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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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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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For those of you who don’t know how blogging works, or more specifically how WordPress blogging works – I have what is called a “Dashboard” from which I can manage this site.  I can see who has signed up for email updates, see my blog stats daily, weekly, and monthly, and I can also see ‘search terms’.  What this means is if you search a term in Google and find my site, I can see what it is you typed in to find http://www.gracefulagony.wordpress.com … For example these are a few common searches that will bring you here:

“Graceful Agony” (Obviously)

“Chronic Pain Support”

“Fibromyalgia Blogs”

It is a really neat thing to be able to see, for the most part.  It helps me understand who is finding me on the world-wide web, and what it is they are looking for.  I usually check my stats each day – and I can tell you that on my really bad days, it is truly motivating to see how many people are sharing in my experiences, regardless of whether they leave comments or not… Day or night  – I KNOW I am not alone.

Yesterday when I checked in, I found a really disturbing ‘search term’ sitting on my dashboard… it was glaring off my screen… Try as I might, I just cannot let it go.  It makes me horribly sad, and I wanted to address it here… this is the search term that someone entered to find me:

“Best drugs for suicide”

Now you might be asking yourself WHY on earth would that be linked to my site somehow? – But I can explain that.  I wrote an article recently about the risks associated with the drug Tramadol – one being a higher suicide risk…  because of that the word ‘suicide’ is now linked to my page.  Make sense?

Now I have NO idea who it was who used this search term, and what brought this person to sit down at their computer and look up “best drugs for suicide” – but no matter how I look at it, it seems like a huge cry for help.  I am thinking that you have to be in a pretty low place in your life to be looking up that sort of information…. 😦

So here is my open message to the person who found my site this way, or to ANYONE reading my blog who has had those thoughts…

PLEASE PLEASE PLEASE reach outside yourself long enough to ask for help.  You are NOT alone… there are SO many people who have struggled with this sort of depression and feelings of hopelessness… but the good news is that is a fight that you can win… It is okay to admit that you cannot handle life at this very moment without some support.. WE ALL feel like that at times… YOU ARE NOT ALONE… And there is NOTHING that is as bad or as permanent as ending your life.  It is always dark before the dawn… and take it from me – nothing ever stays the same… change is always occurring, even when you cannot feel it…  It seems trite to say that things will get better.. but they almost always do.

Depression is a VERY serious and debilitating illness – but there are many forms of treatment… suicide however is not one of them.

1-800-SUICIDE (784-2433)

1-800-273-TALK

1-800-667-5005 (Canada)

1-800-273-8255 (Canada and the USA)

Pick up the phone and make the call today… It is the first step… there are people who are waiting to help you.

Wherever you are today – please know that you matter.. your life matters… and there are people who truly care.  The sun will rise and shine again, I can promise you that… I have seen it happen in my own life, and so will you…

LOVE to all my readers today…. I hope you have a peaceful weekend!!!


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I wanted to pass this article along.  In a press release this week, a company called BioElectronics Corp made an announcement that could potentially change the way certain forms of chronic pain are treated.

BioElectronics produce and market inexpensive, disposable, drug-free, anti-inflammatory ‘devices’.  These devices  are electrical stimulation units, and are potentially a ‘drug free’ way to control pain.

I will be the first to admit I am not familiar with these products… I have used a TENS machine to help with severe flares, as well as laser and ultrasound, but I haven’t used the devices in this article. I have browsed  the BioElectronics website and there are a few things that I think I could probably put into my daily ‘management’ routine that could be beneficial.  I don’t think in my case it will eradicate drug management, but if it enhances quality of life, I am ALL for it!

I will note that this company is in the United States, so what is and will be FDA approved in the USA is DIFFERENT than what is approved here in Canada.  So for all the fellow Canucks out there 😉 we might not have these as an option in the near future.

What ‘Drug free” treatments do you make part of your management plan?  Share them in the comments section, they may be able to help someone else!!

Hugs and love and Happy Hump Day!!

