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Posts Tagged ‘Medical Specialties’

 

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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To my Doctors office that is… 4 appointments in four weeks starting today…. Sometimes keeping my appointments feels like a full-time job.

Maybe I should just move in? *note my sarcasm….

I just don’t feel like I am getting anywhere lately.  It is two steps forward, two steps back… two steps forward, two steps back…. I am doing an intimate dance with my pain everyday.  It pushes me, I push back… and like I tell my little dude all the time – someone has to be the bigger person and end a bad situation.  If he was having an argument with one of his classmates, I would tell him that it will go on forever unless someone ends the cycle… Funny that I cannot take my own advice at times… I need to end this vicious cycle I have gotten into with my pain, but I get to the point where I don’t know what else to do BUT react every time the pain picks on me.. it pushes me… I push back…

My meds haven’t been working for a while now, and I have been taking over-the-counter meds in between all my  other meds to try to take the edge off… and those don’t work either.  I am not going to start playing pharmacist at home, so I am going to stop taking drugs of the over-the-counter variety and try to trust in the process… which is really hard to do when you are in desperate pain.

My Doctor is compassionate as she speaks with me, but I don’t know if she truly understands what it is like to live this life.  How can she?

My Pharmacist is sympathetic when he talks to me, even when I raise my voice and form clenched fists in frustration.  He truly wants to help, and I am sure he gets frustrated when he can’t.

‘BUT THIS IS CLEARLY NOT WORKING!’ I am trying to vocalize through tears… this pain is too much.. and I am tired.. and I need relief… And NO, I am not depressed, I am ANGRY… I do my best to live the most balanced life I can, but I am human.  I accept this is my life, but can’t I have moments of resentment and rage?  Isn’t that better than being complacent and unaffected?  At least I am letting myself FEEL… and then when the cork is out, and all the contents spilled.. I will pick up and start again.

Sometimes I wish I could just move right in to my Doctor’s office, so she could get a better picture as to what this life is like at times… I know nobody can walk in my shoes, but I wish they could, if only it would give them a glimpse of what living gracefully with agony feels like.  Sometimes ‘Grace’ isn’t in the equation.  Sometimes I have UGLY moments… Sometimes this pain would be too much for anyone to handle – not just me.

Sigh…

I have 3 more appointments booked between now and December 1st….

I hope my next appointment is a little less frustrating.

I hope to be much more “Graceful” next time….

**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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English: A selection of knitting needles Dansk...

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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??

**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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