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Posts Tagged ‘Medicine’

 

I have learned that this journey through chronic pain and illness is a bumpy one.  It isn’t a process where you learn something, and then you never have to address that part again…. As time goes by and my illness evolves, so does the process…. and I find myself having to re-address things over and over again while trying to look at things from a different perspective each time.  What have I missed?  What did I not learn the first time?  Has my illness progressed since the last time I had to face this particular issue?  Have I matured since the last time I faced this particular issue, so maybe there is something different to learn this time?……. It sure isn’t like riding a bike.  You don’t get back on and just know how to pedal…. it is different every time.

These past few years have been really difficult for me, and my pain has slowly gotten worse and worse.  Every medication I have been on has either stopped working, or just never worked to begin with.  Emotionally, I have gained many tools to deal with living this life, but physically a body can only take so much….  I was really fighting that point, and thinking that I could take it all on, but the proof is in the pudding so to speak.  I have back-slid.  And requiring extra help was something I didn’t think I would have to think about…. until now….

When I first became really ill, it changed life completely.  And not just mine, it effected my whole family.  After being misdiagnosed for close to 2 years, having exploratory surgical procedures, being bed ridden, I finally got into a place where I live called the Chronic Pain Centre.  It is a government-funded, multimodal clinic for people who suffer from severe pain.  The day I walked into the clinic for the first time changed my life.  I walked in as a desperate girl so badly wanting to believe there was a ‘cure’ for me, and I walked out knowing that I may have to deal with this for the rest of my life.  It was completely overwhelming…..

I ended up being a patient there for 3 years.  I saw pain specialists, physiotherapists, kinisiologists.  I saw nutritionists, worked with the pharmacists, saw a psychotherapists, and worked hard for those 3 years to understand every aspect of illness.  It was a full-time job, between the ‘group’ lectures I attended, sleep seminars, reading, weekly psychologist appointments, weekly physiotherapy appointments, and that doesn’t even include the appointments I had with my Doctors…..  It was a HUGE commitment.  In some ways it has been the biggest commitment I have ever made to myself.

I crawled…. and then I toddled…. and when I cold finally walk on my own, I ‘graduated’ from the program and thought I was on my way to living in SPITE of all of this…. If this was the hand I was dealt, I thought I had found as much acceptance as I ever would, and I was relieved and excited to move from that program and to live life on my own terms…..

That was close to 4 years ago, and after much time, suffering, frustration, and failed attempts to manage this on my own, I had a heart to heart conversation with my Doctor, and she has referred me BACK to the Chronic Pain Centre.  And I honestly don’t know how to feel about it….

Part of my is relieved, as I know I can get help there that I cannot get on my own.  I won’t have to worry about the expense of therapy, and the impact it can have financially on my family.  I am in a MUCH  better place emotionally now than I was when I first went through the program, which leaves me to believe that I am more ‘ready’ this time around….  But I am also really sad to find myself back at the starting gate.  I was hoping I would never have to go back there.  I was hoping that SOMETHING I had done or tried in the last 4 years could have been the answer… my answer… and the truth is, no matter how much it hurts to say it, I just haven’t found my answer yet.

It is going to be a big commitment to make, and no doubt it will impact my family again… but I hope that the positives will outweigh the negatives.  I hope that maybe, this time, they have more answers, more solutions, and more ways to help me ‘deal’ along the way…..

Is it a step forward or two steps back to have to enter this program as a patient again?  I am not sure how to answer it.  I guess it depends on what day you ask me that question.  I feel really conflicted….

All I know is that I don’t want to have to live like this forever.  And I am not going to stop fighting….

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When you look at me,

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

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To my Doctors office that is… 4 appointments in four weeks starting today…. Sometimes keeping my appointments feels like a full-time job.

Maybe I should just move in? *note my sarcasm….

I just don’t feel like I am getting anywhere lately.  It is two steps forward, two steps back… two steps forward, two steps back…. I am doing an intimate dance with my pain everyday.  It pushes me, I push back… and like I tell my little dude all the time – someone has to be the bigger person and end a bad situation.  If he was having an argument with one of his classmates, I would tell him that it will go on forever unless someone ends the cycle… Funny that I cannot take my own advice at times… I need to end this vicious cycle I have gotten into with my pain, but I get to the point where I don’t know what else to do BUT react every time the pain picks on me.. it pushes me… I push back…

My meds haven’t been working for a while now, and I have been taking over-the-counter meds in between all my  other meds to try to take the edge off… and those don’t work either.  I am not going to start playing pharmacist at home, so I am going to stop taking drugs of the over-the-counter variety and try to trust in the process… which is really hard to do when you are in desperate pain.

My Doctor is compassionate as she speaks with me, but I don’t know if she truly understands what it is like to live this life.  How can she?

My Pharmacist is sympathetic when he talks to me, even when I raise my voice and form clenched fists in frustration.  He truly wants to help, and I am sure he gets frustrated when he can’t.

