A breakdown of what Behcet's Disease and what you need to know as a patient as well as insight from patients on life with Behcet's. Here's what you'll find in this episode: What is Behcet's? What are the classic symptoms of Behcet's? How is Behcet's Diagnosed? What Causes Behcet's? Who gets Behcet's? How is Behcet's Treated? Side Effects from Medications Life with Vasculitis Patient to Patient Cat's Episode: https://fightlikeamama.libsyn.com/ep-118-vasculitis-interview-with-behcets-disease-warri...
May 20, 2023•21 min•Season 1Ep. 196
A breakdown of what Cutaneous Small-Vessel Vasculitis (CSVV) and what you need to know as a patient as well as insight from patients on life with CSVV. Here's what you'll find in this episode: What is Cutaneous Small-Vessel Vasculitis? History of Cutaneous Small-Vessel Vasculitis? What are the symptoms and signs of Cutaneous Small-Vessel Vasculitis? How is CSVV Diagnosed? How is CSVV treated? Who gets CSVV? Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button...
May 19, 2023•15 min•Season 1Ep. 195
A breakdown of what Eosinophilic Granulomatosis with Polyangiitis is and what you need to know as a patient as well as insight from patients on life with EGPA. Here's what you'll find in this episode: What is EGPA? What are the symptoms of EGPA? Complications from EGPA How is EGPA Diagnosed? How is EGPA treated? Side effects from the medications Can EGPA come back? Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do...
May 18, 2023•17 min•Season 1Ep. 194
A breakdown of what Cryoglobulinemia and what you need to know as a patient as well as insight from patients on life with Cryoglobulinemia. Here's what you'll find in this episode: What is Cryoglobulinemia? What are the symptoms of Cryoglobulinemia What Causes Cryoglobulinemia? How is Cryoglobulinemia treated? Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things he...
May 17, 2023•10 min•Season 1Ep. 193
It can be so easy to want to just go all in with a new friend who "gets it" when for so long you have felt alone in your rare disease or chronic illness journey. Today I talk about why you need to avoid the "too close too soon" trap and how to do that! You can find Team Vasculitis at: http://www.teamvasculitis.com Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things help others find the podcast, find our...
May 16, 2023•17 min•Season 1Ep. 192
Meet Lauren! A Vasculitis warrior who has managed her career at a large corporation, with two daughters, under the age of 5 at the time of diagnosis, AND a rare disease that caused permanent damage to organs as she sought answers. Watch her talk here: https://rumble.com/v2nz4m8-navigating-a-career-and-motherhood-with-a-chronic-illness.html Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things help others ...
May 16, 2023•9 min•Season 1Ep. 191
Today's episode is a special one! Today for the 2nd Annual Team Vasculitis International Vasculitis Awareness Day Symposium Kayla shares with you her journey with Vasculitis, POTS, Fibromyalgia and more... and not only how fitness helps her every day, but how it actually takes much of her pain away. Follow Kayla at: https://www.instagram.com/autoimmune_fitwarriorsoul Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! T...
May 16, 2023•29 min•Season 1Ep. 190
A breakdown of what Cogan's Syndrome and what you need to know as a patient as well as insight from patients on life with Cogan's. Here's what you'll find in this episode: What is Cogan's Syndrome? Who gets Cogan's Syndrome? What are the symptoms of Cogan's Syndrome? How is Cogan's SyndromeDiagnosed? How is Cogan's Syndrome treated? Side Effects from Medication Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me ...
May 06, 2023•13 min•Season 1Ep. 189
A breakdown of what Aortitis and what you need to know as a patient as well as insight from patients on life with Aortitis. Here's what you'll find in this episode: What is Aortitis? What causes Aortitis? Who gets Aortitis? What are the symptoms? How is Aortitis Diagnosed? How is Aortitis treated? Side Effects from Medications Your Medical Team Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and ...
May 05, 2023•16 min•Season 1Ep. 188
Meet Lucy! After fighting for anyone to take her seriously, because she was "too young" to be sick, Lucy had to learn how to manage life with Takaysau's Arteritis, being a young mom, and advocating for herself. Now, she uses one of her strongest tools - nutrition - to help others live healthier lives. Read her blog post on the Anti-Inflammatory Diet here Follow Lucy: Instagram @ _heal_thy_self__ Facebook at Heal THY self Nutrition Email: lucy@healyselfnutrition.ca Please don't forget to click th...
