Team Vasculitis: Thriving through Life with Chronic Illness

As we navigate our process through our symptoms, getting a diagnosis can be exhausting and overwhelming. Currently it's "normal" to feel ignored, unheard, and dismissed. We've unfortunately all heard - "It's all in your head" and "It's normal.

If it stops you from living your life - IT IS NOT NORMAL If you have been treated this way - YOU ARE NOT ALONE

In today's episode I share a couple of stories and some scary statistics about this process.

We're hardwired to see the negative... but there is SO MUCH POWER in rewiring our brains to see the positive in the world around us. Today I talk about how it works, what it changes, and a few different ways to make practicing gratitude part of your life.

Here's the link to the article I used the most: https://www.heysigmund.com/the-science-of-gratitude/

Sometimes we spend so much energy focusing on where we want to go, who we want to be that we don't allow ourselves to value who we are right now.

Today, my good friend, Becky from Relatable Much Podcast joins me as we talk about this, how it changed her perspective and why it is so important to her.

In case you needed to hear this today - we ALL feel like we're failing in this parenting thing. We just do. Why? Because nothing in this world means more to us than doing our best for them. Don't worry Mama, you aren't alone. Join me in today's episode for some love and support.

In case you needed to hear this today - we ALL feel like we're failing in this parenting thing. We just do. Why? Because nothing in this world means more to us than doing our best for them. Don't worry Mama, you aren't alone. Join me in today's episode for some love and support.

As a Mama it's so easy to go down a rabbit hole of anxiety about a ton of different things. Recently, the more prevalent discussion around Human Trafficking has increased that anxiety. Today I talk about some facts that will empower you to reduce your anxiety and keep those tiny humans safe!

Resources: Instagram Accounts to Follow: @OURRescue @TimBallard89 @KateJOseen @Thorn @ChildrensRiot @ExodusCry @HumanTraffickingInst @UnitedAgainst @SafeHouseProject @ChildProofAmerica

Websites: DoSomething.org PolarisProject.org BrightSide.me

Do you take time at the end of the year to evaluate where you are and where you want to go? Today I talk about how I deal with making changes in my life and encourage you in your process. Plus, I plug some of my favorite products!

Mentioned: Simply Whole Planner from Simply Whole Moms available on Amazon Follow Kara and Nicole on Instagram @SimplyWholeMoms and listen to their podcast.

Goodbye 2020, Hello 2021 Journal from Project Love available on Amazon Follow Selina and Vicki on Instagram @LoveProjectLove and listen to their podcast

Stickers for your planner - Available on Etsy From @Blue.Hue.Art on Instagram and listen to Kayla's podcast - Glow Getters From @the_not_so_silent_mommy on Instagram and purchase from Breathe Aloha Hawaii on Etsy

It's no secret that tiny humans have big feelings. They come literally BURSTING out of them at any given moment. This happens more often when anything out of the normal happens... which probably means, if you're like me, you're dealing with more meltdowns during the holidays. There are so many more sights, sounds, strange foods etc. Not to mention how off schedule we all get doing all the fun things.

I want to help remind you that YOU ARE THEIR SAFE SPACE. Also, I share some tips to limit the meltdowns and how to handle them as they happen.

Don't worry Mama, you are NOT alone. I've got you.

Do you ever struggle with loving yourself? I know I do!!!

Today I chat with my dear friend Jeni about her journey to self love and body positivity. She even shares some of her favorite self care tips along with accounts she loves to follow to keep her head and heart on track.

Follow Jeni on Instagram at http://www.instagram.com/JeniSue29

Books Recommended: The Happiness Project by Gretchen Rubin Warrior Goddess Training: Becoming the Woman You are Meant to Be by Heather Ash Amara Seize Your Life: How to Carpe Diem Every Day by Jasmine Stringer Fierce, Free and Full of Fire by Jen Hatmaker

I was 20 years old when I went through my first holiday without my Dad. Now, 19 years later I still struggle with the lack of his presence. It doesn't go away.

Today I talk to you about what I have learned in how to get through this very difficult time of year. Whether you're the one suffering the loss, or if someone you love is, I share my insight and actionable tips on getting through it all.

