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.

In Kindness There Is Strength by Βethan

I will hold on hope.

I realize something that maybe I’ve been avoiding for a while – my positive outlook on life has changed dramatically in the past few months, it’s been swallowed up by depression and hopelessness. I’ve ceased to participate in my life. When did that happen? I think it’s been a slow progression. I don’t have good days and bad days really, there are the highs and lows but mostly it’s just emptiness, eternal boredom, nothingness, accompanied by never ending physical pain.

What a waste of a life. That’s not what I want my existence to amount to – having my spirit broken by my worst enemy; pain. How did I let myself become this shell of a person? I’ve stopped being excited about things, stopped setting goals and having hopes. When I get an email from someone in pain or with an illness, asking me how I stay positive, I feel like a fraud – how can I give advice to other people that I can’t seem to follow on my own? I think I’ve started using my illness as an excuse, and it is, for a lot of things, but it doesn’t mean that I can’t try, and it doesn’t mean that there’s no room for anything else, anything good, in my life too.

I’m afraid to fail, and, I’m afraid of discovering just what kinds of things my body prevents me from doing. But that’s what I’ve realized – my fears keep me from doing much more than my body or pain ever would. That’s not okay. So, I’m going to start correcting that little voice in my head that tells me that I can’t do things and that I shouldn’t even bother trying as soon as I hear it and replace it with one that tells me it’ll be worth it to try, no matter the outcome. My own form of cognitive behavioral therapy. It’s been so long since I’ve truly worked hard at something and felt the pride of achieving it. I need to remind myself what that feels like. 

I wanted this blog to be as honest as possible, but I also wanted it to be somewhat positive, maybe even inspiring. So, time to get at it!

Hope By Jan Tik

I will hold on hope, and I won’t let you choke,
On the noose around your neck.
I’ll find strength in pain,
And I will change my ways.
I’ll know my name as it’s called again.

Mumford and Sons – The Cave

In the woods.

Hey guys, nothing new to report with me. I’ve been having a rough couple of days so I’ve been laid up a lot, listening to music and thinking about life. I’ve also been working like mad on the tattoo that I’m drawing whenever I can.

Come down from the trees, you’ve been gone too long.
Return to the house that you came from.
Turn back on the road, you traveled upon.
I stand where you stood, come out of the wood.

Matthew and the Atlas – Come out of the Woods.

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

Sisterhood of the World Bloggers Award

Sisterhood of the World Bloggers Award

This has been sitting in my drafts folder for a few weeks. Thank you so much – again – to Tracy at Oh What a Pain for the nomination! Please check out her blog, you will be so glad that you did.

Award rules:

Recipients need to thank the giver.

Post 7 things about yourself.

Pass the award onto 7 other bloggers of your choice and let them know that they’ve been nominated.

Include the logo of the award in a post or on your blog.

7 Things About Me

1. A good 70% of my drawings never get finished. Most of the time this is because I get to the hair and quit. I don’t have the patience or the skill that it takes to make the hair look as good as the rest of the drawing. I know that I’ll never get better unless I start practicing but so far that’s not enough to make me do it.

2. I love reading Wikipedia articles. I don’t remember half of the information that I take in but having access to so much is awesome. I particularly like the articles on history related subjects.

3. I’ve been compulsively watching Whose Line is it Anyway? episodes on Youtube. Nothing makes me laugh as hard and I’m amazed at the talent of the show’s improv comedians.

4. I love, love Pearl Jam and Nirvana. I feel such a deep connection to their music and the artistry involved – I feel like it’s me in a way that’s impossible to even explain. I’m also a big fan of the Beatles and, I love drawing themes related to their songs on my walls because the imagination involved is limitless. 

5. I’m a huge daydreamer. I spend a great deal of time lost in my head.

6. I love Jack and Sally (The Nightmare Before Christmas), and any other movie/character that Tim Burton touches – he’s a genius when it comes to imagination and creativity.

7. When I find a song that I really love and connect to I can listen to it on repeat hundreds of times without getting tired of it.

My nominations for the Sisterhood of the World Bloggers Award:

The following women have had an enormously positive impact on my life through their blogs and writing. I’m very grateful to be able to pass this award onto them because each of them so deserves to be recognized.

1. Adventures in Chronic Illness

2. From This Point. Forward.

3. Growing Things From Seed

4. Labor Pain

5. Our Sunshine Angel

6. Overcoming: Life With a Chronic Illness

7. The Road Less Traveled

Pain Awareness Month

Note: I posted this last night and for some reason it disappeared. So, sorry to all of you who are getting double notified of this post.

I haven’t been in a blogging mood the past couple of weeks. There are so many things that I desperately want to say but when I ready myself to write them down nothing comes out the way that I feel it or want it to.

