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

“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” — RobbieThis 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 PodcastVasculitis: When constriction makes your blood feel like a cantaloupe moving through your blood vessels. VasculitisBuerger's DiseaseWegener's granulomatosisRheumatoid arthritisNeuropathyTSA rules on traveling with medicationMedical Cannabis Magnet is now known as StrutSFAutoimmune DiseasesBacterial Meningitis Biodegradable burial podsAdvanced directiveBridegroom movieAnnie LeibovitzFrakInvisible Not Broken - Robbie Miller Questionnaire answers Name: Robbie MillerAge: 36Disorders: Buerger's Disease, Wegener's Granulomatosis, RA, Chronic Pain, Neuropathy, Vasculitis, AutoimmuneAge disorder became a daily issue: 22Is there anything you would do if you were not sick? : Would have finished College Degree and be employedWhat 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 activitiesLife 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 onlineDo you find that people do not believe you are sick because of your appearance? : YesHow has this affected you positive or negative?: The positive effect is that I get to spend time with those I love moreHow 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 DiseasesDoes the fact that your disease is invisible change how healthcare professionals treat you?: YesBest coping mechanism?: Communication, therapyWhat 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 cureFavorite swear word?: Frack    Hosted on Acast. See acast.com/privacy for more information.