Team Vasculitis: Recent Episodes
Felicia Distad
Life with any chronic illness is a lonely struggle. I don’t have to tell you that. That’s why I’m here. I want you to know that you are NOT alone. I want you to feel seen, heard, and supported. Here, we’re in it together. Here, you have someone who understands. Here, I remind you that you are part of a Team… and by supporting one another and collaborating together, we can do more than survive. We can thrive.
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
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
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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!
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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
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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!
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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
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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:
- 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
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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.
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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
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Connect with Julie: Instagram TikTok Facebook Group Connect with Dr. Michelle Instagram
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
Join the Email List: https://teamvasculitis.com/team-vasculitis-email
Connect with Ariane: https://www.instagram.com/arianeolshansky/
TikTok: https://www.tiktok.com/@hugsxhoneycoach
Facebook Group: https://www.facebook.com/groups/587314061858313
YouTube: https://youtube.com/@arianehugsandhoney4234 LinkedIn: https://www.linkedin.com/in/ariane-olshansky-02144a46 Co-Authored book, The Transformation Within: https://www.amazon.com/dp/B0BM22KRNF?ref_=cm_sw_r_mwn_dp_KYF3H0DE7BBTH7905MHH Check this out! Link to my Singles Retreat in Costa Rica in June: https://imiloainstitute.com/project/fall-in-love-in-costa-rica/ 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
Join us on Instagram: https://www.instagram.com/teamvasculitis
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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.
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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
Join the Email List: https://teamvasculitis.com/team-vasculitis-email
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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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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Join the Email List: https://teamvasculitis.com/team-vasculitis-email
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
Join the Email List: https://teamvasculitis.com/team-vasculitis-email
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!
Join us on Instagram! https://www.instagram.com/teamvasculitis/
Join the email list and never miss and update or an announcement!
https://teamvasculitis.com/team-vasculitis-email
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/
Join the email list and never miss and update or an announcement!
https://teamvasculitis.com/team-vasculitis-email
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!
Join the community and find support:
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Get on the Email List and never miss anything important!
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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.
Join the Community:
http://www.instagram.com/teamvasculitis
Get on the Email list:
https://teamvasculitis.com/team-vasculitis-email
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
So much has been going on for my family and I. We have had some major life changes and it has been a PROCESS. In this episode I share with you what's been happening and a few things I did to manage it without pushing myself too far.
Instagram:
http://www.instagram.com/teamvasculitis
Website:
http://teamvasculitis.com
So much has been going on for my family and I. We have had some major life changes and it has been a PROCESS. In this episode I share with you what's been happening and a few things I did to manage it without pushing myself too far.
Instagram:
http://www.instagram.com/teamvasculitis
Website:
http://teamvasculitis.com
Welcome to EMPOWERED
A series that brings to you resources to empower yourself to live a full life.
Meet Kara! She helps you master manifestation to attract more: Health, Wealth and Love. In this conversation Kara shares about her personal journey with anxiety and how understanding her body gave her the tools to get where she could take on her life and build it with joy and intentionality!
Connect with Kara:
httpshttps://www.instagram.com/iamkarakauffman
Raise Your Vibe Guide:
https://karakauffman.mykajabi.com/raise-your-vibe-guide
Connect with the Team Vasculitis Community:
https://www.instagram.com/teamvasculitis/
Never miss anything going on with Team Vasculitis:
https://teamvasculitis.com/team-vasculitis-email
Even if you’re doing the best you can. Even if you’re doing all the things to the best of your ability, if your disease is one of the ones that can flare… then at some point it probably will. It’s this cloud following you around ready to shut out the sunshine, and take away the joy.
Join us on Instagram:
http://www.instagram.com/teamvasculitis
PLEASE CONSIDER LEAVING A REVIEW!
Welcome to EMPOWERED
A series that brings to you resources to empower yourself to live a full life.
Meet Brooklyn! She helps you release stress and live with ease through yoga, meditation + breathwork. Our conversation filled me up and delievered so much information I had never heard. You are not going to want to miss this.
Connect with Brooklyn:
https://www.instagram.com/brooklynb.yoga/
Clarity Call Link:
https://calendly.com/brooklynb_yoga/free-clarity-call?month=2022-08
Get a FREE meditation!
https://brooklynb.mykajabi.com/freemium-opt-in
Connect with the Team Vasculitis Community:
https://www.instagram.com/teamvasculitis/
Never miss anything going on with Team Vasculitis:
https://teamvasculitis.com/team-vasculitis-email
Welcome to EMPOWERED
A series that brings to you resources to empower yourself to live a full life.
Meet Brooklyn! She helps you release stress and live with ease through yoga, meditation + breathwork. Our conversation filled me up and delievered so much information I had never heard. You are not going to want to miss this.
Connect with Brooklyn:
https://www.instagram.com/brooklynb.yoga/
Clarity Call Link:
https://calendly.com/brooklynb_yoga/free-clarity-call?month=2022-08
Get a FREE meditation!
https://brooklynb.mykajabi.com/freemium-opt-in
Connect with the Team Vasculitis Community:
https://www.instagram.com/teamvasculitis/
Never miss anything going on with Team Vasculitis:
https://teamvasculitis.com/team-vasculitis-email
When the clip came out where Ashton said he had vasculitis, it sent the community talking. One of the things is excitement that he is advocating, but is he? Another thing was frusteration that he used the past tense of "had." I talk about all of this as well as share some basic vasculitis info in this episode.
Ashton's Charity Thorn:
https://www.thorn.org/
Team Vasculitis Instagram:
http://www.instagram.com/teamvasculitis
Vasculitis Community:
https://www.facebook.com/groups/883389712331347
Welcome to EMPOWERED
A series that brings to you resources to empower yourself to live a full life.
Meet Sarah Hines! She helps you feel better about yourself, prioritize yourself, learn to set boundaries, enjoy life more, and know your worth is not determined by your size! She is my go to when I need a smile as I am scrolling social media and I know you will love her message as much as I do!
Connect with Sarah:
https://www.instagram.com/thesarahhines/
Self Love Bingo - A Game to encourage you to add more self love in your life!
https://www.selfloveshines.com/self-love-bingo-opt-in
Connect with the Team Vasculitis Community:
https://www.instagram.com/teamvasculitis/
Never miss anything going on with Team Vasculitis:
https://teamvasculitis.com/team-vasculitis-email
Something all chroncially ill people struggle with is figuring out if their symptoms are their disease, or if they are something else. In this episode I break down how to figure it out, and why it's very important to learn and understand your body!
