The Ins and Outs of Vasculitis, Rheumatoid Arthritis, Buergers Disease, and Wegners Granulomatosis This Week on our Chronic Illness Podcast
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.
Magnet is now known as StrutSF
Invisible Not Broken - Robbie Miller Questionnaire answers
Name: Robbie Miller
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
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