Lisa Weinberger - Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions

PARENTS AS RARE - EPISODE 052

Lisa Weinberger - Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions

Lisa Weinberger is a wife, mother, digital marketing professor and business owner with over 20 years of experience designing and leading corporate marketing programs. We talk in this episode about balancing work and family while living in the world of rare disease and chronic illness.

EPISODE HIGHLIGHTS

When you were navigating a diagnosis, how did that affect your family at the time?

I was diagnosed with a rare disease called Pemphigus Vulgaris in 2018 after 30 years of varying symptoms. My disease rarely showed physical symptoms and I wasn't open with my daughter or in-laws who lived just down the street. Around the same time that I began getting blisters and was concerned about hiding them from my daughter, my husband had a heart attack which captured her attention more. Afterwards, I spoke with her about what was going on, explaining my auto-immune disease and the symptoms I was experiencing.

When things are especially challenging because of your disease, how do you push through the days?

I have a glimmer of hope and I know I've been in similar situations before. I am a fighter and have a mentality to keep going. I push myself and I'll continue to push myself with time to rest as needed, but I do tend to overdo it and not pace myself during the times I feel the best.

How do you adjust your life as a result of your circumstances and keep up with your family's activities?

My husband did a lot when my daughter was younger, like going to birthday parties and after-school activities. My good hours are earlier in the day, so we'd go to the park and spend time with her during the earlier hours of the day. We didn't have help at the time, so my husband and I worked together to balance everything. Now that my daughter is a teenager, she's more settled and independent.

What advice do you have for parents listening?

Children observe and understand more than we sometimes think they can, especially if they're a little older and have access to the internet. If they do have the ability to research things on the internet, sit down with them and show them where to find good sources of information about your disease. If your child is able to talk about it, keep communication open with them.

CONNECT WITH LISA

Website

https://pearlywrites.com/

Twitter @LisaWeinberger

https://twitter.com/lisaweinberger

Linkedin @pearlywrites

https://www.linkedin.com/in/pearlywrites/

RESOURCES MENTIONED

It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand

https://www.amazon.com/Its-That-Youre-Not-Understand/dp/1622039076

FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad