February 23, 2021

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

59 minutes

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 [email protected] with any questions, suggestions, or weird things you have in your bag!

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 🙂

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By Casey Greer and Cassandra Mendez

4.9

8484 ratings