUR friendship could bring…

But through all of it, the one thing I know for sure is that we all got to ‘know’ ourselves in a way we hadn’t, all of us played a ‘role’ in our own as well as some one else’s healing.. and we all made a difference in the lives of the people we love.  WE BECAME SISTERS… united in something much stronger than illness and pain.

365 days ago I started writing as a way to reach out to others, and the most miraculous thing happened…. I ended up reaching out to myself…. I started a journey of my own healing, found strength I never knew I had, and found happiness in a way I never knew was possible while living in agony.

Because, in sharing my life with others, I found love, hope, forgiveness, patience, and tolerance for so many other people, and those people mirrored myself… By seeing my reflection in all of you, I found me….

It has been one crazy ride, hasn’t it?

290 posts

21,600+ hits

210 support group members

Invaluable lessons,

and forever friends….

THAT is how I measure this past year…..

Take a minute to reflect on the last year for YOU… and all the blessings, wonders, lessons, and love it has brought into your life… THAT my friends, is THE REASON…

Thank you so very much for following my journey this past year…

Thank you for reaching out and becoming a part of my life…

Thank you for your friendship,

Your support,

Your encouragement,

Your tears,

And your love.

AND HAPPY BIRTHDAY TO ALL OF YOU!!!

THIS IS YOUR CELEBRATION!!!!!!!

I hope the year ahead brings peace, healing, hope, and above all, a lot more love and friendship across the web, and in our homes and hearts.

NOW…….

LET’S PARTY!!!!!!

DOES ANYONE WANT CAKE??

QUICK, MAKE A WISH AS I BLOW OUT THE CANDLES!!!

XOXOXOXOXO

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The Christmas tree is trimmed…. Snow is on the ground…. The presents are wrapped (well most of them anyhow)… The Champagne and OJ are in the fridge…

And the Spirit of Christmas is beginning to fill my home…

My little dude is losing sleep over what EXACTLY is under the tree this year.  He keeps asking for clues, trying to get me to slip up and tell him “just one thing”.  He is wanting to open the Christmas crackers, and he wants to know if he is REALLY GOOD, can he open just ONE present on Christmas Eve…

His frenetic energy is tangible, I feel it in my gut, and I get goose bumps just thinking about watching him on Christmas Morn. THAT is my gift each and every year – Being able to experience the wonderment of the season through his eyes is the biggest present I could receive, wrapped up in love with a bow on the top.

My usual Christmas wish is for my son, and my family to have a holiday filled with joy, love, yummy food, and smiles… and each year I am never disappointed… each year my wish is granted.  What more could I ask for?

THIS YEAR my Christmas wish is a little different…. It is my wish for ALL of you, family included….

I wish for you to have ‘enough’… not excess, not too little, but just ‘enough’.

Enough hope to get you through the hard days…

Enough love to fill your heart…

Enough wisdom to help others…

Enough clarity to understand the difference you make in the lives of others…

Enough healing to restore quality of life…

Enough friendship to never feel alone…

Enough understanding to never judge…

Enough silence to reflect on blessings…

Enough patience to be gentle with yourself…

This holiday season I wish for all of you to have ‘Enough’.

Merry Christmas to all of my Graceful Agony family.  I will be carrying you all in my heart over this holiday season.

And thank you for the gifts you give to me each and every day.

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We made our way to the 4th Floor – The Upper Promenade Deck, and very happily found our cabins… 3 in a row on the Starboard side of the ship.

If you have ever been on a cruise ship, you’ll know that the cabins are cozy… There are 2 beds convertible to a queen-size bed, bath & shower, sitting area which has a hide-a-bed couch, private verandah, floor-to-ceiling windows.Approximately 254 square feet including verandah.  They aren’t huge by any means, but if they are organized correctly, they make a comfortable home away from home.

I had to share the next picture because it makes me LAUGH every time I see it!  This is Tim standing in the shower in the our bathroom.  When I say ‘cozy’, by my 5’3 standards it truly is.  For Tim, who is over a foot taller than I am, ‘cozy’ takes on a whole new meaning!  LOL!

Our luggage wasn’t in our cabin when we first arrived, but within minutes there was a knock on the door, and our suitcases showed up, one by one.  We buzzed about the 3 cabins, comparing them, and the boys went out on the balcony to sit in the sun while I started unpacking and organizing the closets…

I couldn’t WAIT to show Tim the rest of the ship, and explore every nook and cranny!  But before that, we had to take part in the Muster Drill.  It is a safety drill that by law you have to participate in at the beginning of every cruise.   We went and found our Lifeboat, #11, and then we were off and running!

Michelle, our wonderful travel agent, surprised us with a few extra goodies, including a special dinner to start off our cruise, in the Pinnacle Grill.  On a cruise you have different options for eating meals.  If you want a casual eat-anytime meal, you can go to the Lido deck and eat at the buffet, you can also eat in the dining room for more formal service, but the cream of the crop is the private restaurant known as The Pinnacle.  I REALLY wanted to experience eating there, so I was both pleasantly surprised AND excited that we would be eating our FIRST dinner there…. We cleaned ourselves up, went on deck to see the ship pull away from the terminal….

Bon Voyage!!

And then we headed down for dinner….

The Pinnacle is only something you can describe as opulent…. It has over-the-top decor, but it isn’t ‘tacky’.  It is very well done, down to the silver chairs and the artwork, it is something that would be considered ostentatious anywhere else…I thought it was beautiful.

I soon realized that I had NO self-control after looking at the Menu… It all sounded SO yummy!  It was so hard to decide!!

I started with an Amuse Bouche, a tasty morsel to wake up my taste buds!  It was a sea scallop with a pumpkin puree… unusual, but really good!! Next I had the lobster bisque… and I thought I had died and gone to heaven… it was SOOOOO good!  Tim agreed, as he ordered that too, but my little dude enjoyed a Prawn Cocktail, and the prawns were as big as my fist!!