Join the community:
Instagram: https://www.instagram.com/teamvasculitis/
Facebook: https://www.facebook.com/groups/teamvasculitis
Join the Email List:
https://teamvasculitis.com/team-vasculitis-email
Our lives change so dramatically when we become chronically ill. We just don’t have the capacity we used to. Where you might have always been everyone’s go to “yes” person happy to jump in and help or save the day for anyone and everyone you knew, now you have to become someone else and if you are dealing with guilt about it, this episode is for you!
Join us at Team Vasculitis on Instagram
http://www.instagram.com/teamvasculitis
Join the Facebook Community
https://www.facebook.com/groups/teamvasculitis
So what exactly does depression do to you? Well, it can affect how you feel, think, and handle daily activities, such as working, sleeping, and handling self-care… I know you’re making the same correlation that I am - wow, that sounds just like my chronic illness!
Depression is one of the leading reasons chronically ill patients don't get the care they need. Listen to this episode to find out more!
http://www.instagram.com/teamvasculitis
http://teamvasculitis.com
My 4 step Fullproof way to NEVER miss a question at your doctor's appointments again! https://bit.ly/3RPEcq3
How often do you stop yourself from accepting or even going after things you want because of what "might" happen? How often do you let yourself believe that you deserve less because of your illness? I get it, I do it too... and yet, you don't actually deserve less. So let's talk about it!
Instagram: http://www.instagram.com/teamvasculitis
Join the Team Vasculitis Email List: https://teamvasculitis.com/team-vasculitis-email
Never Forget a Question at Your Doctor's Appointment Again: https://bit.ly/3xljYuT
I really want to acknowledge that when you’re young and you deal with these diseases it is devastating in a way that, although we can come together in understanding with most who have chronic illnesses, is different for people who have lived a full life cannot understand.
Instagram:
http://www.instagram.com/teamvasculitis
Hack Your Health:
https://bit.ly/3c3lz1l
Here’s a hard truth you need to be warned about and no one really does. You aren’t going to be able to fully process what “chronic illness” means when you get your diagnosis. You just aren't. Your brain can’t process forever. The forever you face is different than anything else you have faced in your life. Most of the things in your life you either actively choose to stay in the forever, or you can walk away.
Listen to this to find out what no one else is telling you!
Join our Community:
https://www.instagram.com/teamvasculitis
Meet Hannah! IgA Vasculitis Warrior. IgA Vasculitis was formerly known as Henoch-Schönlein purpura.
Like so many of us she had to fight for people to believe that something was wrong with her. She was young, health conscious, and fit - so how could she be sick, right?
She shares her symptoms, journey, and more.
Follow Hannah:
Tiktok: www.tiktok.com/@hannahthaiss Instagram: www.Instagram.com/Januarymornings Clothing brand: whocaresworld.com Instagram for Who Cares: www.Instagram.com/whocares.world
I so badly wanted it to go like this: Get a diagnosis, get the treatment, heal, get in remission, continue on with my life. I think many of us get into that mindset because we don’t know any better. But we need to know the truth. So here it is...
Team Vasculitis Instagram:
http://www.instagram.com/teamvasculitis
Animals may be the best way for us to get support mentally and emotionally.
There are studies out there that show evidence that having a pet can help reduce your blood pressure and loneliness.
Join the Waitlist:
https://bit.ly/3sViLcp
Sign up for the email list:
https://teamvasculitis.com/team-vasculitis-email
Connect with the community:
http://www.instagram.com/teamvasculitis
It has been a long decade since I was diagnosed. It’s been a struggle to make it through all of the things. It’s been heartbreaking and soul shattering, filled with several identity crises. It’s also been joyful and peaceful. It’s given me a perspective that allows me to find more fulfillment than I ever did before. I no longer waste much energy wondering or worrying what most people think of me. Not that I use that to just blast through life, but I use it to allow myself to focus on who and what matters.
If you need support in managing your energy and encouragement to do it... this is the episode for you!
Team Vasculitis Email List:
https://teamvasculitis.com/team-vasculitis-email
Chronic Illness Survival Kit:
https://bit.ly/3Hj0yvh
Join the Community:
http://www.instagram.com/teamvasculitis
I have spent so much time over the past year thinking about you. Trying to figure out what it is that I can do to provide more support and more value to you.
So, what can I do to help you? I kept coming back to that question. How can I do more to help you? What can I create to improve your life?
Join the community:
Http://www.instagram.com/teamvasculitis
Join the Chronic Illness Survival Kit Waitlist:
https://bit.ly/3xoVL8f
Once you have a chronic illness, every single day you face multiple things that remind you that you are not a “normal” or “healthy” person.
Sometimes it’s the medication you have to take. It could be the supplements you have found help your body function. It might be how much planning you have to do just to get through your day, or the things you don’t even try to do because you know what it will cost you.
Join the Email List:
https://teamvasculitis.com/team-vasculitis-email
Join the Chronic Illness Survival Kit:
https://bit.ly/38Cvk5q
Team Vasculitis Instagram:
http://www.instagram.com/teamvasculitis
You might be missing what is actually going on with your body because you’re so used to it that you may be experiencing sensations that you aren’t registering or conversely, you might be thinking you are experiencing sensations that you actually are NOT feeling.
This episode breaks down how you can prevent this issue!
Join the Community:
http://www.instagram.com/teamvasculitis
Check out the website + join the email list:
http://teamvasculitis.com
Meet August!
This amazing human spends so much of his time spreading not only awareness for the Trans, Asian, and Disabled communities but joy and light too. He has Behcet's Disease and as a Vasculitis warrior he supports others through their process.
Connect with August:
https://www.instagram.com/withlove_august/
https://www.tiktok.com/@withloveaugust
Connect with Team Vasculitis:
https://www.instagram.com/teamvasculitis/
https://www.tiktok.com/@teamvasculitis
http://teamvasculitis.com
Today we dig into the struggles that all chronically ill people have to face with their mental health. With or without a diagnosis, you face a life change that many around you won't ever understand. You can't meet cultural standards of productivity. You can't show up as a loved one the way you used to. You may not even be able to do any of the things that you used to, and so you face an identity crisis on top of everything else.
Join the Community at:
http://www.instagram.com/TeamVasculitis
Sign up for the email list:
https://teamvasculitis.com/team-vasculitis-email
When you're struggling to find balance, we often look to all of the different ways you can help your body heal. The messages of how exercise can help are prevalent... for healthy people. The question is, how safe and healthy is exercise for someone with Vasculitis?
Listen to get all the must have information!
Join others who get it:
http://www.instagram.com/teamvasculitis
Get all the information and join the newsletter:
http://teamvasculitis.com
Take note of your after visit summaries and your office visit notes. I go into great detail in this episode about my own case because I want to illustrate on how many levels doctors can get your information wrong. I know how difficult it can be when you have serious issues going on to also keep up with these kinds of things.
