Social Handles, Blogs, Websites, and Hashtags

www.lauramustard.com

https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard

https://twitter.com/mustardlaura @mustardlaura

Disorder Information

What is your disorder?

VATER Association and Latex Allergy

At what age did your disorder present?

Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over time

What was your life like before your disorder?

It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy

What would you be doing and who would you be if you were not managing chronic illness/ disability?

Good question. I think it could be easier to pursue a career as a musician and songwriter without needing amazing health insurance. I have friends who can afford to have less comprehensive health plans or just quit their "day job" to tour for 6 months (pre-COVID obviously). Or can move between jobs easier or have jobs with more flexibility to a degree. I've always felt that I needed that safety net. I am grateful to have a degree and a job with a steady income and insurance, obviously, but at times, it can feel limited with what I really want to do with my life in terms of music. Some of that speaks more to our healthcare system in the US rather than living with a chronic illness I guess. But it just always felt like there are certain rules I need to "play by" that not everyone else has to follow. There's also a big-time management piece in terms of everything I do to manage my birth defects. A bowel management routine and a big list of foods that make my stomach upset have been hard and limiting. In general, I have a pretty good system in place to manage it, but are still days that end up in the bathroom for hours, which can be frustrating. I usually check every ingredient before eating something, and I can still have an issue with a negative reaction.

What would you like people to know about your daily life?

Just all of the work that it takes behind the scenes to pull off the illusion of being "normal". Like I get up three hours before I have to leave the house in order to get ready. I have a bowel management plan, a catheter that needs flushing and cleaning and that's changed once per month. And before this catheter, I was prone to urinary retention, which leads to ER visits. I actually had three surgeries this past summer (in the middle of the pandemic) to put in this catheter and that impacted mobility and just overall comfort for a while (and still does to a degree, though it's improving). It's a bit of an "invisible illness" too in that most people wouldn't know about it if they met me on the street or interacted in the day to day. I always have a bag on me with extra supplies in case my stomach gets upset or I have issues with my catheter. I also have a giant water bottle on me cause I'm prone to dehydration and UTIs so I do my best to avoid that. It's a lot of calculations and planning for worst case scenarios I guess. I also see about 6 different doctors every year and have regular pills/perscriptions and ultrasounds and bone density scans to manage everything, and that's without any extra complications, like the catheter/urinary adventures this summer. And just the added expense that goes to healthcare, doctor's visits and all my regular orders to medical suppliers and CVS to manage everything. Again, it just takes a lot of planning and organization (which are not my strengths, lol) that people don't necessarily see or know about. And this is all going on while I work a full time job and try create a career as an independent artist and songwriter. And I do consider myself very lucky to be able to work and play music, cause I know not everyone with a chronic illness can. It's managing the frustration (and acknowledging that it's okay to be frustrated) while also having gratitude for what I can do, I guess.

What would make moving through the world easier for you?

More understanding and awareness about bowel/urinary disorders. Most people don't know about it and there is a bit of a taboo and negative stigma around any type of incontinence. It made me feel like I had to hide it growing up, which created a lot pf shame that I'm still working through. I only started talking about my medical issues publicly and on social media this past June, so it"s all still a little new being so open. Less of a taboo around it would be nice. Also, if restaurants and food producers would stop using latex gloves, that would make my world much easier. If anything is handled with latex gloves, I can't eat it and it makes my stomach really upset, so that makes eating a lot more limited for me. Lots of phone calls and conversations about latex gloves (which most people have never heard of, so I'm explaining that a lot). Also, everyone wear a damn mask and wash your hands cause I'm high risk and I really don't want to end up in an ICU on dialysis if I get COVID.

Do you have any life hacks? Coping mechanisms?

Journaling and songwriting for me have also been really helpful. And even though most people say I'm a very positive person, my journals are often really negative and not fun to re-read. Just lots of venting. And songwriting helps me process all of that too. And then I think just being aware of what does energize me, like taking walks (though I've needed a walking stick since the new catheter was put in) and playing music. Like when I have days that I'm stuck in the bathroom, lately I've been trying to bring a notebook in there and write songs, which is more energizing than binge-watching Netflix (though my bathroom adventures improved with invention of Smart phones and laptops, lol. Definitely helps to pass the time). Also, support groups online are really nice. I'm in a few Facebook groups for Latex Allergies and VATER Association and it's really nice to be able to talk with other people or read posts about people going through similar things. And even just searching hashtags on Instagram has been helpful. Like as soon as my urologist told me I needed a suprapubic catheter in June, I walked out of her office and searched #suprapubiccatheter on Instagram to see what it was like. And people to post pictures and stories about living with them. That was really helpful to see what I'd be getting into. It provides comfort since growing up I kind of felt like I was the only one in the world with all of these medical issues.

Support from family and friends? Has your disorder affected your relationships?

Yeah, I'm very grateful for the family I have. I kind of felt like I won the lottery with my family. My Mom managed all of my medical routines and appointments when I was a kid. And this was before the internet, so she was very good at self-educating. I remember doctors would always ask her during my appointments, "Oh, do you have a medical background?" And she would just be like, "No, I just learned it all from Laura". She is very organized and would look things up and really have an understanding of what was going on with me. And could pursue other treatment options too. And we were fortunate to always have good health insurance with my Dad's job and them my Mom's job so I was never aware of any financial stress as a kid. My parents and sister are very supportive of it and I still feel like I can ask my Mom medical questions I have. As a speech pathologist who works with children who have special needs, I've seen how hard it can be when families don't have a good understanding of what is going on medically, if there's denial, if they have have trouble managing all the home care and appointments or just have financial stress, and it makes life a lot harder. So I am really grateful for the family I grew up in. As a kid, I did experience a lot of teasing. I had the nickname "pampers" from 3rd grade through about 8th grade, which was not fun. And even close friends I told about my feeding pump in 6th grade were pretty mean about it, so I learned from an early age to be really secretive about my medical stuff. That if I told people outside of my family, it felt like I would be rejected. So I really didn't tell anyone outside of my family about it until college, which in hindsight, helped create a lot of shame around it. And it made dating more challenging. I'