Finger ring splints

I’ve been having some problems with my fingers the past few months, particularly the middle and index fingers. They hurt quite a bit at the mid knuckles and have been hindering my ability to draw and type. They’ve also been popping a lot.

I keep coming across these finger ring splints on the internet, usually by other people with connective tissue disorders talking about them. There are various benefits of wearing them, depending on your particular problem and the type of splint you get. My fingers tend to hyper-extend when I try to straighten them or put pressure on them (the middle and index are the worst). The type of splint I wanted to try is called the swan neck splint and it prevents the fingers from bending backwards when I try to straighten them.    

The splints sound awesome, but they are fairly expensive (anywhere from 30$-80$ for each finger, plus shipping, depending who you order from) and it can take weeks after ordering them before you get them. So, instead of paying for something I wasn’t sure would even work I decided to make my own (out of key rings) and voila!

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I was able to get them to fit comfortably and do their job without paying a dime. I’ve been wearing them for days now and they’re working well.

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The above picture is my finger without the splint. You can see how it hyper-extends backwards when I straighten it. It bends even farther if any pressure is added.

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You can see in this picture that it prevents my fingers from hyper-extending at all in the middle joint. I still have pain in my fingers but I wasn’t expecting it to go away with the splints. I just hope that they’ll help prevent some future wear and tear.

There are a few different places that you can order the splints from, they vary in price but like I said, they are fairly expensive. I’ll probably invest in some in the future but for now the homemade ones will do just fine.

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”.

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

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

The Right to Choose

Someone posted this question on the Facebook support group for people in chronic pain that I follow: is it selfish for someone who suffers from chronic pain to commit suicide? That’s a heavy question and I’d like to share my point of view – as someone who not only suffers from chronic pain myself but also who has a parent who does as well. My answer in short: No, I do not think that the act is selfish.

I have watched my mom suffer for 12 years now, from something horrible, that no one can understand unless they themselves have experienced it. I have seen the happy, brightness fade from her eyes to be replaced by dark circles and pain medications. I have watched her use up every ounce of strength and perseverance she has left, just merely trying to survive the day and be there for her children, only to have to pick it up and do the same again tomorrow. And despite this, despite her exhaustion, her never ending pain and suffering, she is still there to lean on when I too am ready to give up my fight. If this is not strength, courage and love of the purest kind then what is?

My mom is the most important person in my life. I love her more than life itself, she is my beacon of light in a world darkened by physical pain and mental anguish. To lose her would be to lose everything I hold dear in this world, every ounce of fight that I have left. But, if there come a day, when she is too tired to get out of bed, in too much pain to bear, and too exhausted to see the light worth finding at the end of a tunnel of suffering, I would not be the reason that she must continue on in agony. I would allow her to choose to end her pain, no matter how much suffering of my own that would cause, because I love her. I would not want her to press on, in a body that allows no peace and in a world that she no longer wished to belong, merely so I wouldn’t have to lose her. For that would be far more selfish then the taking of one’s own life in the end and I love her enough to not want her to have to be in pain any longer than she can truly handle.

This is my opinion, as a child who’s parent suffers from chronic pain. My opinion would stand the same if my mom’s physical suffering were replaced by mental or emotional pain, or a mental disorder. Now, my opinion – as an individual suffering from chronic pain – is this: No one on this Earth has the right to judge whether I have fought long and hard enough, through a suffering that no body truly knows but my own, to decide that it’s time to throw in the towel. That is why this is my life. To reach a place where you are hurting so much, that the prospect of ending your own life becomes more appealing than continuing to live is not an easily traveled road. It is a dark and lonely one where every bump is met with anguish and every corner turned with sorrow. One does not end their own life happily, just imagine where that person must have been to have made the decision to no longer exist, to meet the other side.

I live in a body that will cause me pain for the rest of my life and that is terrifying. This is in large part because I often don’t know how I’m going to persevere until tomorrow, never mind 30 or 40 years down the road. I think of those who have been in even more pain than I am and who’ve found themselves making the decision that they can no longer fight, that it’s time to move on, and I think how dare others judge them. It’s not like they’re coming out winners, they are losing their lives. I look at my future and wonder how many times I’m going to be at that bridge, praying for the strength to cross it instead of jumping off. The life of those who are in pain is not a life easily thrown away. The truth is, that we work far harder than many people do for our survival, and in it living becomes more meaningful because we know how hard we have fought for the mere privelage of doing so. (And no, I’m not saying those without chronic pain can’t have bad days or go through horrible things too.)