For all the details listen to today’s episode streaming anywhere you listen to podcasts. Link is in bio! If reading is more comfortable for you, check out the blog on teamvasculitis.com. Link in bio for that as well!
Instagram:
http://www.instagram.com/teamvasculitis
Website:
http://teamvasculitis.com
Doctors appointments are overwhelming. You have so many questions, and only one small chance to get them answered. If you prepare ahead of time, you an set up a system that makes sure you your doctor is ready with answers for you, and you are ready to hear them.
Instagram:
http://www.instagram.com/teamvasculitis
Website:
http://teamvasculitis.com
Patreon:
http://www.patreon.com/teamvasculitis
The challenge we have to overcome is that we have spent our entire lives, especially if you live in the United States, being told to do more, be more, aspire to more.
Then… you get sick, and you can barely do anything. Depending on where you are in your journey, you may not be able to do much of anything and that’s where our new education on the dark side of hustle culture starts.
Connect at:
http://www.instagram.com/teamvasculitis
Sign up for the Email List at:
http://teamvasculitis.com
Check out our merch at:
https://teamvasculitis.myshopify.com/collections/all
WE AS A COMMUNITY should have a voice so the things we need are researched and that’s where groups like the Vasculitis Foundation could increase how they support us exponentially by INCLUDING us.
Your thoughts. Your journey. We, as a community, need to know your truth. No matter how THEY see it. From onset due to vaccination. To sexism and ableism from our medical staff. To medical gaslighting and on and on. I have stories, and many of you have shared stories with me, that your medical staff have treated you with ableist bias and dismissiveness AND THEN grandstand on the fact that because they are medical staff they can’t be ableist.
WHAT!?
So my fellow patient - participate here. TOGETHER we have power and we will make a difference. Right now, we’re just getting started but I have BIG plans.
Join the email list and get all the info:
http://teamvasculitis.com
Join the community at:
http://www.instagram.com/teamvasculitis
Join the Patreon and Support Team Vasculitis
http://www.patreon.com/teamvasculitis
Meet Melinda!!!
Her story is similar to mine - she went through trials as a mom with chronic illness and was raising kids with disabilities. Then she realized there was no support for her - for us. So, she decided to change that by creating it herself!!!
I love what she's doing! Her mission and her message are SO important.
Follow Melinda at:
https://www.instagram.com/heymomme
http://www.heymomme.com
Follow Team Vasculitis at:
https://www.instagram.com/teamvasculitis
Support Team Vasculitis and get tons of extras at:
Https://www.patreon.com/teamvasculitis
Do you find yourself getting anxious when you make plans? I do.
I LOVE that I am even in a place to think about all of this. To put it on the calendar and HOPE that I will be able to do it.
Then, right after that sense of excitement peaks - I feel that tense feeling in my chest and my heart starts to race and I start breathing shallow and I can’t help but go down the “what if” rabbit hole.
If you do too. This one is for you!
The BEST way to support Team Vasculitis is to join the Team Vasculitis Patreon:
https://www.patreon.com/teamvasculitis
Follow and meet other warriors:
https://www.instagram.com/teamvasculitis
Can we stop with the focus and mindset and all of the bull about “at least it’s not cancer.” Just stop. I get a ton of messages of people dealing with this toxic perspective. Things like “I know it could be worse, it could be cancer.” Or “I know others have it worse, dealing with things like cancer…”
Today I break down the psychology and a few facts about why this is TOTALLY incorrect!
Join us on Instagram:
https://www.instagram.com/teamvasculitis
Support us in the Patreon:
https://www.pateron.com/teamvasculitis
YOU AREN'T ALONE!
What I want YOU to know is that it’s normal for our loved ones to struggle with this. I want you to know that you will be able to get through it. I want you to know that you can work on accepting that they are struggling too, but it doesn’t mean that they don’t love you. It doesn’t mean that they don’t see you.
It can be easy to become so lost in our emotional crash that it is hard to find room to allow our loved ones to go through their grief process too. As hard as it can be, you need to let them process too. Talk about it. See a therapist. Whatever it takes. You and your loved ones will be better off for it.
Follow me at:
https://www.instagram.com/TeamVasculitis
Join the Patreon at:
https://www.patreon.com/TeamVasculitis
Shop to spread Awareness at:
https://teamvasculitis.myshopify.com
All health in the body are affected by the gut.
Immunity, and therefore auto immunity, can greatly be pushed for the positive or the negative based on what is going on there.
Today amazing functional dietician Jillian Smith shares insight as well as a few tips on how to help support your body and live a healthy and balanced life!
Follow Jillian:
https://www.instagram.com/jilliansmith.rd/
https://www.instagram.com/gut.personal/
https://www.instagram.com/the.gut.fix/
Join us at Team Vasculitis:
https://www.instagram.com/teamvasculitis
You didn't choose to have your illness. No one really knows why it happens. Science doesn't know, so don't let anyone tell you they know.
What you CAN choose, is how to live with it.
Today I talk about these choices and give you a little personal experience.
Feel less alone and join us at:
http://www.instagram.com/teamvasculitis
WE ARE RESILIENT. WE ARE CAPABLE. WE ARE SMART. WE ARE VALUABLE.
Our bodies functioning differently than others doesn’t change that. It doesn’t matter if you were born with a chronic condition or if you had onset at any point in your life. You are valuable and ANY contributions you make are valuable. Your life is valuable. We don’t always realize how we impact others.
Follow me at:
http://www.instagram.com/teamvasculitis
Today I chat with one of my FAVORITE dieticians. Bridgette is not only a dietician, but is also a functional medicine practitioner. She talks about the difference between a nutritionist and a dietician as well as the importance of testing before taking supplements and her own amazing company Gut Personal.
- Stay Tuned for Part Two Where I talk to Bridgitte's business partner Jillian about nutrition! -
Links for where to find her!
https://www.instagram.com/wellbybridgitte
https://www.instagram.com/the.gut.fix/
https://www.instagram.com/gut.personal
Follow me at:
https://www.instagram.com/teamvasculitis
The American College of Rheumatology put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.
Today I dig into the Relapse Therapy recommendations for Granulomatosis with Polyangiitis and Microscopic Polyangiitis. I give you it in a patient's point of view and less medical jargon. One patient to another. Instagram: http://www.instagram.com/teamvasculitis
Today I introduce you to Cat! She shares her journey from challenges as a child, to finally receiving a diagnosis as an adult. After getting a handle on things, she went through major emotional trauma which sent the disease into overdrive. She has a partially paralyzed stomach, suffers from seizures which limit her freedom, and so much more… and yet, she still chooses to continue Rising from the Illness.
