Posts Tagged ‘Conditions and Diseases’

It has been a long time dear friends….

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.

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(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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Well I asked for your help, and BOY did i ever get it!!  My last post was about Traveling with a chronic illness, and I asked for you to all share your experiences in hopes that I could create a ‘plan’ for myself and be able to put my fears to rest in regards to an upcoming trip….

Well ask and YE SHALL RECEIVE!!  I am now completely overwhelmed with all the FANTASTIC information that you passed along! THANK YOU!  You all shared some REALLY great advice!!!  I will thank you all personally when I get the chance 😉

So I have decided to compile ALL the info you sent and create a new blog post that might help others popping by Graceful Agony.  I hope it serves as a Chronic Survival Guide when traveling… Look for it this upcoming week.

Also, this week the current round of the Graceful Agony Blog Carnival will go live… The topic for this one is “A dream is a wish your heart makes“.  I apologize for being a tad behind on getting it published, but I can assure you it is worth waiting for!  The posts I have read are awesome!

November is proving to be a really busy month for me, and it is just getting busier and busier by the day.  My calendar is already full to the max!  If I am delayed in my correspondence with anyone, I apologize in advance!  I am trying to pace my way through the never-ending list of things to do, but unfortunately there are some things that just cannot be put on the back burner any longer… I am sure you all know how that is though!

Thanks again everyone for all the amazing support, encouragement, friendship, and also travel tips!!  I am already feeling a little less scared than I was, and a little more empowered.  It is not easy for me to ask for help, even when I need it.  It is something I am still working on 😉

May the end of your weekend be peaceful, and I hope you have a wonderful week!

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I know this is coming a little late, and to most of you is old news, so I apologize in advance…







I am honored to have been nominated and even more honored to be acknowledged by my fellow bloggers, my readers, and my peers.  Are there ever some amazing blogs out there!

In the Chronic Illness Category, The Seated View won 1st place

-and- The Best Health Blog went to Rolling Around in my Head.

I have provided the links for all of you if you are interested in checking them out!

Congratulations again to the both of them!

the other categories I was nominated in – Best Personal Blog, Best Overall Blog, and Best New Blog were


with really impressive bloggers!

You can see for yourself if you follow this link.

When I started blogging only TEN months ago, I never expected this journey would be so impactful,

nor did I think that the support and encouragement would be so overwhelming….

I honestly don’t know what I did without y’all… You mean the world to me.

So for all of you who stayed up late EVERY NIGHT to vote…

All of you who wrote me personal messages of encouragement…

All of you who keep coming back to my corner of the web every day…


I will keep doing what I do, if you keep doing what you do 😉


And that part is YOU…



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(just click on the links below)



YES, YOU!!!!

Are you on Facebook??? Please ask all of your friends to vote!!

Are you a member of a health related forum or message board?  Please ask them to come visit this site and vote!!

Do YOU have your own Blog?

Have you participated in the Graceful Agony Blog Carnival???

Feel FREE to make a blog post and include all the info here (copy and paste it if you want!)

Do you have friends or family that have been touched by a chronic illness or chronic pain?

Take this time to tell them how much you care – and let them know that I am representing the whole ‘Chronic’ Community in this Competition!

Do you have an email or twitter account??  Please forward this post!!

Forward it as many times as you’d like , get your friends to repost it and so on and so on…  😉

If you don’t believe that your vote won’t make a difference, please think again!

This has been an amazing opportunity for me, and I am honored to be included with some amazing bloggers!

My wish when I started Graceful Agony was to spread the word, and increase awareness on Chronic Illness and Chronic Pain.  I wanted to be able to light another person’s path through a life that is often misunderstood.  I wanted to leave my footprint, make friendships, and be a part of an amazingly supportive online community…. and THAT is the biggest gift in what I do here.  I get all of those things and so much more every day.

The rest is icing on the cake.





Thank you to everyone that has given me such amazing support and encouragement through this process.  Graceful Agony wouldn’t be a part of the world-wide web if it wasn’t for you.

You keep me inspired,

keep me coming back,

and keep me loving what I do…

In spite of Pain.


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Massage in Frankfurt, Germany

Image via Wikipedia

In the dance of ‘give and take’, if you are anything like me, you would rather lead than be led.  I admit it.  I am not a very good taker.  I think I have always been this way, I was programmed early that it was always better to give than to receive.  It is not something I ever begrudgingly did, I take great joy from giving!!  I am the one who will search for months for the perfect birthday gift for my Mom, or spend months making an end-of-the-year gift for my little dude’s teacher.  A desire to make others happy, combined with my perfectionist nature makes me one good giver…. but when the shoe is on the other foot I find it can be difficult.

When I became ill, someone apparently died and made me head-honcho and chief bottle-washer, as I decided then that it was my responsibility to carry the weight of the world on my own shoulders.  I don’t know about all of you, but for me, illness has come with a great deal of guilt.

If I can’t vacuum – I apologize.

If I can’t get out of bed – I apologize.

If it rains – I apologize.

If my second-cousin-twice-removed-has-a-friend-who-has-another-friend-who-has-a-dog-who-had-a-puppy-who-got-lost…. Somehow I feel the need to apologize for that too….

I think because I perceive that so many other people have to deal with my illness as well, I try to somehow protect and shelter them, and a part of that is trying to make their life better, and apologizing when my life sucks.

Does anyone relate?

That feeling pours over into almost every part of my life.  If I am late at responding to comments here – I feel guilty.  When my honey gets up and takes the little dude to school so I can sleep – I feel guilty.  When a friend offers to help me with my errands or drives me to a doctor’s appointment – I feel guilty.  When I am on the receiving end of most situations… well… You get the idea.


Fast Forward to last week.  Some friends of mine who are faithful readers here at Graceful Agony posted something on their Facebook that got my attention.  They had an unused Gift Certificate to a Salon and Spa that is about to expire, and apparently had little need for it.  So they asked if anyone wanted it – it would go to the highest bidder!

WELL!  It didn’t take me too long to jump on in!  I have been BARELY managing my pain for the last 3 months, and where I normally don’t have the resources for a lot of extra treatments, I thought that this was a chance for me to go for a massage for a little less money.

What I didn’t expect was for it to be free.

My beautiful friends got back to me right away and told me that they refused to take any money for it.  That somehow I deserved it.  They were GIVING me the gift certificate, no strings attached!


That is the sound of my heart falling into my stomach…..

I asked for them to take something… ANYTHING for it.  But they refused.  Not only did they want to give it to me, they also understood that I am not overly mobile and were willing to drop it off to me.


And my heart fell a little further… I was so amazed that someone would do something so kind for me…

And then the guilt set in….

I don’t deserve this.

I should be paying for this.

It is too extravagant….

That is what my illness would like me to believe.

My illness would like me to completely isolate myself from the rest of the world and not have those heart-connections with other people.  My illness wants me to feel bad all the time, whether there is reason to, or not.

I now have the gift certificate in my hands, and need to call today to book myself in for a massage.  And I reminded of a few things…..


Pain and Illness has taught me many things when I have stopped long enough to pay heed to the message.

I have amazing support and love out there.  I need to remember this feeling every time my pain makes me feel alone.

Just because I may not know my worth some days doesn’t mean others don’t either.  People don’t see me the way I see myself at times.  And their perspective is probably not as clouded as mine.

‘Just because’ might be the only reason someone else needs to be kind, and when you take away the opportunity for others to GIVE to you, you rob them of the wonderful feeling YOU get when you give to others.

The most valuable lesson for me is that I need to learn how to receive… Gracefully…

Thank you dear friends for not only treating me to a massage, but for teaching me a little more about myself.  I have learned many things this past week.

I guess THAT would make me the highest bidder. 😉

All my love to you both.