This is the unfairness of a life lived in pain – while you decide to go for dinner – many are using all of their strength – physical and/or emotional – to simply roll out of bed.

So, no, I do not think that it is selfish to say “I have had enough, I cannot take it anymore”. I think that when you’ve spent so long fighting so hard, that you should be able to choose to let go and in the afterlife find a peace that your body never allowed you here on Earth.

In the end, this is my opinion, which based on my own life experiences, I feel justified in giving.

The Truth About Borderline

The truth about being borderline:

It hurts like hell.

It makes you hate things about yourself that you were hardly aware of to begin with.

It makes you angry at those who don’t deserve it.

It makes you constantly question your purpose and existence.

It often makes you wonder how much better off the world would be without you in it.

It makes you hurt yourself in any way possible, just to find some control, some escape.

It makes you turn into someone you hate, someone you’d do anything not to be.

It makes you afraid; of rejection, of yourself, of those moments when you decide you’d rather be gone than face the excruciating pain you know it’s going to inflict on you.

It makes your proper judgement disappear and tells you that whatever idiotic, impulsive, self destructive thing that you’re craving is the right thing to do, just give in to it.

It tells you that your worthless, that you’re nothing. A tiny spec of a pitiful existence in a world full of people better than you.

What is borderline to me? It’s a curse, it’s an evil, calling out to me every moment of the day, begging to be listened to, screaming out just how miserable I am, how I deserve nothing, how I am nothing.

Borderline is my day and my night, my darkest secret and my most obvious devastation.

It is me, and no matter how hard, how desperately I seek solace from it, it will always be there. Every time I turn around, every time I’m alone, every time I catch a glimpse of freedom or peace. It is always there, telling me I am nothing, telling me I’m not worth it, telling me that the world would be better off had I never entered it. And it makes me believe it. And sometimes I think that one day, it will claim my life entirely.

“Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.”

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.

Something Pretty Amazing

A little while ago I wrote about how I entered and won a writing contest held by the Canadian Pain Coalition. The prize was 250$ and to have your article published on the CPC’s website. Little did I know that wasn’t even the half of it.

About two weeks ago I got an email telling me that I had been personally invited to the first ever Canadian Pain Summit being held in Ottawa. My first thought was that’s awesome but I could never afford to get there let alone pay for room and board. But, that’s the pretty amazing part; they are going to cover all of the expenses. Not only are they going to fly me out, pay for my ground transportation, food and hotel, they are also going to do the the same for my mom. They’re doing this for each of the contest’s winners (one for every province).

I’m not too sure what’s expected of me, so far I think it’s just showing up and supporting the movement for people living in chronic pain. The main goal of the summit is to invoke a National Pain Strategy for Canada similar to one that was passed in Australia in 2009. This would direct more funds to chronic pain education, awareness and treatment along with better access for those in pain to the help that we need. They list one of their core values as being that access to the treatment of pain without discrimination is a fundamental human right. Amen to that.

I’m unbelievably grateful for the opportunity to travel cross-country to Ottawa and participate in the summit. I’m especially thankful that my mom – who has suffered from chronic pain for 12 years – will also get to see and learn from the speakers and presentations featured during the summit. I also can’t wait to come back and share everything I’ve learned with all of you.

Here are some startling facts about chronic pain from the Canadian Pain Coalition’s fact-sheet:

• The cost of pain in Canada is estimated to be about $60 billion dollars; more than the cost of diabetes, heart disease and cancer combined.

• Chronic pain is associated with the worst quality of life compared with other chronic diseases such as chronic lung or heart disease.

Veterinarians get 5 times more training in dealing with pain than people doctors and 3 times more than nurses. This is insane. No wonder it’s so hard to get good treatment for pain.

Pain, Pain, Pain

I hate those days when it feels like it’s a marathon just to make it through. The pain is so bad that all I want to do is sleep but laying down makes it worse. Regardless, I’ve spent the last two days sleeping which lucky for me I was able to do for most of the time. Everything seems to be flaring up; my ribs, back, head, feet and though it’s not something I like doing I have been feeling sorry for myself. I’ve also been taking far more pain killers than I like. Not more than I’m aloud, or more than is safe, but I strongly dislike taking pills unless I’m at my limit and right now I am. They work sometimes, but not enough. I’m exhausted and miserable and honestly not sure how long I can take it, but what other option is there?