Category: SBS

Why Sepsis Should Be Taken So Seriously

Septicemia

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Sepsis. This is a medical term that I knew nothing about, hadn’t even heard of, until I was diagnosed with it back in 2015. Sepsis is a toxic reaction, a poisoning of the blood, to an infection found in your body and can lead to death (Mayo Clinic). In fact, 1 out of every 18 deaths in Canada is due to Sepsis (Sepsis Alliance). There are more deaths due to Sepsis than Colorectal and Breast cancer COMBINED in Canada (Statistics Canada).

Last summer, if you know me or follow me on Facebook, you would know that I ended up back in the hospital twice due to an infection in my central line – that was Sepsis. The bacteria started in my Hickman, which my nutrition travels through and goes to my heart. Then my heart pumps my nutrition throughout my entire body through my blood. I wasn’t in the hospital just because I was unwell, but because if left too long, I could have gone into Septic Shock and died. The mortality rate for Sepsis increases 8% EVERY HOUR that treatment is delayed (Sepsis Alliance). Sepsis is that serious.

I had decided to write about Sepsis after one of my fellow SBS warriors was admitted into the hospital last week due to Sepsis. Many people that I know that are on TPN has had Sepsis before. It’s very common to those of us with central lines and unfortunately an ongoing battle that we will forever face.

I have been told since my first day leaving the hospital with my line that if I have a fever that I MUST come into the hospital and be checked for infection. It’s not something that I’m willing to play with. It’s not worth risking my life. Thankfully, every time I have been to the hospital with a fever, they’ve taken it very seriously and at least isolate me, keeping me safe from any other infectious diseases that may be in the air.

Why did I choose to write on such a serious and some may say morbid topic? Because this is my reality. Sepsis is something that I, and many others with a Hickman, fear. This is why I’m so paranoid about keeping my line clean. I can’t go in public swimming pools or in the lake for a swim. I have to keep my Hickman site covered at all times. I have a sterile area in my bedroom for where I connect to my TPN, and only a Registered Nurse, my husband or myself touches my line. I’m constantly using hand sanitizer. I have had to become a germophobe to ensure that I stay healthy. Yet another part of my life that has severely changed since my diagnoses.

A huge part of why I do this blog is to educate, and this is what I’m doing today. I’m wanting people to know about another part of what I struggle with, with my diagnosis.

Here are the symptoms of Sepsis:

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Educate yourselves. Sepsis isn’t found just in people who have central lines or suffer from a chronic illness. It’s serious, let’s treat it that way.

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Painless Fashion – Holding On To Your Style While In Chronic Pain

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When picking out your clothes for the day, have you ever needed to stop and think about how much pain they will cause you? You might think about what shoes you might wear depending on how long your day will be or how much time you’ll be spending on your feet. But what about just your jeans? Or what coat you’ll wear? The fit of your shirt?

During the winter months, this is what I need to think about every day. My skin becomes so sensitive during the cold months that even a pair of jeans becomes intolerable. I had to go and buy new clothing this winter just so I didn’t have to wear jogging pants every time I left the house. I had to decide whenever I went out whether I wanted to be cold or in pain because the weight of my winter jacket caused me too much pain.

I wear only comfy clothes while I’m at home, but I like to look good when I leave the house. I don’t mean that I get incredibly fancy, but I like to wear fitted jeans, makeup, and I do my hair. It got me thinking that I should do a blog post about how it is possible to be comfortable, in as little pain as possible, and yet still be fashionable! Thankfully, leggings and tunics are very à la mode right now, but it’s possible for those of us that are in chronic pain to still get our unique fashion sense in without feeling like a bum all the time.

So I enlisted some help from two other of my Spoonie Sisters.

