There’s this screaming in my ear…

My sensors are so unbelievably overloaded, I’m surprised at myself for even offering up the effort that it’s taking to blog this right now. When you’re in pain it’s like having someone beside you, shouting in your ear while you try and process information. It becomes sadly difficult to do things that should be very simple, like listening in conversation – anything you’ve said will most likely not be remembered if I’m in very much pain.  This does make me feel bad, I think that it’s easy for people to interpret my inability to concentrate because of the pain as being a disinterest in them, or what they’re telling me. This is definitely not my intention but it is impossible to do otherwise at times.

When I have an awful headache, like now, I get this unintentional scowl and squint eyed look – all of my face muscles become tense, especially the eyebrow and forehead ones, partly in response to the entire pain itself and partly because looking around hurts. I try my hardest to relax these muscles, knowing that tension can only make the pain worse, but I find that I have to remind myself every few seconds. I found these amazing sunglasses the other day – not style-wise – but because they are super dark, almost too dark to be of any use but when a nasty headache occurs.

My mom and I had to drive to the next town over for one of her doctor appointments today. Well, I came in case she needed me to drive, but in the long run my pain got so bad that I couldn’t anyways – not safely at least. Being in the car is terrible for me pain wise, not to mention the fact that my height makes everything far less roomier than it would for those of average height. The drive is only about an hour and fifteen minutes each way, but that was plenty enough for the both of us. We’ve both been at home recuperating ever since. I find myself again being reminded of the harsh truth in the spoon theory, that a 19 year old can be so physically wrecked by a 2 and a half hour car ride. It’s ironic to think that my grandma fairs so much better than I do while taking on a much larger load, daily.

I’m finding myself in a good mood despite the above. I have much to be thankful for today, starting with the fact that my mom’s appointment went well and we received not an ounce of bad news. I have my own doctor appointment in two days. I want to ask her if there’s something that can be done for the spine pain, a nerve block or something, because what’s being done now isn’t working. My quality of life has been steadily declining very much in large part because of the back pain. I’m terrified of the answer I’ll receive to that question so I’ve been declining to think about it, I’ll find out soon enough anyways.

I had planned to use my camera somewhere along the beautiful drive today but that didn’t quite turn out to be as much road trip fun as I had hoped. So, instead I decided to post a few more from our Ottawa pain summit trip.

The parliament buildings are covered in stone carvings like this one, the detail and sheer man-hours put into them is incredible. I found this one to be the most humorous, perhaps unintentionally. Though, I can’t really see someone carving this out without having a laugh.

This is maybe 1/16th of one of the parliament buildings. I felt like I needed to hire a crane to lift me up so I could take pictures of them properly. They are huge. They were such a sight to see.

A few of the pictures from my Ottawa trip.

I can’t believe it’s already been two months since the Canadian pain summit! I said I’d post the photos I took soon but I just kept postponing hooking my camera up and getting them onto the computer. But, here’s a few that I like, I’m still going through the rest, but they will be up.

This is the awesome view of Gatineau Quebec along the walk around the parliament buildings.

These are the provincial flags lined up on the stage next to where I gave my speech on living with pain as a teenager.

This is just a glimpse of one of the beautiful (and huge!) parliament buildings. I love the old architecture! It’s like taking a trip to Europe without leaving the country!

That’s good to know.

After my wisdom teeth surgery I was advised to start taking my tylenol 3 every 4 hours along with either my muscle relaxers or the anti-inflammatory I was prescribed (rotating them out each time). I’ve mentioned on here before that I generally don’t even take my pain medication everyday unless I absolutely have to – they’re no good for you and my stomach’s got a long time to put up with them yet. But, aside from making the jaw/head/face pain from the surgery bearable, I also noticed for the first time in months that the sometimes excruciating, ever constant pain in my back was almost unnoticeable. It was never gone, but it was low enough that I didn’t think much about it compared to the other body pains. 

Ah, but the assumed catch – as soon as I start weaning back off of the meds and down to my regular doses, the back pain came back with a nasty vengeance. I didn’t even know that it was possible to get it down that low, but it doesn’t really matter because constant pain medication is just not an option long term. So, I kind of wish I didn’t know that. I feel like I finally saw a light at the end of the tunnel but knew that I’d have to turn back and go the other way. How unfair is that. I am thinking about talking to my doc about nerve blocks for the pain. Have any of you tried them? And if so, how did they work and were they worth it?

