Team Vasculitis: Thriving through Life with Chronic Illness - podcast cover

Team Vasculitis: Thriving through Life with Chronic Illness

Felicia Distadteamvasculitis.libsyn.com
Life with any chronic illness is a lonely struggle. I don’t have to tell you that. That’s why I’m here. I want you to know that you are NOT alone. I want you to feel seen, heard, and supported. Here, we’re in it together. Here, you have someone who understands. Here, I remind you that you are part of a Team… and by supporting one another and collaborating together, we can do more than survive. We can thrive.
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Episodes

Ep 226 - Save Your Emotional Energy for the People Who Matter

Are you EXHAUSTED because you're constantly trying to explain yourself... all the time... to everyone? When you have to say no, when you have to reschedule, when you have to limit yourself, when you're not feeling well... and on and on to forever. Today I talk about how to handle this and how to make sure this emotional exhaustion doesn't hurt your closest relationships. Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leave a revie...

Jan 02, 202419 minSeason 1Ep. 226

Ep 225 - Gift Ideas for People with Chronic Illnesses

It's the most wonderful time of the year... which means all kinds of gift giving is going on. Today I talk about 12 different gifts most people with a chronic illness would absolutely love! I also talk about what NOT to gift and why! 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 community, and feel a little less alone in their journey through life with chroni...

Dec 12, 202317 minSeason 1Ep. 225

Ep 224 - Let's Talk about Azathioprine (Imuran)

Azathioprine is a common medication for people with chronic illnesses. Over 800,000 people are prescibed it in the US alone. Today I dig into details, what you need to know, and share my own experience as well as several other people's experiences. 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 community, and feel a little less alone in their journey through l...

Dec 05, 202321 minSeason 1Ep. 224

Ep 223 - How to Survive the Holiday Season with a Chronic Illness

It's the most stressful time of the year! So today I talk about five ways to make sure you not only survive the holiday season, but you can still thrive through it. You deserve to experience a holiday season that lights you up, brings you joy and gives you memories of love and laughter not stress, anxiety, pain and exhaustion. 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 podc...

Nov 28, 202311 minSeason 1Ep. 223

Ep 222 - How to Show Support for Someone with a Chronic Illness

Ever wish your loved ones knew how to show up for you and support you? Well, this is the one for you to send to your loved ones! Today I offer 5 ways that our healthy loved ones can work to show up for us with actionable tips - as well as a few ways that they probably think they're being supportive when it really comes across as telling you you're not doing enough or downplaying what you're going through! So click that share button and send this to anyone who needs to hear it! Please don't forge...

Nov 07, 202310 minSeason 1Ep. 222

Ep 221 - [Part 7] Raising Kids as a Mom with Granulomatosis with Polyangiitis (formerly Wegener's Vasculitis)

Raising kids when you have a potentially fatal auto immune disease is a head trip. It’s an extra kind of difficult emotionally that you can’t imagine until you’re not living it. Today I talk about that journey mentally and emotionally... as well as ways my husband and I intentionally are creating healthy habits that support our daughter's bodies to try and lower the chance that they might develop an autoimmune condition. Please don't forget to click that subscibe button whereever you listen to t...

Oct 31, 202316 minSeason 1Ep. 221

Ep 220 - [Part 6] Postpartum with Granulomatosis with Polyangiitis (formerly Wegener's Vasculitis)

What happens to a woman's body after she delivers a baby is... a LOT of things. If you have an auto immune condition - or a rare disease - it becomes much more complicated. Today I share my journey postpartum with both of my babies. 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 community, and feel a little less alone in their journey through life with chronic...

Oct 24, 202320 minSeason 1Ep. 220

Ep 219 - [Part 5] My Pregnancies with Granulomatosis with Polyangiitis (formerly Wegener's Vasculitis)

It's not all doom and gloom. It's not all horror stories. Today I share my journey with both of my pregnancies and some of the challenges I faced as well as the victories throughout the process. I also tell you what I whole heartedly believe was the key thing I did to increase my fertility and get pregnant - even with low egg count and other challenges. 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 thing...

