They grow and grow.

My favorite little guy, then and now.

Summer Stuff 111.2

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A happy birthday it was.

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I got to spend some time with my little buddies – a perfect way to spend a birthday! :)

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Birthday flowers :)

One Long Week

Sorry for the lack of new posts, this past week has been super busy and filled to the brim with ups and downs. I got to spend the day with my best friend who’s back in town for the summer. We were out and about all day which is always hard on my body, but it was completely worth it. The day after that mom and I had to go clothes shopping to try and find something to wear to my cousin’s wedding this past weekend. About 10 minutes into shopping my back is always screaming at me to go sit down or lay down. That aside I’ve never been a fan of shopping, unless it’s an art store and we don’t have any of those nearby.

My brother and his girlfriend came over from Alberta to stay with us for a few days so they could spend some time in town before the wedding. Then on Saturday we drove the two and a half hours to Horsefly to the wedding. It was a pretty tough and long day, especially with the 2 hours of sleep I got the night before. But, it was wonderful to see so much family and I’m so happy for my cousin. The ceremony was perfect and the location was breathtaking. I got some pretty good pictures with my new zoom lens too. I was practicing with it first on my brother’s ridiculously photogenic girlfriend. 

We stayed overnight at a hotel in Horsefly to shorten up the day a bit and drove back home in the morning. My brother went back home Tuesday and now everything’s generally back to normal and I’ve been getting some much needed sleep and down time. It’s so odd when I think of how I could do all of those things endlessly before without being even a fraction of how sore and exhausted I was by the end of the week. Even now it takes some getting used to. 

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My cousin, being the amazing person she is, also made an amazing gesture; instead of doing party favors for the wedding they decided to make a donation to an organization that means a lot to me. With that I chose the ILC foundation because of how hard they work and how supportive they’ve been, and lastly, how important organizations like that are for young people in pain. I’m so indescribably grateful to them for not only choosing to make a donation but for involving me in the decision as well.

A cat and duck tale.

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Sally cuddling with Ducky in her osteoarthritis friendly heated bed I made her. Her joints seem to be bothering her a lot so I made it on the ground so she wouldn’t have to climb up. She has to be in whatever room I am, always! Even if she’s just sleeping near me. If I get up to go to the washroom or to grab a drink when she’s dead asleep she’s still on my heels within minutes. She prefers to sleep on me but a lot of the time between the two of us and our ages (haha!) it’s too uncomfortable.

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There’s this screaming in my ear…

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

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

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

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

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

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

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

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.

An update of sorts.

First of all, I want to extend my thoughts and prayers to everyone and anyone affected by the theater shooting that occurred last night. I am so sickened and saddened that this happened. I can’t even fathom what the victims and their families were and are going through, but from the depths of my heart and soul; I wish them well. It feels like a sad day to be human, when reminded that our species is capable of such senseless horror and cruelty. May those who were injured make speedy recoveries with as little added suffering as possible and those who were lost find peace.

Now, I realize that I haven’t been blogging about any medical related things in these last few posts. Mostly because nothing too interesting has been happening.

My shoulder did dislocate for the first time the other day. Well, actually, my guess would be that it was more of a subluxation than a full dislocation, but painful none the less. And disheartening. Another reminder that my tissue is weakening and that things will and are only going to get worse with time. To make things even more pleasant, a couple of my ribs decided to also subluxate today. They popped back into place fairly quickly but as you can imagine, the surrounding tissue and what not are going to take a while to heal. Sadly, I’m becoming very used to this. It seems like every time I finally heal from the last subluxation another one occurs. I kept my arm in a sling for the first little while after the shoulder incident but it seems unnecessary now, it doesn’t seem to be helping as much.

I recently ordered an orthopedic corset off of the internet for the purpose of compressing my ribs and hopefully keeping the lower ones in place. I got the idea because when my ribs are moving around it always helps to hold my arm down against them. The sizing got messed up on the first order so I’m just waiting to get this one and try it out before I give my review on it. I’m really hoping that it does something.

In other events, I’ve been avoiding my doctor like the plague. Not for any specific reason really, only that I’m just tired of doctors. And I’m also still contemplating what to do about my beta blocker situation and I need to decide on something before going in. I finally made an appointment for next Friday so I really need to make a decision.

Now I’m going to be super cliche and talk about the weather. Mostly only because we’ve had more thunderstorms in the last couple weeks than I can remember having throughout my entire childhood. Which is awesome because I love lightning. Watching it at least. I love the rain too.

This picture was taken in my hometown where there’s been some flooding. Where the geese are is actually a road. It floods like this once a year, and every once in a while someone is silly enough to attempt to drive through it.

Summer’s beauty.

She was afraid of what she’d find when she looked in the mirror. Deep in her eyes was a truth that had so long sat dormant that eventually even she had all but forgotten it’s existence. 

She had chosen to believe instead, that her reflection was not one worth summoning and that it held no beauty, no hope and no promise.

I wondered how she could not see it; that she was no less than a flower, delicate, but undeniably beautiful in it’s fragility.

So much so that like a welcomed summer, my life would feel absolutely incomplete in it’s absence.


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