There are days.

Broken Flower

There are days in life that have the potential to permanently alter the course of your future for the better; days that could make some of the things that you live with easier from that point onward; days with the ability to get the ball rolling towards some positive, long overdue change. Yes, there are days like that.

But sometimes those days instead end only with missed opportunity; another lengthy appointment with disappointment, and another added mark on your overflowing wall of let downs and discouragements. Those days that, instead of giving you a piece of your life back – no matter how small – end with you being left to go back and suffer endlessly, in the same painful reality, once again feeling defeated and abandoned by the only people with the power to truly make a difference in your life.

The 8 long months leading up to that day passed me by in slow succession: cloaked in a bleak and melancholy air that hung heavy over and all around me. The weeks were almost entirely marked only by the increasingly debilitating and all-consuming pain in my lower spine that brought about the need for that day in the first place. Things were consistently deteriorating right before my eyes, and I was frighteningly often struggling desperately just to pull myself out of bed each day.

While time passed and I waited, I forced my mind not to linger too long or too often on the possibilities of that coming day, which sadly – experience has taught me, over and over – would most likely end in the exact disappointment, frustration and – should I allow it – devastation, that it did. Or, worse than letting my mind focus on the fear of things ending badly, I couldn’t let the hope in. If you have hope it only hurts so much worse when that hope is shattered. I couldn’t take the crippling pain of getting your hopes up and then having them destroyed, on top of everything else.

But, I did get my hopes up a bit – I couldn’t help it, it’s all that I had to prop me up. And so, as hard as I tried not to let it, some hope did manage to find it’s way in. But, I think that was what had carried me these last months through all of the pain: that little bit of hope that maybe someone was about to help find a way to lessen it for the first time, and that maybe this person would finally be the one. My fears about hope ended up being perfectly reasonable in the end – despite not having all that much of it to begin with, it was still a devastating thing to have and then lose.

I’m back at home now, back to my reality, and that day has gone and passed. The pain continues on in the same ever-worsening way that it has for the past 10 years – exactly one half – of my life, while my body continues to fall apart in a constant string of new and unexpected ways. And that day is ever further behind me, without having given me anything to help carry me forward. And now? Sometimes, I don’t know how I’m going to be able to. But yet, somehow I always do.

Sorry it’s been so long again, things have been tough.
Lots of love to you all. ♥

-Katie

Struggling & Taking Notes From an Oak

Note: this is a bit of an old post/journal entry, re-worked to explain how I’ve been feeling lately. I know I’ve been absent and as the title suggests; it’s because I’m struggling. With pain, with sleep, with figuring out my purpose in life.
That being said, I do miss you all dearly and hope to be back regularly soon. Don’t give up on me yet.

Much love to you all. ♥
-Katie

oak

Resilience is an intriguing thing. It can be exceedingly difficult to come by while simultaneously appearing in places – or people – you’d least expend to find it. The way I see it, there are two basic avenues to take when handling tragedy and hardship (though, many facets here and there and in between); you shut down, break down and never truly recover; or, you grieve, accept and move on. I’d like to say that I have always chosen the latter, but in all honesty, I often find myself stuck between the two; fighting to find a balance without falling into nothingness. This often leaves me suspended, neither shutting down or moving on. Sort of just drudging my way through life.

I find myself oddly nostalgic now-a-days, and I say oddly because I always pictured nostalgia and reminiscence to be had many years later in life, when so many things have happened and so much life has been lived. Yet, when so many of my peers are living the brightest days of their lives and finding their places in the world, I instead remain vastly lost and stunted, wrestling with myself daily for the will to keep fighting for a life that has taken me places I never, ever wanted to go. I have no plans in regards to my future, no idea which roads to turn down or even how to get to them. One thing I don’t plan on is feeling this way forever. I hope – in fact it may be the very thing keeping me sane – that eventually the bitterness I feel, the sadness and the hopelessness, will depart and leave me more able to live this life. The physical pain is debilitating in many ways and that’s not going to ever truly go away, but my emotional pain is just as, if not more so, crippling in nature.

It’s odd to be writing about myself in this way. Through my words I could come to recognize myself as some angry, bitter, miserable thing to be around but in truth that’s not what I’m like on the outside and not hardly entirely how I feel on the inside. I love, I laugh, I feel the joy when it’s there to feel – at least most of the time. And my internalization of my feelings – if you can even call it that once it’s been written and made public – is what allows me to do so. I can keep the bad to myself for the most part, while still being me to the best extent that I can manage.

