Feeds:
Posts
Comments

Archive for the ‘SI Joint Dysfunction’ Category

 

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….

Read Full Post »

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

Read Full Post »

Thanks everyone for all the support and encouragement you have all given to me this past week… I can promise you that is had made a difference… and I apologize if I haven’t gotten back to all of you… It has been hard enough treading water the past few days… I will get back to all of you, it just might take a bit of time…

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 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

Read Full Post »

I must say, it was bitter-sweet to say goodbye to 2010….

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 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

 

 

 

Read Full Post »

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

Read Full Post »

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!

THUNK!!!!

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.

THUNK!!!!

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.

XOXOXOXOXOXO

**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

Read Full Post »

Ahh I remember the good old days… The days that existed before pain.  It isn’t easy for me to go back in my mind and think of those days very long.  It hurts.  A lot.  My body might not have any visceral memory of what it felt like to live without pain, but my mind does if I let it.

In those days the only limitations I had were cash (or lack thereof) in my pocket and a mandatory 4 or 5 hours of sleep per night, other than that the world was in the palm of my hands, or at least that is how I remember it anyhow…

I spent HOURS on the phone making plans for EVERY night of the week.  If I wasn’t out dancing, I was out for coffee with a girlfriend.  If I wasn’t out with a girlfriend I was enjoying the peaceful evenings browsing through the mall and fantasy shopping…. I planned vacations… I had friends… I had a social life… and then that all changed.

First I became a Mom, and settled down – but I changed my life because I wanted to…

Illness changed my life without asking my permission.

The things that I once loved to do hurt too much.  I couldn’t do them anymore.

No more dancing, no long trips to the mall, and coffee dates ALONE replaced those with friends because I never knew until the last-minute if I could go to a coffee shop or not… so when I can I just go myself.

I was thinking today about how I have changed my comfort level in the past 5 years… each time something gets taken away by my pain, I grieve over the loss – but I have no choice BUT to move forward somehow.  I have to move forward.  I don’t think I necessarily accept any of it, I think it is quite the opposite actually, but turning off somehow and becoming complacent is sometimes the only defense mechanism I’ve got.

So I numb myself out, and try to convince myself that I am fine just the way I am….

That I will never need anymore than what I have….

That my existence is completely fulfilling….

Until I realize that my comfort level is so teeny-tiny now, I don’t have room for anything outside of this little box.

I get up and spend the first hour of the day with my son and send him off to school, I take my meds, I sit on the couch and blog, email, read… and then I pour another coffee and knit for a while… and then I take more meds…. and then my honey leaves for work and I am ALL alone except for my pets…. and then I pour myself another coffee…. and then I get on the computer for a while…. then I go pick up my son, come home, and knit for a while before dinner… and then I take my meds…and well, you can just keep repeating that until bedtime save for a few moments that keep me sane.

My honey loves me immensely, and he gets me out of the house on his days off.

My little dude loves me too, and he likes to sit at the coffee shop with a book and a cookie while I get my java and a little background noise…

But it is all the same really.

When did I lose so much of myself?  Where did the fun-loving effervescent girl go?

She is hiding in the teeny-tiny box she put herself in…..

Now others may not see me this way at all, but you would have to ask them for I have no perspective than my own.  But when days turn into weeks, and week turn into months and the pain doesn’t let up – I brace myself against the world, I brace myself against EVERYTHING to protect myself from more pain.

Social anxiety replaces confidence….

And the teeny-tiny box gets even smaller.

But knowing the problem is half the battle as they say.

Maybe I need to change things a little for MYSELF….

 

Maybe it is time I get a little uncomfortable……

Because I’m telling you… Comfort sucks sometimes.

I miss me some days.

 

**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

Read Full Post »

Older Posts »

%d bloggers like this: