Team Vasculitis: Thriving through Life with Chronic Illness

Do you find yourself getting anxious when you make plans? I do. I LOVE that I am even in a place to think about all of this. To put it on the calendar and HOPE that I will be able to do it. Then, right after that sense of excitement peaks - I feel that tense feeling in my chest and my heart starts to race and I start breathing shallow and I can't help but go down the "what if" rabbit hole. If you...

Can we stop with the focus and mindset and all of the bull about "at least it's not cancer." Just stop. I get a ton of messages of people dealing with this toxic perspective. Things like "I know it could be worse, it could be cancer." Or "I know others have it worse, dealing with things like cancer…" Today I break down the psychology and a few facts about why this is TOTALLY incorrect! Join us on...

What I want YOU to know is that it's normal for our loved ones to struggle with this. I want you to know that you will be able to get through it. I want you to know that you can work on accepting that they are struggling too, but it doesn't mean that they don't love you. It doesn't mean that they don't see you.  It can be easy to become so lost in our emotional crash that it is hard to find room t...

All health in the body are affected by the gut. Immunity, and therefore auto immunity, can greatly be pushed for the positive or the negative based on what is going on there. Today amazing functional dietician Jillian Smith shares insight as well as a few tips on how to help support your body and live a healthy and balanced life! Follow Jillian: https://www.instagram.com/jilliansmith.rd/ https://w...

You didn't choose to have your illness. No one really knows why it happens. Science doesn't know, so don't let anyone tell you they know. What you CAN choose, is how to live with it. Today I talk about these choices and give you a little personal experience. Feel less alone and join us at: http://www.instagram.com/teamvasculitis  

WE ARE RESILIENT. WE ARE CAPABLE. WE ARE SMART. WE ARE VALUABLE. Our bodies functioning differently than others doesn't change that. It doesn't matter if you were born with a chronic condition or if you had onset at any point in your life. You are valuable and ANY contributions you make are valuable. Your life is valuable. We don't always realize how we impact others. Follow me at: http://www.inst...

Today I chat with one of my FAVORITE dieticians. Bridgette is not only a dietician, but is also a functional medicine practitioner. She talks about the difference between a nutritionist and a dietician as well as the importance of testing before taking supplements and her own amazing company Gut Personal. - Stay Tuned for Part Two Where I talk to Bridgitte's business partner Jillian about nutritio...

The American College of Rheumatology put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.    Today I dig into the Relapse Therapy recommendations for Granulomatosis with Polyangiitis and Microscopic Polyangiitis. I give you it in a patient's point of view and less medical jargon. One patient to another.   Instagram: http://www.instagram.c...

Today I introduce you to Cat! She shares her journey from challenges as a child, to finally receiving a diagnosis as an adult. After getting a handle on things, she went through major emotional trauma which sent the disease into overdrive. She has a partially paralyzed stomach, suffers from seizures which limit her freedom, and so much more… and yet, she still chooses to continue Rising from the I...

The American College of Rheumatology, in conjunction with the Vasculitis Foundation and Dr. Sharon Chung from the University of California San Francisco Medical Center's Vasculitis clinic - as well as other doctors worked to put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.  Today I dig into the Remission Therapy recommendations for Gr...

Today I introduce you to Mandy! She was diagnosed at age 18 and found herself navigating onset of this disease and treatment during her freshman year of college. Now happily married, disease managed - as much as it can be, Mandy shares her sinus involvement and how even "managed" it's still a struggle. Follow Mandy here: http://www.instagram.com/amandalura_ Follow Me at: http://www.instagram.com/T...

The American College of Rheumatology, in conjunction with the Vasculitis Foundation and Dr. Sharon Chung from the University of California San Francisco Medical Center's Vasculitis clinic - as well as other doctors worked to put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.  Today I dig into the Induction Therapy recommendations for Gr...