Anyways, what I do want to write about is the fact that September is “pain awareness month” and I can’t not acknowledge it. It’s a sad thing to dwell on, really – the reality of just how many lives are being severely altered and often ruined by chronic pain. Why is this becoming such an epidemic? And more importantly, what can we do to change that? Ignoring the fact that this cause is extremely personal to me – as someone who suffers from chronic pain herself – I think that we owe it to each other as human beings to find out why our friends, parents, grandparents and children are being affected by this debilitating condition in such large numbers.

For those of you who might not know or remember I was asked to travel cross-country to speak at Canada’s first ever Pain Summit in Ottawa this past April. The experience was absolutely terrifying and I spent a lot of the time leading up to it cursing myself for getting myself into that situation. But I did it because it was important and I felt an obligation to myself and to everyone and anyone in a similar situation to open eyes to the reality of chronic pain. The audience of politicians, medical professionals, business stakeholders and policy makers needed to hear the account of a young person living in 24/7, often excruciating pain, and that’s what I was there for. My speech was intended to steer away from medical terms and hard facts and instead show you the individual behind the curtain and the devastating impact the condition of chronic pain has on the lives of those involved. I spoke candidly about the humiliating doctor appointments, the ignorant opinions of the many who believe that a young person cannot suffer from chronic pain and – I think most importantly – those moments that my heart broke to realize that I was never getting better and that pain would be my constant companion for the rest of my young life. I was open, honest and unavoidably vulnerable and I think that it made an impact on my listeners.

Chronic pain is often referred to as the “invisible illness” by those who suffer with it. The impression that someone gets by looking at you and not seeing any physical disability or injury is too often the only one that seems to really stick. I don’t look sick or injured and so everyone assumes that I am a healthy person who’s not in any pain whatsoever and who certainly is not suffering to the extent that those who know me well see that I am. Many of us also do our best to contain our discomfort, either because of previous negative experiences, being uncomfortable with the vulnerability that showing pain invokes or whatever the reason may be. One of the reasons that I try to hide my pain is because I fear others will think that I’m being melodramatic or just trying to get attention. Those fears have shaped my extreme dislike of revealing my pain to really anyone apart from my mother. And with her a big part of it is because I know that she understands exactly what it feels like and would be the last to judge me. 

The aim of the Canadian Pain Summit was to help invoke a national pain strategy – similar to one that was recently put into action in Australia – in Canada. What that means is this: “The National Pain Strategy is a call to action developed by clinicians, researchers, stakeholder groups and people living with pain to address the social, economic and personal impact of pain on Canadians. To date, over 4,000 Canadians and more than 100 organizations have shown their support for a National Pain Strategy. The Strategy identifies four key target areas for change, including: awareness and education, access, research and ongoing monitoring. The Strategy has been reviewed and contributed by various stakeholders such as Health Canada, The Canadian Medical Association, The Royal College of Physicians and Surgeons of Canada, the Canadian Nurses Association, the Canadian Pharmacists Association, the Arthritis Alliance and The Canadian Association of Retired Persons to address the gaps that exist in pain management and to minimize its burden on Canadians living with pain, their families and society.” – http://www.newswire.ca/en/story/960605/canadians-deserve-a-national-pain-strategy

Needless to say; were the pain strategy put into place it would make a huge positive impact on all of us who are currently living in chronic pain and those who will be in the future. It’s an important objective, one that I sincerely hope succeeds, not only for my sake but for the sake of many of my loved ones and the 1 in 5 Canadians suffering with chronic pain. To do your part and make a difference click the picture below to endorse the pain strategy. It’s as easy as filling out 5 fields of information (name, email etc). Also, if you’d like to make a donation towards the national pain strategy for Canada click the “make a donation” picture/link below (donations handled by the Canadian Pain Foundation).

We have a long way to go yet, in regards to raising awareness about chronic pain. But I do believe that we’re on the right path and that we’re making progress. I will spend my life speaking out about it in any way that circumstance allows me to and hoping that in some small way I’m making a difference. Luckily, I’m joined by handfuls of amazing, brave bloggers who are writing out their lives and experiences with chronic pain for the world to see. Having access to their stories will make an impact on those who take the time to read them. Hopefully, in the end, it will change their views on just who the people being affected by this condition truly are.

Beautiful Blogger Award

Beautiful Blogger Award

Thank you so much to Tracy at Oh What a Pain for the nomination! I’ve been extremely privileged to have access to her amazing and insightful blog. Blogs like hers somehow allow me to better understand myself and my own pain – they teach me, inspire me and pull me up when I am falling.

The Rules for The Beautiful Blogger Award:

Write a little something about the Beautiful Blogger who nominated you with the award. See above. And don’t forget to go and check theirs out too.

