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Posts Tagged ‘Medication’

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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 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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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

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MANY people in the world of Chronic Illness have seen this meme already.  It is designed to promote National Invisible Illness Week.  Even though I added this Meme to Graceful Agony when I first started this site, I feel compelled to do it again.  As I mature and grow through this journey of Chronic Illness and Chronic Pain I have noticed that some of my ‘answers’ to the following questions have changed…

So here is my updated list!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
I live with a combination of illnesses actually. You could say I was born with an invisible illness, and have struggled my whole life, so I am no stranger to this journey!   I have congenital heart disease, severe Fibromyalgia, severe Myofascial Pain Syndrome, Insomnia, TMJ Disorder, Ligament Instability, Si Joint Dysfunction, Unclassified Nerve Pain, Chronic Pelvic Pain, and Endometriosis.

2. I was diagnosed with it in the year:

That would be a hard question to answer….. I was born with my heart problem, I was diagnosed in my early teens with ‘fibrositis syndrome’ which was actually fibromyalgia, but lacked the fancy name in the 80′s ;) as well as TMJ Disorder, but the rest of the conditions have been diagnosed in the last 6 years.

3. But I had symptoms since:
I have had symptoms all my life really, but they became worse after the birth of my son, and unbearable just over 4 years ago when I was going through devastation in my marriage….. some people have a nervous breakdown… I guess I had a physical breakdown.

4. The biggest adjustment I’ve had to make is:

The Biggest adjustment(s) I have had to make is changing my lifestyle and knowing my limitations. Before I was seriously effected by my illnesses, I was a very active young woman. If you had asked people in my life back then a bit about who I am, most would have said I was ‘bubbly’ and ‘sociable’ and ‘energetic’. Sadly, because of my pain, I still feel like I am the same person on the inside, but I am not as sociable or energetic anymore because my pain causes me to ‘hibernate’ a lot.

5. Most people assume:

I don’t know what most people ‘assume’ truly, I’d be only guessing…. I think the people in my life that love and support me don’t assume anything, because they have been through this every step of the way with me, and they know that ‘assuming’ anything is not the way to go…. they communicate with me and wait for me to lead the pack so to speak.  In saying that, I also know that I have been misjudged and misunderstood by people in my life, and would go as far as saying that I have been stereotyped and treated unfairly.. those people are no longer in my life.  Life is too short to hang on to those who aren’t worth your time.

I am blessed to have parents who are AMAZINGLY supportive, a partner in life who loves ME, and has never seen anything other than who I am, and is proud of me every single day.  I also have the world’s best son!  My little dude has a really great understanding of this life, and I hope it leads him to have only compassion for people’s differences.

6. The hardest part about mornings are:

The hardest part of the mornings is simply getting up! I am almost ALWAYS in agony when I first wake up in the morning, and not mobile. On really bad days my honey brings me my meds and a coffee in bed, so I can wake up slowly and start moving slowly…. On regular “bad” days, I can get up and get my own meds, and then I try not to move too much until my body warms up a little…. that is ALWAYS followed by some light stretching and a HOT bath, and then I am usually mobile after that.

7. My favorite medical TV show is:

I love ALL medical shows! I wish Dr. House was my long-lost uncle or something ;) …. he would have the “cure” for me in under an hour :) ER was another of my faves (I have the last season on my iPod), and I love Grey’s Anatomy, Private Practice, Mercy… you name it! I cannot be a Doctor in real life, but I’d love to play one on TV!

8. A gadget I couldn’t live without is:

Another hard question! As with a lot of my online chronic friends, gadgets seem to be my bestest friends, and they make my life a LOT easier! My laptop, my blackberry, my iPod Touch…. and my new Sony Reader! I LOVE THEM ALL! Just ask my honey, because they are USUALLY all brought to bed with me every night! (Yikes, that is not very romantic, is it?)… and I have been known to blog in the bathtub from my iPod…. and yes, I have dropped my smartphone in the bath ONCE…. see.. I told you, they go EVERYWHERE with me!