Oct 17, 202321 minSeason 1Ep. 219

Ep 218 - [Part 4] The Challenges of Getting Pregnant with Granulomatosis with Polyangiitis (formerly Wegener's Vasculitis)

If you're hoping to or planning getting sick and you or your spouse have Granulomatosis with Polyangiitis... this episode is for you. I dive into challenges you need to be aware of as well as my own personal struggles. I share medication insight, what you'll need to advocate on... and what you need to ignore that the scary clinical medical field will present you with! Here's the study I mention about Pregnancy and Vasculitis: https://pubmed.ncbi.nlm.nih.gov/36192559/ Please don't forget to click...

Oct 10, 202324 minSeason 1Ep. 218

Ep 217 - [Part 3] Azathioprine Treatment with Granulomatosis with Polyangiitis (formerly Wegener's Vasculitis)

When the "best" treatment that works for the "vast majority" of people with your disease... doesn't work for you. What's next? In today's episode I talk about the treatment that did work, some really tough discussions my husband and I had to have, and the devestation when you start to have a flare even though you're doing EVERYTHING right. Links mentioned in the episode: https://pubmed.ncbi.nlm.nih.gov/19129430/ https://www.drugs.com/sfx/azathioprine-side-effects.html https://us.fertility.com/fe...

Oct 03, 202321 minSeason 1Ep. 217

Ep 216 - [Part 2] Rituximab Treatment Journey with Granulomatosis with Polyangiitis (Wegener's Vasculitis)

If you've been diagnosed with any form of ANCA Vasculitis someone has probably talked to you about Rituximab/Rituxin. Today I talk about my process in the first year of being sick and getting three rounds of Rituximab as well as the consequences of being on high doses of prednisone. 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 community, and feel a little le...

Sep 26, 202317 minSeason 1Ep. 216

Ep 215 - [Part 1] Onset and Diagnosis of ANCA Vasculitis - Granulomatosis with Polyangiitis (formerly Wegener's)

When you start having symptoms - but no one puts the pieces together things can go from bad to deadly FAST. That's what happened to me. This is part one of onset and diagnosis of my journey with a potentially fatal rare disease. 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 community, and feel a little less alone in their journey through life with chronic ill...

Sep 19, 202314 minSeason 1Ep. 215

Ep 214 - How to Regulate Your Nervous System with a Chronic Illness

Dealing with a chronic illness is incredibly difficult on your body. The stress, the unknowns, the changes, the fear, the pain… it all takes a toll on your nervous system. Which then takes an EXTRA toll on your overall well-being and often results in a dysregulated nervous system. The reason this is a problem is that this extra stress can worsen your symptoms, it can lessen the effectiveness of your medication, it can cause new health challenges and more. If you have a dysregulated nervous syste...

Sep 12, 20233 minSeason 1Ep. 214

Ep 213 - The Habits I've Built to Support, Heal and Strengthen my Chronically Ill Body

Have you ever made a list of the healthy habits you have built to support your body and to thrive? I recently did this and found myself so proud of how far I have come. Today I talk to you about my process and go into 20+ habits I have built to change my life. 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 community, and feel a little less alone in their journ...

Sep 05, 202329 minSeason 1Ep. 213

Ep 212 - The Mental Toll of Isolation with Chronic Illness

It doesn’t get talked about enough, the isolation. The way everyone drifts away. The way you don’t have the energy to show up and participate. So even though you’re lonely and wish you could be with people, you also need to be left alone. Today we talk about this isolation, the toll it takes on your mental health and four ways to manage it! Be sure and check out Holly! Instagram: https://www.instagram.com/holly.bertone/ Podcast: https://academy.pinkfortitude.com/blog Please don't forget to click...