You’d think that keeping so much to yourself would cause you to burst, and there may yet come a time that I can no longer keep these things in my head. And every once in a while the flood gates do begin to part and I’m no longer able to carry on as if nothing’s wrong. These are the rare occasions that I lose it. It being my reserve, and have a bit of a nervous breakdown. It always seems to happen the same way; a negative event will trigger it and once the tears begin flowing there’s no going back. I turn into this shattered, weak, shell of myself. Broken beyond what I feel is even remotely repairable. There’s no going back are the whispers of the thoughts that manage their way in through the grief, I can’t do this anymore. But, such is the intrigue of coping; once I’m able to pull myself at least adequately back together, things seem to hour-by-hour or day-by-day transform back to the way they have been, and I carry on.

“The strongest oak of the forest is not the one that is protected from the storm and hidden from the sun. It’s the one that stands in the open where it is compelled to struggle for its existence against the winds and rains and the scorching sun.”
– Napoleon Hill

The minutes pass like hours.

Nightshade by Marc

Well my dear readers, today has been one long miserable day to say the least. I woke up at around 5:30 am or so with my signature headache and the overwhelming urge to vomit. I hadn’t hardly had anything to eat so there wasn’t really anything to vomit up but the waves of intense nausea and stomach spasms kept coming. This cycled on about 3 times, at once per hour and every time was worse than the last. Please make it stop; please don’t make me dislocate anything are the thoughts that kept running through my mind.

I never thought I’d miss my old headaches. But, to have a headache that’s so severe in it’s throbbing and overall pain that just turning my neck makes me cry out, then having to run to the bathroom and then traumatize my body with the vomiting that follows, is just about as miserable as it gets for me. And to make it even worse, I can’t keep anything down so any type of pain relieving medication is off of the table.

I was only finally able to take my medication a bit ago and every inch of my body was screaming at me for it. My headaches never used to come with nausea at all and now all of a sudden every severe headache I get the nausea isn’t far behind. I’ve thrown up more in the past 2 years than I ever had in my entire life.

I’m so relieved that it’s eased off now. The nausea has lifted and the headache is more background noise than anything. I always feel so exhausted and kind of hung over after these episodes, so I’ll probably be in bed early tonight.

Thank you for listening and much love.

xx

-Katie

Up and about.

Stunning picture taken by Jim Greer @Flickr

Hi to all of you beautiful people. Sorry that it took so long for me to update, I’ve still been having a pretty rough time pain-wise. That being said, my pain medication was upped last week and since then it’s been getting a bit better. Yesterday I was even able to go buy some (desperately needed) new pairs of pants after my doctor appointment. It feels good to accomplish things – no matter how small – after barely being able to make it out of bed for a week.

I’m hoping that things will continue to improve and I’ll be able to lower my medication back down soon. For now I’m mostly just biding my time until I can see the neurologist and maybe get some treatment options for my spine.

I want to say thank you, again, for all of your wonderful comments and emails of support. You all have such amazing, kind hearts and you really do mean the world to me.

Sadly, I haven’t been able to do too much drawing lately but I have started a new piece that I’m really excited about. I’m trying some new things with it and attempting to use my prismacolor markers. On that note, I got a new OTT-Lite lamp with a magnifying glass and I must say, looking through it is like looking into a whole new world! As most of you know I don’t have very good eyesight but with this new lamp I can actually see what I’m doing on an entirely new level! I didn’t know just how poorly lit my work-space was before now.

It’s really nice to have a hands-free magnifying glass too. Before I would just have a pencil in one hand and the magnifying glass in the other which is a bit of a pain when you need your free hand for other things.

I’m not going to post any pictures of my new drawing until it’s all done. I want it to be a surprise. :)

Much love to all of you.
And thank you for everything. xx

I’m tired…

More Dead Flowers by Bill Gracey

I’m tired of leaving my doctor’s office and coming home to the reality that I’m still going to be in loads of pain all day everyday.

I’m tired of waking up every hour of the night and realizing how much I’m hurting and how hard it will be to fall back asleep like that, only to do it all again in an hour.

