Life can be cruel.

Sometimes life can be so unbearably unfair. I look at the people around me – be it family members or cyber friends – and I see so much pain and illness. It breaks my heart to see so many incredible people who’s lives have been forever altered so drastically by things like MS, Fibromyalgia, Parkinson’s, strokes, cancer, and tissue disorders. How can there be such a high rate of chronic pain and illness? How can so many things go so terribly wrong with the human body? I so desperately wish that I had a magic wand that I could wave and make everyone’s pain go away. I wish they could have their normal lives back and be able to experience what it feels like to live without pain for a day again. It’s such a sickening feeling; to watch the people that you care about suffering and not be able to take it away. And, it makes me sad to know that’s the same terrible, helpless feeling that my mom gets not being able to take my pain away.

I would do anything to give my mom her life back. I’ve dreamt for years of a day when she would wake up in the morning happy, rested and pain-free. And now, worse than that, she has to cope with having a daughter who is physically falling apart and unable to care for herself the way a healthy 19 year old can. It’s a lot to handle, more than anyone should have to. There’s so much uncertainty and with it comes a constant uneasiness – a fear of what might happen next. I know one thing’s for sure; we’re a team and without her I can’t imagine how I’d cope with this life.

To all those in my life – cyber or otherwise – who’re in pain; you are always in my thoughts. I’m sorry you’ve been dealt such a difficult hand in life and I wish that I could make it all better. I’ve learnt so much about life and perseverance from all of you. You’ve all not only taught me more about myself and how to better handle my own situation but you’ve also opened my eyes to the many faces behind pain. You teach me things that even first hand experience in the matter can’t. I hope you know that I’m here for you. I’m here with you.

Thank you and much love.

Lung issues and more spinal problems.

A few days ago we received the medical records/results of my recent specialist appointments and tests in Vancouver – they weren’t exactly what I had hoped.

The X-ray showing my mid and upper spine shows vertebrae wedging (compression of the vertabrae caused by degeneration) along with Spondylosis (degenerative osteoarthritis of the joints between the centre of the spinal vertebrae and/or neural foraminae). This was a bit hard to digest because we knew that my lower spine had some degenerative problems (large synovial cyst, uncommon in those under 65, very rare in those under 40) but thought that was the extent of my spinal problems. I wasn’t expecting to hear that my mid spine looks like that of a middle aged person already too. My lower back’s been hurting me more than anything these past few months and it’s been continually getting worse. It hurts up higher too but not very much, hopefully it’ll stay that way for a long time yet. 

I was more taken aback by what they found in my lungs. The bases of both of my lungs have atelectasis which is: the incomplete expansion or collapse of parts of or a whole lung. Collapsed lungs and pneumothorax are known to be more common in tissue disorders than in the general population, but I had no idea that there was anything wrong with mine.

Overall I’m oddly calm about the whole business. I took in the results, took some deep breaths and accepted it. It’s kind of sad to say but this is what waits for me. My condition is degenerative and it’ll only deteriorate over time. More and more things will start to show up on tests, more joints will dislocate, I’ll be in more pain. I know this and for the most part I’ve made peace with it. I have my moments of despair, but this is the way that things are and I have to learn to find happiness despite it.

It’s Thursday already?

Finally, an update! How is it that the days seem to drag on forever yet at the same time they’re going by so ridiculously fast? I had meant to do an update last week!

I’ve been feeling rather introspective, perhaps it’s a day for it because my good friend Benjamin seems to be feeling the same way! Actually, I’m rather moody as of late. I fear that I’m slipping back into one of my major depressive episodes. The holiday season seems to only be making it worse. I think that I’m still harboring sadness and anxiety over how last Christmas turned out. It seems like I have a hard time letting emotional pain go. The more sadness that creeps it’s way in the more I find some painful memories stealing their way into my thoughts along with it. I wish that I could be numb to both the physical and emotional sometimes, that I could forget some things that have happened. Life would be so much easier that way.

Knowing that I might be falling back into a major depression but not being able to stop it is terrifying. And, I wish that it wasn’t happening around Christmas, I don’t want to ruin the joy of it for the people that I love. It’s times like these that I wish I could be medicated for the depression. Even with the awful side effects and conflict over putting toxins into my body, I just want to get better. But, thanks to the urinary retention side effect that’s not even an option anymore.

