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Posts Tagged ‘Fibromyalgia’

 

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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The questions I hate most these days are ‘What are you doing? ‘, ‘So what have you been doing lately?’, and my all time fave, ‘So what is it that YOU do?’ (that one is usually asked by people I first meet in relation to what career path I’ve chosen)

What DID, DO, or WILL I?

Absolutely nothing, thanks for asking!!!

Well of course that’s not what I say…. I mean, not out loud anyhow. I usually say ‘not much’ or mumble how being a Mom keeps me busy (If they only knew my son is in Grade 5, makes his own lunch every day and is very independent outside of school.), or I try to just change the subject. ‘What are YOU doing?’ seems to be a good enough reply. People like talking about themselves generally, and are only too happy to take the focus off of me and onto themselves.

Ring ring…. Ring ring…. ‘Hey! How are you? Whatcha doing?’ is how many people start a phone conversation….

And by text, it’s know different. ‘hey? Are you busy? Can you chat?’

Aaaaahhhhhhhhhhhhhhh!!!!!!!!!

Now I don’t think I’m THAT cynical, but the more I’m asked that, the less I want to talk to anyone these days.

What seems like an easy and benign question to ask is one of the most painful ones for me to answer. It is extremely frustrating at times. And it is a daily reminder to me of WHAT I AM NOT DOING, and WHAT I CANNOT DO.

I am not driving a car.

I am not going to school.

I am not working, nor am I working towards a career….

Vacuuming? Nope.

Laundry? Not today.

Out with a girlfriend? There aren’t many of those left.

I can’t even chat about a funny conversation I had the other day. Chances are, the conversation did not take place!!

Unless you mean the conversation that I had with my body. I have lots of those. I just don’t like sharing them with too many people.

I sit for 6 hours every day. By myself. Sure, I knit, make jewelry, try to write…. I play with my sweet puppy… I eat lunch (usually). I try and make time go by faster…. And I take a walk in the afternoon when my boy gets out of school.

But there’s only so many times I can stand having conversation about WHAT I’m knitting and whether it rained or not on the way to school!!

This life isn’t just about the pain we feel, the medication we take, or the appointments we have to go to. It doesn’t just effect our HEALTH. It effects everything.

The next time you bitch about your job, or do the laundry…. Remember how privileged you are to be able to do those things.

The next time you want to share an absolutely fascinating conversation you had, or movie you saw…… Remember how lucky you are to share those things.

The next time you stress over your paycheque being too small.. Remember that you HAVE a paycheque, and celebrate the fact that you can earn one at all……

And if you are like me, know that you aren’t alone…. And the next time someone asks you what you’ve been up to ‘these days’, tell them you’ve been working hard. You’ve been climbing insurmountable obstacles and working hard to be the hero in your own life.

XOXOXO

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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.

**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 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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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

 

 

 

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It is time to announce the topic of the 3rd round of Graceful Agony’s Blog Carnival!

‘A Dream is a wish your heart makes’

 

The true definition of ‘Dream’ is a succession of thoughts, images, sounds, and emotions that the mind processes while you are sleeping.  But I believe our dreams are much more than that.  Whether it be a  quick day-dream, a wish made while throwing a penny into a fountain, or a driving thought that propels you through each and every day – a Dream has the ability to create hope, experience life, let go of feelings that are holding us back, and they can help us draw up a better blue-print for our lives.

Have you had a dream that has permanently changed your life? Do you have a dream that keeps you going when times are tough?  Or What would your ‘dream world’ look like if you had the ability to change anything you wanted in your life?

The actual topic this round is a very broad one – and the possibilities are endless.  What is it you want to write about?

Entitle your Post “A Dream is a Wish Your Heart Makes“, and then take it in any direction you would like!!!

To participate: Write a post, publish it to your blog, and then email me the link at gracefulagony@gmail.com on or BEFORE October 31st.  I will then create an article featuring ALL of the blog posts that have entered and a link back to all of your sites.  The Blog Carnival will then be published here at Graceful Agony on November 5th.

Once the Blog Carnival is Published on Graceful Agony and you have read through all of the posts, please write a blog post on YOUR blog sharing your experience and a link back to the Carnival so that YOUR readers can follow along as well.

 

The first 2 rounds have been amazing!  And I cannot wait to see what you all come up with!!

 

**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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Poll: Best Personal Blog 2010 | Polldaddy.com (poll 3901025).

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