‘BUT THIS IS CLEARLY NOT WORKING!’ I am trying to vocalize through tears… this pain is too much.. and I am tired.. and I need relief… And NO, I am not depressed, I am ANGRY… I do my best to live the most balanced life I can, but I am human.  I accept this is my life, but can’t I have moments of resentment and rage?  Isn’t that better than being complacent and unaffected?  At least I am letting myself FEEL… and then when the cork is out, and all the contents spilled.. I will pick up and start again.

Sometimes I wish I could just move right in to my Doctor’s office, so she could get a better picture as to what this life is like at times… I know nobody can walk in my shoes, but I wish they could, if only it would give them a glimpse of what living gracefully with agony feels like.  Sometimes ‘Grace’ isn’t in the equation.  Sometimes I have UGLY moments… Sometimes this pain would be too much for anyone to handle – not just me.

Sigh…

I have 3 more appointments booked between now and December 1st….

I hope my next appointment is a little less frustrating.

I hope to be much more “Graceful” next time….

**If you are reading this anywhere other than http://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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On September 3, 2010, the International Association for the Study of Pain met in Montreal, Quebec and held the very first International Pain Summit. Approximately 281 people attended the event from around the world to discuss the importance of pain relief as a HUMAN RIGHT and the need for guidelines Before beginning the and new strategies on how to handle this medical crisis. To be frank, as a whole people do NOT understand chronic pain as many of you know from personal experience. We live in a society in which pain control has not been a human right thus far. What we fight for everyday – compassionate drug use, respect, education, and advocacy are not only national issues within our own medical community, but they are WORLD issues that have hit epidemic proportions.

I have said many times here on Graceful Agony that we want our voices to be heard. We want to be treated with respect. We want to have a quality of life which we would not be able to find without pharmaceutical help. WE WANT OUR RIGHTS – to be treated fairly, with dignity and compassion.

Below you will find the short video presentation that the IASP were shown at the beginning of The International Pain Summit. I warn you now that although it isn’t what I would call “Graphic”, it was hard to watch from an emotional standpoint.

One thing is for sure, you can not dispute the fact that without the availability of opiate-based narcotics endless and unnecessary suffering will occur.

I wanted to share this video with all of my readers today and share a message….

The World has become quick to judge people who take certain forms of medication. Many of us have been labeled by our own families, our friends, and our employers.  Some of us have been judged by our Pharmacists and Doctors even….

Isn’t it time to stop all of that and start living by the Golden Rule?

Treat others the way you would want to be treated in that same position.

Don’t judge.

Promote understanding and Awareness.

Whether you suffer from pain or not, you can stand up for someone who does.

If we can somehow become a unified voice, maybe then people wouldn’t have to suffer.

 

psst… Have you voted today for the Canadian Blog Awards? This might be your very last chance to vote!  Please consider Graceful Agony in the Chronic Illness, Health, Best New, Best Overall, and Best Personal categories!

**If you are reading this anywhere other than http://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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THIS IS THE LAST ROUND EVERYONE!!

ROUND 2 – THE FINAL ROUND OF VOTING FOR THE CANADIAN

BLOG AWARDS FOR 2010 ARE NOW OPEN!!

AND I REALLY NEED YOUR HELP!!

YOU MAY VOTE ONCE PER DAY, EACH AND EVERY DAY UNTIL OCTOBER 26TH

FOR GRACEFUL AGONY

in EACH OF THE CATEGORIES I HAVE BEEN NOMINATED IN!!

(just click on the links below)

 

I NEED YOUR HELP!!

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.

PLEASE GET VOTING, AND JOIN THE CAMPAIGN!!

SPREAD THE WORD!!!

VOTE!!!!

PLEASE!!

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.

XOXOXOXO

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Okay y’all… Today is the KICK-OFF to the National Invisible Illness Awareness Week!

From September 13-19th

I will be blogging in hopes that my words will

be heard by other Invisible Illness Sufferers,

so that they may know that they are not alone…

And by people who have never experienced an Invisible Illness so that I

may be able to contribute

to the awareness, understanding, empathy,

and compassion of Invisible Illness sufferers around  this world.

I am only one of close to 134 MILLION people

who wake up each morning,

and go to bed each night with

a prayer in my heart, and hope for us all.

My prayer is that one day we will all be treated with compassion and understanding…

We will be treated with the respect and dignity that we deserve…

And that one day we won’t have to live with the

Physical and Emotional Pain that comes with

being INVISIBLE.

I am dedicating my blog  this week to the millions of people who suffer silently……

and hope and pray that my words may be a vehicle to help bring about change.

To all of my beautiful friends in the online “Chronic” Community,

I raise my voice beside you and WITH you my friends….

There is MUCH strength in numbers,

and I know,

That our unified voice will eventually be heard.


**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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This is what I feel like this morning:

But this is what you see:

While I:

I just want to:

After a night of this:

And this:

And a LOT of this:


So today I am really trying to be this on the outside:

When on the inside I feel:

It’s one of those days in the life of an invisible illness that the outside doesn’t reflect what’s on the inside….

**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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