Aug 29, 202315 minSeason 1Ep. 212

Ep 211 - Should I Have Kids After Onset of my Chronic Illness - Pregnancy, Medications, Morals?

If you don't already have children before the onset of your disease, it can be an overwhelming prospect. Will you still be able to properly care for a child? Is it fair to bring them into a home where you may be incredibly limited? What about pregnancy? Should you get pregnant? Will your disease or your medications negatively affect your child? I go into all of this and more in this episode. Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE fa...

Aug 23, 202330 minSeason 1Ep. 211

Ep 210 - Clinical Lab Results vs OPTIMAL Lab Results - What you Need to Understand

Have you ever had a doctor glance at your blood work and tell you everything is "normal"? Even though you KNOW something is off? Clinical medicine focuses on critical care whereas functional medicine focuses on total healing and balance BEFORE you get critical... and one of the biggest differences is how they are able to interpret your blood work. In today's episode I share a couple of personal anecdotes and break down this revolution into understanding your test results. Links Mentioned in Epis...

Aug 15, 202320 minSeason 1Ep. 210

Ep 209 - Your Guide to Surviving Your First Year of Chronic Illness

Being diagnosed with a chronic illness is, to say the least, a life-changing experience. Coping with the challenges that come with chronic illness is no light thing to overcome. Oftentimes it feels so overwhelming that you cannot even begin to process what your new reality will be. The good news is that there are several things that you can do to survive your first year with chronic illness and in this episode we go through the top five. Please don't forget to click that subscibe button whereeve...

Aug 08, 202314 minSeason 1Ep. 209

Ep 208 - Negative Outcomes from Stress Don't Have to Control Your Life

Stress leads to inflammation. Inflammation leads to illness. It’s probably a formula you're familiar with. You who live with the awareness that inflammation is your enemy - I mean, really for health is EVERYONE’S enemy, but for the already chronically ill - it is a much more intense adversary. Today I talk about 7 ways to help support your body and reduce stress that are ACTIONABLE tips not just the vague, "you need to reduce your stress" that doctors often tell you. Diffuser Recs: https://a.co/...

Aug 01, 202315 minSeason 1Ep. 208

Ep 207 - Chronic Illness Warriors: You Are Strong, Brave, Kind and True

If you’ve been chronically ill for a while, you have been through the ups and downs. You know the crazy mind games it ends up being. You also know that many MANY people, supported by mainstream media narratives, jokes, and comments, see people with chronic illnesses and less than. They perceive us as less than. They believe we are a burden on society… and insanely enough, they believe that we CHOOSE to be and stay sick. Which is crazy, right? In today's episode I set some things straight - and r...

Jul 25, 202312 minSeason 1Ep. 207

Ep 206 - Chronic Illness Reminder: Social Media isn't Reality

As you sit in your home, exhausted, struggling with brain fog, in pain and so much more, social media is often a window into the rest of the world. It is a lifeline to the friends who understand, who are often also at home struggling with the war inside their bodies. There is so much GOOD that has come, and can continue to come from social media. The trouble becomes that we can struggle to discern reality from the highlight reel that social media is. If you struggle with wanting to feel connecte...

Jul 18, 202312 minSeason 1Ep. 206

Ep 205 - You Deserve a Medical Team that Believes You

When you leave your medical appointments you should feel seen, heard, supported... and maybe even a little bit hopeful. If you DO NOT feel this way, it's time to start buliding a different medical team. 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 community, and feel a little less alone in their journey through life with chronic illness! Join us on Instagram...

Jul 11, 202319 minSeason 1Ep. 205

Ep 204 - You have the Freedom to Choose Your Chronic Illness Care

Let’s be clear - you have MANY freedoms in your chronic illness journey. Today we look at several and encourage you to take control of your life! YOU HAVE THE POWER TO CHOOSE!!!! 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 community, and feel a little less alone in their journey through life with chronic illness! Join us on Instagram: https://www.instagram....

