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Elsinosis: Living with Cystinosis | A real life account of beautiful Elsie and how she lives with cystinosis

A real life account of beautiful Elsie and how she lives with cystinosis

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Elsinosis: Living with Cystinosis | A real life account of beautiful Elsie and how she lives with cystinosis | elsinosis.com Reviews
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A real life account of beautiful Elsie and how she lives with cystinosis
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Elsinosis: Living with Cystinosis | A real life account of beautiful Elsie and how she lives with cystinosis | elsinosis.com Reviews

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A real life account of beautiful Elsie and how she lives with cystinosis

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self love | Elsinosis: Living with Cystinosis

https://elsinosis.com/tag/self-love

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Tag Archives: self love. Take Care of Yourself as Well! Posted in Early Years. And there’s a tremendous pressure to hide your negative feelings from the world. Most people will never really understand what you’re going through and hearing the truth of your pain and grief makes them uncomfortable. Wallowing in your pain somehow feels like you’re failing or that you might n...I fell into depression&...

2

gratitude journal | Elsinosis: Living with Cystinosis

https://elsinosis.com/tag/gratitude-journal

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Tag Archives: gratitude journal. Take Care of Yourself as Well! Posted in Early Years. And there’s a tremendous pressure to hide your negative feelings from the world. Most people will never really understand what you’re going through and hearing the truth of your pain and grief makes them uncomfortable. Wallowing in your pain somehow feels like you’re failing or that you...I fell into depression&...

3

mental health | Elsinosis: Living with Cystinosis

https://elsinosis.com/tag/mental-health

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Tag Archives: mental health. Take Care of Yourself as Well! Posted in Early Years. And there’s a tremendous pressure to hide your negative feelings from the world. Most people will never really understand what you’re going through and hearing the truth of your pain and grief makes them uncomfortable. Wallowing in your pain somehow feels like you’re failing or that you mig...I fell into depression&...

4

When It’s More Than Just Picky Eating | Elsinosis: Living with Cystinosis

https://elsinosis.com/2016/10/04/when-its-more-than-just-picky-eating

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. When It’s More Than Just Picky Eating. Posted in Early Years. I recently wrote an essay for Tribe Magazine. Titled,” The Heartbreak of a Picky Eater. Many children with cystinosis have a very small appetite, with most of them getting the bulk of their nutrition through their feeding tubes, usually with something like pediasure or a blended diet. I did however attend a workshop that SHARE held on h...

5

problem feeder | Elsinosis: Living with Cystinosis

https://elsinosis.com/tag/problem-feeder

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Tag Archives: problem feeder. When It’s More Than Just Picky Eating. Posted in Early Years. I recently wrote an essay for Tribe Magazine. Titled,” The Heartbreak of a Picky Eater. Many children with cystinosis have a very small appetite, with most of them getting the bulk of their nutrition through their feeding tubes, usually with something like pediasure or a blended diet. I did however attend a...

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Complaints – Big Life Balance

https://bighugelife.wordpress.com/2015/03/22/complaints

March 22, 2015. March 22, 2015. Because I am now 40, and I have even more license to become as opinionated and contrasting as I would like to be, I bring you a couple of complaints for this Sunday, and no, I have not had even close to a bad day – I’ve just been saving them up. Topic 1: Those stupid “Baby on Board” signs in cars. Just because I haven’t birthed the passengers in my vehicle and don’t have a sign it means you don’t have to drive carefully around ME? How about this for a sign? Click to share ...

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Big Life Balance – Page 2 – Do it all. Screw the dishes.

https://bighugelife.wordpress.com/page/2

Do it all. Screw the dishes. May 1, 2016. May 1, 2016. For Day 6, I will share with you something I wrote for a writer’s group of which I used to be a part – the theme was to write a story that took place over the course of a minute. It’s just too sunny to write a whole separate piece for this today, so here you go and I must go out to dinner. #100daysofwriting. Just wanted to let you know that Julia had her baby last night. Another boy, all healthy and fine. Just thought you’d like to know. ...It didn’t...

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April 2014 – Big Life Balance

https://bighugelife.wordpress.com/2014/04

Do it all. Screw the dishes. Marathons. The TV Kind. April 24, 2014. Or: What I learned from watching 3 Seasons of Scandal in a week. Or maybe less. I don’t want to talk about it. So yes, I admit it: I binge. I watch shows I like in their entirety over brief periods of time. I know I’m not alone, and I also know that maybe there should be some kind of 12-step program for us that say “Just one more. It’s only 44 minutes. I can stop anytime.”. I like the idea of having an oval-shaped office. I crave some i...