Here’s Sarah! Sarah likes to say that she has Alphabetitis. Her diagnoses include Myalgic Encephalomyelitis, Rheumatoid Arthritis, and Neuro-endocrine Tumors, to just name a few from the extensive list of ailments she battles with. Sarah and I have known each other for a few years, and our friendship has become stronger as we are able to relate to each other. We know that we can cancel on each other at any time and the other doesn’t get upset. We get it. Sarah pushes herself as much as she can to have a fulfilling life; giving everything she has to her passion of art and food, and to her husband and two beautiful girls. Seeing her face beam as she modeled these dresses was just amazing! We don’t get to feel this good all that often because we’re in constant pain, but one afternoon of feeling like a star just made it all worth it!

ab(1of1)-11Amaryllis Dress by RAMONALISA

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Wonder Woman Dress by ANNIE 50

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Ombrelle by CHERRY BOBIN

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Bicicleta Dress by RIEN NE SE PERD, TOUT SE CREE

Catharine has recently been diagnosed with Ehlers-Danlos Syndrome. This is a connective tissue disorder which leaves Catharine’s joints loose, causing them to dislocate often. Her muscles are also constantly tense, compensating for her joints’ slackness. Catharine has moments where even being touched is too much to bear. Every time I see Catharine, she’s got a huge smile on her face. Although I know that she has some unbearable days, Catharine’s joy radiates through her and it’s hard not to be infected by her attitude when she’s nearby.

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Joe Dress by FIG CLOTHING

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Daiquiri Reversible Camisole Bicycle Print by RIEN NE SE PERD, TOUT SE CREE

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Annabelle Dress by 3RD FLOOR STUDIO
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oa Cardigan by FIG CLOTHING

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Abela Long Camisole T003L by MOOVMENT
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akura by RAMONALISA

And then there’s me! I have had Short Bowel Syndrome for nearly two years. I have a central line going into my chest that my IV nutrition gets pumped through five nights a week. Now you may ask, how in the world do my bowels affect the sensitivity of my skin and the stiffness in my joints? I don’t actually know why, but my guess is that this is my body’s way of reacting to the trauma that it endured back in April 2015. The day after shooting these photos, I felt like I had bruises along my spine, I was waddling around the house like I was 9 months pregnant, and literally every inch of me hurt.

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Capitaine Stripe Tee by CAMELEON
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erveza by RIEN NE SE PERD, TOUT SE CREE

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Take It Easy by ANNIE 50

ab(1of1)-9Archipel by CHERRY BOBBIN

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Memories Dress by ANNIE 50

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Babette by MOOVMENT

So then why did I put myself through it? Because doing this photo shoot made me feel good about myself. I felt gorgeous! We had so many laughs. We enjoyed ourselves. For one afternoon, we could forget about our illness and truly enjoy ourselves. And these moments really are few and far between when you’re constantly fatigued and aching.

I also wanted to show the world that it’s possible to be chronically ill and fabulous! We three ladies are proof of that.

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Thank you so much for the wonderful contributions of the following:

 

Clothing – Flock Boutique (Store is in Ottawa, Canada. Everything shown on this blog and more can be found on their website. Direct links are embedded in the pictures.)

Photography – Vintage Bow Photography (Ottawa, Canada)

Makeup – Make-up by Julia Sangalli (Ottawa, Canada)

 

I couldn’t have done it without any of you!

How I Would Describe Myself vs How A Friend Describes Me

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I’ve always hated being asked this in interviews; trying to turn negative sides of myself into positive. I’m very passionate – I’m stubborn and don’t change my mind easily. I work great under pressure – I leave everything to the last minute. I work well on my way own – I hate working on group projects; please don’t make me do it! And then there’s the positive attributes that we want to get across, but still sound humble about ourselves. I have worked in this field for X number of years but still have lots to learn – I deserve a senior position because I know pretty well all there is to know on this topic. I have put together this and this and that, but I did it with the help of so and so – but really, I’m mentioning it because I’ve done most of the work and I’m wanting to take credit without being seen as a jerk. It’s such a balancing act! You’re selling yourself, trying to come off as confident in your capabilities, but not come off as arrogant. It’s an art really.

