Team Vasculitis: Thriving through Life with Chronic Illness

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 happy, healthy human to someone who has been hospitalized multiple times, and has permanant damage to her body. She shares the dismissal from doctor after doctor who were confused and unsure about what what happening to her - and how the possible tie to the Covid 19 Vaccine slowed getting answers.

Thank you for listening to her today. It is her hope, as it is mine, that sharing stories of reactions will result in more research - more science.

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Vaccine Injury Resources: React19.org https://react19.org/

Front Line Critical Care Alliance: https://covid19criticalcare.com/

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 doubt due to a delay in diagnosis.

What would the world be like for us, and what effort would be made to find answers if chronic illness was taken as seriously as cancer? To find out what I think can change it all... listen to today's episode!

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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!

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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!

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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 they provided they have worked on a handful of studies with the pharma company GSK that has developed 40 potential therapies. So whatever rare disease you have, this information may apply to you as well.

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Links From 23 and Me:

23 and Me Rare Disease Research Study: Anti-Neutrophil Cytoplasmic Antibody Associated Vasculitis: https://www.23andme.com/rare-disease-research-study/anca-associated-vasculitis/

To learn more about Rare Disease Research Study funding, please visit: https://www.23andme.com/therapeutics/

GSK partnership for therapeutic research. https://investors.23andme.com/news-releases/news-release-details/23andme-announces-extension-gsk-collaboration-and-update-joint

Research Consent Document: https://www.23andme.com/about/consent/

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 your body to heal naturally.

In today's episode I go over why you need a functional practioner on your medical team, how they work, and what they'll focus on.

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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 truths we as a group come to.

Today I am going to share with you my top seven things I have learned in my decade with chronic illness.

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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 truths we as a group come to.

Today I am going to share with you my top seven things I have learned in my decade with chronic illness.

Join us on Instagram:
https://www.instagram.com/teamvasculitis

Join the Email List:
https://teamvasculitis.com/team-vasculitis-email

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's episode for the boost you need!

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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 when I decided what it would kind of look like to get started, I fully launched everything in February - Rare Disease Awareness Month. So if you've been enjoying my content and feeling connected to it I appreciate it! Now I have a more clear picture of what I want to build here. I have asked you questions and have formed what we're going to be doing together based on what you told me.

So - what are we going to be all about here? What can you expect as you participate in this community… Listen to this episode to find out!

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