Team Vasculitis: Thriving through Life with Chronic Illness

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 ho...

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...

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...

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://team...

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...

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 thro...

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...

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 chirop...

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 demoraliz...

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 pus...

Open your mind and heart before you listen to this episode! Look, we all know this is a hot topic and can be EXTREMELY devisive. Giving Danielle a platform to speak about what is happening to her, her process, and the harm that comes from complete dismissal is the right thing to do. Her story is real. So as you listen, hear her. Don't put other viewpoints on her. She shares how she went from a hap...

Think about what a difference it would make in your life if doctors actually believed you when you shared your symptoms. What if you didn't have to wait until things got worse and you were in a critical place before they looked at your holistically for a diagnosis? I know people who have permanent hearing damage, kidney damage, lung damage, heart damage and more that was absolutely without any dou...

Life is DIFFERENT when you have a chronic illness. Different. Not less. It takes time to see it and it takes time to build it… and it's true. If you are feeling like life is LESS now... this one is for you my friend!   Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

Grace is a cop out. There, I said it. So what do I suggest instead? ACCEPTANCE. Listen to this episode to bring yourself into your most aligned state on your journey of self love! Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

When many people started messaging me with questions and asking for my thoughts on the 23 and Me Research Study on ANCA Vasculitis, I of course took a look. I read everything on their website and had questions. So I emailed them and asked those questions and promised to share them with you. I want to point out these are basics for ANY rare disease research study they will do and in the literature...

It is not considered a conventional path to healing, but research shows that functional medicine for chronic illness can help you get to the root cause of the problem. Functional medicine is a type of healthcare that focuses on the whole person and factors such as antecedents, mediators and triggers that have led you to where you are today, which is why it can help to create the conditions for you...

I've been at this a while and have had the amazing privilege to talk to so many people who have been through their chronic illness journey longer, all of whom I have learned so much from. I have also had the honor to speak to dozens of newly diagnosed people. Which has given me a unique perspective and reminder of how far I have come. You might already know this, but there are some realities and t...

When someone asks you how things are, you think of the list of things you aren't doing. You think of the list of things you have "failed" at. Then you end up feeling all kinds of things when people tell you how amazed they are by you. You wonder how they could think that, you know they're just being nice because you aren't being amazing… you are FAILING at EVERYTHING. Right? WRONG! Listen to today...

When I started it was just a feeling and an idea. I switched to posting chronic illness content in November and through November and December thought about what I wanted to build. I thought about Rare Diseases, but honestly it overwhelmed me even though I have a rare disease. Of course rare diseases are welcome here, they are chronic illnesses after all. Just something about it was too much. Then...

One of the messages we get from very well meaning people is that we can do anything. They want us to know that we can still live full lives. We can still have dreams and goals. Which is good, we do need the reminder. We also don't want to be told that we can do anything. In a roundabout way it is saying that we aren't doing enough. The message is to dream bigger, do more. The message we need the m...

I am sure you have had friends get the same flu, or the same cold and mostly they have the same symptoms. Right? People focus on how similar their experiences are. Mainstream wise, it makes sense. A certain set of symptoms is used to create a picture of what a disease is, how it is diagnosed, and then you get treatment based on that assessment. Sometimes the treatment varies depending on severity....

A recent article came out about how the spoonie movement is toxic and we make one another worse, not better. How social media sucks us in and turns our support of one another into obsession that hurts us. So let me start with what a bunch of crap. Total and complete crap. Absolute bull shit. It also very clearly illustrated the ableism of the world around us. So many people just… believe it. Which...

From the perspective of the rest of the world we don't do enough. We "should" be able to function more or we should be able to get better. BuzzFeed writes articles about how we are choosing this and our amazing community is actually encouraging us to stay sick.... I find this unacceptable. Find out what I plan on doing about it! Listen NOW! Join Our Community: http://www.instagram.com/teamvasculit...

So much has been going on for my family and I. We have had some major life changes and it has been a PROCESS. In this episode I share with you what's been happening and a few things I did to manage it without pushing myself too far. Instagram: http://www.instagram.com/teamvasculitis Website: http://teamvasculitis.com  

Welcome to EMPOWERED A series that brings to you resources to empower yourself to live a full life. Meet Kara! She helps you master manifestation to attract more: Health, Wealth and Love. In this conversation Kara shares about her personal journey with anxiety and how understanding her body gave her the tools to get where she could take on her life and build it with joy and intentionality! Connect...