9. The hardest part about nights are:

The hardest part about nights is PAIN, and what comes with the pain…. feeling alone, 4am baths, sitting on the couch in the dark by myself, or not being able to cuddle because I am too sore….. Pain is often isolating, and that isn’t something that I have gotten used to yet. My honey gets mad when I tell him I have been up all night with pain, and usually asks me why I haven’t woken him up, but I don’t think it is fair that BOTH of us are up all night.  I work hard NOT to let depression creep in during those isolating times.

10. Each day I take __ pills & vitamins. (No comments, please)

It varies depending on how much pain I am in, but on a good day I take 5 different medications throughout the day, totaling  15 pills a day…. On bad days the number goes up in relation to how much pain I am in….. I will probably end up on 7 different medications, and god knows how many pills in total that will be.

11. Regarding alternative treatments I:

Regarding alternative treatments, I have pretty much tried everything other than doing the Macarena while standing on my head! I have tried acupuncture, acupressure, craniosacral therapy, massage, chiropractic, holistic, naturopathic…. yep, you name it, I have tried it!

12. If I had to choose between an invisible illness or visible I would choose:

When I first answered this question, this was my answer..  ‘If I had to choose anything, I simply wouldn’t. I would choose a life without illness period. But because that isn’t the case, and we don’t live in Utopia, I will choose exactly what I have… and hopefully the courage to teach others what it is to be like me everyday. Promoting awareness, compassion, and education might hopefully, one day, change the world in which people like me live.’

The gist of my answer still rings true today… I believe there has been a change in the conviction I feel though.  Today if I were to choose between having an Invisible or Visible illness, I would choose Invisible hands down… And this is why… For a very long time I thought that the only option I had to be happy was to not have illness of any kind.  I was wrong.  I have a VERY full and rewarding life… NOT the life I ever thought was possible for me.  I have met so many amazing people through Graceful Agony, and I would NEVER want to say goodbye to any of them.  They have added so much more to my life than I ever thought possible… so if illness is what has brought us together, then I can accept that.  I choose MY life, the way it is..

13. Regarding working and career:

Regarding work and career, my pain, and being the best mom I can be, IS my full-time job. I hope one day that I can make a career our of writing, and being a patient advocate in some capacity.

14. People would be surprised to know:

People would be surprised to know how soft my heart truly is… I have been fearful at times that my illness has made me either less approachable, or more hardened or jaded…. People that have known me for a very long time know that I am a softy….. but people who meet me now… I am not sure how they view me. I cry at the drop of a hat, during commercials, when I listen to music….. I spend a lot of time thinking about OTHER people, and probably not so much time thinking about myself. I always have everyone elses best interests at heart, and that can cause internal battles for me at times.  You can say I am a people ‘pleaser’, but not because I have to, it is because I WANT to.  That is who I am.  Somehow when intense and chronic pain gets involved I think that may get lost in translation somewhere.  I think I sometimes come across as being a lot more impatient and cold than I truly am.

15. The hardest thing to accept about my (not-so-new) new reality has been:

I think that answer might change from day-to-day, depending on where I am at with my pain level, and what I am doing. Life has a way of throwing you new curveballs every day…. And if you were to ask me that question 4 years ago, I am sure the answers would have been vastly different from today.

The thing that I often discuss with the ones I love is that THEY have created normalcy around my illness. They have HAD to… so when I say “I’m having a really bad day today”, they aren’t surprised by that. But for myself EVERY bad day I have is like THE VERY FIRST BAD DAY…. I haven’t gotten used to being in agony…. I mean, I am USED to it from the standpoint that it happens all the time…. but it still feels as intrusive and shocking to me as it used to…

The other thing that I haven’t gotten used to is what an all-encompassing impact my illness has on everyone I love.  Chronic Pain is a family illness…  I don’t ever get used to seeing the helpless look on my Dad’s face, or seeing a tear in my Mom’s eye.  It gets NO easier to deal with my sisters discomfort when my pain is brought up in conversation, or when my honey gets angry with my pain… I am still trying to learn how to separate ME from my pain during those times… I feel really bad that my pain hurts others… I am trying to NOT take responsibility for hurting my family.