I’m tired of finally believing we’ve gotten somewhere with my pain management, only to soon realize that I’m basically where I started.

I’m tired of being given all these fantastic ideas on different types of exercise that can actually help those living in chronic pain, while instead I’m being left in so much pain that I’m not sure how I’m going to make it out of bed at all.

I’m tired of getting up each day and not having the slightest clue how I’m going to make it through the entire day, never mind how I could possibly enjoy doing it.

I’m tired of knowing that someone who doesn’t suffer like I do 24/7 is the one who has the power to make my life more bearable, but doesn’t.

I’m tired of doctors who think that only treating “about 30%” of my pain is enough, when I’m only 20 years old and will have to spend everyday of the rest of my life with it.

And most of all, I’m tired of fighting so hard for so little.

Pain in Canada and the need for a national pain strategy.

First off, I want to thank all of you for your support during this National Pain Awareness week! I’m thrilled to say that Brittany’s story – deservedly –  brought in the most traffic I’ve ever had on this blog! Go Brittany!

Now, back to the reason I’m blogging tonight. I know that I’ve posted some of the following facts from the Canadian Pain Coalition before but here they are again (just as they appear on the website) for my new followers and those of you who haven’t seen them. It gives some startling insight into just how many people are directly impacted by chronic pain in Canada alone.

Pain in Canada Fact Sheet

• Although we have the knowledge and technology, Canadians are left in pain after surgery, even in our top hospitals
• Only 30% of ordered medication is given, 50% of patients are left in moderate to severe pain after surgery and the situation is not improving (Watt-Watson, Stevens et al. 2004; Watt-Watson, Choiniere et al. 2010)
• Growing evidence has identified that many common surgical procedures cause persistent post-operative pain that becomes chronic (Kehlet, Jensen et al. 2006)
• Pain is the most common reason for seeking health care and as a presenting complaint accounts for up to 78% of visits to the emergency department, recent research continues to document high pain intensity and suboptimal pain management in a large multicenter emergency department network in Canada and the United States (Todd, Ducharme et al. 2007).
• Uncontrolled pain compromises immune function, promotes tumor growth and compromises healing with increased morbidity and mortality following surgery (Liebeskind 1991)
• One in five Canadians suffer from chronic pain, children are not spared and the prevalence increases with age (Moulin, Clark et al. 2002; Schopflocher, Jovey et al. 2010)
• Many cancer and HIV survivors have greater quantity of life but unfortunately a poor quality of life due to chronic pain conditions caused by the disease or the treatments that cause irreversible damage to nerves (Levy, Chwistek et al. 2008; Phillips, Cherry et al. 2010)
• Chronic pain is associated with the worst quality of life as compared with other chronic diseases such as chronic lung or heart disease (Schopflocher, Jovey et al. 2010).
• Chronic pain costs more than cancer, heart disease and HIV combined. Estimates place direct health care costs for Canada to be more than $6 billion per year and productivity costs related to job loss and sick days at $37 billion per year (Phillips and Schopflocher 2008; Schopflocher, Jovey et al. 2010)
• People living with pain have double the risk of suicide as compared with people without chronic pain (Tang and Crane 2006)
• A recent review of opioid (narcotic) related deaths in Ontario, identified the tragic fact that pain medication related deaths in Ontario are increasing and that most of the people who died had been seen by a physician within 9-11 days prior to death (emergency room visits and office visits respectively) and the final encounter with the physician involved a mental health or pain related diagnosis. In almost a quarter of the cases the coroner had determined that the manner of death was suicide (Dhalla, Mamdani et al. 2009)
• Veterinarians get 5 times more training in pain than people doctors and 3 times more training than nurses (Watt-Watson, McGillion et al. 2008)
• Pain research is grossly under-funded in Canada (Lynch, Schopflocher et al. 2009)

Here are a few things that you can do to help:
Find your member of parliament and write them about the significant public health issues chronic pain in Canada presents.
• Volunteer with the Canadian Pain Coalition, click here to learn more.
• Spread the word about chronic pain on social media.
• Hang informative posters in your local doctor’s offices and hospital lobbies.
• Ask for permission to operate an information booth at your local hospital.
• Contact your local paper about doing a story on chronic pain in Canada.