Find Cat at:
https://www.instagram.com/risingfromtheillness
(Check out her podcast too!)
Follow me and find community at:
https://www.instagram.com/TeamVasculitis
The American College of Rheumatology, in conjunction with the Vasculitis Foundation and Dr. Sharon Chung from the University of California San Francisco Medical Center’s Vasculitis clinic - as well as other doctors worked to put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.
Today I dig into the Remission Therapy recommendations for Granulomatosis with Polyangiitis and Microscopic Polyangiitis. I give you it in a patient's point of view and less medical jargon. One patient to another.
Instagram:
http://www.instagram.com/teamvasculitis
Facebook:
http://www.facebook.com/groups/teamvasculitis/
Today I introduce you to Mandy!
She was diagnosed at age 18 and found herself navigating onset of this disease and treatment during her freshman year of college. Now happily married, disease managed - as much as it can be, Mandy shares her sinus involvement and how even "managed" it's still a struggle.
Follow Mandy here:
http://www.instagram.com/amandalura_
Follow Me at:
http://www.instagram.com/TeamVasculitis
The American College of Rheumatology, in conjunction with the Vasculitis Foundation and Dr. Sharon Chung from the University of California San Francisco Medical Center’s Vasculitis clinic - as well as other doctors worked to put together an official set of recommended guidelines for the care and treatments of a few forms of Vasculitis.
Today I dig into the Induction Therapy recommendations for Granulomatosis with Polyangiitis and Microscopic Polyangiitis. I give you it in a patient's point of view and less medical jargon. One patient to another.
Instagram:
http://www.instagram.com/teamvasculitis
Facebook:
http://www.facebook.com/groups/teamvasculitis/
Meet Ellie!
Diagnosed with GPA at 17 after many misdiagnoses she was put on high levels of cytoxan as she navigated high school and college, only to need major surgery and face a 10+ year battle before achieving remission. Today she shares that journey. The medications, the stress, the testing, and where she is today.
You can follow Ellie at:
http:///www.instagram.com/ellietalk
You can follow me at:
http://www.instagram.com/TeamVasculitis
Every times you wait on tests or walk into a doctor's appointment the results of those things can be life altering. Do you need to add a medication? Will something else be wrong? medication? There are so many uncertainties and it is incredibly anxiety inducing.
It's not in your head and you're not alone.
Instagram:
http://www.instagram.com/TeamVasculitis
Facebook Community:
http://www.facebook.com/groups/teamvasculitis/
Meet Bri, a GPA warrior, mom, and all around amazing human.
Today Bri shares her journey from the moment she knew something was really wrong, to diagnosis, and her journey since then. She opens up and shares her concerns and anxiety that so many Moms with chronic illness have.
Follow Bri at:
http://www.instagram.com/b_doyle
Follow me at:
http://www.instagram.com/TeamVasculitis
I felt so alone when I was diagnosed, and for a long time after. No one understood. The people in my life who love me did their best, but I needed someone who was walking through the fire. I needed someone who understood. I needed someone I didn’t have to answer so many of the basic questions for. I have found that… and I have found so many who still have been alone. Here, I want to offer a place where if you search a hashtag for any form of Vasculitis, and a few basic chronic illness ones, you find a feed full of things relevant to you and others who are going through what you are.
Follow me and connect with others at:
http://www.instagram.com/TeamVasculitis
I started this podcast thinking I’ll let other Moms know that they aren’t alone and share some stories of fellow Wegener’s warriors, because rare diseases make it difficult to find people to connect with. It took a few months, but I quickly found out that being a Mom life podcaster and sharing about my kids wasn’t a good fit for me.
I don’t know where this will lead… and if you were here for the mom life stuff, and this whole Vasculitis, Rare Diseases, Chronic Illness life isn’t your thing. I get it. I’m sorry if I’m letting you down at all, and I deeply thank you for your support this past year. This is something I have to do.
Today is a really hard day. The last few months have been really hard. Tomorrow is going to be really hard too. Right now all I can see are hard days ahead because I am not improving and if I go on prednisone my undiagnosed thing will become almost impossible to diagnose, so I have to do my best without it for now. Maybe I’ll get to test out that new FDA approved medication for my rare disease. Who knows… What I do know is that you are not alone and me knowing that I have you helps me get through it all. So, thank you for that.
Follow me at: http://www.instagram.com/fightlikeamama
Today I introduce you to Alexis. Healthy foodie and health coach who has a vision to give every family the tools to get their kids excited about healthy foods! Offering allergy friendly recipes and kid activities to get them excited to try new foods and eat more of their fruits and veggies, her e-kit will transform your child's relationship with food.
Follow Alexis at: http://www.instagram.com/my.little.seedlings
Follow me at: http://www.instagram.com/fightlikeamama
I have something I want you to know… You aren’t going to want to believe it. Something in your head and maybe even your heart will reject this. You will disregard it. You will dismiss it. You will say, maybe YOU are those things, but not me. Maybe YOU can claim that, but not me. Maybe it’s true for you… but me, I’m just getting through my day and I do it badly.
Tune in to hear this important message!
Follow me at: http://www.instagram.com/fightlikeamama
My mission is for no one to feel alone. To help support our community through community. I never want anyone to feel as lost and alone as I did when I was first diagnosed, and for a long time after.
I am sharing my experiences, both actively bad and completely ignored, with the Vasculitis Foundation because if I have experienced it and it made me feel more alone, you may have as well. Their outdated way of operating and interacting with their community creates more isolation than support and straight talk - that’s NOT acceptable.
Follow me at: http://www.instagram.com/fightlikeamama
We’re all supporting one another and we’re all thriving more because of it. We are stronger in our community. We are happier and healthier both physically and mentally. We share tips and tricks and new information. We have solutions that - straight up - DOCTORS DO NOT HAVE. What they focus on is keeping you alive. Many times, the ways we make that happen is outside of the medication you take, and really the medical community just misses that part.
All of this is why having a community is VITAL when you are chronically ill. If you are struggling and feeling alone.
Follow me at:
Http://www.instagram.com/fightlikeamama
From medical breakthroughs, to new medications being developed and approved, to nutritional understanding and so much more, we have so many reasons to have hope!
Hope. Have hope. Have hope of continued improvement in care. Have hope for advancement in medication options. Have hope new treatments and procedures. Just… Please, have hope and keep fighting.
You are not alone. We’re in this together.
Follow me on Instagram here:
http:///www.instagram.com/fightlikeamama
Vasculitis Patient Powered Research Network:
https://www.vasculitisfoundation.org/research/vpprn/vpprn-who-we-are/
There is a black and white perspective that many of us feel every day. It makes walking through the world and interacting with people who aren’t in our alternate reality really scary, we never know when they’re going to make it that much more difficult for us to get through that moment, that day, our lives. It’s lonely all the time to watch others out living their lives while we want to be with them but can’t. It’s hard to hear about the adventures loved ones are having without you. It’s heartbreaking to send your babies off with their other parent, or other friends and loved ones, and know you are missing out on precious moments of them growing up.