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I have Endometriosis. It is a condition that I don’t speak much about, but it is also one of the most life-changing illnesses that I have ever gone through.  It is extremely painful, and it has caused a LOT of grief in my life.  I believe that most women have been programmed to keep silent about any issue that happens ‘below the belt’, and I must admit I have spent more than my fair share of time in silence.   Since March is Endometriosis Awareness Month, it is a purposeful time to share some of my story with all of you.

For those who don’t know what Endometriosis is, I will try to explain it in simple terms.  A woman’s uterus is lined with endometrial tissue.  The cells that make up that tissue can travel to other places in your body and grow into painful lesions.  Those lesions are most commonly found on the bladder, bowel, intestines, colon, appendix, and rectum – BUT Endo tissue can travel anywhere, and has been found on lungs, the spine, and even the brain.

These lesions can cause adhesions and a mass of scar tissue.  It is an extremely painful disease, the most common symptoms are:

  • Very painful menstrual cramps; pain may get worse over time
  • Chronic pain in the lower back and pelvis
  • Pain during or after sex
  • Intestinal pain
  • Painful bowel movements or painful urination during menstrual periods
  • Spotting or bleeding between menstrual periods
  • Infertility or not being able to get pregnant
  • Fatigue
  • Diarrhea, constipation, bloating, or nausea, especially during menstrual periods

I have Endometriosis – and it has had a life-changing impact on my life.  I have always had ‘painful’ periods, right from the get go at 12 years old, but for the most part I kept them to myself.  I thought every woman went through pain 2 weeks out of every month, and just thought it was “normal” – but I confused the average “discomfort” that comes with having a menstrual cycle with “pain”, until the pain got so bad it started to control my life.

I woke up one Christmas Eve 4 years ago in excruciating pain and at a loss as to why.  Up until that point in my life I had NEVER felt that kind of pain.  My parents rushed me to an ER, and they told me it was likely an infection, gave me antibiotics and sent me home… but the pain didn’t go away.  We played this game for months on end, back and forth, and NOBODY could figure out where my pelvic pain was coming from.  I had internal exam after internal exam, numerous blood tests, and was given an insane amount of every antibiotic, antifungal, antiyeast ointment, potion, lotion and pill on the market – even though EVERY test I had came back negative.  Even at one point I was prescribed a PROSTATE medication (and um, no, I don’t have a prostate ;))…The medical community was just grasping at straws… As my pain got worse and worse to the point that I was completely bedridden, everyone I saw just seemed to become more clueless… NOBODY could figure out what was going on with me… until I met an angel in the ER one day.

I had gone through an excruciating few weeks, doing nothing but crying out, shaking, rocking back and forth and praying that I would just stop breathing because I couldn’t handle the pain any longer.  I reached out to My Mom in the middle of the night, and she got out of bed and drove me to the hospital.  My Mom is ferocious when it comes to protecting those she loves, and she doesn’t take NO for an answer, and she had HAD enough of me falling through the cracks of our healthcare system…   She demanded an answer…

The   nurse I had taking care of me that morning was a nice lady, from what I remember – but the ER Doctor didn’t have much time for me.  He assumed I was hypersensitive and just had PMS… After the nurse pushed through syringe after syringe of morphine into my IV and it STILL didn’t touch my pain she knew something was wrong.  I was ready to lose my mind, shaking uncontrollable from the pain, and I was told that it was just PMS?  Are you kidding me?  That sent my Mom into action faster than I had seen her react to almost anything!  She ended up outside my room having “a word in private” with the ER staff, and the next thing I remember is being told I was going to be seen by a OB/GYN once she came out of surgery… FINALLY maybe THIS WAS THE ANSWER…

A beautifully sweet woman came into my room in scrubs, and introduced herself as a OB/Gyn surgeon and specialist in Chronic Pelvic Pain.  She came and sat on my bed and held my hand, and it was the FIRST validation I had that I wasn’t crazy, and this pain wasn’t all in my head.  She tried to admit me right then and there, but there were no available beds in any hospital in the city (this is a very common occurance where I live) – so she gave me her card, a prescription, and demanded that I call her PERSONALLY in her office that Monday morning.  Come hell or high water she was going to help me.

