arielaaviva
EDS Conference: GI symptoms
Because your GI tract is made primarily from connective tissue, EDS can cause a number of GI symptoms. Dr. Qassim Aziz's talk on GI...
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arielaaviva
Nov 25, 20183 min read
Finding my herd
The people of Ehlers-Danlos Society's conference in Baltimore I was curious, when arriving at the EDS Society's conference this summer,...
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arielaaviva
Nov 25, 20182 min read
EDS Conference: Fatigue
As Dr. Francomano and Dr. Maitland stated in their talks, fatigue for EDS/MCAS patients can be profound (which is part of why I think all...
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arielaaviva
Nov 25, 20182 min read
EDS Conference: the food!
I was very anxious going into this conference. Work conferences have never ended well. Usually I feel terrible the whole time and the...
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arielaaviva
Nov 25, 20181 min read
EDS Conference: Patient/physician relationships
Every time I have to see a doctor, I get a wave of 1,000 emotions. I'm nervous they won't give me enough time to explain myself, anxious...
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arielaaviva
Nov 25, 20182 min read
EDS Conference: Psychology
Speakers on this topic seemed hesitant and careful about how they presented. The vast majority of us patients have been told that we...
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arielaaviva
Nov 4, 20184 min read
A tale of two Novembers
(In case you need a song to listen to while you read this -- Funeral by Phoebe Bridgers sounds like Novembers feel. Enjoy :-) Novembers...
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arielaaviva
Nov 1, 20184 min read
The Power of Lists
I will (hopefully soon) be sharing a "tips and tricks" post about living with chronic illness, in which I've written that making lists...
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arielaaviva
Nov 1, 20185 min read
Trying to make conversation
I was talking to someone last week who has a young son. She said it’s difficult to find anything else to talk about, because he’s such a...
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arielaaviva
Oct 28, 201810 min read
Elimination diets
A User's Guide The number of diets suggested to me in the last 20 years is astounding. I've tried dairy-free, gluten-free, high-fiber,...
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arielaaviva
Oct 8, 20181 min read
Low-histamine, high-protein, gluten-free pancakes!!
I have to say, of all my recipes, I think I'm most proud of this one! I've combine aspects of different recipes, made adjustments for my...
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arielaaviva
Oct 5, 20184 min read
Painsomnia
As long as I can remember, I'd wake up at 3 am with my head spinning, unable to fall back asleep. Some nights I'd have so much trouble...
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arielaaviva
Oct 1, 20184 min read
How can I not feel anxious?
*Serious CW for sexual violence and overall distress over the state of the world* Two years ago, I was driving to my friend’s house. I...
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arielaaviva
Aug 12, 20183 min read
Reflections from a failed afternoon
We wanted to go for a hike today. I LOVE hikes, and they are currently the only way for me to get any cardio. I can move slowly, being...
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arielaaviva
Aug 11, 20184 min read
Redefining my fashion sense
I recently read Surviving and Thriving With Invisible Chronic Invisible Illness by Ilana Jacqueline. It's a great (and easy) read, and I...
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arielaaviva
Jul 27, 20183 min read
The Problem With the Beighton Score
An incomplete picture that can exacerbate the misdiagnosis/undiagnosed trend A few years ago, my mom was reading medical journals and...
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arielaaviva
Jun 19, 20185 min read
My deteriorating need for credible sources
I recently had a pleasant conversation with someone about CBD oil that quickly escalated into an ugly debate. The reason? I was still...
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arielaaviva
Jun 10, 201810 min read
Closeted body image issues
Surrendering to doctor-approved weight gain after years of a strained relationship with food **Note: this post is about my struggles...
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arielaaviva
Jun 8, 20184 min read
How food affects relationships
When I asked spoonies about their relationships with food, many of us cited it as a strain on our social lives. I once watched a...
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arielaaviva
Jun 8, 20186 min read
And the dish ran away with the spoon(y)
When food can cause so much damage, it's tough to enjoy eating My parents always joked that my dad eats to live and my mom lives to eat. ...
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