Month: March 2017

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!

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