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Find Me Elsewhere – Big Life Balance

https://bighugelife.wordpress.com/find-me-elsewhere

I was going to mention that of course I write here (on this very blog you are visiting), but I thought that seemed a little obvious…and that, folks, is precisely the kind of genius you can expect from me! In addition to here, I also write in a few other places:. There’s my official look-I’m-a-coach- website. I also write semi-regularly for Sensual Interest. About all things non-monogamous and swinger-ey. Share on Facebook (Opens in new window). Click to share on Twitter (Opens in new window). Join 864 ot...

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Here we go again. – Big Life Balance

https://bighugelife.wordpress.com/2014/12/31/here-we-go-again

Here we go again. Here we go again. December 31, 2014. January 2, 2015. New Year’s Eve. What a year. I’m not doing what I usually do. I’m taking inspiration from an old friend. And mixing it up a little this year. Add to the pile that I haven’t been here to write anything in WEEKS, and we have a recipe to write one of those miss-mashy posts about everything and nothing. I fell in love with life, and people, and babies, and landed on the important stuff, distilled down into clarity. Time in other places: ...

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Spill It Mom - Spill It Letters (Collection)

http://www.spillitmom.com/spill-it-letters-collection.html

Spill It Letters (Call Out). Spill It Letters (Collection). Spill It Mom Letters. A collection of letters written by you. Dear Mom on the Day You Became the Patient. This letter was written by Erin O'Neill as part. Of the Spill It Mom Letter Collection. Are you interested in writing a letter for this collection? For all the details. Dear Mom on the Day You Became the Patient. Dear Mom on the Day You Became the Patient,. You will begin to see yourself in a different way. You will learn to be kind to y...

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October 2014 – Big Life Balance

https://bighugelife.wordpress.com/2014/10

Do it all. Screw the dishes. October 30, 2014. When I was growing up, we had this black cat. His name was Sam. He would go outside, roam around the neighbourhood and do whatever it is cats do, then come claw at the kitchen window to come in. Lately, when I plug my phone into my laptop to sync (both of which I have had for well over a year), a little message pops up on my phone, asking if I “trust” the computer I am syncing to. Seriously, iPhone? You’re not sure if you trust it? October 17, 2014. When a g...

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I used to be “fat” – Big Life Balance

https://bighugelife.wordpress.com/2015/04/03/i-used-to-be-fat

I used to be “fat”. I used to be “fat”. April 3, 2015. It’s not Thursday, but I am sharing this old photo I found in a bag in the closet. Lots of treasures in there! Sure, my body still has. Fat, and perhaps too much, but it’s not something that I think needs to be fixed and I truthfully don’t give a shit anymore. I would rather fix how I am afraid to trust myself to build the life I really want – it seems to happen, somehow, but I always feel like I’m a little bit hoping to be rescued. It was partly tha...

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Actually thankful it was dark – Big Life Balance

https://bighugelife.wordpress.com/2015/02/02/actually-thankful-it-was-dark

Actually thankful it was dark. Actually thankful it was dark. February 2, 2015. I got up around 6am this morning and as I do every morning, I took Baxter out to the bathroom before giving him breakfast. We traipsed outside, me shuffling along like a Sleepyperson, and him bouncing along like it was the most fun he’d had in months. Ing and he was gone. This was my run-the-dog-outside ensemble this morning:. Yes Fetching, I know. *not pictured are the neon pink flipflops I was also wearing. You are commenti...

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March 2014 – Big Life Balance

https://bighugelife.wordpress.com/2014/03

Do it all. Screw the dishes. What I’ve learned from living in 8 different houses in the last 47 days…realty listings are my porn. March 19, 2014. March 19, 2014. 8 houses in 47 days. It feels like it’s been so much longer, but it really hasn’t. Here’s what I know:. A new favourite mug (I am searching for juuuust the right one), and a meditation cushion. My life is always with me; any moments of panic I have about where my Passport or whatever other necessity – it’s all with me, all the time. I am tempted...

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Elsinosis: Living with Cystinosis | A real life account of beautiful Elsie and how she lives with cystinosis

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with cystinosis. Take Care of Yourself as Well! Posted in Early Years. I’ve been thinking about writing a post like this for a long time now, but have never felt like I’ve truly embraced it. Right when Elsie was diagnosed I knew that I would have to keep myself healthy and happy if I wanted to really take care of her properly. You hear all the time about how important self care is and yet…. I fell into depression&...

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Elsinosis: Living with Cystinosis | A real life account of beautiful Elsie and how she lives with Cystinosis

Elsinosis: Living with Cystinosis. A real life account of beautiful Elsie and how she lives with Cystinosis. Posted in Early Years. Not long ago cystinosis was most definitely a terminal disease. Even up until the early 90’s parents whose children were just diagnosed were told their child would likely not live past 10 years old. But with the introduction of Cysteamine treatment (now a days Cystagon and Procysbi) people with cystinosis are living longer than ever! More often than not people with cystinosi...

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