On a fairly higher note, I can eat again! And the jaw pain (and the general pain of having your wisdom teeth removed) is dissipating. My bruises are almost gone which is good because I was getting a lot of concerned looks at the grocery store. I wanted to walk around with a sign saying that it was from the wisdom teeth. From the glances that I got I think people seemed to be thinking that someone had beat on me a bit! The entire wisdom teeth/jaw healing thing actually went much better than I thought it would. The healing was slower than the norm but I was told to expect much worse. I’m getting a little bit tired of the saltwater rinsing, maybe I need to ease up on it because I’ve been doing it religiously. But I keep hearing disgusting stories about people getting food stuck down the tooth holes and it going rotten. Sick. I don’t want that to happen!

Anyway, I’ve been up forever and I have a bad feeling that I wont be falling asleep any time soon. It’s still a bit early yet but I just have that…feeling, the one that I get when my insomnia is kicking in. I’m going to out of town to stay with my amazing aunty on Wednesday though – a fellow chronic pain sufferer and nocturnal dweller – so I’ll have some good company during my long nights. I’ll tell you more about her later, she’s too much awesome for just a sentence or two.

My posts have been so dreary lately, so, I thought I’d brighten this one up a bit with a picture. I’d have just taken my own colorful picture of the flowers I bought my mom for Mother’s Day, but it’s late and the lighting in here sucks. Maybe I will tomorrow.

The Canadian Pain Summit: Part II

This is part II of my Canadian pain summit experience. Click here for part I.

First thing’s first though, if you haven’t done so already, click this link to endorse a national pain strategy in Canada. Do it, do it, do it. You’re going to be hearing that a lot from me for the next while, and that’s because my future and the futures of many people I love are directly tied to the success of the pain strategy. So, dare I say it again, do it.

After I finished my speech at the summit I was immediately asked to do an on camera interview, and on the way was stopped every few steps by summit attendees, professionals, saying thank you, telling me I’d done well, giving me their business cards and asking me to contact them. I was asked by Warriors of Pain to possibly be a spokesperson for their foundation and was given an autographed book by another writer – a woman also suffering from chronic pain. I felt like a celebrity for a few moments! I was told by two separate delegates that my words were what decided their support for the pain strategy for them. If it sounds like I’m gloating, it’s because I am!

I was also honored to be able to meet Dr. Allen Finley a pediatric anesthesiologist who has worked for 20 years in pain research and management. Now here is the kind of doctor that Canada needs to have in every city, someone who knows and cares about his patient’s pain. He had also done a presentation about the prevalence of pain in pediatrics, after which he came up and asked me what I thought about the speech because I am the type of person he was speaking for and that my opinion was the most important one to him. His presentation really hit home for me, he even said at one point “the teenager in pain, who no one believes”, and I had been there. I had been told that it was in my head by my pediatrician, that I was making it up, trying to get out of school. He’s seen the same thing too many times. He’s an amazing health professional, if I had known him 5 years ago my story may have been quite different. His speech deeply affected my mom too. Especially during the points where he discussed the deep pain a parent experiences when their child is suffering and there’s nothing they can do to fix it. For me though, just having the relationship that I do with my mom and having her there for me the way she is, is more than I could hope for. And whether it cures the pain or not, it makes a huge difference in my life to have that constant support.

I met too many amazingly kind, supportive people to list here. People that will always hold a place in my heart, people who’ve walked the same long road of chronic pain that I have, people who work tirelessly to improve our lives. Not one person I encountered during the summit showed me anything less than pure kindness and compassion. Something, as someone living in the stigma of chronic pain, I don’t normally experience.

There was a running theme presented at the summit, one echoed by many of the presentations we saw: “Access to pain management without discrimination is a fundamental human right“. One doctor who spoke (who I also very much liked) suggested that failing to provide, or denying a patient in pain, proper pain management was equivalent to criminal negligence, and technically should be able to be tried in court. Now, that doesn’t mean we should start bringing our doctors to court whenever we have a bad experience with them, but it does provide vision of how wrong, how inhumane it is to deny someone who’s suffering a means of relief, when possible.

After the summit concluded me and mom gathered up enough energy to walk around the outside of the parliament buildings (just a block from our hotel). I had no idea how huge the buildings were, neither did I know how completely breathtaking they are. I wanted to just sit and stare at them for hours. The detail and the work that must have been put into them, not to mention the history behind them. I took pictures (which I’ll put up soon) but they’re nothing in comparison to the real thing.