Well, this isn’t a job interview so I’m going to try and do this without putting a sugar coating on myself.

I’m going to start off with things I know I need to work on. My faults. My weaknesses. I don’t want to sit here and only describe my wonderful traits, although there are many 😉 . I realize I’m far from perfect and how else does anyone grow if we don’t see those areas in ourselves.

I’ve come to realize recently that I’m quite insecure. I think I always have been, but those insecurities went away for a while. I grew confident in the young woman I had become. And now that a lot of my titles and a lot of who I was has been stripped away due to my illness I’m having a hard time with coming to terms with who I am and how I am viewed. I realize everyone’s lives have continued on, I’ve written about that before, but it doesn’t make it any easier some days. Now keep in mind, while everyone’s lives are busy and full with work and social gatherings, I’m literally at home, all day, every day. I try to get out when I can, but even at that, it’s for a few hours, a couple days a week. So I have A LOT of time to sit and dwell and think people have forgotten about me. Which I KNOW isn’t the case, but I get in my own head, and scenarios build, and I basically sink my own ship.

That goes well into my second point, I overthink EVERY THING. I keep those to myself most times, but again, I sit and dwell. I’m a dweller. I’m working on it and to help with that I’ve changed my phone’s lock screen to this picture:

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A reminder that I should never be anxious, to hand my worries over to God, and to find His peace. It’s something to meditate on and we all know I spend way too much time on my phone and so now every time I look at my phone, I’m reminded of these words. Hopefully it doesn’t just become a screen that I bypass all the time, but it will give me a moment to pause and think every time that I see it.

Now to the good things (I already dwell on too much so why dwell on my negative attributes more than necessary)!

I’m a passionate person, which yes means I’m also very stubborn, but this has helped me continue to grow and move towards bigger and better things. I throw myself into new ventures that I truly believe, I advocate hard, and I fall in love with these projects. This, as of late, has been my writing. So yes, although I may just be a blogger (and no I don’t believe JUST being a blogger is a bad thing by any means), I definitely consider myself a writer now. I have grown exponentially in my writing skills and I’m really looking forward to seeing where this takes me.

I’m a mom, and I think a darn good one at that. My patience some days is barely non-existent. I think all moms go through that, but especially on my days where I’m really hurting or not feeling well, it’s even more difficult than on my good days. But I love my daughter, I try to be patient and I see her being patient with me. I look at her and it makes me want to be a better person.

I love. I’ve always loved people. It may not always seem that way as I’m also very much an introvert, but I love people. I love hearing people tell their stories, and having people vent to me, and having people be a part of my life and me being a part of theirs. My compassion for people has made me who I am today, and although some days my heart hurts for people around me more than on other days, I wouldn’t trade that quality for anything.

I’m an open book. I have done everything I can to be vulnerable through this process. I’ve always worn my heart on my sleeve. Ask anyone in my life, if I’m having a bad day, you know it (and unfortunately may get caught in the crossfires – sorry! Blame it on the passion.). I’m sad? You can see it in my eyes. I have good news? There’s no way I’m keeping it to myself.

I am a wife, a mother, a daughter, a sister and a friend. Although my life is very different than I ever imagined it would be, who I have always been is still there. My positive characteristics are growing more than ever, as well as my negative ones peek through more often than they used to. It’s who I am though, and I will embrace it with every fiber of my being.
The rest of this post is written by one of the closest people I have in my life, Maggie Gilbertson. After reading her description of who I am, after wiping the tears away, all I wanted to do was delete my half! Maggie did an amazing job embodying who I am. I am so very grateful to have you in my life. 
The best overall word to describe Carmen would be authentic. I’ve known Carmen since 2009, we met when we were doing our Social Service Worker program at Algonquin College. We became fast friends and even better we were each other’s ‘person’. This was before her gastric bypass surgery, before she met Joe, before she had Maddie and before that fateful day(s) when the incompetence of a fellow human almost killed her. In a way, we did lose Carmen that day. I think it would be impossible for her for her to stay the same person as she was before due to the devastating nature of what happened. We will all deal with life events that affect and shape us, but rarely it’s to the degree that Carmen has experienced. Trying to find peace is a very long and bumpy road and it looks almost identical as the road to success.