Painwise, I could be doing better. My hip subluxated about a week ago. It went back into place fairly quickly but it’s been really sore ever since. My tailbone is also dislocated again. I’ve been looking into the tailbone removal surgery, but it sounds like it’s one of those gambling decisions where you might just end up worse off than you already were. And, with my tissue disorder, I think it’s best not to mess around with surgery unless it’s straightforward and 100% necessary. Besides, I’ve been dealing with the tailbone dislocations for as long as I can remember. They’re getting more frequent and they’re painful but I can manage them. 

I found out today that I’ve been approved for an appointment with one of the best orthopedic specialists in our province. It’ll likely be in mid March at the Children’s Hospital. We’re going to line it up so that it coincides with my echo there for the Marfan/Loeys-Dietz clinical study my pediatric cardiologist is doing as well as my appointment with my new “adult” cardiologist. Two echos in a matter of days isn’t ideal, they’re very painful because of my rib problems, not to mention that doing two of the exact same tests seems a little pointless but we have to attend our appointment with my new cardiologist within a year of the referral or the process has to be redone. I’m nervous about meet two new doctors. I’m always afraid that they’re going to be jerks, but I’m hoping because one is a highly recommended specialist and the other works with children for a living that it’ll turn out okay.

I hope that all of you are doing well tonight and that you’re enjoying your holiday season!

The ILC Foundation

Hi guys. I wanted to write a bit about an amazing foundation that was brought to my attention when I was at the Canadian Pain Summit this past April. They are called the ILC foundation and are dedicated to improving the lives of young people (up to age 29) suffering from chronic pain. They offer a wide variety of resources including one on one support, a peer support network (including live chats and webinars), an online library full of resources for specific age groups and ailments, along with a wealth of information and events to attend. There’s so much more on the site and I highly recommend anyone with chronic pain or those who have a loved one with it to check it out. You’ll be glad that you did!

I feel so lucky to be living in a time and place when resources and support like this is available to help me through my chronic pain journey. One of the hardest parts of chronic pain, especially when it starts at a young age, is the isolation. You begin to feel so misunderstood by those around you and alienated from other people who do understand what you’re going through. That’s why programs and foundations like this are so invaluable. They give us back a connection to the world and a feeling of support and access. The foundation’s creators/staff are amazingly kind, understanding and helpful as well which puts you at ease and makes you feel more comfortable contacting them with your needs and/or questions.

The ILC is also involved in heading Canada’s first ever “21-Day+ Pediatric Chronic Pain Rehabilitation and Wellness Program” alongside experts in pediatric chronic pain. I watched a video on their Facebook page the other day of different kids, teenagers and young adults talking about their lives with chronic pain and how things have changed since it started and the importance of advocates and support. The video was amazingly well done and I was in awe of how precisely each of their stories echoed my own. I suggest watching it for yourselves, it’s very educational and heartfelt (you can find it by liking the ILC Foundation’s Facebook page, the link can be found below). 

Click here to go to the ILC Foundation’s Facebook page and here to follow them on LinkedIn. I’ll also be putting a button link on the side of my blog for quick easy access to their website. I’m grateful to the ILC Foundation for the things that they’ve done for me so far and I know that they’ll continue to be an important and immeasurably valuable resource to me in the future. I’m so thankful to the dedicated and caring members who do so much for us young people in pain.

Dear 13 year old me

I was looking through one of my old journals the other day and stumbled upon this letter that I wrote when I was 16, addressed to my 13 year old self.

Dear 13 year old me:

I know that you’re scared right now. I know that you’re going through a lot and that you don’t know what’s happening or why you’re in so much pain. You will know one day, I promise. It’s going to take some time but it will happen.

I know that the people you love are confused too. Some of them may not understand what you’re going through very much. I know that this might make you question how much they love you, and it might make you want to push them away to keep from getting hurt. Try not to. Try talking to them and telling them what you’re feeling and that what they say can hurt just as much as the physical pain sometimes. They’re going to make mistakes and say the wrong things, but try to remember that this is all new to them too and that they really do love you.