As for later that night, I can’t even explain how much I was dreading the trip home. The amount of pain I was in during the trip to Ottawa was unbearable, but this time we had been going non stop for days beforehand, not to mention an extra 4 hours being added in layover time. But, thankfully my pain medications actually did their job better than usual, for once. The trip wasn’t even a fraction as hard as I thought it would be, and I was so excited to get back to the comforts of home. But I was also sad that I couldn’t bring all of the wonderful people I met back with me. I should also mention, I don’t like flying in planes nearly as much as I thought. The trip to Ottawa I spent a good deal of time thinking this was it, we were going to crash. The trip back I felt calmer, I think if I flew more often I’d get used to it. It just feels weird, that humans have the power to get in this huge machine and fly 35,000 feet above the ground. But I will say this, the views are incredible.

All in all the summit was incredible. I learned a lot, not only from other people but from myself as well. I learned that I can do things I never thought I could, and that there is great reward in pushing yourself beyond your boundaries. The summit gave me something I often never have, hope. Hope that maybe one day people across Canada in pain, myself and those I love included, will no longer feel stigmatized by it. Because, like one doctor at the summit said: “what a cruel thing to do to someone who’s already in pain”. I have hope that one day I may be able to lead a semi normal live, and receive the proper pain management. And lastly, hope that no other young person, no other person period, has to go through what I did, while trying to get help.

I’m extremely thankful to have been able to experience the things that I did during the summit. To be reminded that there are people out there who understand and who care. And that they’re working hard to improve our lives.

The Canadian Pain Summit: Part I

I know that I said I’d write about my experience at the pain summit in Ottawa yesterday but I lied. I ended up having a rough day and going to bed super early, so, here I am, and I’ll write about it now.

I’m splitting this post into two parts because I have a lot to say that’s important and I know that sometimes when a post is too long interest wanes. Click here for part II

First thing’s first though, if you haven’t done so already, click this link to endorse a national pain strategy in Canada. Do it, do it, do it. You’re going to be hearing that a lot from me for the next while, and that’s because my future and the futures of many people I love are directly tied to the success of the pain strategy. So, dare I say it again, do it.

For those of you who don’t know, the goal of the pain summit was to help invoke a national pain strategy in Canada. To learn more about what that is, and what it would achieve click this link. Having a national pain strategy in Canada is a huge deal. As someone living in pain everyday I can honestly say that I didn’t even know how big of a deal it truly was and how many people it would positively impact until I came out of the summit. It would mean far better access to proper pain management for all Canadians – babies, children, war veterans, the elderly, fathers, mothers, on and on – suffering with chronic pain (1 in 5, equaling approx 6 million). 

The travel to Ottawa was long and nearly unbearable. There was absolutely no room for any movement on the plane (especially for someone as tall as me), and I had to sit in pretty much one position from 6:00 am to 6:00 pm. By the time we arrived in Ottawa my right hand was covered in self inflicted blisters – anything to distract myself from the horrible pain in my body and I was seriously wondering what I had gotten myself into. The way you think things will be, and the way they actually feel when you’re in pain, are entirely different. I had delusional visions of sitting through the entire pain summit, – the day after the long travel to Ottawa – and then walking 20 minutes to a museum, spending a couple of hours there, and walking 20 minutes back to our hotel. It’s safe to say that a couple of hours into the trip I began to realize how ridiculous that notion had been. Things are never as wonderful as you think they’ll be when you’re in pain – that’s just the way it is. I was missing home straight away and wishing I had never left in the first place, I was also having anxiety attacks about doing my speech in the morning (don’t worry this gets WAY better and I’m not being sarcastic). You just wish for the comforts of home and your own bed and not having any commitments – another luxury of living in pain (by the way I will be saying the P word a lot before I’m done this post).

Anyways, we (me and mom) briefly attended the welcome reception and got to meet some of the fantastic members of the Canadian Pain Coalition and Canadian Pain Society that I had been corresponding with via email the past few months, as well as some other wonderful people – some also living with chronic pain. Everyone was very understanding about us leaving so quickly to go back to our room, they knew what a long day we’d had and that we needed a break.

The morning of the summit I was a nervous wreck. When I walked into the ballroom and seen all of the people – delegates, doctors, scientists – that would be watching me and listening to my speech, I was literally ready to burst into tears, and quite angry at myself for getting myself into that situation. There were a few things keeping me from running away and quitting; first, I knew how important it was for me to tell my story, especially the bad parts of it, because people need to know what millions of Canadians are facing. Second, I wanted to force myself out of the box that I crawled into when the pain started. I’ve spent so much time there because it’s easier, that I’ve started to forget that there’s a big wide world out there, whether I’m in pain or not.