16. Something I never thought I could do with my illness that I did was:

Something I never thought I could do with my illness has been to have someone love and accept me completely EXACTLY as I am….. baggage at all. When my marriage was coming to an end, I had completely resigned myself to the fact that nobody would love me the way I am, and that I was totally okay with being single or ‘alone’. Out of the BLUE an old friend came back into my life, and it was LOVE AT FIRST SIGHT (or 100th sight really, since we were friends years ago)… We spent MANY MANY hours on the phone talking before we ever met for coffee… I wanted him to know exactly what my life was like….. He didn’t think it was an issue in the least bit! He kept saying things like “you are my hero”, and “Wow, I cannot believe all the things you go through, I have so much respect for you.”. It was a point of view that I was really not ready for…… 19 months later he has been with me through thick and thin. He is truly my best friend, and we have a love that has risen above everything that has been thrown our way. I want nothing more to spend every day of my life with him….. and I am surprised that I have been so blessed.

17. The commercials about my illness:

What commercial there are about my illness, do not depict ANY of the illness accurately! They drive me crazy! Take a pill, and in 30 neat seconds that look more like a musical montage than real life, POOF! You are happy and jogging down a sandy beach with your golden retriever…… crap, can I have a pill like that?!?!?

18. Something I really miss doing since I was diagnosed is:

I miss the little things….. having the energy to get up and go, watching my son’s Christmas concert without having to worry about how hard the seats are, how long I will be sitting for, what price I will pay the following day……. It isn’t BIG things like ‘Oh I wish I could go skydiving still!” or “I really miss alpine skiing!”…. I really miss just NOT having to be aware….. I am hyper-alert every minute of every day, and it is TIRING! The first thing I think about in the morning when my eyes open is what I have to do just to get through the day…. I always have to be 10 steps ahead of the game….. if I have a coffee date at 5pm, I have to modify everything I do so I know that I will be mobile and functional by the time 5 rolls around….. I miss NOT having to think in those terms…. I miss not having to think of my pain every second of every day whether my pain is bad that day or not…. I always have to be 5-10 steps ahead…… it prevents me from living in the moment at times.

19. It was really hard to have to give up:

In a word, FREEDOM…. Physical, Mental, Emotional etc….. There are a million things I have given up, but they always end up being about one word…… freedom.

20. A new hobby I have taken up since my diagnosis is:

I don’t know if I have taken up any new hobbies….. I have always loved to read, and know I read just as much, but maybe I read about different things…. But other than that, all my hobbies are pretty much the same – making jewelry, knitting, crocheting, reading, spending time with family etc.

21. If I could have one day of feeling normal again I would:

If I could have one day of feeling normal again, I don’t think I would do it. If it was only ONE day, and the following day I would go back to feeling this way, I think the EMOTIONAL price I would pay for that would be more than I am willing to pay.  DOES THAT SOUND CRAZY?  I am now at a place in my life that I have no muscle memory or recollection of what it was like NOT to have pain…. I honestly don’t remember now… and I think if I had one day to feel that way, I would have to deal with all the depression and emotion of accepting a life with pain all over again….. I hope that makes sense.

22. My illness has taught me:

Where to start with that one?!?……. My illness has taught me a million things! Mainly though, it has taught me how strong of a woman I am, how much I am loved, how the human spirit can bend and break, but it becomes stronger at the broken places…. It has taught me what strength, and courage, and perseverance truly mean…..

It has also taught me that there is strength is numbers.  There is a united front in our online community – and the people who you may expect anything from the LEAST might just be angels that have been purposely put in your path… Thank you my earthly angels who are reading this…  I hope you know that my words mean nothing without you on the other end – reading them, loving me, and encouraging me.

23. Want to know a secret? One thing people say that gets under my skin is:

One thing people say that gets under my skin is “It could be worse!”….. um that is very easy to say when you are not the one having to live this life everyday…. That is a huge slap in the face.

24. But I love it when people:

I love it when people take the time to talk to me about what I go through, and really listen. I love it when I connect with people…. I love it when people take the time to give me encouragement, listen to me cry, put up with my rants, and don’t judge me.  Some of the most powerful words to hear are “I am so sorry you are going through this” and “I love you”.

25. My favorite motto, scripture, quote that gets me through tough times is:

My favorite thing that gets me through tough times is just to count my blessings…. it always looks much darker when you don’t stop and reflect on how many wonderful things you have in life, and how much gratitude can come out of a little bit of reflection.

