Team Vasculitis: Thriving through Life with Chronic Illness

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

Join the Email List: 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!

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

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

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!

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

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

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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