Cookies, cakes, cheese, bread and so much more. It can feel impossible to enjoy the holidays and NOT indulge in favorite treats. When you're working on staying healthy and don't want to worry about putting on pounds an already stressful season becomes even more so. Today I share my top ways that I let myself have those treats AND I don't put on weight or make myself feel tired and sluggish.

The average American puts on 10lbs EVERY HOLIDAY SEASON and most fail to lose that weight. This episode is all about how to avoid that trap!

Do you stress, over schedule, over spend, meltdown and miss out on how much JOY there is during the Holidays? Friend, I used to be just like you!

Today I talk about my go-to, tried and true absolute cannot get through the Season without ways I manage my anxiety so that I can laugh, love and not feel like the Holiday season is just exhausting and miserable.

Tune and and find your joy again!

I know I am not alone when it comes to dealing with anxiety around certain people. There are only two ways to deal with these toxic people.

1. Cut them out of your life (not always an option). 2. Set and maintain firm boundaries.

In today's episode I encourage you to set boundaries. I talk about why it's important, and I support you in creating space for loving them while loving yourself too.

Today we talk Mom struggles. How to figure out what kind of self care is best for YOU. The power of understanding your motivations and needs, and what boundaries are the most important to set!

Becky is a Motherhood+Mindset Coach whose heart centered practice reaches mamas of all walks of life around the globe. Her focus is on helping women to create rhythms and routines for their homes and to incorporate lifestyles that help them thrive in motherhood, not just survive.

Facebook: www.facebook.com/fullonpurpose Instagram: www.instagram.com/fullonpurpose Mama Meets Enneagram Podcast: www.fullonpurpose.com/podcast Website: www.fullonpurpose.com

Access to Core Motivations Mini Masterclass: I just created a brand new Mini Masterclass on the Core Motivations of Each Enneagram Type. 🙂 If you've ever said, "Why does he DO that?! Or "WHAT in the world made you think that?" Then this class is for you. It's totally free. There's no sales pitch at the end or a hidden agenda. It's her gift to you. Get it here 👇👇👇👇👇👇 Mini Masterclass 👊 https://bit.ly/3oUnirS

When I was pregnant with my second baby, I was obsessed with what the change would be like having two kids in the house. I have seen this question asked multiple times in Mom groups I am in. So today, I give you the hard core, real talk, no holding back truth.

The old rules that implicitly state we should not talk about our menstrual cycles are stopping women from getting the care we need. Only a month ago I didn't even know that the treatment I would agree to existed! As I talk about my heavy periods and my fibroid so many women say ME TOO! ME TOO! So I am going to keep talking about it, and if you have any questions please let me know!

Recommended Resources: Books: WomanCode and In the Flo by Alisa Vitti Instagram page: @Alisa.Vitti and @FloLiving

In the face of the unknown, as we are a country divided, remember to reach first for love. Take five minutes to listen, and remind yourself that no matter what happens - we will get through it. You've got this!

It honestly never occurred to me that people don't make apologizing to their kids a normalized thing until a teacher of one of my girls told me they had never considered that as an option. It's important to me to not only TELL my kids how I want them to act in the world, but to SHOW them too.

You spend your entire sexually active live scared to death of getting pregnant. Then when you're ready, not everyone has it easy. I share my journey here. It's raw. It's emotional... and it's very real.

If you're going through this and need support, please reach out! I am here for you.

How often do you expect others to just simply KNOW that you want or need something from them? Do you ever stop and ask yourself what would happen if you spoke up and actually share your needs with your loved ones? Unmet expectations are one of the biggest relationship killers, if not the biggest one. Don't let your friendship die because you never told your friend that you need something from them to show your support.

Standing in the kitchen I had a crazy and sudden epiphany about connecting in 2020 and where I am compared to where I was at the beginning of 2020. My goal for the year was to really re-connect with friends and build new ones. Many times I have felt like I was failing at that... but have I been? Follow my new friend Monika Larson - as mentioned in the episode - on Instagram for social media tips @MonikaLarson13

Human Trafficking has become a hot topic recently. Parents are starting to pay more attention to what they share about their children online. My husband and I have been considered more "extreme" in the measures we take. In this episode I talk about what we do, and don't, share; why we do the things we do; and what happened that made me so aware of this necessity since I was 12.