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When I woke up yesterday morning, it only took seconds for me to check in with myself that all familiar BURN followed by the throb… yep, it is going to be THAT kind of day…. again….

I don’t know what is harder, to be hit OUT OF THE BLUE with a nasty flare, or to live with one for a very LONG time… I think they both are horrible to tell you the truth.  That incapacitating FLASH of pain that takes your breath away vs. the 95th day that you wake up and the flare hasn’t ended….  It starts to wear on you, wear you down, take away dignity and self-respect (why does it do those things?  Is it a bad case of Fibro Guilt?  I will leave that for another post on another day…).  It just ends up being too much to deal with each and every day without reprieve.  That is normally how my life is… I will have 3 good days, and 6 months of pain-hell.

And yesterday was another one of those days…

I stumbled out of bed and limped to the kitchen to make myself a coffee, and take my meds… There is no waiting today, I thought to myself.. Today is my little dude’s birthday…. Please God don’t let my pain mess this up…

Of course my little dude was already up… he had been up since 3:15am!!  Mental Note:  Next year, do NOT let him open his present the night before… and don’t get him something that can actually OCCUPY 6 hours of his time in the middle of the night… get a football, or a bike or something… not a video game system, and especially not a hand-held video game system that he can smuggle anywhere he pleases at 3 in the morning…

Once I was up, I was all smiles… HAPPY BIRTHDAY LITTLE DUDE!! But inside was a completely different story… groan, grunt, sigh, blah…  oh and why is it I can only turn my neck to one side today and not to the other?? grunt, groan, wince…. I cannot let this ruin today…

I hopped in the shower, hoping above all hopes that my meds would kick in, and I would get relief… but that time didn’t come… out of the shower, hair and make-up, a birthday phone call from the Grandparents… and nothing.  NO RELIEF AT ALL.  I promised my son a birthday lunch wherever he wanted to go, and that was what I was going to do… I just needed to somehow put this crap aside for a few hours….

I forced myself to walk to the Restaurant as it was a beautiful day.  Holding hands with my little one, I could feel the throbbing start to take my breath away – but I kept trying to ignore that part…

As soon as we were seated, I started rifling through my purse for something… ANYTHING to take… a Tylenol, Motrin, something with codeine… hell if I had a Vitamin C I would have tried that just for the placebo effect!  I AM NOT GOING TO MAKE IT…. HELP….  PLEASE GO AWAY…. (Am I the only one who tries to make deals with my pain?  Yes, I speak to my pain… maybe I need help of another kind!).

And then a calm came over me… I sunk back into the booth-seat, dropped my shoulders, took a deep breath, and stopped fighting…. And instead of engaging my pain in conversation, I engaged my SON in conversation…. ‘So what has been the best part of your birthday so far dude?’… We sat and chatted for an hour and a half… casually ate our lunch… I even ordered a coffee and dessert!!  I normally don’t do that because I am way too sore by then, and just want to get up and get moving….

We held hands on the way home, taking the long way, walking through leaves and breathing in the warm Autumn air.  It felt really good.  My Pain was still VERY present, it still wanted to pick on me… but somehow I felt like I was in the driver’s seat… for the first time and a REALLY long time.

The rest of the day was lazy… My little dude went back to playing with his birthday present, and me, well I went back to being picked on by my pain…. but I am thankful for the short while that I could give my undivided attention to the greatest love of my life, and not the agony….

I woke up this morning with that all too familiar burn once again… followed by the burning… and funny enough I now can’t move my neck AT ALL…. Sigh…

But today as I am bullied by my pain, it will be somehow easier to take.  My pain didn’t bully my son yesterday… and that is what matters to me.

And if you are curious, THIS is what a Nintendo DSi Hangover looks like….



So this is what it looks like when a 9 year old stay up all night!!!


I swear he can sleep in ANY position!!!  Ha! Ha! Ha!

What a great way to end a wonderful day!!!

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