26. When someone is diagnosed I’d like to tell them:

When someone is diagnosed I’d like to tell them that even though our experiences and or symptoms might differ, I am always here for YOU!  I hope to have the opportunity to share my experiences, my friendship, and to encourage you to have hope.  YOU are NOT alone!

27. Something that has surprised me about living with an illness is:

Something that has surprised me about living with an illness is that it has made me tolerant of things that I normally would have not been, and it has proven to me that I am stronger than I EVER thought I could be.  My will, courage and fortitude has ended up being something very different from what it used to be.

28. The nicest thing someone did for me when I wasn’t feeling well was:

I don’t know that I can answer this question with one answer….. There are so many nice things that people do for me when I am not feeling well! My honey is the greatest (okay okay, I am sure that you are probably getting sick of hearing that already ;) ), and he is FULL of wonderful things that he does day-to-day… from bringing me my medication, rubbing my back, reminding me of my strength when I forget… holding me as I sob, and not judging me…… My parents are ALWAYS just a phone call away to talk me off the ledge when I have had enough, they love me unconditionally, and the power their love has brings me to tears.   I have some AMAZING online friends who are ALWAYS there to listen to me…… The thing that makes the most difference when I am not feeling well is to simply just have someone ‘there’ and to know that I am not alone.

29. I’m involved with Invisible Illness Week because:

I am involved because THIS is who I am.  I AM Graceful Agony… and I do this for others who walk this road as well.

30. The fact that you read this list makes me feel:

The fact that you read this makes me feel loved! THANKS EVERYONE!!!

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This week (September 5th – 11th) is National Suicide Prevention Week.

The World Suicide Prevention Day is this coming Friday, September 10th.

This is a cause very close to my heart for many reasons.  In the Chronic Pain world it is common knowledge that more often than not  depressions goes hand in hand with chronic pain. Statistics would lead us to believe that those who suffer from chronic pain and/or chronic illness have a higher risk of attempting and completing one’s desire to end their life.  It is sad…. and I believe it is needless.  If those who suffer chronically were to be treated properly and with respect – both medically and personally, I believe that this risk would lessen.

WASHINGTON (Oct. 27, 2009) A photo illustratio...

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When I first became ill and my life fell to pieces, I suffered from severe depression.  It wasn’t the first time in my life that I had to fight the demons in my head – but it was the most all-encompassing and debilitating depression I have ever experienced.  I completely lost myself… literally.  I became a stranger to myself, and couldn’t find any resemblance of who I used to be.  Every inch of my body became foreign to me… I doubted every reaction, every thought… And with a life-long diagnosis I lost all hope of ever finding myself again.

I can admit now that I was far more depressed than I ever let on… I was more depressed than I could admit to myself.  The only way I could describe it is that it felt quite a bit similar to me as when my brother died.  I don’t know if anyone one could understand that at the time, I don’t know if I truly understood it either.  Looking back I now know that I was grieving – grieving over the loss of the ‘old’ me combined with an overwhelming anger that I shouldn’t have to.  I didn’t want to let go of the ‘healthy’ me.  I was scared to let go.

Although a lot of that time is now a blur to me – a foggy whirlwind…. a darkness that numbed my senses…. I do remember many internal conversations with myself that I truly thought my family would be better off without me.  I remember feeling like the perpetrator, my family being the victim of my pain.  I remember trying to convince myself that I could never be the mother I wanted to be… I felt all alone… I felt misunderstood… I felt overwhelmed… and I didn’t know if I could face life anymore… and that is when the thoughts of suicide came creeping in….

The thought of this now is so disturbing to me, it fills me with that feeling all over again.  It makes me want to cry for the woman I used to be.  Nobody should ever have to feel that way.  Nobody should ever feel like suicide is a valid option or good solution to any problem.  Our lives are worth so much more than that….

Our lives are worth so much more than we ever realize…..

YOUR life is worth more than YOU will ever realize….