When your body starts to fight you, it can be the hardest and scariest journey of them all. We've all heard people say, "At least you have your health." When you're body is trying to kill you, there is no where safe to hide. Vasculitis is a particularly difficult disease to diagnose. It presents in several different forms. In today's episode I talk about just the first couple of months of being sick, of receiving my diagnosis, and the first treatment we tried. Look fore more episodes soon about my personal journey, as well as other's stories about the onset of their diseases!

Please visit: The Vasculitis Patient Powered Network (vpprn.org) for more information on ALL forms of Vasculitis, as well as information about different studies being done. Most importantly, if you have any form of Vasculitis, PLEASE sign up and answer the simple online forms that give researchers so much more information. Our diseases are RARE and we need all the help we can get. We're in this together, help us fight and save lives TODAY!

Even when you're in the middle of your chaos, you are inspiring those around you. You just doing you shows other's that they can too!

You always have the choice to see the good in those around you and to choose to be kind. You have the power to change how you walk through the world.

Today's episode introduces you to your host (me) Felicia. I talk about the things that came together that gave me the drive to connect with you and share all the things!

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.

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!

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.

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.

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!

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.

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.

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.

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/

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/fertility-facts/fertility-preservation/egg-embryo-freezing

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.

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 system, you are less prepared to manage any new things which is a big problem with chronic illness because you are always dealing with new and challenging aspects to your life.

This episode goes into 5 Ways to Regulate Your Nervous System in the Moment as well as advice on digging deeper to work through your fight or flight response and truly be in balance.

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.

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 Episode: My dietician - I 10,000% recommend her! https://www.instagram.com/nutritionbyjulie/

The other podcast I have been loving: https://www.instagram.com/hormonehealingrd/

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.

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/d/0OjMGRo https://a.co/d/1i4ChFB

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 remind you how amazing you are!

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 connected, but also feeling drained by social media, you are NOT alone!

Today's episode gives you clear and actionable ways to manage social media burn out.

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.

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!!!!

Gall Bladder Info: https://www.gallbladderdiet.com/gallbladder-removal-side-effects/

https://www.instagram.com/gallbladder.nutritionist

CDC - https://www.cdc.gov/healthyschools/chronicconditions.htm

Raw Milk - https://www.nourishwithkristin.com/blog/raw-vs-pasteurized

Grass Fed Beef - https://wellnessmama.com/health/grass-fed-beef/

https://www.instagram.com/p/CuQG-JiuNJ_/?igshid=MzRlODBiNWFlZA==

Dr. Whitney Donahue https://www.drwhitneydonohue.com/

https://www.instagram.com/drwhitneydonohuend

Endocrine Disruptors: https://www.endocrine.org/topics/edc/what-edcs-are/common-edcs

Banned in other countries: https://foodrevolution.org/blog/banned-ingredients-in-other-countries/

https://marketrealist.com/food-industry/us-foods-banned-other-countries/

Alt Milk

https://www.yahoo.com/entertainment/non-dairy-milks-healthier-thats-175400639.html

https://www.sheknows.com/health-and-wellness/articles/1117683/alternative-milks/

Follow the money https://www.science.org/content/article/hidden-conflicts-pharma-payments-fda-advisers-after-drug-approvals-spark-ethical

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 do more with them.”

If you're an overhwlemed parent, or a someone contemplating pregnancy and parenthood and you're dealing with a chronic illness - TODAY'S EPISODE IS FOR YOU!

Follow Allie: https://www.instagram.com/disability_dame/ Follow Bethany Hamilton: https://www.instagram.com/bethanyhamilton/ Dr. Dan Siegel: https://drdansiegel.com/ The Whole Brained Child Book: https://a.co/d/2lya80t   Joe Newman: https://www.raisinglions.com/ Raising Lions Book: https://a.co/d/9w18yKI Emotional Intellegence and Success: https://www.forbes.com/sites/forbescoachescouncil/2017/11/07/the-little-known-relationship-between-emotional-intelligence-and-success/

Follow Morgan Burke: https://www.instagram.com/morganburkewrites/ The Adoption Process: https://rumble.com/v17o73x-the-adoption-process-morgan-burke.html

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 struggling and you really REALLY need to see this specialist, you have even more barriers to entry than many other people.