Your pain is real. Never start to doubt that just because some ignorant, uninterested doctor couldn’t be bothered to give you a better explanation. They’re wrong, and one day you’ll be able to prove it. You’re not crazy, no matter how much you’re beginning to feel like you are. The way they’re treating you is wrong and I’m so sorry that they aren’t trying to help you. 

I know that you’re tired, physically and emotionally. I know that you feel like giving up, and that sometimes you think that you’d be better off dead, but things are going to get better. They might have to get worse first, if you can even imagine that, but there will be improvements in the future. There’ll be more downfalls too but you’ll get through it all, you just have to be strong. 

Don’t give up on your education. I know that you’re bitter because this isn’t the way that you wanted to start your high school experience, but, giving up on your school work will not make you feel better and you’ll only regret it down the line. I know that it’s harder at home, but you’re smart and I know that you can do it.

I’m sorry, but you’re not going to play basketball or volleyball anymore. I promise you though that one day it won’t hurt so much to let those things go. With time it will cross your mind less and less. You need to let go of some of your hopes and dreams. It’s not fair, I know, but there will be new dreams and goals, you just need to keep an open mind.

Most of your friends are going to start dropping out of your life. Some are already starting to, and sadly more will eventually follow. I know you feel like it’s because there’s something wrong with you, or that you’re not good enough anymore but I promise you that it’s not personal. They don’t understand why you aren’t going out with them anymore or why you seem so boring and down when you do. Some of them probably wonder if you’re faking it or trying to get attention. They don’t know how hard it is for you to keep up now and do the things that you used to. They’re young and they want to live their lives that way. It might be hard to face, but there are just some things that your body isn’t going to be able to handle anymore.

Never forget to thank mom for being there for you. I know that right now she’s the only one who truly believes you and is fighting for you. She’ll never stop, ever. The two of you are going to have to help each other through a lot of pain and hard times. You’re going to have to be there for each other through everything. I don’t have to tell you how lucky you are to have her, I know that you already know. 

Finally, try to appreciate the things that you still have. Try to hold on to those things instead of the pain you’re feeling because one day they will be the last memories you have of a life without constant pain. Remember the sense of purpose you had in life before this new pain started and hold onto that. I still have faith that one day we’re going to need it.

I found the letter hard to read sometimes. It brought up a lot of old feelings and made me wish that I could hug that 13 year old girl and tell her to keep her chin up. I wish that I had some of the knowledge and connections back then that I do now. It would’ve made life a whole lot easier.

Smiley faces.

A world full of pain is a lonely place. That is simply the truth. That being said, I’m again reminded of the hearts that go with me on my journey, even to the loneliest of places. There is love and compassion to give me strength when I feel done fighting to live a life that I find no pleasure in anymore. They remind me that; though I’m alone in my pain, I am not alone in life. <3 

Thanks SN, LG, and yours’ for the flowers. They meant more than I can say. The smiley face mug was perfect! xox

The doctor appointment.

I first have to say: forgive me for any spelling or grammar errors that may be in this post. I haven’t been to sleep yet and am desperately and overwhelmingly tired.

I have mixed feelings about my doctor appointment today. By the time I was called in it was clear that my doctor was running behind and there were already people waiting for their appointments despite the fact that I had 4 appointments booked back to back. At first she suggested I be sent to a pain clinic until I informed her that I had already graduated from a pain clinic program at the Children’s Hospital a few years prior. I told her that I remember all of the suggestions and tools that they gave me and doubted that another of the same experience would be very beneficial (not to mention that the travel is very difficult financially). That was fine and she seemed in agreement.

I handed her the things that I had written out earlier and explained how my concentration difficulties, pain and lack of sleep made writing my thoughts and experiences out the easiest way to explain my situation thoroughly. She skimmed through them – more along the lines of glanced – fast enough that I knew she hadn’t taken in hardly anything that I had written. This was a bit frustrating and insulting. She didn’t even bother to keep the paper to read later, instead she handed them back to me.