Jul 04, 202317 minSeason 1Ep. 204

Ep 203 - Your Chronic Illness Doesn't Make you a Bad Parent

Your disease can affect everything in your life. Not just what you can do physically, but your time and your emotional limitations as well. So it is absolutely going to impact your parenting. Parenting is the most all encompassing thing you can do in your life, also affecting everything. When was the last time you thought to yourself - maybe I’m a bad parent because of the limitations of my disease? Or maybe it was more, “My kids deserve a better parent, a more involved parent, a parent who can ...

Jun 27, 202317 minSeason 1Ep. 203

Ep 202 - Get the Support you Need in Between Doctors Appointments

6+ months wait is unacceptable. The issue is that by the very nature of having a chronic illness, your body and your life is unpredictable. Even if your appointment is a follow up or continuing care with a medical provider, it can be difficult to make sure you make it to these appointments. Throw in the pandemic and the post pandemic challenges and it’s even more difficult to make it. Have a cough, don’t come to the office. Have a fever, don’t come to the office… you get it. So as you’re struggl...

Jun 20, 202313 minSeason 1Ep. 202

Ep 201 - The Importance of Boundaries

Boundaries are VITAL for your mental, emotional and physical health - chronic illness or not. Today I dive into why you need boundaries and easy ways to implement them. 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 community, and feel a little less alone in their journey through life with chronic illness! Join us on Instagram: https://www.instagram.com/teamva...

Jun 13, 202310 minSeason 1Ep. 201

Ep 200 - Interview with Chantel Laughlin a Money and Mindset Coach

Meet Chantel! After realizing that she was holding herself back from things she wanted, she decided to take action and learn how to take control of her money and her life. In today's interview she gets vulnerable AND shares some amazing insights as to how to get started and ways to maximize your financial potential. Links: www.chantelcoaches.com www.instagram.com/chantel.laughlin Please don't forget to click that subscibe button whereever you listen to the podcast and do me a HUGE favor and leav...

Jun 08, 202350 minSeason 1Ep. 200

Ep 199 - Interview with Holly Bertone Mindset and Gratitude Coach

You aren't going to want to miss this episode! Holly is a cancer survivor AND auto immune warrior who spent most of her life as a top tier over achiever and has had to learn to thrive through life no matter how much it throws at you... and through that process she discovered the power to take control of her life and her happiness! Here's where you can find Holly: Website: https://academy.pinkfortitude.com/podcast-landing-welcome Podcast: https://academy.pinkfortitude.com/blog Podcast Episode men...

Jun 01, 20231 hr 3 minSeason 1Ep. 199

Ep 198 - You are Worth Loving, Chronic Illness and All

I know the pain of realizing people you believed were part of your inner circle separating themselves from you. They don’t want to see what you share online. The reality of what you’re going through makes them feel a certain way. Some people won’t want to see or hear it. Some people will walk away. Some people will unfriend and unfollow… and it sucks and it hurts… and, it’s also okay. Episode 179 - They Won't Understand and You Need to be Okay with That https://fightlikeamama.libsyn.com/untitled...

May 30, 202313 minSeason 1Ep. 198

Ep 197 - Vasculitis Insights: Giant Cell Arteritis (Temporal Arteritis)

A breakdown of what Giant Cell Arteritis (GCA) and what you need to know as a patient as well as insight from patients on life with GCA. Here's what you'll find in this episode: What is Giant Cell Arteritis (GCA)? Who gets Giant Cell Arteritis? What Causes Giant Cell Arteritis? What are the Symptoms of Giant Cell Arteritis? How is Giant Cell Arteritis Diagnosed? How is Giant Cell Arteritis Treated? What are the Complications of Giant Cell Arteritis? Life with Vasculitis Patient to Patient Please...

May 23, 202314 minSeason 1Ep. 197
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