15. what’s in our bag: chronic illness edition

by Cassandra Mendez · Published February 23, 2021 · Updated July 29, 2023

hi hello hey, and let’s take a peek at this week’s episode!

This week, we thought it would be fun to play off the “what’s in my bag?” YouTube video style in our very Rare with Flair way. While we’ve talked about our various chronic illnesses before, we took a more serious angle during episode 6. This time, we wanted to really have fun with it and still be honest about our daily experiences. We hope you enjoy our humor and see how we manage to still lead fairly normal lives!

episode summary

First, we start by sharing our exciting announcement (more below)! Then, we talk about what a day in the life with chronic illness is like, covering our bleeding disorder, various GI issues, other physical issues, and other nonphysical aspects. After, we talk about what’s in our respective bags (as a reminder, they aren’t big bags!) for our various conditions and “normal” stuff included!

As always, we hope you enjoy and please send us an email at hello@rarewithflair.com with any questions, suggestions, or weird things you have in your bag!

side by side of case (left) and cass (right) with their backpack purses. casey wears a plaid shawl and has her pink mini backpack on one shoulder as she looks over it at the camera. cass sits on a bed and holds her black mini backpack on one knee with her ostomy bag visible on the bottom left of her abdomen with a pink and green cover over it — Case and Cass with their bags, 2021

show notes

We have an exciting announcement: WE HAVE SHIRTS!!!
- What does this mean? We’re selling shirts with an artistic rendition of our show’s artwork for charity!
- Who does our fundraiser support? All the profits generated from our campaign will go directly to the Hermansky-Pudlak Syndrome Network, the 501(c)(3) nonprofit organization for our rare disease. For those unfamiliar with HPS, check out our what is HPS page. The HPS Network seeks to find a cure for pulmonary fibrosis, the terminal lung disease many of us will get in our lives, including Cassandra. The funds given to the Network will help us get to that cure, whether by raising awareness, funding research, or organizational costs to keep them up and running.
- How long will this fundraiser last and when will I get my shirt? We’re starting the campaign on Sunday, February 28, 2021 (World Rare Disease Day) and running it until Tuesday, March 16, 2021 (about 2.5 weeks). The shirts will ship out after the campaign ends and should arrive by early April at the latest. April 6th is HPS Awareness Day, so rock your RWF merch to support HPS awareness!
- Where can I buy a shirt? We’ll post the link to the Wear Your Rare, with Flair campaign here when it’s live on 2/28! You can also find the links in our Instagram and Twitter bios as well as our Facebook page.
We also hope everyone stayed safe during the blizzards this February!
Since we talk a lot about our chronic illnesses this episode, be sure to check out our ever-referenced episode 6 for a more serious take on our various autoimmune issues
- For proof that we have lives outside of being “sick” or “disabled,” see our episodes on fashion and music
Once again, a disclaimer that anything that we share is strictly our own experiences and we’re not trying to speak for anyone but ourselves

a day in the life with chronic illness

For all those #MedicalNerds out there, our specific kind of bleeding disorder with the deformed platelets is called thrombocytopathy (Encyclopedia Britannica)
Cass mentions having a powder that helps clot heavy external bleeding easily called WoundSeal (CVS)
Cassandra explains how an ileostomy is created and works. For more visual details, see ileostomy stoma (where the bag goes) (United Ostomy Association of America)
- She also talks very briefly on how the pouching system attaches. For more details, you can read about ostomy pouching systems (United Ostomy Association of America)
Casey mentions a few different GI conditions she lives with, gastroparesis (Cleveland Clinic) and GERD (gastroesophageal reflux disease) (Mayo Clinic)
- She also mentions her medication for acid reflux is causing her to develop polyps (Mayo Clinic)
Case lists off her other autoimmune issues: asthma, Hashimoto’s disease (Mayo Clinic), chronic anemia, kidney stones…
- She’s made a video on her chronic pain journey on her YouTube channel that’s really well done and super vulnerable so check it out

what’s in our bag?

Cassandra’s bag:
- emergency bleeding meds for a potentially major situation
- extra ostomy bags and spare appliance change
- small bottles of pills:
  - acetaminophen for pain
  - Imodium (anti-diarrheal)
  - stool softener
- roll of trash bags for Romana and for her ostomy
- sunglasses
- hand sanitizer
- reusable straw
- lip products
- Drip Drop electrolyte powder (pls sponsor us, Drip Drop)
- bioptic lenses (hands-free monocular)
Casey’s bag:
- emergency bleeding meds
- snack for her hypoglycemia (National Institutes of Health)
- inhaler for asthma
- ginger candies for GERD
- Icy Hot patches for chronic pain
- extra glasses for seeing a movie
- sunglasses
- mints
- lip products
- hand sanitizer
- monocular

Also, we’re thrilled to announce that we’ve both received our first dose of the Covid-19 vaccine!!! We’re so excited to be on the journey to living life safely again 🙂