72.365 purpose for the pain & world suicide pr...
I am one of the lucky ones who had family that were constantly reaching out to help me, listen to me, and to love me unconditionally.  When I couldn’t stand on my own two feet I had my parents to lift me up.  I wasn’t judged for who I was or how I felt and I knew that, so it made it much easier to be truthful with how I was feeling.  Between that and the guidance of some earthly angels who crossed my path at the time I was able to admit that I needed help.  I spoke to my Doctor at the time, and got some help.
I won’t say it was as easy as just making the decision to get help – because it wasn’t.  But that was the hardest part for me – admitting to myself and to others than I just couldn’t carry this weight on my own any longer.  I had always found pride conquering life on my own, but as ‘they’ say – No man is an island… me included.
I spent close to two years on an anti-depressant medication while working closely with a Psychologist who specializes in Chronic Pain.  Slowly I began to let go of the fear that was controlling my life at the time.  I let myself grieve over the ‘body’ I once had, and learned to separate THAT from the ME I am inside… The real ME.  Through the process I not only learned to accept who I am – I learned to love myself, something I don’t think I ever did before.
There is a National Movement advertised on Facebook today that I wanted to share.  It is asking that you use your forearm to send a message.  the part of your body that is associated with ‘a way out’ in terms of suicide can become a canvas today to spread a message of hope…. simply…. LOVE.
It symbolizes not only the compassion you have for others, but the compassion we all need to have for ourselves.  LOVE – a simple 4-letter word that has a definition greater than the sum of its parts.
It symbolizes hope….
Hope that tomorrow won’t be as dark as today,
Hope that the pain you feel, both physically and emotionally has a cure,
Hope that one day guns, razor blades, ropes and pills will be used for
what they were intended, and not instruments to bring the end to some,
and to others a lifetime of excruciating pain.

Today please take the time to spread a little LOVE in your life.  No matter how you do it, it is so much more powerful that you think.

And if you are someone who is suffering from depression, or you know someone who is –

Please know that Depression is a very valid and debilitating illness, an INVISIBLE ILLNESS…

And like Fibromyalgia, Chronic Fatigue Syndrome, Diabetes, or Cancer…

The first step is getting a proper diagnosis.

The second step…. is treatment.

Please know that you are not alone.

Pick up the phone, call a suicide hotline, your doctor, or a friend or family member you love and trust and ask for help.

Believe me, it will be the best decision you ever make for yourself.

There is hope.  I know there is.

I am still here.  And I am so thankful for second chances.

Millions of people suffer from Chronic Pain – some is housed in our bodies, but some is housed in our hearts.

And Suicide is NOT treatment for this pain,

LIFE is.

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Oxycontin list

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I read a really interesting article this morning, and wanted to share it with all of you.

There has been so much in the media in regards to the dangers of Oxycontin, one of the most powerful pain killers on the market.  It is now the MOST abused prescription drug, and with that comes fear, stigma, and a LOT of misinformation.  Many Chronic Pain patients are either too scared to try this drug, or they are currently on it but hide that fact from everyone because they are scared of being judged.  But while Chronic Pain sufferers hide from labels such as “addict” or “junkie”, society forgets that there is a very valid place for this drug on the market, and the people who abuse this drug make it REALLY hard for those who have justifiable cause to take it.

Here is a link to a CBC News article published online yesterday.  It suggest that opioid addiction in Chronic Pain sufferers should always be a consideration when prescribing Oxycontin, but in reality it is rare in pain sufferers who truly need to use this drug.  Not only that, but Chronic Pain is often UNDER-TREATED as a result of the Doctors being fearful of prescribing Opiate based medication…  The bottom line is needless suffering.

Although I am NOT a Doctor, and I would NEVER promote taking Opioids to anyone, I absolutely see the benefits.  There are so many drugs on the market today with ‘off-label’ pain management components…. But painkillers are called just that for a reason… They are on the market to assist pain sufferers.  They do not get rid of pain, but they help hundreds of thousands of pain sufferers MANAGE.

They come with associated risks, and EVERY patient should educate themselves on what those risks are, and weigh out for themselves if the risk is worth the ‘reward’ so to speak.  However the stigma that society has placed on people who take this drug has to change.. We are NOT the people abusing this drug… and it is easy to lump us all in the same category.

Please take a look at the article – and take a few minutes to read the through the comments at the bottom of the page.

YES, addiction is VERY REAL.  I will be the first to admit that.  I have had addiction touch my life personally, and I would never wish that kind of pain on anyone… But I also know the pain that comes with being ‘under-treated’ by the Canadian Health Care System.  I can tell you the latter has had a much more profound and permanent effect on my life.