May 04, 2023•1 hr 14 min•Season 1Ep. 187
A breakdown of what Anti-GBM/Goodpasture's Syndrome and what you need to know as a patient as well as insight from patients on life with Goodpasture's. Here's what you'll find in this episode: What is Goodpasture's? What causes Goodpasture's? What are the symptoms? How is Goodpasture's Diagnosed? How is Goodpasture's treated? What are Your chances of getting better Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do...
May 03, 2023•19 min•Season 1Ep. 186
A breakdown of what Central Nervous System Vasculitis and what you need to know as a patient as well as insight from patients on life with CNS/PACNS. Here's what you'll find in this episode: What is CNS? What are the symptoms of CNS? What causes CNS? How is CNS Diagnosed? How is CNS treated? Side effects from the medications Life with Vasculitis Patient to Patient Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! Thes...
May 02, 2023•18 min•Season 1Ep. 185
I get asked so often “What is Vasculitis?” So today - if you’re listening to this in real time - it is May 2023 and that means it’s Vasculitis Awareness month! In honor of that I thought I would kick the month off with an overview of what this family of diseases is. In today's episode: What is Vasculitis? Who gets Vasculitis? What are the symptoms of Vasculitis? What are the types of Vasculitis? How is Vasculitis treated? Side effects from medications Relapse rates How is Vasculitis diagnosed? W...
May 01, 2023•21 min•Season 1Ep. 184
Cold can be healing! Have you ever utilized heat or cold for your pain or for your health? Cold water therapy is the practice of using water that’s around 59°F (15°C) to treat health conditions or stimulate health benefits. It usually involves submerging your body in cold water for a short period of time, usually between 30 seconds to a few minutes. There are definitely benefits to cold therapy… used properly, if you are healthy enough to implement them. (please consult a doctor before you try c...
Apr 25, 2023•19 min•Season 1Ep. 183
The longer you struggle with your health - physical or mental, the more of a struggle it becomes because it starts to influence more and more aspects of your life. So the best thing you can do is to face it head on and do it with a gameplan. Management is essential to your ability to function. So… Here is what I suggest you focus on to go from overwhelmed by all of these aspects of your life, to managing it and even maintaining stability which will allow you to improve many aspects of your life....
Apr 18, 2023•17 min•Season 1Ep. 182
I felt so alone. I felt really lost. I felt completely scared. I didn’t know what was happening, or how to totally manage it. I was losing friends and had loved ones even attacking me because I wasn’t getting better, or showing up for them the way I used to be able to. Even the people I told how sick I was, didn’t understand. They interpreted it as - you have a diagnosis and had treatment, why aren’t you better? Google was even worse... that's how I knew I needed to speak up. Today's episode tel...
Apr 11, 2023•15 min•Season 1Ep. 181
One of the biggest struggles the chronic illness community struggles with is the harsh realization that doctors will lie and won’t care and won’t help the vast majority of the time. Yes, seriously… the vast majority of the time. Today I share my three favorite lies. Here's the Reel I mention: https://fb.watch/jH7JV6pi1h/ Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a review! These two things help others find the podcast, f...
Apr 04, 2023•12 min•Season 1Ep. 180
When it comes to living with a chronic illness it can feel as though you’re living in a completely different reality than the rest of the world around you. Loved ones you were once in such alignment with, no longer understand what you’re going through… sometimes they even say things like they don’t really know who you are anymore. They’re dismayed at how to support you and interact with you. They aren't going to get it... today we're going to talk about that. Please don't forget to click that su...
Mar 28, 2023•12 min•Season 1Ep. 179
My family moved across the country - and one of the biggest reasons was to be closer to different care for my rare disease. After we had been treated poorly, ignored, attacked, and dismissed by multiple medical facilities in California I had only the smallest glimmer of hope that things could be different... Today I share with you what happened when I visited University of North Carolina's Vasculitis Clinic. Please don't forget to click that subscibe button whereever you listen to the podcast an...
Mar 21, 2023•24 min•Season 1Ep. 178
One of the challenges you face as a chronically ill patient is figuring out how to best care for and support your body. For most of us it doesn’t take long to discover that clinical medicine is only one piece of the puzzle. I talk alot about functional medicine because I truly believe that so much more can and should be done to support your health and your body holistically, but that in no way means that I am anti pharmaceuticals. The difference is important to understand though. In this episode...