I get it! Today, let's talk about it!
Connect with me on Instagram:
http://www.instagram.com/fightlikeamama
Meet the amazing warrior that is Gerry Ugalde!
With a 5 month old at home she ended up in the hospital to only be told she has this strange rare disease - PLUS another huge surprise.
Since then she has endured treatments, surgeries, career changes and so much more. It was truly an honor to sit down and talk to her and I know her story will impact you, as it has me.
If you’re interested in an even deeper dive into Gerry's story - check out the book she wrote! Dancing with Disease is available on Kindle and in print from Amazon!
Follow me and meet other Vasculitis Warriors at:
http://www.instagram.com/fightlikeamama
Because our illnesses are invisible, they are often overlooked by those around us, and we’re used to that. What we sometimes forget is that the illness being invisible gives US PERSONALLY some much needed mental and emotional separation from the pain we’re going through. They are tiny moments, but they really help us survive.
So when something happens that makes the invisible illness VISIBLE suddenly, that’s a whole new challenge to deal with. Not only is it a loss of peace, it is a new trauma to deal with… and really, didn’t you already have ENOUGH traumas you were dealing with?
Connect with me at:
Http://www.instagram.com/fightlikeamama
It's been NINE YEARS since I was diagnosed. In that time I have relied on my friends, family, doctors, and even strangers at times. I couldn't have functioned without them. I would not be where I am today, or who I am today, without them.
Today my Mom, Husband, Sister, and life long friend answer two questions:
1. What do you tell someone when they ask about my health?
2. How would you say this has changed me for the better?
Follow me on Instagram at:
http://www.instagram.com/fightlikeamama
PSA: You don't have to punish yourself for that extra slice of pie or skipping a workout. If you're consistent in your goals, these things won't stop you.
Find the Video Here:
http://www.instagram.com/marketlikeamama
Today I want you to hear my heart when I say, there are very beautiful things that can come out of this difficult journey. No one would ask to be set on the path of chronic illness, but once you're there - when you're ready - there is beauty to be found.
We see things differently because our lives our different, and we bring joy, acceptance, grace, support and kindness to the world around us in ways we could never had before.
Follow me on Instagram:
http://www.instagram.com/fightlikeamama
If you're new to this whole Chronic thing, there is something you need the low down on: nutrition.
Now, I am absolutely certain that everyone and their second cousin has told you - Oh, my so and so had something like that and they did (fill in the blank) and got better!
Those fill in the blank things are usually gluten free, dairy free, sugar free… maybe an essential oil combination, or of course yoga!
I am not telling you at all that these things can’t help. Of course they can. They help pretty much anyone who utilizes them at different levels... but when you have a chronic illness, everything is different. Here's what you need to know!
Follow me on Instagram:
http://www.instagram.com/fightlikeamama
I want you to try and remember two things:
-
You don't know where people are at mentally and emotionally. Accept them for where they are now.
-
It's not about you. However they respond or don't respond. Love them where they're at.
You can watch the video at:
http://www.instagram.com/marketlikeamama
It’s everywhere, right? People posting a daily gratitude, commercials about giving thanks and being blessed… heck that trend has even taken to clothing now a days and every store we walk into has graphic tees telling us to be thankful, grateful and blessed.
Life is hard for everyone. Even those without chronic illness making everything feel like a fuzzy, out of focus, and over exposed video from the 80s.
You’ll get through this. If you don’t have someone to message to help you get through it, well friend… you’ve got me.
Follow me at:
http://www.instagram.com/fightlikeamama
Create a way to connect with the people in your life both personally and professionally that does NOT include social media. Dave Chappelle was 100% right when he said (in The Closer) Twitter is not a real place.
Meet Dena Williams!
This amazing woman has been through it all. 3 different treatment plans, hospital stays, more than 20 doctors and health professionals... and of course all the blood, sweat, and tears.
Today she shares her journey, and get's really open and raw. You can follow Dena at:
https://www.instagram.com/denawilliamsss/
WARNING I drop an f bomb and call someone a c bomb at the end. I give warning before I say it. It was necessary. You'll understand.
The problem is society in general believes this. That I am overweight so I must eat really unhealthy food. That when I come asking for help I must be pill seeking. That if I just got my lard ass off the couch, or took the stairs, I wouldn’t need medical help.
The truth is we don’t know what causes onset of these diseases and I am proof that it isn’t about lifestyle.
Link to Reel Mentioned:
https://www.instagram.com/reel/CU5yI57BVfC/
In our busy lives it is so easy to lose track of things that light us up and bring us joy.
Today I talk about something my good friend Jeni the host of Positively Jeni - Coming Dec 1st - said about finding passion.
It doesn't have to be an every day thing. What is has to be is FOR YOU. Even if it's word vomiting to a friend about it. As you talk, you feel that passion - right?
We NEED a few minutes of that in our lives. All of us. Especially moms who are giving so much of themselves to begin with.
As Always you can find video of this at:
http://www.instagram.com/marketlikeamama
Oh my friend, what a world we travel through. Where once you are outside of the bell curve you have to fight so much harder. It is what it is, and in some ways will always be, but know this - you are NOT alone. There is NO shame in any assistance you need. Needing accommodations does not diminish you or your worth in ANY way… and there are resources to help you. Search for them. Ask others with similar journeys what they have done or used that has helped them.
The most wonderful... and most crazy time of the year is here!
I give my three survival tips and a reminder that your kids being crazy is NOT a reflection of parenting!
It felt so cruel, I finally met my person and now I was seriously considering breaking up with him. How could I ask him to stay and not be able to have a partner who builds things with him, who travels with him, who can raise children with him? If he stayed with me, I would take away everything he dreamed of. If he found someone else, he could have that… and if I loved him, shouldn’t I give him the ability to fly?
You aren't alone - tune in and hear something that will help your mindset SO MUCH!
Follow Fight Like a Mama on Instagram for more Daily Chronic Illness and Mom Life tips, information, and support!
http://www.instagram.com/fightlikeamama
In a world of carefully curated content it is even MORE important and MORE powerful to show up as you. In the big and little wins and in the big and little failures. To show up with messy hair and no make up. To show up dressed your best and living it up.
Yes, you'll lose some people if you do this. More importantly though, the right people will find you.
Watch the live video in my hot mess-ness today:
http://www.instagram.com/marketlikeamama
Meet the awesome Holly!