To make a long story a little shorter, I ended up seeing her a few times in her office before we scheduled surgery.  Each time she held my hand… she cried with me… she acknowledged that the pain I was experiencing was indeed as SEVERE as I knew it to be… She became a godsend in my life, and I don’t know if I would have made it through that if it wasn’t for her (and my Mom of course).

The morning of my surgery I was a complete mess.  I was SO scared.  My Mom held my hand through the whole ‘admitting’ procedure into the day-surgery unit.  We spoke about how GOOD it was I was there, and how HOPEFUL we were for finally getting somewhere in this failed health-care system we have.  She kept telling me that this could be the answer we had been looking for.  I should have felt encouraged,  but all I felt was FEAR… My Angel in scrubs met me in the day-surgery unit and once again held my hand… she told me she was going to walk me through every step of the process, and promised me her face would be the last I would see before going to sleep… and she didn’t break her promise.  My Mom held my hand all the way to the doors of the OR, and on the other side of those doors my Doctor waited for me, and held my hand down the hall, into the OR, and continued holding my hand while I the anesthesiologist sent me off to la-la land….

I woke up in recovery, and I remember feeling like I couldn’t breathe, and my belly HURT badly.  My surgery had taken a little longer than they originally thought it would, and after giving me some oxygen and morphine for the pain, I was told that my Doctor would meet me back on the ward to discuss how the surgery went… I was in a lot of pain, but it was OVER.

My Doctor came in to see me shortly after, and told me that I had Endometriosis.  They couldn’t find a lot of “live” tissue to remove, but had found scar tissue, old lesions, and a big adhesion.  My appendix and my bowel are now one –  my cecum is fused to one side of my appendix.  That is why the surgery took longer than expected.  She had to consult with another surgeon about the possibility of trying to separate the two…. They decided to not take the risk, and leave it the way it is.  They removed as much of the scar tissue as they could, it was ablated, or burned off. Although anyone with Endo knows that it is almost impossible to remove ALL of it, and it is almost a certainty that it will grow back.  THAT is the nature of the disease.

Recovery from the surgery was not a whole lot of fun, I will be honest.  Because it was a laparoscopic surgery, my abdomen was blown up with gas to essential “float” my organs so they could see the full spectrum of my abdomen.  I ended up with 3 incisions that were very small, just 2 stitches in each, and caused a little discomfort, but no pain to speak of.  The gas however, THAT was a painful experience!!  It takes 8-10 days for your system to absorb and release the Carbon Dioxide.  It forms small air pockets before being absorbed, and that was the worst pain.  The pockets around my diaphragm made it hard to breathe, and hurt like hell.  My Fibromyalgia and my Myofascial Pain flared big time during recovery, and the severe pelvic floor spasms that I had come to know intensified due to the trauma.  I ended up back in the hospital 4 days after surgery, and it took me a lot longer to recover than most.

I ended up in intense treatment for Chronic Pelvic Pain for 3 years, it was a REALLY long and hard journey that I will save for another day.  I could tell you all many stories! 😉

It still affects my life, but I don’t let it control me anymore.  My options at the time for long-term treatment were taking hormones to put me into menopause early, or using a combination of therapies to manage the symptoms.  I took the latter option.  I have been on the birth-control pill consecutively for 3 years so I never get a period (or in theory that is how it is designed to work, but sometimes it doesn’t).  I still have chronic pelvic pain, but nowhere near as badly as it once was.  And like everything else that has been thrown my way, I take it one day at a time.

I may never have the ability to have another child – and that is extremely devastating to me.  My honey is the absolute LOVE of my life…. and that will never change.  There is nothing more that I would want than to have a family with him… And I haven’t fully accepted the thought that this might never happen.  But this is what I know for sure…. We ARE a family, no matter whether we bring another child into this world or not.  We are a family of our OWN design, and I couldn’t be more proud of that.  I also know that I am perfectly loved JUST the way I am.  My honey’s love is not dependent on whether or not I can provide him with a child…He will love me passionately and perfectly no matter how our journey through this illness plays out.  And… It doesn’t make me less of a woman.  This is something that I have really struggled with admitting to myself.  For a long time I felt like this illness took away EVERYTHING that made me a woman, but as time has gone on, I have learned that THAT is not the case.  I am WHOLE just the way I am – and no disease can take that away from me.