The challenge is that not making it to these appointments can have major consequences on your health and even your long term quality of life, but in our broken health care system you miss this appointment and you may not be able to get back in for 6 months or longer.

They have a DUTY to provide care for you. Either your established doctor or your referring doctor. When these delays happen - there are ways to get support until you can be seen.

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.

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.

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 mentioned - It's Ok to NOT Be Ok. Or is it? https://academy.pinkfortitude.com/blog/episode-39

Instagram: https://www.instagram.com/holly.bertone/

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-16

Episode 56 - The Power of Vulnerability https://fightlikeamama.libsyn.com/ep-56-the-power-of-vulnerability

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

https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758

https://www.arthritis.org/diseases/giant-cell-arteritis

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:

Cat's Episode: https://fightlikeamama.libsyn.com/ep-118-vasculitis-interview-with-behcets-disease-warrior-with-cat-ray

Cat's Podcast: https://risingfromtheillness.libsyn.com/

Cat on Instagram: https://www.instagram.com/risingfromtheillness/

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/teamvasculitis

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

Sources:

https://www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326

https://www.hopkinsvasculitis.org/types-vasculitis/behcets-disease/

https://rarediseases.info.nih.gov/diseases/848/behet-disease

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:

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/teamvasculitis

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

Sources:

https://dermnetnz.org/topics/cutaneous-small-vessel-vasculitis

https://www.merckmanuals.com/professional/musculoskeletal-and-connective-tissue-disorders/vasculitis/cutaneous-vasculitis

https://www.ncbi.nlm.nih.gov/books/NBK482159/

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:

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/teamvasculitis

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

Sources:

https://www.mayoclinic.org/diseases-conditions/churg-strauss-syndrome/symptoms-causes/syc-20353760

https://rarediseases.info.nih.gov/diseases/6111/eosinophilic-granulomatosis-with-polyangiitis

https://my.clevelandclinic.org/health/diseases/7098--eosinophilic-granulomatosis-with-polyangiitis-egpa-formerly-churg-strauss-syndrome

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:

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/teamvasculitis

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

Sources:

https://www.hopkinsvasculitis.org/types-vasculitis/cryoglobulinemia/

https://www.uptodate.com/contents/overview-of-cryoglobulins-and-cryoglobulinemia

https://ashpublications.org/blood/article/129/3/289/36030/How-I-treat-cryoglobulinemia

https://www.mayoclinic.org/diseases-conditions/cryoglobulinemia/symptoms-causes/syc-20371244

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 community, and feel a little less alone in their journey through life with chronic illness!

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

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

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 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/teamvasculitis

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

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! 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/teamvasculitis

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

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:

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Sources:

https://rarediseases.info.nih.gov/diseases/1421/cogans-syndrome

https://www.health.harvard.edu/a_to_z/cogans-syndrome-a-to-z

https://mayoclinic.pure.elsevier.com/en/publications/cogans-syndrome-an-audiovestibular-ocular-and-systemic-autoimmune

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:

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/teamvasculitis

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Sources:

https://my.clevelandclinic.org/health/diseases/24264-aortitis

https://www.cedars-sinai.org/health-library/diseases-and-conditions/i/inflammatory-aortic-disease-aortitis.html

https://www.merckmanuals.com/professional/cardiovascular-disorders/diseases-of-the-aorta-and-its-branches/aortitis

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 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/teamvasculitis

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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:

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/teamvasculitis

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Sources:

https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/anti-gbm-disease/

https://my.clevelandclinic.org/health/diseases/5927-goodpasture-syndrome

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:

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/teamvasculitis

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Sources:

https://my.clevelandclinic.org/health/diseases/13205-central-nervous-system-vasculitis

https://www.ninds.nih.gov/health-information/disorders/vasculitis-nervous-system

https://www.uofmhealth.org/conditions-treatments/brain-neurological-conditions/central-nervous-system-cns-vasculitis

https://pn.bmj.com/content/20/2/109

https://www.rheumatologyadvisor.com/ddi/central-nervous-system-cns-vasculitis/

https://www.ahajournals.org/doi/10.1161/STROKEAHA.118.021878

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:

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

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Sources:

https://my.clevelandclinic.org/health/diseases/12101-vasculitis

https://www.hopkinsvasculitis.org/vasculitis/symptoms-vasculitis/

https://www.mayoclinic.org/diseases-conditions/vasculitis/symptoms-causes/syc-20363435

https://www.medicinenet.com/vasculitis/article.htm

https://health.clevelandclinic.org/4-medicines-help-you-manage-the-mysteries-of-vasculitis/

https://www.nhlbi.nih.gov/health/vasculitis/causes

https://www.hopkinsvasculitis.org/types-vasculitis/

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 cold therapy or cold plunging.)