My wish is for every chronic pain survivor to be diagnosed and treated properly… with respect and dignity.

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I have been a bad blogger lately… Sorry that I have been MIA… Life has just been a little crazy as of late.  I will fill you in…

Losing my Nanny took the wind out of my writing sails so to speak.  The internment and graveside service was the beginning of this week, and from what I hear it went well.  I wasn’t able to go. 😦  Another thing in my life that has ended up being a difficult decision to make because of my pain… grrr….

The service was 6 hours away from where I live.  Because of my honey’s work schedule and my little dude starting school this week, had I gone I would have had to endure 14 hours of car travel in a period of 2 1/2 days…. and for as hard as I tried to convince myself that that would be okay, I had voices of reason (my family) reminding me  that I would most likely suffer for a few weeks as a result…. Soooooooo…..  After losing some sleep, feeling guilty, and changing my mind a half-dozen times I decided it wasn’t in the best interest of my family to go.  Blah… Instead I said my own goodbyes… and I am now knitting a beautiful silk scarf on my Nanny’s old knitting needles.  I will think of her every time I pick up my needles…

Life has been CRAZY the past few weeks, trying to cram in as much ‘summer’ as possible and preparing my little dude to go back to school!  GRADE 4 ALREADY!  Where has the time gone?  I clearly remember his first day of kindergarten like it was yesterday… and before I know it he is going to be in Junior High.. 😦  Can someone please slow time down a little?

After 2 1/2 hours of sleep, and a hectic morning – shirt and tie on, hair products in and completely DOUSED in my honey’s cologne 😉 my little dude headed off yesterday to rejoin the masses… Sigh… To tell you the truth, I am a little lost now…

He had an AMAZING first day of school, and I couldn’t have been any happier to see him RUN out of school yesterday with a HUGE smile on his face!  He LOVES his new teacher… LOVES his new friends, and he bounded out of bed this morning at 6:55am to do it all over again this morning.  Life is good in the eyes of an 8-year-old….

And me… well I have been struggling a bit as of late, hence the lack of blogging.. my apologies again… the nerve pain that I have been experiencing this past year keeps getting worse and worse, and I cannot get it under control… and it is driving me crazy!!!  With all the layers of pain I experience every day, the nerve pain is just the icing on the proverbial cake.. I have had enough of this crap, and I get so frustrated that there doesn’t seem to be a solution.

The last appointment I had with my medical ‘team’ didn’t go so well… and I have been angry ever since…. I know it is close to impossible to relate to this journey through pain if you haven’t gone through it yourself. I don’t expect miracles to be performed inside the 4 walls of my Doctor’s office, nor do I expect that any one pill… or a combination of 20 medications will be sufficient enough to take away my pain, but I still have hope that the quality of life for chronic pain patients can and WILL improve… but there are moments in time that I start to lose hope.  Call me pragmatic, or a realist… I try to stay positive, but sometimes it is impossible to keep a smile on my face… I left my Doctor’s office in tears, and I have been trying to climb… white-knuckled… out of the hole ever since.  This is a small glimpse into how my appointment went…..

Me:  I have been taking all of my meds as prescribed guys, but they haven’t been working as well as they should be.. I am STILL taking over-the-counter meds every 4 hours on top of everything else… is there anyway we can look at the dose of certain meds?

Pharm:  Absolutely, what are you struggling with?

Me:  The nerve pain we have been talking about is ten times as bad as it was, and I am getting more symptoms than I was.  there are days that I literally cannot put my feet on the floor because my feet are excruciatingly painful.  I am getting ‘electric shock’ type feelings throughout my whole body, without warning.  And I don’t know why but I keep getting horribly painful ‘goosebumps’ that WHOOSH through my entire body, and I can’t stop it from happening.

Pharm:  Those are all ‘normal’ symptoms of nerve pain, but it is definitely a concern that you aren’t just feeling the burning sensation anymore. Your central nervous system is just hyper-reacting, your sensory system is on overload.  We will ‘up’ the medication you have been taking for nerve pain, and see if it improves… what else do you need help with?