Diagnosed with Wegener's at 14 after a nearly 3 year battle she has faced kidney failure, continues to have sinus complications, and has navigated her way through the medical system and natural health to figure out what works best for her - all before turning 25!
You can find Holly at:
http://www.instagram.com/healthyhealthyholly
Where do we stand in a very capable world? Where around us everyone is doing more with their time than you are. We have the same amount of hours in the day, but it can be really difficult to remember that we don’t have the same amount of ability. That can come from lack of energy, strength or some form of physical disability. We aren’t on the same level of playfield as everyone else.
You are worthy! Tune in to hear more!
Follow me on Instagram:
http://www.instagram.com/fightlikeamama
We all have so much going on in our heads and in our lives. The people around us don't have any way of knowing what is going to be our tipping point. They don't know you're three year old won't stop yelling at everyone. They don't know you have a difficult relationship with a family member. One client has no idea what is going on with another client.
Today I talk about a quick way to deal with stress in the moment.
You can watch the video at:
http://www.instagram.com/marketlikeamama
We all know how incredibly draining and stressful dealing with three year old behavior can be when you’re not sure how to handle it. Among the parent grapevine I am sure that you have heard that this so-called “bad behavior” starts with the Terrible Twos and often gets worse before it gets better. Hence, the threenager stage was born.
Today I give support and a couple of tips on navigating this really tough season of parenting!
Have you ever been going through a tough day only for someone to say - what can you learn from this or ask you to "flip the script?"
Where you're at is OKAY. It's not only okay - it's normal, healthy and NECESSARY to go through the tough stuff. Rushing past it or ignoring it only hurts you and those around you. Listen to today's episode to hear more.
You can watch today's episode at:
http://www.instagram.com/marketlikeamama
Having extremely low ferritin, when you are not clinically anemic, is a specific type of anemia called Hypoferritinemia without Anemia or HWA. There is no kidney involvement and there are no other clinical issues like typical iron deficiency causing anemia.
It typically goes undiagnosed, and can cause permanent damage!
Links to resources mentioned:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/
https://www.bmj.com/content/326/7399/1124
Have you ever given someone information or instructions and then they did something completely different than you expected? Have you ever followed the instructions EXACTLY only to have someone upset with you for not listening?
Today I talk about this communication problem and give a couple of tips on how to fix it!
You can watch the video at:
http://www.instagram.com/marketlikeamama
Being a parent is TOUGH.
Having a chronic illness is TOUGH.
Combine the two... and man. It's so easy to feel like you're failing EVERYWHERE.
Tune in to this episode for some love... I get it. I see you. I've been there too.
It's easy to be motivated when you start. You're excited. Then life goes on and it gets more and more difficult to prioritize. Right?
In today's episode I talk about my trick to give my brain those serotonin bursts and feel more motivated every week!
You can watch the video of this episode at:
http://www.instagram.com/marketlikeamama
Look under the IGTV tab, and choose the Messy and Mindful Moment series!
Do you ever look at your "to do" list and wonder how you'll get it all done? Do you ever get anxiety or feel depressed because you see yourself never getting it all done? Do you ever look at the people around you and find yourself comparing to how they seem to do it all, but you never can?
No matter what phase of life you're in. Single. Dating/Married. Married + Kids. Single + kids... I am here for you and so is this episode!
Life is crazy. We never seem to catch up on our to do lists, right? Add in a few kids and BAM nothing is ever without at least an element of chaos! Today I talk about how I handle that and something VERY important I want you to remember!
You can always watch the video of this here:
http://www.instagram.com/marketlikeamama
Go to the IGTV Option. Choose Messy and Mindful Series!
Travelling has a laundry list of stressful aspects to it. When you add complications and considerations due to chronic illness, it can be exhausting just to make a functional plan.
Today I share with you my anxiety, my raw honesty about all my concerns about an upcoming trip. Know you aren't alone my friend.
As a busy mom, working adult, and especially as a business owner it can be REALLY difficult to shut off our running to do list. It's so important though! Here I give you a few of my tips and a story about one time I needed to listen to my own advice.
Find the IGTV video: http://www.instagram.com/marketlikeamama
Feel like it's been one thing after another, after another, after another, after another and another and another?
Man, it's been freaking HARD right now. But my friend. You are getting it done and you're doing an amazing job!
Don't believe me? Listen to this episode!
How many things can you look at in your life right now, today and say - man. I remember how scared I was to start, but look at me now? Maybe it’s cooking and feeling comfortable in the kitchen. Maybe it’s taking up karate as an adult. Maybe it’s launching that business you’ve dreamed of. Whatever it is, sure there are going to be mistakes. There are going to be failures of multiple levels… and of course the more important to you this is, the bigger it is, the more you are going to be afraid to fail.
Anyone else feel like they just cannot stand anyone else to touch them as their perfect tiny humans climb on you, crawl on you, pull on you and more? Man, it is EXHAUSTING. Then your husband comes up and wants to hug on you and expects you to want to get naked and enjoy it. hahahahaha
Right? Well, it is possible. It takes work. Today I talk about the work I did and how it has helped in my relationship with my husband and my overall happiness.
Today I talk about why it is important to not only set and maintain your own boundaries, but to honor other's boundaries without being upset with them.
You can watch the IGTV on this episode at:
http://www.instagram.com/marketlikeamama
Meet the amazing and fantastic Emily!
This woman has been a constant source of inspiration for me for years, and I was BEYOND excited that she said yes to be on this podcast. She shares her journey fighting to stay alive and maintain a high powered finance career while being an amazing wife, step mom AND inspiring others!
Emily's Instagram: http://www.instagram.com/eckyne
Okay friend! It's time to get really real. Don't worry, I keep it clean and straight forward. Mostly I talk about hormonal issues and how a few changes made me go from an exhausted... okay, we can have sex if you want but I probably won't orgasm. To trying to jump my husband like when we were first together.
Tune in to see what I did to make that change happen.
Alisa: here
Aviva: here
Today did NOT go according to plan. Welcome to the Messy and Mindful Moment happening in the MESS!
I had a whole plan about what I wanted to talk with you about, and that went out the window when my big girl reminded me that I'm actually doing an awesome job!
Here's your Monday morning mindset moment!
Women can have everything. They just can't have it all in the same season.
Words I live by. I have had some crazy seasons. Once that stripped me bare to my soul and I had to fight non-stop to get back from. The biggest lesson I have learned is that when your current season comes to an end you feel it deep in your heart. When you feel that - don't wait. Don't pause. Don't worry. JUMP into the next season.
Meet the amazing Jessica
This badass woman decided she wanted to do better. She wanted to give her daughter more. She wanted to give her a parent that could support her and lift her to her best self, not one that perpetuated the difficult moments. Through her own journey she realized how intensely our own trauma affects our children and found her calling in helping other parents heal and break the cycle.