Call to action

We haven’t yet been successful in getting the federal government to implement a national pain strategy in Canada – the main reason behind the Canadian Pain Summit. But, with continued effort, hopefully we’ll be able to accomplish this in the near future. The pain strategy aims to improve and target 4 key areas in relation to chronic pain: awareness and education; increased access to best care practices; enhanced pain research capacity; and ongoing monitoring of delivery of care, patient experience, quality of life and level of function. 

Clearly, there are so many things that need to be addressed in order to improve the lives of those with chronic pain. It’s a very complex problem and it’s not going to just disappear with a few simple fixes by a few specific people – it’s so much bigger than that. But, I can say having met some of the members of the Canadian Pain Coalition as well as Sandy Smeenk of the ILC Foundation, that we are extremely lucky to have such dedicated, compassionate and hardworking people out there, fighting so tirelessly to make change. I can’t even begin to thank them for all that they have done and continue to do for not only me but all of us.

I never could have imagined just how much sending in that essay to the faces of pain writing contest would forever change my life. If I hadn’t done so I never would’ve met all of these incredible, life changing people.

Brittany’s Story

I’m really excited today to feature a guest post by Brittany, an incredible young woman (and fellow Canadian!) who has Ehlers-Danlos Syndrome, in honor of National Pain Awareness Week. I was first connected with her through the amazing Sandy Smeenk of the ILC Foundation and have been lucky to have her in my life ever since. She does a lot for other people living with chronic pain and has been a deeply cherished source of support for me.

Brittany

My name is Brittany Crichton and I am 24 years old, living with Ehlers-Danlos Syndrome and the many other complications and side diseases that come along with it.

It’s hard to say how my pain started because I always remember it being there. I remember people always giving reasons for it like maybe it was from gymnastics, it’s just growing pains, etc. As I talk about the topic of pain with my friends I realize that I can’t remember a day that I’ve woken up and not been in pain, or had my pain level lower then an 8 out of 10. I can’t remember what my life use to be like, and it is sad that this has become the norm for me.

From the age of 18 my symptoms got progressively worse, and at the time we had no idea I had EDS. I went from hospital to hospital, doctor to doctor and had thousands of tests done only to be told they had no idea what was wrong. It was so hard trying to explain to doctors what I was feeling, and for them to brush me off or just send me to another doctor because they did not want to deal with it. Finally, at the age of 22 my family and I made our way down to the Mayo Clinic in Rochester Minnesota and was finally diagnosed with Ehlers Danlos Syndrome.

It is hard for people to manage my pain because I do not absorb pills like a normal person, so it takes a higher dose to make a dent and nothing makes an impact or is able to take the pain down. It was very hard work but I have finally learned to cope with my pain being at an 8 everyday thanks to physio and my naturalpath. When my pain does escalate that is when I have to go to the hospital to help get it under control.

My life has dramatically changed since I started getting more symptoms and the diagnosis of EDS. The life that I wanted isn’t the life that I can have. I wanted and had my dream career only to have it taken away. I cannot go out and go to a party with my friends without suffering major consequences for it. There are times when I think is this really my life, why am I still here living in a life like this? But then I stop and think, I am glad it is me and not anyone else in my family, or my friends because I know I can handle it.

At first I was seeing all of the negatives that came from this disease, but then I had to look at it from a different angle; look at the amazing people I’ve met from having this disease, people who have the same disease and can relate. I am making a difference in the next generation of children living with chronic pain and rare diseases, and if I didn’t have Ehlers who knows who would be doing those things for these kids. EDS has changed my life but it’s not all bad. That is why I started my own website to show that; yes, even though I’m living with this painful disease, there are good things that can come from all of the bad if you look at it from a different angle.

Peer support is very important and I am getting in contact with people all over the world and it’s amazing. I am so thankful for that, and thankful because I would have never have been in contact with Katie Robertson otherwise.

So remember on those painful days reach out to others who feel the same way and who are going through the same, because we are all here for each other.

Click here to visit Brittany's website.

You can visit Brittany’s website here and follow her journey through her blog here.

Hello November and Pain Awareness Week!

November snow by Anil Reddy

Hi everyone! Sorry it took me a week to post! Today is the start of “National Pain Awareness Week” here in Canada. I’m hoping to feature some guest posts from other individuals who live with chronic pain in order to raise awareness (anyone who’s interested can email me katie.robertson@live.ca). I’m also going to be re-posting from my Canadian Pain Summit trip and speech and talking a bit about how things have started to changed here following the summit.