Meet Ellie! Diagnosed with GPA at 17 after many misdiagnoses she was put on high levels of cytoxan as she navigated high school and college, only to need major surgery and face a 10+ year battle before achieving remission. Today she shares that journey. The medications, the stress, the testing, and where she is today. You can follow Ellie at: http:///www.instagram.com/ellietalk You can follow me a...

Every times you wait on tests or walk into a doctor's appointment the results of those things can be life altering. Do you need to add a medication? Will something else be wrong? medication? There are so many uncertainties and it is incredibly anxiety inducing. It's not in your head and you're not alone. Instagram: http://www.instagram.com/TeamVasculitis Facebook Community: http://www.facebook.com...

Meet Bri, a GPA warrior, mom, and all around amazing human. Today Bri shares her journey from the moment she knew something was really wrong, to diagnosis, and her journey since then. She opens up and shares her concerns and anxiety that so many Moms with chronic illness have. Follow Bri at: http://www.instagram.com/b_doyle Follow me at: http://www.instagram.com/TeamVasculitis  

I felt so alone when I was diagnosed, and for a long time after. No one understood. The people in my life who love me did their best, but I needed someone who was walking through the fire. I needed someone who understood. I needed someone I didn't have to answer so many of the basic questions for. I have found that… and I have found so many who still have been alone. Here, I want to offer a place...

I started this podcast thinking I'll let other Moms know that they aren't alone and share some stories of fellow Wegener's warriors, because rare diseases make it difficult to find people to connect with.  It took a few months, but I quickly found out that being a Mom life podcaster and sharing about my kids wasn't a good fit for me. I don't know where this will lead… and if you were here for the...

Today is a really hard day. The last few months have been really hard. Tomorrow is going to be really hard too. Right now all I can see are hard days ahead because I am not improving and if I go on prednisone my undiagnosed thing will become almost impossible to diagnose, so I have to do my best without it for now. Maybe I'll get to test out that new FDA approved medication for my rare disease. Wh...

Today I introduce you to Alexis. Healthy foodie and health coach who has a vision to give every family the tools to get their kids excited about healthy foods! Offering allergy friendly recipes and kid activities to get them excited to try new foods and eat more of their fruits and veggies, her e-kit will transform your child's relationship with food. Follow Alexis at: http://www.instagram.com/my....

I have something I want you to know… You aren't going to want to believe it. Something in your head and maybe even your heart will reject this. You will disregard it. You will dismiss it. You will say, maybe YOU are those things, but not me. Maybe YOU can claim that, but not me. Maybe it's true for you… but me, I'm just getting through my day and I do it badly. Tune in to hear this important messa...

My mission is for no one to feel alone. To help support our community through community. I never want anyone to feel as lost and alone as I did when I was first diagnosed, and for a long time after. I am sharing my experiences, both actively bad and completely ignored, with the Vasculitis Foundation because if I have experienced it and it made me feel more alone, you may have as well. Their outdat...

We're all supporting one another and we're all thriving more because of it. We are stronger in our community. We are happier and healthier both physically and mentally. We share tips and tricks and new information. We have solutions that - straight up - DOCTORS DO NOT HAVE. What they focus on is keeping you alive. Many times, the ways we make that happen is outside of the medication you take, and...

From medical breakthroughs, to new medications being developed and approved, to nutritional understanding and so much more, we have so many reasons to have hope! Hope. Have hope. Have hope of continued improvement in care. Have hope for advancement in medication options. Have hope new treatments and procedures. Just… Please, have hope and keep fighting. You are not alone. We're in this together. F...

There is a black and white perspective that many of us feel every day. It makes walking through the world and interacting with people who aren't in our alternate reality really scary, we never know when they're going to make it that much more difficult for us to get through that moment, that day, our lives. It's lonely all the time to watch others out living their lives while we want to be with th...

Meet the amazing warrior that is Gerry Ugalde! With a 5 month old at home she ended up in the hospital to only be told she has this strange rare disease - PLUS another huge surprise. Since then she has endured treatments, surgeries, career changes and so much more. It was truly an honor to sit down and talk to her and I know her story will impact you, as it has me. If you're interested in an even...