Find Jessica:
Instagram here
Website here
Anyone who has ever been in charge of a child long enough that they had to provide a meal has experienced the struggle.
Don't worry. You're doing so much better than you think you are, if you want reassurance and a few pro tips. Today's episode will give you both!
In the hard times, you take a deep breath, and just do the damn thing. Does it absolutely suck? Of course. Do you fall apart and cry in the stress overload? Yep. Do you make it through like the badass champion you are? ABSOLUTELY!
If you need a reminder of the warrior you are. This episode is for you!
Looking for a raw, vulnerable episode? That's today's episode.
Today I share with you about my dad. About losing him, about how it changed me, and about how it's okay to still be broken by a loss; even 20 years later.
WARNING I cry. My husband literally said, "you were crying so much." As he overheard me recording. But this hard truth is important. I want you to know you are not alone.
Meet Cassie!
This brave, strong, incredible woman has been fighting for her life since she was a teenager. Dealing with onset of a rare disease well on a mission trip, and all of the extra challenges it added to her life head on. She has come out stronger and more brave, and says, "I have Vasculitis. What's your excuse?" Even through all of that, instead of it making her angry and bitter, she is working to have a career in nursing and help give back to the world.
Find Cassie: here
I have zero idea on how to take on a system and get changes like staffing made. You have to start somewhere though, and my complaints as well as other's are brushed off and filed away as “responded to.” When it comes to health care, challenges with access to care, doctors who will believe you, and the right medications will literally end up costing people their lives.
Do you practice gratitude? Are you teaching your children in an intentional way or just leading by example? A few years ago I decided to be very intentional and it has been REALLY paying off. Tune in today to hear what we do, how we do it, and what research we did in our journey.
The Whole Brained Child by Dr. Dan Siegel
Emotional Intelligence Info: here
Gratitude for older kids and teens: here
Today I want you to meet Sara!
As like so many others I have had the honor to speak to about their journeys with Vasculitis, her story is fully of similarities and major differences. She not only battled this disease, but necratizing facitiis as well!
Find Sara at:
Instagram: here
Website/blog: here
Talk to one another. Even if it’s uncomfortable. Remember that what you say, no matter how clear you try to be, may be misinterpreted by the receiver, and be prepared to talk it out for clarification. Over communication is better than lack of communication. Always.
Warning: I drop one F bomb. You'll understand when you get there.
To be vulnerable is to be courageous, because vulnerability stands defiantly in the face of fear, accepting the uncertainty of possible attack or and being totally compromised. To refuse or deny your own vulnerability is to close yourself off to life and all of its opportunities out of fear, not strength.
Brene Brown TedTalk
Gareth Cook's article: here
Meet my amazing friend Courtney!
This lady has been fighting for a diagnosis and has been left to find her own answers. So she decided to become her own nutritionist and do her own deep dive into her symptoms.
She is a true warrior!
Find Courtney on:
Instagram: here
Podcast: here
When was the last time you trusted yourself?
Having low self esteem can actually hurt you in more ways than you are aware of. It doesn’t just affect your relationships, and your job, but it can also affect your health. The challenge is that issues with confidence and self esteem are most often deep rooted in our identity from some kind of trauma. Which means the work it takes to even first decide that you DESERVE to be a happy, healthy, confident person can take work. That work needs to happen before you can see yourself as worthy of the relationship you want, the career you want, the LIFE you want.
Today's episode is for YOU my friend!
Once you become a parent, summer can easily go from one of the most magical and exciting times of the year, to one of the most stressful, exhausting and seemingly never ending. Now, I can’t promise if you do these things it won’t ever feel those ways, but it will feel more manageable most of the time.
Tune in for tips to make summer more fun for the whole family!
Meet the amazing Alisha!
From coaching women how to find their inner fire, to chasing kids and encouraging us to find the Magic and Madness in Motherhood, I promise you'll love this awesome Mama as much as I do! Find out how she manages and what she does to be the Expert Hot Mess Mom!
Find Alisha:
Instagram here
Website here
Clutter! Does the word just stress you out too? Thinking about it stresses me out. Clutter on the floor and I think about all the times someone has tripped over things. Thankfully we haven’t had any major injuries due to it, but we have had several close calls. My kids especially love to leave books on the floor and that totally drives me crazy. I say at least five times a day, “We do not leave books on the floor.”
If clutter is stressing you out, tune in! I have tips!
Let me know if this sounds like you…
You come up with an idea. It sits there in the back of your mind and pops back up from time to time. Sometimes you even look things up on how to make it a reality. Maybe you even took the next step of buying a few things to get started. Then those things end up shuffled around your house because they’re just sitting there in the way. At some point you might even put them in an extra closet “until you're ready” as you promise yourself that “someday” this will be a thing you do.
If this is you, this episode is for you!
Have you ever felt like it takes work to be friends with someone? Maybe you have to pretend that you like things you don't or you hold back and don't let yourself shine when they're around.
In today's episode I talk about how not only NORMAL it is, but how NECESSARY it is to move on from some friends as we ourselves grow.
As the hustle of life becomes overwhelming it can be easy to slip from romantic partners to business partners. There are, of course, hundreds of ways to stay connected and in love with your partner. Today I share a few that my husband and I use.
Warning - yes, sex is mentioned!
Today I talk with the amazing Kelly Wasko. She shares her story about onset of HSP Vasculitis. Traditionally onset is during childhood, but in Kelly's case that's not what happened. Her struggle to be heard, the emotional turmoil of diagnosis, and the strain of medication... she holds nothing back.
Follow Kelly on Instagram: here
As women, we are uniquely qualified to collaborate and change the world together.
In today's episode I share with you a few ways that the world is truly a better place when women stand together and help one another shine.
Today's society is full of pressure. Pressure to do or be or even want what other's tell us. Many times these pressures even contradict one another. No matter how hard we push, it so often feels like we're failing and somehow we need to be able to do just preform better.
I found a message a couple of years ago, right after I had my second child, that I repeat to myself. It brings me peace as I navigate trying to "have it all." Hopefully, it will do the same for you.
Today I share with you a revelation I had about how to really work on loving myself. Accepting me for who I am - in the moment. Instead of beating myself up for not being different, and asking for forgiveness and grace.
To give credit where credit is due. The idea to think this way in more places in my life than I already was came from Amy Porterfield's Talking Body podcast and her coach Corinne Crabtree.
It was a huge WOAH moment for me. Maybe it will be for you too!
Amy Poterfield: Instagram, Talking Body Podcast
Corinne Crabtree: here
This has been a REALLY hard season for me. I thought it might be for you too. So today I'm going to remind both of us of that life is good.