I finished the poster I’ve been working on for the ILC Foundation tonight. As far as I know they plan on publishing it to coincide with awareness week. I’ll be putting it up on the blog as soon as I can. I’ve got a few drawings here to finish up and then I’m hoping to blog a drawing challenge that I found. It sounds like loads of fun and I’m really looking forward to it.

As for how life is, this past week was pretty unpleasant. I’ve spent most of it with a horrible headache and the accompanying nausea. Most of the time all I feel like doing is laying down but my back disagrees with that notion. A few days ago one (or more) of my ribs dislocated, much higher up than usual. I could still bend where as when the lower ones are out I can’t. But, this one being so high up made it unbelievable painful to breathe. It almost ended with a trip to the hospital but that usually doesn’t do much good so I just tried my best not to breathe too hard or move the wrong way. It seemed to make something in my shoulder and collarbone go out a bit as well. Or maybe everything was just spasming because of the rib. Lucky for me the dislocation only lasted about 12 hours this time instead of the couple of weeks it took to go back in last time. I’m really grateful for that. 

I had an ultrasound last week on my gallbladder, kidneys, liver, pancreas, appendix, bladder, stomach intestines and aorta. i’m not sure what the majority of it was ordered for apart from to check on my gallbladder polyp but I’m glad my doctor’s checking on things. I haven’t heard back from them so I’m hoping that’s a sign that everything looked good. The ultrasound itself went alright aside from my ribs not taking it too well and the technician telling me that “pain is good because it lets you know you’re alive” when we were discussing my chronic pain. I’m going to venture to guess that whoever first uttered that phrase hadn’t experienced a whole lot of suffering in their life. Oh the things I wish I’d said in response!

Anyways, happy November to you all! Hope your October was enjoyable! xx

Medication update.

Sun peeking through a perforated leaf by mhx

Well I’m relieved to say that the doctor appointment went really well. She was completely understanding about the amount of pain that I’m in and how difficult it’s been. She also said that as far as pain medication goes codeine is near the bottom of the list in regards to it’s strength and efficiency in managing chronic pain. She had said that she wanted to take me off of it and put me on Dilaudid instead. I do usually have some dilaudid on hand for unbearable pain and it works really well on my back. The bummer of it is that it makes me so sick and gives me such bad rebound headaches that taking it everyday sounds just as unpleasant as not.

So, instead she wants to try me on extended release morphine to see how and if that works. My body can be really difficult when it comes to medication so there is a chance that I won’t be able to tolerate it, but fingers crossed. I have another appointment next week to see how it’s working and talk about alternatives if it isn’t.

I’m a bit sad that I’m at a place in my life where a pain medication like morphine is needed. But I’m also very relieved at the prospect of life being more livable again, and afraid that it’s not going to work. The extended release medication sounds like a huge improvement to me. Not only is this stronger but it lasts longer so that maybe I can function properly during the day and start getting some sleep again at night.

Overall, I’m feeling really hopeful right now. Maybe I can get my life back a bit. :)

Hugs everyone. xx

Doctor appointment day.

gloomy forest by gorchakov.artem

Things change today, one way or another. I’m starting this post before my doctor appointment, I’ll post again afterward so I can blog about how it went.

I’m not as gloomy about the thought of upping my medication as I have been. I guess the pain is just too much now that it makes me feel option-less. Just getting through the day lately has been an enormous challenge and it’s exhausting. I wake up in the morning after another largely sleepless night and feel utterly melancholy at the thought of doing it all over again.

I’ve been spending most of my days this week sitting, hunched over forwards, because it’s the only way I can lessen the pain in my back. Of course it’s uncomfortable in a dozen other places but it’s the best I can do right now. I can’t stand very long at all before the pain is nearing unmanageable. 

Thanks again for all of your support! It really does mean the world to me. I’m hoping things turn around soon, I’m tired of the negative posts. I’d like to have something happy or uplifting to say! Hopefully soon, yeah? :)

Note: I know I just posted this song (with it’s official video) but afterwards I found this amazing animated version by an incredible artist named Ryan Woodward. I love it!!