Invisible Not Broken - Chronic Illness Podcast Network

Life can be full of kismet. I just started doing live recording on ZubiaLive about chronic illness and trying to live a life and the site wanted to connect with LinkdIn. I have not been active on LinkdIn since I was a photographer. So I did my best to create a decent profile for Invisible Not Broken Podcast. In less than an hour I had gotten a lovely email from a Pain Management Doctors PA. who also has Ehlers Danlos Syndrome. A fellow zebra who knows things from the other side of the stethoscope? I grabbed her for an interview the very next day!

I had some other things to post but this is far too important. If you want to skip right to the point on pain management lists and what to do or say to have a better emergency room experience go to minute 26 and keep listening. We meander a bit but you will get what you need. If you have the time listen all the way through. This woman has a way of breaking things down and doctor PTSD might be my new favorite phrase.

Links

Ehlers Danlos Syndrome

CSF Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

CURE

Regan Era Mental Health Policies and California

Links

Ehlers Danlos Syndrome

CFS Leak

Krantom I wish I had a better source for this but getting information on Krantom for pain management is not easy. We are in no way endorsing any particular pain management I think we would all just like unbiased pain management information.

California Taxes on Medical Marijuana (call your congressperson or Senator)

VA Opioid Restrictions

Website/Blog, Twitter, & Instagram Handle

MypainIQ.com (in progress), twitter: @brianna3207, IG:@Brianna_pa.c

What is your disorder? *

hEDS, spinal CSF leak, POTS, dysautonomia

At what age did your disorder become a daily issue? *

26

Who were you before your illness became debilitating? *

13

What would you do if you were not dealing with your invisible illness? *

Probably would still be chasing happiness and continuing my negative self- talk

What would you like people to know about your daily life? *

It's hard! The suff most people take for granted is often a really big deal if I can accomplish it that day! Also my degree of functionality is not by accident. I literally spend hours a day doing PT, meditation, organic, GF, non dairy meal prep, etc.

What would make living and moving in the world easier for you? *

If more people were kind to each other! And if healthcare providers werent held hostage by insurance, treatment would be so much more timely and competent

Do you have any life hacks? *

Lots of pain hacks (a whole other interview's worth!), kindness, medical form for the ER (I'll send the word doc), meditation

What kind of support do you get from family or friends? *

Amaaaazing support from my hubby. My brother is awesome and so are my parents/ inlaws. I have a great employer and solid group of friends

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

All the time! The time the ER doc said I didn't have EDS bc my skin wasn't stretchy enough. And my patients dont believe how sick I am

How has your invisible illness affected your relationships? *

Yes, but for the better. I am kinder to myself, surrounded by more genuine and accepting humans, and the toxic/superficial people have sashayed away!

Is there anything you are afraid to tell people in your life? *

I think I'm afraid that people can't handle deep convos about morality and disability.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes! I essentially have to prove how sick I am

What is your best coping mechanism? *

Meditation for the mind, cannabis and exercise for the body

What are you the most concerned about and thehopeful for in the future? *

I'm concerned about the lack of treatment for my fellow zebras, but I'm hopeful that I can help change that!

What is your favorite swear word?

Fuck!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Gender bias in medicine, opioid hysteria negatively affecting pain patients, cannabis as a viable alternative

What is the hardest and/or best lesson your condition has taught you?

I've learned to view each day as a gift!

What is the best purchase under $100 that helped your life

My journal!

CURE

Regan Era Mental Health Policies and California