Tim and I thought we would pace ourselves and SHARE an order of crab cakes, but we a bite in we wished we had ordered them for each of us.. they were decadent with a crispy panko breading, with sweet and rich crab inside, they were perfect!  Oh how I wish I was still on the ship…

For dinner I had the “Land and Sea” – or in other words Steak and Shrimp.  I choose the creamed spinach and rice for my sides, but I had to try my sister’s Lobster Mac and Cheese… It was the richest dish on the table, much too rich for my tummy, but it was delicious!

Tim had the Steak Dianne, and it was so much fun to see it flambeed table-side!  I wish I had taken pictures!

And to end off a WONDERFUL MEAL, I chose the Baked Alaska with Cherry Garcia Ice Cream and Flambeed Cherry Sauce… SOOO SWEET… SOOOOO RICH… and TOOOO MUCH… I only ate half my dessert, and washed it all down with a decaf Cappuccino.

I did make a mental note that if I was lucky enough to go to the Pinnacle again, to order the Creme Brulee… Tim and my Dad both  had it, and it looked incredible..  It has a perfect sugary crust, and was served in 3 different flavors….Oh Lord… I resigned myself to taking home a few pounds extra…

All of us were really tired after a very long day, and we were all STUFFED.  We said Goodnight to my parents, and after a chilly walk on the lido deck, we also retired to our cabin.  The beds were turned down, chocolates were left on our pillow (like we needed any MORE calories), and with 2 days at sea, we knew we didn’t have to set a wake-up call…. ahhhhh…. I hoped to have a LONG and restful sleep.

I was so incredibly sore, but so very happy to share these memories with my family.

Buenos Noches everyone…..

To Be continued…

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My pain woke me up before my alarm did… another really crappy sleep… I cannot believe I am still moving to tell you the truth, it must be the adrenaline…

I woke up before my boys did, and IMMEDIATELY made myself a cup of Starbucks coffee, which was complimentary in our room.  I opened the drapes and went out onto our balcony… and there she was in all of her glory…

The MS. Oosterdam, all 936 Feet of her, and weighing in at close to 83,000 gross tonnes, she is regal and definitely a site to see!!  For those who aren’t familiar, she is owned and operated by Holland America Line, and was christened in 2003 by Her Dutch Royal Highness, Princess Margriet of the Netherlands.  It is an absolutely beautiful ship, and awesome in the truest sense of the word… It is hard NOT to be in AWE of her…

To give you a little bit of personal background, my first cruise when I was 6-year-old.  I have been absolutely blessed in my life to have been able to travel.  It was, and still remains a BIG part of my education.  While back home my elementary school friends were comparing name-brand clothes such as Benetton (the United Colors of) and Esprit, I was experiencing a taste of 3rd world countries, and watching children my own age beg on the streets.  It is something that has stuck with me my whole life.

3 years ago my Dad was diagnosed with a terminal form of cancer.  It shook my family to its very core.  When hospital staff come into your private room and suggest you get your affairs in order, it is a clear indication of what your prognosis is… It was terrifying.

Because it has been years since we went on a family vacation, my Dad decided to book us ALL on a trip.  He very PURPOSEFULLY booked it a year in advance – it gave him something to look forward to, and something to fight for… and fight he did!!  We celebrated a YEAR after his diagnosis on the Oosterdam on a 7-day Mexican Riviera Cruise… and TWO YEARS later we are doing it again…  A MIRACLE!!!!!

Because my honey had never been on a cruise, it was SO exciting for me to be able to share every MOMENT with him!  I couldn’t wait until he opened his eyes, so he could take a first glance at the ship what we’d call home for the next week!!

After the boys were both up and at ‘em, we got our luggage read to be picked up and taken to the ship, and made our way downstairs to meet up with the rest of my family.  We snacked on Banana Bread and Lemon Loaf, has another coffee, and toured the hotel once again before we got picked up by a shuttle which took us to the cruise terminal.

My honey was so in awe of the process, and my little dude was a CRAZY monkey!!  The excitement was tangible… You could feel, smell, and almost TASTE it….

The process of ‘checking-in’ was MUCH easier than I thought it would be, and before we knew it we were being called to board the ship!

(Insert Angels singing here… “AAAAhhhhhhhh” LOL)

We boarded, and after a slight emergency (Mom lost her purse!!  It has all of her ID in it, and we all panicked and stopped breathing the moment she realized it was gone.  She had to get off the ship and go back to the cruise terminal while we waited, and a million thoughts went through our heads.. An ANGEL turned in my Mom’s purse the MOMENT they saw it!  There are still wonderful people on this earth!!  THANK YOU to whomever it was who turned it in!!) we headed to the dining room for a special ‘Welcome Aboard” Luncheon.  At this point most of the people getting on the ship would go to The Lido Restaurant, an AMAZING buffet-style cafe.  Because my parents are seasoned cruisers, we got to sit down in the dining room and take it all in….

We began our meal with an Artisan Salumi plate, an appetizer consisting of cured meats, and freshly baked bread with the creamiest butter ever!!

We then had a cup of Cream of Broccoli Soup finished with toasted pine nuts.

For lunch I had the Mango Chicken Salad, while my boys decided on a less than standard cheese burger (even the burgers are First Class!)

And for dessert, a Fruit tartlette with creamy custard…. And just so you know, my family was SHOCKED that I didn’t pick the chocolate mousse!!

After our bellies were full, and we had a chance to process the day so far, we headed to deck 4 to find our cabins!!!!

Stayed Tuned for the Second part of ALL ABOARD!!! Dec 4th

To Be continued…

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