 The reason why I’ve chosen the word authentic to start with is because in all my experiences and adventures with Carmen I’ve never once doubted that she wasn’t being real with me. She doesn’t care for drama. She will never shy away from saying something just because it may be the unpopular view or a hard truth. She is kind, but never apologetic about her interpretation and feelings. Her and I don’t always agree and that’s one thing that I love about her. We are both people with strong morals and opinions. We can have a great conversation on any topic without being scared that we’ve said something that offended the other. The Carmen I know always has something to say, in class she would often challenge someone’s comment if she thought their view on it was too narrow or they were completely wrong. She would present another angle to satisfy her conscience as well to add to the diverse opinions that our class shared. I can always rely on her to be honest. We can share our thoughts and feelings with each other without judgment and if someone else was listening it might raise an eyebrow occasionally. Life can get messy and hard sometimes. It’s not always pretty and that’s okay. You need that person in your life and we have that with each other.

 Carmen is an emotional person who is exceptionally kind to others. She loves to laugh and joke around. She’s fantastically sarcastic and puts it to good use. She’s a mom who just wants to have enough energy to do everything she envisioned with her kids before she got sick. As a result from that fateful day another word to describe Carmen is chronically ill. This is something she never thought her future would hold, and neither did anyone who knew her. Carmen fights like a dog every day to not have that label define her. She is so much more than a person who is sick and I am so happy that she asked me to help her with this blog post. At the same time, I can see that Carmen is also trying to embrace her new situation as hard as that is for her. She doesn’t want this label or word to hold all the power. Where people will whisper it in hushed tones. She is taking her power back. She has the strength that most people only dream to have. Her and I share our daily successes and struggles with each other and sometimes we are just SO done with life that we need our ‘person’ to listen and say “yup this sucks”. We don’t always try to fix the problem, listening is enough some days. She has great compassion for others, and it shows through when we talk about our own struggles. Comparatively, our problems are not equally matched, but it’s not a competition. My problems are important to me and Carmen’s are important to her. I don’t need to say that she is a great friend too. That goes without saying.

 Carmen has forgiveness in her heart, and always will. She has a tremendous amount of love to give others and herself. A lot of who Carmen was before she got sick is still with her and she fights to keep it that way. Most days she’s successful and the other days she’ll try again tomorrow. Sometimes there just aren’t enough spoons left. Carmen has been given a new perspective, one that no one could have anticipated, but this is her path for better or worse. She does it with grace and strength. It isn’t always easy and she is still learning how to navigate it, but the warrior inside has been unleashed. She is not a quitter and that’s one of the biggest reasons why I think she is still here today. I would be lost without her in my life(and her sarcastic comments).

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Dear Short Bowel Syndrome

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Dear Short Bowel Syndrome,

You are a jerk. You are literally the crappiest thing that’s happened to me. I hate having you as a part of my life and I wish I had never been introduced to you.

I knew nothing of you before, most people don’t, and most people don’t think you’re as awful as you are because your name isn’t scary sounding. Maybe as bowels you were just tired of people not thinking of you in general and that’s why you decided to act up. I’ve always known what you, my bowels, do in my body, but do we ever REALLY think about it? You digest my food, but nobody ever wonders what would happen if you were to go missing. Well now that I know, I wish I was ignorant to that fact again. Maybe nobody thinks much of you because you’re such an irritable bastard!

Well now you have my attention. I miss you more than I’ve missed anything. I would give basically anything to have you back. You feel like a long lost lover, one that I will forever yearn for. One that I will never forget. Your absence forever haunting me.

I know you’ll never come back, you’re gone forever, but know that you will never be forgotten and that I will think of you every day.

With love and despair,

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