Also, I am reminding you of how absolutely freaking AMAZING you are. Really, you are. Listen to this episode and I'll explain how I know.
Today... today we focus on your strength, power and joy.
Meet the amazing Monika!
She got a science degree from UC Davis and the dream job that went with it. Then as life happened it wasn't a great fit any more. As things sometimes happen, the right path found her.
Now she helps others find success in a creative and passionate way as she manages Mom life and all the things!
You can find Monika on Instagram here
When was the last time your doctor ran a lipid panel? Do you know if you ovulate? What's the number 1 killer of women world wide?
Wow, what we don't know. Am I right? There are so many things that we should be aware of and I feel like no one told me. I see my doctors more regularly than most because of my illness, and still - no one told me.
So today my friend, I am going to tell you four things you need to know right now today. I'm also going to mention several things to keep in mind.
Stay healthy!
Full disclosure: I recorded this at 4:30am when my head was full of frustration and my heart was very heavy.
But I needed you to know. You CANNOT give up. You CANNOT stop asking questions. You CANNOT stop fighting.
No matter how amazing your medical team is. It's not their life, it's yours. So it's up to you... and that is a heavy burden to carry sometimes. I cried the whole day before I recorded this because of the anger and frustration.
It's never easy to fight this fight, because you feel like crap and are exhausted ALL THE TIME already. I feel you my friend. So if you need help. If you need tips, tricks, or just someone to tell you it's not in your head and don't give up. I'm here. You aren't alone.
Do you stay at home with the kids?
Do you go to work?
Do you work part time while the kids are in school?
Do you work crazy hours and barely see your family?
You do what's best for YOU and YOUR FAMILY. Period. No judgements here.
The problem is "everyone" has to weigh in and often what they say about Moms is awful, no matter what we do. Today, I'm telling you a little bit about my choice. To be at home... for now.
Are you struggling with making friends? Maybe you have AMAZING friends, but you can't remember the last time you actually saw them in person.
If most of your time is spent rescheduling, postponing, and straight up cancelling - I feel you. Friendship as your responsibilities increase is hard. Who has time for a girl's night out when the toddler is going through a growth spurt, and the baby is teething. Maybe it's more between work, volunteering, and whatever other personal commitments you have - matching up two schedules seems impossible.
Whatever your situation, you aren't alone. I'm there too. So grab your coffee, and let's talk about it.
Meet Allie Schmidt. She was young, too young to have ALS. So she had to fight to be listened to and has had to continue fighting as this disease has changed her life.
Mom to a now 1 year old son. She has seen how the world is too slow to make room being adaptive for those outside of the "normal." This prompted her to launch her blog focusing on resources for those living with disabilities.
You can find her:
Website: Disability Dame
Instagram: Disability_Dame
Ever felt like, man... I am just not making any progress. I'm just drowning. I have this list of dreams and goals, but all I see is a mess.
Today I talk about how to help you find your way to progress, and remind you - you ARE making progress.
It's not about perfect. It's not about doing it all. It's about making a choice, setting a goal, and taking steps forward. Even if sometimes you make five steps back next.
If you've been a Mom for 5 hours or 5 years... or however long, you know what it is to feel overwhelmed as a parent.
So many Moms have been talking about how hard it is recently.
Today I share with you about one of my worst days as a Mom and want you to know that you ARE NOT ALONE in the hard dark overwhelming time.
Do you ever feel like the social construct of obligation to stay connected with everyone is overwhelming?
If you feel like it's too much, if it takes away from your mental, emotional or even physical health it's absolutely the right thing to do to DISCONNECT from them.
We forget in today's world of technology that we do not have obligations to ANYONE as far as access to us or to our lives. In today's episode I share more about this and encourage you to take care of yourself first!
Like so many other rare diseases, Wegener's Vasculitis effects everyone just a bit differently. In today's episode of my Chronic Illness series, author, mother, and friend Jane shares her journey with this difficult and potentially fatal disease.
You can find Jane:
Instagram: @jane.l.edwards
You can find her book here:
https://www.amazon.com/Chronic-illness-learning-behind-smile/dp/1075727863
Wegener's Vasculitis - that's what my Rheumatologist told me I had. It wasn't easy to hear, and it was more difficult to live with. In my first episode about my journey (see podcast episode 4 - My Journey with Wegener's Vasculitis Part 1) I shared onset and diagnosis. Today I share with you those next couple of years. The treatments. The side effects. The emotional turmoil.
I put on 140lbs in a year.
Do I break up with my boyfriend or sentence him to life with someone non-functional?
How do I feel about freezing embryos?
Taking a medication to deal with the side effects of a medication (ie: prednisone)
It's not easy, but I want you to know you're not alone... I've been there too. I hope you find support, understanding and connection in my journey.
Today I talk with my good friend Nicole about her journey with Wegener's. Nicole is a Mom of two girls. She navigated onset of her disease with being a Mom of very tiny (her youngest was 18mo at onset!) humans. She is also a podcaster and entrepreneur. I am once again amazed by the similarities and differences in our journeys.
You can find out more about Nicole below:
Instagram: @SimplyWholeMoms
Podcast: Simply Whole Moms
Website: http://www.simplywholemoms.com
Nicole has a 4 part series on her website about her journey if you are looking for more information.
You start by not feeling great. Then these random things happen. Before you know it, you can't function like yourself any more. You might get a diagnosis that changes everything... but you're still you. Right?
Been there! Today I get really vulnerable in sharing some of my story as well as some universal chronic illness truths that will help you feel less alone.
Today I share the story my sister wrote about my nephew. It is about the emotional toll the pandemic is having on our children.
Our children are 10x more likely to die from suicide than from Covid-19. San Francisco has sued their school system over the lockdowns due the dramatic increase in suicide among school aged children there.
Please listen. Please share. Please get these children back with their teams and in their classrooms
Today my good friend Nikki shares how she first beats cancer and then moves on to what will be her diagnosis of Wegener's.
Once again, I am amazed at how similar and yet different each of our journeys are with this disease.
You can find her on Instagram:
@nicolealison
It can be really hard for the people around those who are chronically ill to know how to best show up for them. It can also be really hard to know what to say.
Today I remind you, you are still the person you have always been. You are the person that people have loved. It won't be easy, but you can do this... and this will help.
Wegener's Vasculitis is a Rare Disease that, like so many others, effects each person differently. In the first episode of this series, I talk with my friend Art Diaz about all things chronic illness and specifically Wegener's.
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.
- Cut them out of your life (not always an option).
- 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:
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If you've ever said, "Why does he DO that?! Or "WHAT in the world made you think that?"
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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!