My biggest problem with the appointment is this: my doctor seems very intent on pushing Dilaudid on me, as a means of regular pain control (instead of sporadic use). She’s continually done this despite my reasons for not wanting to replace my tylenol 3s with the Dilaudid (Tylenol 3s have been my more regular pain management opioid for many years). My view is this: I’ve been controlling my pain with the T3s for six years now, and have generally been on the same dose without any significant tolerance increase. However, with the Dilaudid my tolerance grows staggeringly fast and compared to the 6 years with the T3s and no tolerance increase, I seem to have to up my dose of Dilaudid at least twice a week (which is just not okay: to go from taking 2mg once a day to having 6mg twice a day hardly work within a few weeks). Now mind you, this happened when my ribs were subluxated and I needed to be constantly medicated because of the intensity of that pain. 

I’ve had a hard time coping with the needed amount of medication since having taken the Dilaudid regularly.  Especially when I’ve been so strict with my medication intake all these years and spent so many days desperately needing more pain relief while not allowing myself to have it. I know that may be confusing to some people – why I wouldn’t just take the medication when I need it – but if you think of the fact that I’m only 19 and will be in pain for the rest of my life, it’s just not a practical solution. My needed dose would increase to an insane amount if I regularly took medication for the rest of my life, and eventually the pain killers lose their intended effect on pain, often causing more of it in the end.

On top of this, Dilaudid also gives me fairly severe nausea to the point where I need to take gravol with it everytime or I just end up throwing up, and even with the gravol my stomach feels dreadful. My Tylenol 3s don’t do that at all. Both this appointment and the last I’ve explained this to her but it seems to go right past her head. She doesn’t acknowledge what I’ve said at all and has both times ended the appointment while still advocating for more Dilaudid use instead. Last time I thought it was just because I was a fit in appointment and she was an hour behind, but the same thing happened this time.

She ended up suggesting that I try what is known as a “drug holiday”. This is when you cease all use of your medication (she said 5 to 6 days should do the trick – I’ve read that 10 or so is around the target number of days), this is fairly effective in lowering your body’s tolerance buildup. Coincidentally I’m actually already on day 7 of the process. After my ribs had gone back into place I did my research on the subject in order to find a way to get back to my previous dosages. The 7 days have been very trying and painful – I’ve come close to giving up several times everyday since the beginning. But, here I am still managing it. It’s cost me my sleep – I can’t be in my bed for much more than 6 hours before it’s too painful to lay there anymore and I wake up every hour or so in significant pain. I’m going to have to buy a mattress in the next few days or so (mine is in horrendous shape). I think that a hospital bed would be highly beneficial (stacking pillows up and sleeping on an angle sometimes helps) but my room is too small to fit one. I’ve been on a steady dose of muscle relaxer in combination with ibuprofen (over the counter) in order to ease the pain whatever small amount possible. It’s got me worried about my stomach but I don’t know what else to do to help me get through the “drug holiday”.

Anyways, all in all the appointment didn’t go too well. It was alright but it had it’s downfalls, though, we did cover a bit of ground. Despite the length of time booked for my appointment I still had the feeling that she was trying to rush through everything. I’m not a fan of going to the doctors and right now I feel pretty “doctored out”.

The things that shape us.

I have a long doctor appointment today to be entirely focused on my pain and the management of it. I have some specific things that I need/want to talk to her about, but I’m afraid. I’ve always been frightened of and extremely uncomfortable with telling doctors the truth and being honest and vulnerable with how much pain I’m in and how it’s affecting my day to day life. I feel like a fraud and I’ve never understood the nagging voice that I have when it comes to my chronic pain, the one saying you’re a liar, you’re a fake. Is it denial? I don’t think so because I know that I’m in pain and I know that there are a thousand proven reasons for it. But I somehow feel like I need to be convincing, like I need to decide how I’m going to act beforehand so that my gp will believe me, when the reality is that I should only need to be truthful.

I think am fairly certain that the reason for this is the treatment that I received early on in my dealings with chronic pain. I was seen as someone who was either faking it or whose pain was entirely psychosomatic. I went to my multitude of pointless doctor referrals with my jaw clenched, knowing that I was about to walk into a room full of accusations and judgement, when what I desperately needed was understanding, acknowledgement and answers. For that period of time I was suffering and scared but I felt that – despite the obvious – I needed to prove that to everyone.

