Unwell

I’m in KL staying with my aunty. I won’t write too much about it right now but to say that I’m extremely home sick. Being away from the comforts of home has just reminded me of how unwell I am. Not physically per se but mentally.  There are so many horrid, intense feelings that I’m going through that I just don’t even understand. I feel unhinged. And it has nothing really to do with where I am, and it certainly has nothing to do with my aunty, who I adore. It’s more of a magnification of feelings that I spend my time numbing at home. It’s harder to do that when you’re out of your element, so you end up being forced to sort of deal with them for a bit. Things should start to get better the longer I’m here. At least I hope they will. 

Apologies, sort of.

Maybe I am sorry,
For all of the things that I said.
It’s been hard for me to think straight,
But the night does clear my head.

It’s different, being lonely,
It’s where I feel at home.
Sometimes your presence scares me,
Because I’ve spent so long alone.

I’d drag you through the kicking and screaming,
But I’ll always be the same.
Trying so hard to keep you out,
Because I’m the one to blame.

Maybe I’m not meant for this,
It’s always you that’s trying.
You could take my word, “I can change”,
But it’s my lies you’d be buying.

The best thing I’ll ever do for you;
Close the blinds and lock my door.
Maybe one day you’ll understand,
I just couldn’t hurt you anymore.

©

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.

Social Anxiety?

I’ve been dealing with my psychological[?] (not sure what term to use) issues in stride and I feel like I’ve been making some progress, even if I am doing it on my own. Sure, I still have all of the problems that made me seek help in the first place, but my episodes of major depression and mood swings seem to be mellowing out. They are still very much there but they just seem to be…less, somehow. It doesn’t seem to be happening as often and they’re often not as severe.

That being said, I have social issues. Period. End of story. I have a hard time with people, so often I find them so…petty nowadays, superficial. Anyways, lately I’ve been having a really hard time with family visits. Whether it’s a family member from out of town or one of the ones that lives here, I just find that, I’ll feel like going to visit – getting out of the house and whatnot – and I’ll have a fine time while I’m there (most of the time) but when I get home I just come crashing down into this miserable state of depression and maybe some anxiety too.

I often have a hard enough time making myself leave the house and socialize and this is making it even less appealing. I put a question mark at the end of the title of this post because I’m not really sure what that is or what to call it. Social anxiety doesn’t really seem to fit because it’s not so much anxiety as it is depression. And it’s not happening before or during the socializing part. I imagine this is the kind of thing that you’d talk to a therapist about, if there was one that I could talk to, that is.

I don’t really know how to describe the feeling, I don’t even understand it myself. The best I can come up with (it feels odd analyzing myself) is that I feel this emptiness, or this inadequacy, like nobody understands me. I know, teenage angst at it’s best. But, it’s like taking myself out of my shell and my isolation, somehow makes me feel all the more lonely. And there is definitely anxiety, the more I think about it the more obvious it is. Fear of being judged, making a fool out of myself, not being good enough. It all ties into the things I just listed, about not being understood. I often feel like my disorder and my pain has warped my world into one that no one else lives in, one that no one else can relate to. My priorities, my thoughts on life and my minute by minute is something so completely different to them, and their’s to me. They think about work, friends, plans, whatever it may be, and I think about whether or not to take my pain meds today, if I’m going to need surgery soon, how much worse the pain might get before I can’t take it anymore, whether I might need to go to the hospital or not, if I may actually be able to sleep tonight. There is not even a hint of overlap with my life and the lives of many of the people that surround me.

And, I’m in no way saying that those people are doing anything wrong, I don’t want to be coddled or babied. It’s not about them and their actions at all, it’s about me and my issues. So far, I’ve just been attempting to force myself into these situations. If a relative comes into town then I more or less make myself go with my mom when she visits them, no matter how much I may not want to deal with the return home afterward. I didn’t think I could become much more of a hermit but I think it is possible.

“The greatest mistake we make is living in constant fear that we will make one.” – John C. Maxwell

Post-Op Update

Well, it’s me. My surgery went pretty much according to plan. My dentist extracted all four of my impacted wisdom teeth. He was amazingly careful and thoughtful when it came to my jaw and all of the problems that he knows I have with it. Thank goodness, because even with all of the precautions he took I’m in a ridiculous amount of pain.

I can barely open my jaw wide enough to stick the pills I was prescribed in my mouth. This is one occasion that my over bite is working in my favor, without it I don’t think I’d be able to get anything in it at all. I’m to eat only mush-like food for the first week (yum…) and even that’s causing me a lot of grief. I can’t really talk so texting is coming in handy at the moment. My dentist said that after a few days if my jaw feels ready I should start light physiotherapy on it. He numbed it during the surgery so that it would stay numb for the first 4-6 hours after I woke up, which was also probably very helpful pain-wise. Once the freezing wore out though, it was highly unpleasant. 

My dentist had to cut two of my wisdom teeth into tiny pieces to get them out. Stitches were put in all four areas so I don’t have to worry too much about them bleeding. My nose is a mess from the tube they put through it and down into my throat. My nose wouldn’t stop bleeding until later today. Cold water and things feel lovely on my mouth and throat.

I’ve been instructed to follow an ice on, ice off routine. 20 minutes with the ice on my jaw, 20 without and so on, all day. It’s a pain in the butt but the ice feels good and it’s supposed to make quite a big difference. They didn’t have to do the catheter and I didn’t have any urinary retention afterwards (yay, but odd), so that was good. As soon as I was fully awake in the hospital I just wanted to go home and sleep. I’m in a lot of pain, but compared to the last surgery I underwent it’s nothing. I’d say this pain is about a 6 or 7 compared to the 8 or 9 that I had after my last eye surgery. But still, even a 3 out of 10 is unpleasant so, I’m definitely not walking on sunshine.