Share 7 things about yourself:

1. I’ve been in love with piano music for as long as I can remember. Living in a tiny trailer we never exactly had room for one so I recently saved up some money, bought a keyboard and have been slowly teaching myself to play.

2. I’ve started writing at least half a dozen books dating back to when I was 10 or so. Having a toddler-sized attention span though I never could get myself to continue working on them beyond those first couple of writing session. Maybe I just haven’t found characters that I’m invested enough in yet.

3. I am one of those females that feel that they were destined for motherhood and would feel empty never having it – which frightens me because I don’t know if my life or body will ever allow it.

4. I’m very sensitive – too sensitive – towards both the actions of others as well as my own.

5. My bedroom consists of two lime green walls and two bright purple ones. I started drawing on them with black markers and they’ve since turned into a map of my thoughts, feelings and anything else that I’m momentarily inspired to include. It’s extremely me and I’ve grown very comfortable and attached to it.

6. I absolutely loathe shopping. I hate it.

7. I love reading (especially high fantasy series) but for some reason don’t do it nearly often as I should or would like. This is partly owing to that fact that it’s extremely difficult for me to get comfortable while doing so.

Nominate 7 other bloggers for the award:

I’ve found so many blogs and bloggers worthy of a nomination. I’m dedicating my nominations for this award to those brave bloggers who detail their lives with chronic pain – your words are such an asset for those of us who also live in constant pain.

1. Chronic Pain Journal

2. Phylor’s Blog

3. Pain, Pain, Go Away

4. Graceful Agony

5. Spicyt’s Blog

6. Living Life As I See Fit

7. Una Vita Bella

Your words, my medicine: What the online community means to me.

It’s impossible to adequately explain to people what the online community has been for me. My face to face network of support got so small when I actually needed it, leaving me feeling so much more alone then I ever had to begin with. And not to say that I didn’t play my part in that; as the pain worsened so did the depression that followed and I began to isolate myself from a world that I felt no longer understood me and that I could no longer properly be a part of. I pulled away. Now I don’t even think that I know how to act like a teenager; to let loose and just have fun with my peers. I can’t pretend that I’m carefree – not when there’s medications to be taken, bone shattering pain all over my body and the lingering question of if I needed to go to the hospital how would I get there safely? – clearly I’m not carefree, there’s just too much on my plate for that. Pain can take all of the fun out of things and it does.

Online I’ve found understanding and support. I’ve been able to talk to other people my age with my disorder that I’d never have access to otherwise. I’ve been able to learn from and lean on people from every corner of the world who also spend their days in pain or who care for someone who does. I’ve been on the receiving end of such genuine care and kindness and in turn have become so invested in the lives of those that I converse with. When they hurt, I hurt for them and vice verse, and it’s not a bad thing. It’s because I can relate on such a deep level to them and everything that they tell me that it’s impossible not to become involved where their lives are concerned. Not to mention what the kindness of those same people has meant to me. It lifts me up even when I don’t think that such a thing is possible. 

Sometimes the deep connection that I share with these incredible people can have painful repercussions – for instance when someone loses their battle with their illness. I mourn for them as I would for any other friend because it cuts just as deeply. When it is my specific disorder that takes a life it’s a painful, sobering blow that hits extremely close to home. It’s during these times that I’m reminded of the reality that is Marfan Syndrome but also that I am lucky to still be here. I do my best to honor and remember them: I mark their name on the mural/sketchbook that is my wall and am sure to be ever reminded and thankful that I’m still here. Sometimes deep depression and extreme pain cloud that thankfulness but for the most part it serves it’s purpose. 

My online community or “family” are a constant reminder of the sheer strength and power of words. I very often start my day by checking the comments on my blog because the kindness does so much for lifting my spirits and readying me to fight it out another day. I’m so grateful for all of you and to have that support system. 

A new step: Beta blockers.

As I’d mentioned a few posts ago, I had a doctor appointment last Friday. I told my gp about the change in my heart rate, and we made the decision that it was time for me to start beta blocker treatment. In many ways this was a bitter step for me. It was an affirmation that there is something wrong with my heart, it’s reality. It’s a scary thing to think about. When I write and talk about the aspects and dangers of my disorder in regards to my heart there’s a certain technical feel to it, I feel like I’m just talking facts and medical jargon. It’s important to me that I switch of any emotions that might personalize what I’m saying because I feel stronger and safer that way – it helps me cope. But, there are certain moments and milestones that hit home hard for me. Being reminded three times a day when I take this pill that I may very well need heart surgery someday or that I’m at 100 times greater the risk of aortic dissection makes it that much harder to keep those thoughts out.

