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Posts Tagged ‘Chronic Illness’

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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For the last 3 years I have been seeing a pharmacist/consultant and my Doctor on a monthly basis to try to come up with the right ‘cocktail’ or combination of medications to help me manage my pain.

It has been one of the hardest ‘tests’ of patience, and one of the most deflating experiences of my life.  Don’t get me wrong, I am not looking for the ‘magic’ pill to cure everything that ails me.  I gave up on that a long long time ago.  I know that I most likely will have to deal with all of these issues for the rest of my life, and for the most part I have fully come to terms with that.  I mean, what choice do we have, right?  Sometimes it is easier to let sleeping dogs lie, and not constantly poke them with a stick and expect them to remain peaceful…..

I do not remember a life before this one, nor do I remember what it is like to live without medication, but this journey has been really hard for me, and most days I feel like throwing my hands up in the air as a sign of defeat.  Sorry.  I am being honest here….  Let me explain…..

The first 20 drugs I was on, I went into the experience with a great deal of hope (and yes, I did say TWENTY drugs…. I have been on many many more than this even….).  Every time I was given a new drug to take, I felt ‘encouraged’ for lack of a better word… I felt hope that maybe THIS one was the right one for me… maybe THIS time I was going to feel better… maybe THIS combination was finally the right one…

But they never were,

and all of those drugs came with side-effects,

and when they didn’t work I would have to try to wrap my head around quitting them,

and not feeling like I had somehow failed..

Only to go through moderate to severe withdrawal/discontinuation syndrome…

Rid EVERY sign that my body ever relied on that particular drug….

just to do it all over again.  Whew!

Now maybe to some it doesn’t seem like that big of a deal… You go off of one, and go onto another, and all the while, keep your chin up, keep the house clean, keep the family happy, and sing la la la, all the home!!

Right?

WRONG!!!!

Maybe the first 20 times I tried, I succeeded in keeping it all in perspective, and had a smile on my face.  The days the smile wasn’t there, my Doctor just thought I was depressed and suggested yet another medication anyhow… So at best I kept a fake smile on my face to avoid ANOTHER PILL.

But after my Topamax NIGHTMARE (for those who don’t know, I wrote a previous post about my experience on this drug), I… well…. to be frank, I gave up trying, I hit a wall, I got really angry, and then I just became jaded about the whole thing entirely….. I also ran out of options….

I have been on every FDA approved drug there is in Canada for Neuropathy…. and none have helped…..

I have been on every pain killer that my Doctor will allow me to take (note:  I could still try a few that are FDA approved, but my Doctor won’t allow it).

I have tried numerous drugs and combinations of off label drugs, but they never really helped, and most just made me sick…..

And as my health declined, and I ended up with even more symptoms and problems, the drugs that were somewhat effective started being less effective, and then even MORE drugs were added to the mix…

STOP THE INSANITY!!!!!!!

One of the last drugs I tried was Cymbalta, and after having yet another horrid reaction, and an even more horrid withdrawal, I said ‘ENOUGH!!!!’  I am NOT playing this game ANYMORE!!!

Yes, I have been depressed at times, WHO WOULDN’T??  But it isn’t the kind of depression that medication will fix anyhow… I am one of those weird few who cannot take antidepressants don’t, they make me MORE depressed!  This type of depression is a result of medical treatment, not the lack thereof.

I JUST NEEDED A BREAK from the insanity that IS this Chronic Life!!!

So where am I now?

I am ‘maintaining’ the drug regimen that I essentially started out with!  LOL!  Really?!  All of that to end up where I was??  I guess I need to laugh, because if I didn’t, I’d surely be crying!  😉

I have run out of options in medication, so I am looking YET again for options outside the conventional medical world to help treat my pain, and I am taking a stand….

What I put inside my body is MY DECISION, MY CHOICE, MY RIGHT… As it is yours…

I have jumped through every hoop, dodged every bullet, and hurdled every obstacle that has been put in my way by Doctors, Specialists, Practitioners, Therapists etc… But now it is MY TURN to lead, and my right to be in control….

No more ‘cocktails’ for me right now, and no more new drugs… I know what is right for ME at the moment, and that isn’t it.  What may be right for me tomorrow might not be right for me today, but it is time for me to feel in control of my body once again, and lead this journey to recovery, and not be led anymore…..

It hasn’t been an easy road, for me, or for my family and loved ones… it isn’t easy to watch, I am sure you all can relate!!  In the process it is soooooo easy to lose SELF, lose HOPE, lose connections with others, lose IDENTITY…..

But one thing I know for SURE is, WE CANNOT DO THIS ALONE, WE CANNOT BELIEVE THAT WE HAVE FAILED, WE CANNOT STAND IN JUDGMENT OF OURSELVES, and WE CANNOT LOSE HOPE!!!!

So yes, I fall just like everyone else does…. and I am not positive all of the time…. but even when I feel like I’ve given up, I have to realize, I really haven’t…. I just need to find the right path…..

Just for today, change your perspective…. what might seem like INSANITY might just lead you back to a place you’ve been longing for….

Sometimes PEACE is better medicine than anything you have been prescribed…..

 

**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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It has been such a long time since I was here.

And so many things have happened in my life since then… I hardly know where to start.

Writing has always been healing for me, and I have truly missed it, but for many reasons, I had to take a break.  I am hoping that break is over now, and that I can rejoin this amazing on-line community!  And do you know how awesome and inspiring this on-line community is???

I will tell you!!

Since I stopped writing, Graceful Agony has still remained strong!!  I was shocked to learn that this site has had over 63 THOUSAND HITS!  63,429 to be exact!!  That is so amazing to me!!

THANK YOU FOR NOT GIVING UP ON ME!!!!! 

I will slowly be filling you in on what has transpired over the last year, while writing new posts, relaying new info in medical news, and hopefully reestablish the commitment I made to all of you.

I am excited to communicate with all of you, relearn the art of blogging (Please be patient, as the format here at WordPress has changed quite a bit since I was last here), but most of all, I am excited to find a piece of me that I have been missing…..

Thank you again for hanging in.. and not giving up on me.  This Chronic Life sure has its ups and downs…

One thing is for sure….. I am blessed to be able to share those ups and downs with you.

xoxoxoxoxoxoxo

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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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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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(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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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

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