In today's episode I dive into all the details and scientific information!

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Sources used for this episode:

https://www.healthline.com/health/cold-water-therapy#benefits

https://uspainfoundation.org/news/the-benefits-of-heat-and-cold-therapy-for-chronic-pain/

https://www.healthline.com/health/cryotherapy-benefits

https://www.healthfitnessrevolution.com/10-health-benefits-of-cold-plunges/

https://peacefulsoul.co/the-body/guides/how-cold-water-therapy-can-help-physical-wellbeing/

https://www.forbes.com/health/body/cold-plunge-what-to-know/

Taking the Plunge: Is Cold Exposure Worthwhile?. Cedars-Sinai. Accessed 4/19/2023. (https://www.cedars-sinai.org/blog/cold-exposure-therapy.html) 

Buijze, G. A., Sierevelt, I. N., van der Heijden, B. C., Dijkgraaf, M. G., & Frings-Dresen, M. H. (2016). The Effect of Cold Showering on Health and Work: A Randomized Controlled Trial. PloS one, 11(9), e0161749. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025014/) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025014/) 

Cold Water Hazards and Safety. National Weather Service. Accessed 4/19/2023.(https://www.weather.gov/safety/coldwater)

Cold Therapy (Cryotherapy) for Pain Management. UCLA Health. Accessed 4/21/2023.(https://healthinfo.uclahealth.org/Conditions/Orthopedics/134,95)

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.

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!

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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 tells you more about me - and why I'm doing what I'm doing.

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!

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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/

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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 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!

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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 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!

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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 I asked two of my most trusted functional practioners these questions: 1. What should someone look for when choosing a functional practitioner? 2. What questions should they ask and answers should they be looking for when they work with someone?  

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!

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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 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!

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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 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 illness!

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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.

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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

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Connect with Kay:

Instagram: https://instagram.com/autoimmune_fitwarriorsoul

https://www.bonfire.com/we-are-warriors-2/

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…

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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 Illness on a forthcoming episode! Also, keep an eye out for her blog posts on the Team Vasculitis website in regards to dating and committed relationships!

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

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Connect with Ariane: https://www.instagram.com/arianeolshansky/

TikTok: https://www.tiktok.com/@hugsxhoneycoach

Facebook Group: https://www.facebook.com/groups/587314061858313

Email: hugsxhoney@gmail.com

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

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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: Website: http://www.myfavoritechiro.com

Instagram: https://www.instagram.com/myfavoritechiro

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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 be there.

If you feel this way, or have ever felt this way… this is especially for you.

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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 to you.

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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.

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

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Follow Dainelle here: https://www.instagram.com/daniellerosz/

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.

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

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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.

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

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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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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!

Connect with others: http://www.instagram.com/teamvasculitis

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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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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 most often is actually what I can do right now is enough. Right now in this moment I am doing enough.

If you have ever felt like you need to do more and be more... espcially because of your illness, this episode is for you!

Don't go through life with chronic illness alone! Join us on Instagram! https://www.instagram.com/teamvasculitis/

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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.

When it comes to chronic illness, things aren’t that different. We have symptoms that when presenting together give us a diagnosis. We find support in our community and shared experiences. 

So what about when things are different? What about when things present outside of what is “textbook?” Listen to this episode to find out more!

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Get more information, updates, links etc https://teamvasculitis.com/

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 is INSANE to me. Even before I was personally sick, I could see how there are things we go through that others don’t understand. But when I don’t understand it, I don’t assume the other person is wrong.

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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/teamvasculitis Check Out Our Webpage + Join Our Email List: http://teamvasculitis.com