Explorez tous les épisodes du podcast Team Vasculitis: Thriving through Life with Chronic Illness

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 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

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 chronic illness!   Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

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 life with chronic illness!   Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

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 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

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 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

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 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

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 illness!   Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

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 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

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 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

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

 

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

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 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

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 illness!   Join us on Instagram: https://www.instagram.com/teamvasculitis Join the Email List: https://teamvasculitis.com/team-vasculitis-email

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.

 

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

 

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 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

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 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

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 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

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/

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

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 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

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

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

 

   

 

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!

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

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.

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

 

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

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

 

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

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

 

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.

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

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

 

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 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

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/

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

 

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

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 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.hopkinsvasculitis.org/types-vasculitis/giant-cell-arteritis/

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:

• What is Behcet's?
• What are the classic symptoms of Behcet's?
• How is Behcet's Diagnosed?
• What Causes Behcet's?
• Who gets Behcet's?
• How is Behcet's Treated?
• Side Effects from Medications
• Life with Vasculitis
• Patient to Patient

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:

• What is Cutaneous Small-Vessel Vasculitis?
• History of Cutaneous Small-Vessel Vasculitis?
• What are the symptoms and signs of Cutaneous Small-Vessel Vasculitis?
• How is CSVV Diagnosed?
• How is CSVV treated?
• Who gets CSVV?
• 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://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:

• What is EGPA?
• What are the symptoms of EGPA?
• Complications from EGPA
• How is EGPA Diagnosed?
• How is EGPA treated?
• Side effects from the medications
• Can EGPA come back?
• 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/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:

• What is Cryoglobulinemia?
• What are the symptoms of Cryoglobulinemia
• What Causes Cryoglobulinemia?
• How is Cryoglobulinemia treated?
• 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.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

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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:

• What is Cogan's Syndrome?
• Who gets Cogan's Syndrome?
• What are the symptoms of Cogan's Syndrome?
• How is Cogan's SyndromeDiagnosed?
• How is Cogan's Syndrome treated?
• Side Effects from Medication
• 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://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:

• What is Aortitis?
• What causes Aortitis?
• Who gets Aortitis?
• What are the symptoms?
• How is Aortitis Diagnosed?
• How is Aortitis treated?
• Side Effects from Medications
• Your Medical Team
• 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://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

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

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:

• What is Goodpasture's?
• What causes Goodpasture's?
• What are the symptoms?
• How is Goodpasture's Diagnosed?
• How is Goodpasture's treated?
• What are Your chances of getting better
• 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://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:

• What is CNS?
• What are the symptoms of CNS?
• What causes CNS?
• How is CNS Diagnosed?
• How is CNS treated?
• Side effects from the medications
• 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://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:

• What is Vasculitis?
• Who gets Vasculitis?
• What are the symptoms of Vasculitis?
• What are the types of Vasculitis?
• How is Vasculitis treated?
• Side effects from medications
• Relapse rates
• How is Vasculitis diagnosed?
• What doctors do you need?
• What complications happen with Vasculitis?
• Life with Vasculitis

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://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!

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 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!

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

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

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!

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

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https://teamvasculitis.com/team-vasculitis-email

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/

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

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!

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

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

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