MARCH IS ENDOMETRIOSIS AWARENESS MONTH.

My hope is that my story can bring awareness and hope to others.  If you are someone who suffers from this disease, know that you are not alone.  I am fighting it as well, right beside you.

**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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79 days ago…

On a day that I was feeling

lonely, and frustrated,

I had to desire to reach out.

I had been thinking for a while about starting a blog,

so that I could connect with people who might understand

how I live each and every day,

and I thought it would be a cathartic way

for me to purge and share my feelings.


It was only 2 and a half short months ago that

I created my WordPress blog, and without much of a plan

I jumped blindly into the wonderful world-wide web –

I sat all alone on a Friday night and wrote

“Grace”.

When I hit “publish” for the very first time

I thought to myself “Here goes nothing!”,

and had absolutely no idea what I was in for….


With my breath held in my chest,

and anxiety in my heart,

I came back, day after day –

and wrote more openly, more candidly

and with more vulnerability than I even knew I could –

The fear of persecution didn’t hold me back,

I was nervous BUT

I wrote anyway…

I wrote when I was angry, when I was sad, when I was encouraged,

when I felt like falling apart….

79 short days ago I ventured into the “unknown”

and it was one of the best decisions I have ever made.

Outstretched hands of support have turned into solid friendships,

friends have turned into family,

and my original post turned into 190 in a blink of an eye –

what started out as a diary has become a community of love,

sharing, compassion, and encouragement.


I am in awe of the journey that has led me here –

and so VERY grateful for each and every one of you who has come

to this page, and  actually WANTED to read my words –

All of you who leave comments for me, day after day.

YOU keep coming back,

And that means more to me than you will ever know.

I cannot imagine my life without Graceful Agony now,

just like I cannot imagine my life without all of you –

You have given me MORE than you’ll ever know.

So for my 190th post

I wanted to take the time to thank all of you

from the bottom of my heart.

My life is forever changed because of you.

**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 try to follow the what is happening around the world when it comes to Healthcare.  Being in Canada, our healthcare system tends to be more passive than in other places in the World, yet we tend to “adopt” systems and laws after they have proven to be beneficial in other countries. (Or at least in theory, that is the way it should work). 😉

In the Graceful Agony chat room this past Friday as well as on our Facebook group page, we began to touch on the differences between chronic pain treatment in the US, as opposed to treatment here in Canada.  There are many things that set the two apart – namely available medications, and wait-times to receive proper care.  While Canadians continue to be frustrated with the dreadfully long wait lists to see specialists, and shake their heads at the medications that could potentially improve their lives that are NOT available here… The unanimous opinion of my friends to the south  is that their system only protects the people who can afford to be well – and the others fall by the wayside.

Will the NEW healthcare reform legislation that was signed into law this week in the USA lead to better treatment of Chronic Pain?

The American Academy of Pain Medicine believes so.  In a statement released in conjunction of the new reform laws being passed, they say that certain parts of the new legislation has the potential to “improve the quality of life for people who suffer with chronic and acute pain.”

How will this be achieved one might ask?

Through things such as awareness, education, training, and research becoming priorities – THIS is what is being alleged anyhow.  Click on this link to read more in a Press Release in the news today.

The American Academy of Pain Medicine (AAP) is applauding the effort to address the urgent crisis that IS our health…. Are you?

Do you believe that this will create positive change?

While the Chronic Pain sufferers to the North might not believe that this will have an impact on the Canadian Health Care System, I believe otherwise.  IF the new laws end up being a step in the right direction in the US, my hope is that the ripple effect will be felt here as well.

Please share your thoughts and opinions in the comments section… I’d love to hear from all of you!

**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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