Mar 14, 2023•20 min•Season 1Ep. 177
As chronically ill patients we are gaslit all of the time by basically everyone who isn’t also chronically ill. If you’ve been here a while, you know that we need more awareness and understanding. We need to be able to have open conversations about our reality and our care. Today I talk about something affecting me... as a conversation starter and an example of what need to be talking about and how we need to have the space to be honest with one another. Please don't forget to click that subscib...
Mar 07, 2023•14 min•Season 1Ep. 175
Living with a rare disease is incredibly challenging. Not only are you fighting your own body, but you're also fighting a medical system not equipped to help you, insurance that cares only about their bottom line, society that will label you many derogatory things, media that never properly represents you and loved ones who don’t know how to show up for you. It’s a HARD thing to negotiate even on the best days. Today I put together a list of 10 things you need to know about living with a Rare Di...
Feb 28, 2023•11 min•Season 1Ep. 175
We talk about the dark hard stuff a LOT because it needs to be said. Our silent suffering hurts us more than it helps us in literally every aspect of our lives and our care. The problem with us highlighting this conversation and VERY IMPORTANT aspect of our lives, is that in the lack of understanding in the world the pendulum swings the other way and people end up thinking we are always suffering or if you have a chronic illness you are always in a bad place. This is not accurate. Join us on Ins...
Feb 21, 2023•16 min•Season 1Ep. 174
Do you work out? Is it safe? What if you're in a flare? When it comes to our health it can be overwhelming to figure out what's right and what will hurt you. Today Kay and I talk about how she approaches things with her clients and how she handles things herself as she navigates her own health journey. Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email Connect with Kay: Instagram: https://instagram.com/autoimmune_f...
Feb 16, 2023•48 min•Season 1Ep. 173
What I really wanted to share is what this flare has been doing to me mentally and emotionally… because that’s where we need the most support and understanding and it’s where there is the least amount of discussion… You can find all kinds of scientific papers on the increases of dosage. But what it does to us outside of the clinical medical world is rarely talked about… So - here goes… Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/...
Feb 14, 2023•18 min•Season 1Ep. 172
Relationships are SO HARD! Throw in onset of a chronic illness... and WOW. Right? Today I sit down to talk with Life and Relationship Coach Ariane Olshansky about how important understanding your energy is and how to navigate onset or a flare without losing the connection and intimacy. We don't just talk about it from what the patient needs, but also how to allow the partner to process and go through all of the feelings too. This is Part One! We will be discussing Dating when you have a Chronic ...
Feb 09, 2023•1 hr 7 min•Season 1Ep. 171
It's February! Which means it is Rare Disease Awareness Month if you're listening to this in real time! If not - this episode is full of important facts and insight into struggles that Rare Disease patients deal with. From being labled "drug seekers" to no being able to afford travel to appointments or treatments and so much more. Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email...
Feb 07, 2023•17 min•Season 1Ep. 170
Introducing Dr. Michelle Arietta DC! She is a licensed chiroprator and has been helping people achieve their health goals for 20 years. I personally worked with her and saw imporved sleep, less neuropathy in my legs, and so much more! I had a nerve study done and the doctor told me there were signs of regeneration, then asked if I was seeing a chiropractor! In this conversation we cover why chiropractic is so important and why I don't consider it "alternative" at all! Connect with Dr. Michelle: ...
Feb 03, 2023•54 min•Season 1Ep. 169
I get it. Your whole life did a 180 when you got sick. You had to step away from dreams and goals and there is a chance you’ll never get those back. You even see people achieving these incredible levels of health as they get into remission… but you’re not there so you feel this huge range of emotions… sadness, fear, anger, brokenness, resentment and whatever else bubbles up. It can be so demoralizing to see person after person share their story of how they achieved health after diagnosis and not...
Jan 31, 2023•14 min•Season 1Ep. 168
It seems like right now so many people are struggling in this community. So if you’ve been feeling that way, you aren’t alone. My DMs have been flooded by people sharing stories of everything from physical issues, to emotional issues, to monetary issues, and everything in between. So I thought, what you might need to hear the most is some love and support that doesn’t shy away from the dark or push you into the bright shiny side that you’re not really ready for… Here it is… a love letter from me...
Jan 24, 2023•9 min•Season 1Ep. 167