I feel like those experiences cemented my deep seated fear of not being believed and being judged. They may not sound traumatic now, but at the time they were devastating. Here I was, someone who not even a year ago was leading a perfectly normal life, but who was now in daily, excruciating, frightening pain that took away my friends, my school life, my sports and my normalcy. The people that should’ve been helping me, who should’ve been my advocates were the ones that tore me down and made me question what I knew in my heart was the truth. I learned then that when you’re told something often enough, that no matter what you know, you sometimes begin to believe it to be true.

I know that if I’m to be helped that I need to be honest and assertive. And for the most part I think that I’m slowly getting better. Sometimes it just depends on the day and my drive to fight in order to get the best treatment that I can at the time. I fought at my last appointment because the amount of pain that I was in left me no choice, I knew that I couldn’t walk out of that room and go back to things the way that they were.

I’m more prepared for this appointment. I’ve written down every bit of the daily pain that I experience, the lack of sleep, the difficulty in concentration and the low mood because of it all. Aside from the fact that I think it’s helpful for all of us to make lists to refer to while at the doctor, writing has also always been by far the most comfortable form of communication for me. I can say things in my writing that I could never say out loud and it gives me a voice that I never would’ve found otherwise. 

“Our real blessings often appear to us in the shape of pains, losses and disappointments; but let us have patience and we soon shall see them in their proper figures.” – Joseph Addison

A break – finally.

My body finally dealt me a break yesterday; I woke up and my ribs had gone back into place! I was so relieved and lifted. I was beginning to fear that they were never going to go back in and was wondering how I would live like that for the rest of my life. When I’m scared my mind tends to skip ahead to the hypothetical, something that I’m working on.

My pain level is still quite high compared to usual but I imagine that it takes a little while for your body to recover from something like that. I’m exhausted but except for last night, I haven’t been sleeping much. I have that unsettling haze of gloom hanging over me, the kind that you have when you wake up the morning after something really bad has happened. But, at least now I can see a light at the end of the tunnel. A small light, but a light nonetheless.

A quick update on pain and my doctor appointment.

It’s been a little while since my last post and I thought that I should update. Thank you all so much for the kind words and support. I know that I haven’t responded to any of the comments and/or emails but know that I have read them all multiple times and they mean so much to me. The love and compassion gives me strength when I need it the most.

I got in to see the doctor the same day that I last wrote. The appointment was brief because she was fitting me in but it was enough time for her to get the gist of just how badly I’m doing pain-wise and how painful the rib subluxation is. Actually, I think she was a bit startled by the state that I was in. I hadn’t slept yet so I was in zombie mode, I couldn’t put my shoes on without my mom’s help and I was on the verge of tears whenever I tried to explain how hard things have been lately. She seemed to grasp my situation and desperation fairly quickly. She ended up giving me a prescription for Hydromorph Contin which is just time release Dilaudid (the pain killer that I used to take every once in a while when my pain level was especially high), to take twice a day. I’m on a much higher dose of that then I want to be and it’s been stressing me out but even with that I’m still having a really hard time with the pain. If I hadn’t been side tracked I would’ve insisted on a different medication because I can’t take this one without taking gravol first. If I don’t then the nausea gets bad enough that I just end up throwing the medication back up. It seems wrong to put so many pills in my body everyday and the gravol in combination with my beta blocker and pain medication make me unbearably tired. That would be fine – beneficial even – except that it hurts my back to lay down for very long at a time.

I’ve been in a bit of a better mood than before. I enjoyed my Thanksgiving even though it was a little overwhelming and I was too sick to eat much. I got to meet my cousin’s 5 week old baby girl for the first time (I love babies) and see some family that I haven’t seen for a long time. I was thinking about what I was thankful for on Thanksgiving day and the first thing that came to my mind was my mom, of course. She’s been so amazing and supportive the past couple of weeks. She’s the only thing that’s kept me holding on and I know that I’m unbelievably lucky to have her. I’m also very thankful to have the opportunity to write out everything that I feel – good and bad – here on my blog and for all of you and your kind words.

Anyways, I’m still trucking along as best as I can. I haven’t slept yet so I hope to write a little more later today once I have.