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.

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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!

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

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

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

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: [email protected]

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.

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Introducing Dr. Michelle Arietta DC! She is a licensed chiroprator and has been helping people achieve their health goals for 20 years. I personally worked with her and saw imporved sleep, less neuropathy in my legs, and so much more! I had a nerve study done and the doctor told me there were signs of regeneration, then asked if I was seeing a chiropractor!

In this conversation we cover why chiropractic is so important and why I don't consider it "alternative" at all!

Connect with Dr. Michelle: Website: http://www.myfavoritechiro.com

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

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I get it. Your whole life did a 180 when you got sick. You had to step away from dreams and goals and there is a chance you'll never get those back. You even see people achieving these incredible levels of health as they get into remission… but you're not there so you feel this huge range of emotions… sadness, fear, anger, brokenness, resentment and whatever else bubbles up. It can be so demoralizing to see person after person share their story of how they achieved health after diagnosis and not be there.

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

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It seems like right now so many people are struggling in this community. So if you've been feeling that way, you aren't alone. My DMs have been flooded by people sharing stories of everything from physical issues, to emotional issues, to monetary issues, and everything in between.

So I thought, what you might need to hear the most is some love and support that doesn't shy away from the dark or push you into the bright shiny side that you're not really ready for…

Here it is… a love letter from me to you.

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