The presentations and speeches that I heard during the summit were phenomenal. They were also hard to listen to, only because of the fact that it’s like hearing your same sad story echoed by so many other people. The sheer similarities in story after story compared to my own were unbelievable. It was bittersweet – knowing that I’m far less alone than I often feel, while at the same time knowing that there’s so many others out there fighting the same hard battle. As for my own speech, the reaction I got was unbelievable, even at this moment I can’t quite wrap my mind around it. Because I was so nervous I sort of went on autopilot during my speech, when it was over I couldn’t even recall saying a huge chunk of it. But the first thing that I really registered was the fact that everyone in the room was standing – I received the first and only standing ovation of the entire summit. I was amazed, and so surprised and in the end so proud of myself, not only for the step I took for myself and other people suffering with chronic pain but for the fact that I proved to myself that I could do it, and that I could step so far out of my comfort zone.

I’ll post the rest of the summit’s events tomorrow. The best is yet to come! & pictures of the beautiful parliament buildings and our unbelievable hotel will be up as soon as I’ve had a chance to go through them.

Off on an Adventure

Not that I’ve been posting much lately (sorry, nothing remotely interesting has been going on in my realm of the world), but just wanted to say that we’re (me & mom) off to Ottawa. Well, technically we’re off to PG for the night before catching our insanely early flight to the big O. It’s supposed to be rainy, miserable picture taking weather but I’m seriously hoping I can get a decent shot of something. I’m really excited for the pain summit and to come back here and let you know some of the things that I’ve seen and learnt there.

I’m also super nervous about my speech. But these things are never as scary as you think they’re going to be…right? I’ll post it on here when we get back. So far everyone’s been really supportive. And, I’m speaking as a youth living in pain, so it’s not like they’re expecting an Obama-worthy speech. But it’s not the words I’m worried about, I feel really confident about what I’ve written. It’s the delivery that really freaks me out. I can’t tell you how many times I’ve been told to picture the audience naked in the past few days. A terrible suggestion, I might add. Instead I’m going to do one better and not wear my glasses. Then I won’t be able to see the audience, perfect.  

In typical me fashion, I haven’t slept yet today. But oh well, I suppose there will be time for that when we get to the hotel this afternoon, maybe even during the car ride, if I’m lucky. Our schedule is super packed during the short three day trip. I’m worried about how my body’s going to take it; sitting in the car, sitting on the plane, layovers, presentations. Yikes. I hope the pain doesn’t dampen the experience. 

I get so easily overwhelmed now, half of me wants it to be over already. But I know this is a once in a lifetime, amazing trip/opportunity and that it’ll be worth every minute of it. Plus, I get to speak out about something that’s had a huge impact on my life, and hopefully be a part of making the lives of other people in pain a little better.

So, deep breaths and wish me luck!

It’s Always the Eyes

We basically just finished getting set up for my yearly[ish] trip to Vancouver Children’s Hospital for my echo in June. We had our Shriner’s bus schedules and Easter Seal hotel rooms all settled and good to go and my appointments booked. But, as goes pretty much anything to do with my eyes -they ruined the plans again.

There’s a stitch sticking out of my right eye (I know eww right? But it only looks like a tiny red dot above my iris, under my eyelid). It’s majorly scratching up the inside of my eyelid and my eye, so, we need to go get it lasered off asap before it does any real damage. I’m a bit uneasy about the entire thing. This will be the third or fourth stitch I’ve had lasered off or pulled out since my last surgery. Number one, after 7 surgeries this is the first time I’ve ever had any problems with stitches and number two; said stitches are what’s helping hold my lens in place so I don’t like the prospect of possibly making my lens dislocate – yet again.

Anyway, we’re (me and my mom) heading to Vancouver on Sunday now and luckily everything with my cardiologist and echo worked out so that we can just make this trip instead of both this one and the June one. So, I guess all in all it worked out pretty good. We’ll head out on Sunday and come back on Wednesday.

A big thanks again to the Shriners bus people who for the millionth time are taking us on the 8 hour trip to the city for free. And another thanks to the Easter Seal House who’s made these trips much less of a financial burden, again, for the millionth time.

P.S. – Happy Birthday to the world’s best mom. I love you and can’t even begin to imagine what I’d do without you. xoxo