Tag: SBS

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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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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but God…

Before I get deep into my first blog post, let me summarize for you what happened to me 10 months ago. In April 2015, after a couple trips to the emergency room, I was rushed in emergency surgery after becoming tachycardic and showing signs of major abdominal pain. After my first surgery, they had removed the majority of my small intestine, disconnected my esophagus from my stomach and my stomach from the remainder of my intestines. When I woke up from sedation, two days later, the surgeon told me that I would never eat or drink again and that my quality of life was going to be severely diminished. After a few more days, I still was unstable, and so I transferred to another hospital where there was a gastro specialist. 6 days after my first surgery, I showed no signs of improvement and underwent a second surgery. The remainder of my small intestine had continued to die and the surgery resulted in them having to remove the rest of it along with one-third of my large intestine. Although the first surgeon was wrong and I can eat and drink, I can’t absorb any nutrients and I now face a life of living with IV nutrition, deficiencies and constant exhaustion.

You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.  –Genesis 50:20

This verse has been what’s gotten me through, day by day, for months now. I still have no clue why this happened to me. I still have my “why me” days, and I’m sure I will for a long time to come. I don’t believe that God caused this to happen to me and I don’t think this “happened for a reason” — and in fact I get insulted when people argue with me on that point. I think this is one of the many moments in life that you just have to say “crap happens”. I do however believe that God saved me. The doctors themselves are baffled that I have survived this. And I hope that because it did happen, that it can be used for good – that my pain is not in vain (whatever that may look like).

Those two words “but God” are a turning point in the verse I quoted above. They represent hope that God can take this horrible situation and use it for good. Use it to help someone else. The hope that I find in this verse is what gets me through my painful mornings and helps me get to the end of my beyond exhausting days. Without hope, I wouldn’t be able to get out of bed in the mornings. I would be drowning in despair. I would not be able to do this without my faith in God and the hope that things will get better.

I definitely still have rough days, quite often actually. But when I have good days, I make sure to make the best of them. I try and stay positive, but I allow myself to have my negative days where I throw fits and yell at God. Eventually the reality of it all will become normal and my rough days will be fewer and farther between as time goes on and with God’s help.

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