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arielaaviva
Nov 23, 20191 min read
Notes for new zebras
I've written enough emails to the newly diagnosed (or self-suspecting, soon-to-be diagnosed), that I decided I should post the info here!...
158 views
arielaaviva
Jul 28, 20199 min read
Privilege and Intersectionality as a Patient
First of all, anyone who bristles at the word “privilege” -- you’re not alone! I had a really tough time understanding different types...
70 views
arielaaviva
Jul 26, 20194 min read
Managing Medications
It’s a cruel irony to have a million medications to manage… all within deep brain fog. Complex illnesses require so much to keep track...
47 views
arielaaviva
Mar 31, 20193 min read
If only it were just the flu
Jon Rodis, an activist with Marfan Syndrome, presented at the EDS conference in Baltimore about the challenges of getting on disability....
38 views
arielaaviva
Mar 31, 20193 min read
Thermoregulation
One of the strangest parts of being sick is just trying to find a comfortable temperature. As I write this, I am in a t-shirt, no pants,...
26 views
arielaaviva
Mar 31, 20193 min read
I'm sorry I couldn't eat your food
How guilt has become an integral part of social meals It’s the holiday season. Festive meals are everywhere. We had a family gathering...
221 views
arielaaviva
Mar 18, 20192 min read
Finding my voice
**Note: more detailed stories from this year's Spoonie Retreat will come as soon as I have the time, energy, and head space. But for...
35 views
arielaaviva
Jan 29, 20194 min read
Anxiety and EDS
The Ehlers-Danlos Society is trying to address this issue. They recently created this toolbox that I recommend you check out! At the...
62 views
arielaaviva
Jan 15, 20195 min read
Complexity
I recently wrote a post intending to address this but got into a tangent, so here goes take two! Connective tissues are in every part of...
21 views
arielaaviva
Jan 14, 20192 min read
Cookie Drunk Kitchen
About the title — each food triggers a slightly different reaction for me. Sugar activates my POTS symptoms, making my heart race and my...
27 views
arielaaviva
Jan 8, 20196 min read
The Many Types of Pain
Pain has been with me for most of my life. I used to think that this is just what life is. Of course, then I started asking others...
47 views
arielaaviva
Jan 8, 20195 min read
Importance of a good attitude
I described a lot of types of pain in my last post. I’ve been thinking lately about how attitude can impact our perception of pain. Take...
26 views
arielaaviva
Jan 2, 20198 min read
"Whatever you are, be a good one" -- William Makepeace Thackeray
I wrote last year that I don't do typical New Years resolutions, but rather use it as a chance to reflect on who I've been and who I'd...
21 views
arielaaviva
Dec 5, 201810 min read
Gratitude Month
Happy December everyone! As I mentioned previously, November sucks. But a friend challenged me to turn it into a month of gratitude, and...
23 views
arielaaviva
Nov 25, 20181 min read
Ehlers-Danlos Society Conference in Baltimore
(written in August) Wow, what a week! It's been a whirlwind of emotion, information, amazing people, and discovery. There is so much...
74 views
arielaaviva
Nov 25, 20184 min read
EDS Conference: Diagnosis
For such complex diseases, the diagnoses of EDS and POTS are actually quite straightforward. Unfortunately, it takes an average of 6...
27 views
arielaaviva
Nov 25, 20184 min read
EDS Conference: EDS
Obviously the Ehlers-Danlos Society's conference had quite a bit to say about EDS... This post will cover highlights, but also links to...
14 views
arielaaviva
Nov 25, 20184 min read
EDS Conference: POTS
POTS is prevalent enough in the EDS community to warrant two separate talks. Autonomic Dysfunction and EDS, by Dr. Satish Raj slides here...
28 views
arielaaviva
Nov 25, 20183 min read
EDS Conference: MCAS
"Like you have the flu all the time (tired, cold, hot, pain)" -- Dr. Pradeep Chopra I was so glad that they had multiple MCAS talks at...
59 views
arielaaviva
Nov 25, 20182 min read
EDS Conference: Chronic Pain
Management of Chronic Pain Dr. Pradeep Chopra (slides here) First, figure out cause of pain Ex: shoulder pain could be subluxation,...
42 views
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