There is humor to be found though. I can’t look in the mirror because it makes me want to laugh and that would hurt too much. That’s because my face is so swollen that I’m starting to look like an entirely different person. The Godfather or a chipmunk comes to mind or an over exaggerated caricature of myself. It seems like it’s still getting bigger.

For once the nurses at the hospital actually seemed to know what Marfan Syndrome was, or at least they’d heard of it. Though, one sounded surprised and confused when my chart said that I had aortic root dilation, which I think is the most important thing for them to know about MFS.

I was searching for stories about other people who suffer from TMJ who had their wisdom teeth removed. I wanted to know how long it took them to heal and what their experiences were. If you have a story feel free to share it.

Wisdom Teeth

I go into the hospital tomorrow at around 7:45 am to get all four of my wisdom teeth pulled. Because of my jaw problems (major TMJ) my dentist decided that he’d have to put me to sleep, which is really the only way to go. I can hardly open my jaw and when it is open it get’s really sore and tired really fast. We talked quite a bit about how best to keep it from being too painful when I wake up and from giving me really bad headaches. They’re going to try to manage the pain as best they can when in the hospital and I’ve been prescribed muscle relaxers and anti inflammatory meds to start taking tonight.

So, fingers crossed that tomorrow won’t suck too bad. I’m used to getting put to sleep so that’s no big deal and I don’t freeze well so it’s probably all for the best that that’s how it’s being done. My bottom two teeth are completely sideways so he’s going to cut them in four and pull them out that way. They’re more than likely going to have to put a catheter in while I’m asleep because the anesthetic gives me urinary retention (as does everything these days). But, I’d rather they get that over with than me having to come back later in the day to get it done. It was also suggested to me that I mention to my dentist the fact that people with Marfan Syndrome tend to dislocate more easily than others, so that he’s more careful with my jaw. Yikes.

Anyways, I’ll let you know how it goes. If it goes well you’ll probably be hearing from me tomorrow.

Dear Marfan

I’m having a beef with Marfan Syndrome. Lately the reality of my disorder has been hitting me harder, and I’ve been struggling with it. I had originally written a very dark post but before publishing decided to instead save it and if I was still feeling that way then I would post it. For now, I’m keeping it unpublished, and am instead writing this:

Dear Marfan,

First thing’s first, I do not hate you. Sometimes I’d like to, for all of the people that you’ve taken from this world too soon, for all of the pain and heartache you so often cause. But, you are what has made me who I am today, and showed me strength that I never would’ve thought I had. So, I don’t hate you, but I am angry with you. I’m angry with you for trying so hard to make me hate my own body and for all of the things that you’ve taken away from me, all of the things that I’ve missed out on because of you. You were not supposed to be a part of my life. You were never part of the plan.

I’d like to ask you why you chose me, but in all honesty, that’s not as important to me anymore. I wouldn’t wish you on someone else instead. But I do wish you didn’t make me feel like a ticking time bomb. I wish that I never had to think about things like aortic dissection and emergency heart surgery, that I didn’t feel the need to have my affairs in order, “just in case”. I wish I didn’t have to wonder if you’d cause any future child of mine suffering, or if I’d lose my own life in the attempt to have one.

I wish you hadn’t taken my sports and many of my friends, and replaced them with medications and doctor appointments. You’re constantly reminding me that no part of my body is safe from your consequences and that it’s only a matter of time before something else goes wrong. You hurt me, day in and day out, standing or sitting, year after year, from head to toe. Because of you I talk more often to doctors than I do to people my own age.

I had dreams before I knew you. Now, I’m afraid to get excited for the future because I know, eventually, you’ll get in the way of it. You always do. As soon as I let myself want something, you give me a reason why I can’t have it. You’ve given me a body that is always telling me “no”. No, you can’t play basketball anymore, no, you can’t have a job, no, you can’t get your heart rate up, no, you can’t lift that. No.

These are all of the reasons that I’m angry with you, these are all of the reasons that you scare me. And honestly, it feels good to get them off of my chest. But, you haven’t been all bad. You’ve given me a chance to have this blog and to talk to and meet people that I never would’ve otherwise known. You’ve taught me a lot about the important things in life, like telling those you love that you love them, as often as possible. You’ve showed me the ignorance and cruel judgement of some, but you’ve also showed me the uncompromising kindness of others. You’ve taught me to be compassionate, and not judge others by their looks, because you never know what they’ve struggled through.

I wish that I could know a future without you in it. I wish that you hadn’t changed everything so much. But most of all, I wish that my body belonged to me, not you.

“A tragedy need not have blood and death; it’s enough that it all be filled with that majestic sadness that is the pleasure of tragedy.” – Jean Racine

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.

Return From Ottawa: Important Request

Hi guys! I’m back from my trip to the Canadian Pain Summit in Ottawa. I’m exhausted but I will update tomorrow and let you know how it all went.

Right now what I’m asking is this: please, please, please click this link to endorse a national pain strategy in Canada. I can’t even begin to tell you how important this is. Do it for the four year old, dying of cancer who’s in too much pain to even let her mother comfort her during her last days, do it for the soldiers who fought for our country only to be injured and live needlessly and continuously in pain afterwards, do it for the infants, born prematurely and stuck with needles over 20 times within their first day of life, do it for the teenager who thinks the only way to end the suffering is to end his life. Do it for the 1 in 5 Canadians suffering with some form of chronic pain.

We need to get the word out there, we need to step up and make the difference in our country, for our people and hopefully, others will follow. This is so important.