November 13, 2017

The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast

56 minutes

“What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure” — Robbie “Take a cantelope and try to squeeze it through a blood vessal in your eye.” — Robbie “It’s like your trapped inside a shell” — Robbie

This might be the longest title we have ever written for a podcast. Please tune in to some real-life hacks with chronic pain and chronic illness. Some things to know about when traveling with medications and chronic illness. Also, something to think about with the opioid epidemic and medical marijuana also some things that have really helped Robbie with pain management. This is really an amazing guy and we hope you enjoy listening to him as much as Kyros enjoyed meeting him.

Links From The Podcast

Vasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels.

Vasculitis

Buerger's Disease

Wegener's granulomatosis

Rheumatoid arthritis

Neuropathy

TSA rules on traveling with medication

Medical Cannabis

Magnet is now known as StrutSF

Autoimmune Diseases

Bacterial Meningitis

Biodegradable burial pods

Advanced directive

Bridegroom movie

Annie Leibovitz

Frak

Invisible Not Broken - Robbie Miller Questionnaire answers

Name: Robbie Miller

Age: 36

Disorders: Buerger's Disease, Wegener's Granulomatosis, RA, Chronic Pain, Neuropathy, Vasculitis, Autoimmune

Age disorder became a daily issue: 22

Is there anything you would do if you were not sick? : Would have finished College Degree and be employed

What should other people know about our daily life?: Each new day there are challenges some good some bad but its how you deal with them.

What would make living and moving in the world easier for you?: Peoples Understanding that because you do not show any external ailment that some medical disorders are debilitating which limits some basic activities

Life hacks?: Meditation, Acupuncture, Never meeting a stranger talking to individuals from all walks of life in person and online.

Support from family or friends?: Family Support, Support from friends and friends made online

Do you find that people do not believe you are sick because of your appearance? : Yes

How has this affected you positive or negative?: The positive effect is that I get to spend time with those I love more

How has this affected your relationships?: Yes when originally diagnosed I lost individuals who I thought were friends and those that truly loved me.

What are you afraid to tell even the people closest to you?: Basically, nothing, as I try to live my life as an open book, try to help others understand the variety of Auto-Immune Diseases

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

Best coping mechanism?: Communication, therapy

What are you the most fearful of and what are you the most hopeful for in the future?: Most fearful of leaving this world at a young age as I am an only child and recently lost my father which means my mother would be all alone. My hope is that with my blood and tissue samples that have been taken help progress medical science and a better knowledge of one day finding a cure

Favorite swear word?: Frack

Hosted on Acast. See acast.com/privacy for more information.

...more

View all episodes

By Hosts: Monica and Eva

4.5

9191 ratings