Me:  I am BEYOND tight… My muscles have been hyper-tonic as of late, and I have been taking over-the-counter muscle relaxants every 4 hours  without them I can’t function.  I am concerned with all the other crap that is in them though… I know it is hard on your liver to process all that acetaminophen.  Is there any way that we can think about adding Flexeril into my program, and that way I am taking a more efficient relaxant, and none of the other stuff?

Pharm:  I think that is a good idea.  Over-the-counter meds are not made to be used ‘full-time’, and can cause problems in the long run.  I think it is a reasonable request to add Flexeril, even just once a day or once every 2 days.  It’ll help you manage through this ‘never-ending’ flare.. let me go grab your doctor and we will talk about it. (For those who don’t know, I see a pharmacist who does consultations with my Doctor’s patients.  They work together to help me manage.  Since I am on so many different meds it is CRUCIAL to have a specialist figure out my drug routine)

(Pharm leaves and is gone for 10 mins.. and comes back with my Doctor in tow)

Doc:  So you are still not doing very well Jolene?

Me:  Not really.. I am still struggling…

Doc:  I don’t like you taking all the over-the-counter meds.  You must be really constipated as well?

Me:  I am, laxatives are not even working… but I feel like I have no other option, the pain has been so bad Doctor… (she cuts me off)

Doc:  Well I don’t like the idea of you taking a muscle relaxant period… Have you tried stretching instead?

Me: Sputter.. cough… what?  Um.. (flustered)… I am BEYOND a little tight Doctor…

Doc:  Well taking more pills isn’t always the answer – How about massage?

Me:  Um.. Hello??!!??  I have been doing ALL of that for 5 years now.. stretching, massage, chiropractor, yoga, meditation… doing the hokey pokey as I turn myself around… WTH?

Doc:  Well at this time I am not comfortable prescribing a muscle relaxant, and I want you off the OTC stuff… Try heat and ice, and we will see you in October.. (she leaves the room)

And then I lost my mind, and my Pharm wanted to climb under his desk and hide I am sure….  I yelled (which if you knew me is NOT normal for me).  I apologized after as it isn’t his problem, He is the one who suggested I take Flexeril to begin with, and I know my pharmacist is on my side… But the Doc has the final say… and she said NO.

Number 1)  Saying that I am STIFF is like saying a monsoon is just a sprinkling of rain…  There are days that I cannot WALK because the muscles in my legs are so tight it prevents my joints from moving…. I can’t turn my neck let alone touch my toes… and if YOGA was the answer I wouldn’t be here right now… I’d be working full-time, going to school, living my life, and wouldn’t have ‘time’ to blog…

Number 2)  If the plethora of pills I take everyday don’t help my pain… do you think an ice-pack is going to help???

Number 3)  Those OTC muscle relaxants I take make me feel sick, take away my appetite, make me groggy, make me constipated, and are killing my liver… I don’t take them for fun… I don’t take them because I feel like I don’t already swallow enough pills everyday… I take them because I am going out of my mind with pain… so obviously the ‘plan’ I am currently on is not working… and that’s not good enough…

Phhttt…. Have I tried massage?  WHERE HAVE YOU BEEN?  Do you know how many THOUSANDS OF DOLLARS I HAVE SPENT IN THE LAST 5 YEARS ON NON-PHARMACEUTICAL THERAPY?!?!?  My son may not have a college-fund, but I however have been to Natur0paths, Chiropractors, Massage therapists, Cranio-Sacral Specialists, Herbologists, Acupuncturists… and a few ‘snake-oil salesmen’ – and I have outlived EVERY ONE OF THEM… they all starts out really HOPEFUL and end up telling me to go somewhere else after I have spent the equivalency of a down-payment on a house…

So NO.. I think we are past the point now that a heating pad and downward-facing dog pose is going to help… THE END.

I have been aggressively fighting this past year, and I feel like I am no further ahead…. this time last year I was on 2 meds… I am now on triple that amount… and my pain is no better…. and I am sorry but it is a HUGE slap in the face to be told to go for a massage and stretch… (slaps palm of hand on forehead)… don’t ya think I have been DOING THAT?!?!?!?

I have been licking my wounds ever since that appointment – lying low and trying to make sense of it all yet again….

So that is my life as of late…

How are all of you doing??

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