The beta blocker my doctor decided on is Propranolol. It is also prescribed to treat many different types of headaches so she was hoping that it may help mine. To start with I had been taking 40mg three times a day, equaling out to 120 mg, but my heart rate started to climb again, so we upped the dose to 60mg three times a day. They definitely do make me more tired and weak, some days being worse than others. They’ve also made my circulation and Raynaud’s syndrome worse, where my thumb and sometimes other fingers and toes turn dark purple and become freezing cold. I’ve been experiencing the vivid dreams that can come with this particular beta blocker, but so far not the nightmares that they warn of. As for insomnia, I don’t know whether the pills are making it worse or if I’m just going through another bad spell. My headaches haven’t gotten any better, but I don’t know if I’m on a high enough dosage yet for that. My current dose is still not as high as I’m meant to get it up to, but they recommend a steady, slow increase so that you can safely monitor your blood pressure.

I feel very overwhelmed today. Family and social stresses in combination with the fact that my body is wreaking havoc is beginning to take it’s toll. I’m exhausted and in a lot of pain. I’ve been very lethargic while on the beta blockers and if it weren’t for the intolerable heat I’d be trying to nap right now. I truly, truly hope that those who are healthy do not take it for granted. I’d give anything in this world to have that one thing.


On an entirely different note, here’s a photo that I took at the height of flooding season. I loved the way that the reflection on the water looked with the beautiful sky.

The truth is…

Would it truly be so horrible for me to have the diagnosis of borderline personality disorder? Can one not be a good person and have bpd? Sometimes I question it. So many people seem to want to “save” me from the diagnosis of it, to justify or explain away my borderline traits as if the label of bpd is such a terrible thing. And I know that their intentions are good, I don’t doubt that, but what it says to me every time is that it’s not alright to have bpd. In the end what it does is further enhance the shame and stigma already surrounding this disorder.

I often wonder if I made a mistake in blogging on here about my diagnosis and mental health. Generally what I write here was and is focused on my connective tissue disorder and chronic pain. My diagnosis of bpd came almost a year after I had started this blog and I thought about it for a few weeks before deciding that I would share it here. But, generally I don’t go into much detail about what exactly I struggle with in regards to my mental health or what exactly led me to seek help and end up with the diagnosis in the first place. I speak vaguely of it, but I haven’t even scratched the surface of my life with bpd on this blog. That’s because I don’t feel comfortable sharing such personal details of my life on here and because I’d rather keep the medical aspect of this blog focused on what it was meant to from the beginning; my physical health.

Hardly anyone in my personal life knows about my bpd. This is in large part because I’m often ashamed of it and also because when people find out they begin to ask questions, questions that I’m not comfortable answering. The only people that do know do only because I couldn’t hide my symptoms from them. They knew that something was wrong, and eventually it became so obvious that the only option that I had was to tell them the truth about it. When I chose to include this in my blog it was for two reasons. The first was in the hopes that other people in similar situations would reach out to me, and I wouldn’t feel so alone. The second was in order to help sort out my feelings about the diagnosis, and keep from coping through denial, replacing that with honesty and openness.

I will never make this a borderline blog. I will never be okay with writing out the day to day struggles of bpd and how unwell it makes me. If this were an anonymous blog then that would be different and I wouldn’t feel the need to be as guarded. Because of that this will also never be a portrait of life with bpd. If you expect to look through my blog and know what bpd looks and feels like then you will be consuming an inaccurate account of what to expect when it comes to borderline people. I don’t put out enough information on the disorder to be of educational use to anyone. That is why no one can read through my posts and accurately tell me that I don’t sound like I have bpd. If I described living with the disorder as I describe living with Marfan Syndrome that would be an entirely different thing.

What it comes down to is this: no one needs to pity me because of this diagnosis, and certainly no one needs to try and tell me that my circumstances and hardships excuse me from having bpd. I was struggling with major aspects of this disorder before I even knew what to call it, so for me the name really doesn’t matter. These things are all a part of what makes me me, both the good and the bad. I am a good person. I’m mature, sympathetic, strong and kind, and I also happen to have bpd, at least so I’m told by the “professionals”. Having this disorder does not make me a bad person. It doesn’t mean that I’m not capable of good things and it certainly doesn’t mean that I’m about to turn into Alex Forrest from Fatal Attraction at any minute. And maybe there will come a day when more is understood about mental health, and my symptoms fit into a different category, a day when I’m told that I in fact really don’t suffer from BPD. Like I said, the name really doesn’t matter, it’s the progress I make within myself in order to be better and overcome my demons that should be the focus. Which is something we all face anyways, “borderline” or not.

This is me. I’m not that “borderline girl” or that girl who has Marfan Syndrome. I’m me. The rest is just background noise, pieces of the puzzle. For now, I am someone who was diagnosed with borderline personality disorder. And I’m okay with that. It validates a war that I’ve been fighting against myself for many, many years. It tells me that I’m not alone with feelings that I thought no one else in this world would understand. For now, it gives me an answer that I desperately needed.