Invisible Not Broken - Chronic Illness Podcast Network

Website/Blog, Twitter, & Instagram Handle

Podcast website: www.adultconversationpodcast.com,

Blog: www.adultconversationparenting.com,

FB: https://www.facebook.com/AdultConversationParenting,

Twitter: https://twitter.com/adultconvo_

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

Name *

Brandy Ferner

Disorder Info

What is your disorder? *

Missing parts of my intestines, including my ileocecal valve, chronic kidney stones

At what age did your disorder become a daily issue? *

30

Who were you before your illness became debilitating? *

Carefree, spontaneous, could be out for long amounts of time, loved traveling, not anxious.

What would you do if you were not dealing with your invisible illness? *

LIVE LIKE OTHER PEOPLE. Even just the littlest things like be out all day at the beach without worrying about what my body was going to do and how I would take care of kids amidst and episode, and where was the closest bathroom. I'd just BE in the world without my body's homeostasis being a constant thought. I'd also eat whatever the hell I wanted.

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

The amount of mental gymnastics involved with daily life. How showing up for kids constantly feels nearly impossible when you're not sure that your body will show up for you. The work that it takes to do that - to be strong and keep going and still go out and show up, even when you're terrified, in pain, etc. As a non-mother, I could bow out of anything. But as a mother, I cannot.

What would make living and moving in the world easier for you? *

My own private bathroom and napping room attached to me haha. Honestly, having kids that are old enough to be totally self sufficient. I don't want them to grow up because I know I will miss these days, but I know that when I am not caring for so many people, I will finally have enough energy to sustain my own body.

Do you have any life hacks? *

They are always changing. I will have a good couple of months and think "I have this figured out!" and then a week later I will be in crisis again and have to re-learn everything I learned before. I am honest with my kids when I feel like I cannot do something and why. I don't know if that's a life hack. I have Xanax with me at all times, but I have only taken about two in my life. But just having them with me helps to know I have a safety net if things get really bad - like a panic attack about my digestion. I have a protocol I do for kidney stones - I only go to the ER if I either have a high fever, or the pain is too excruciating. Otherwise, I take some herbal supplements that supposedly break stones, I drink tons of lemon water and I sit in the bathtub and basically have a kidney stone home birth. I had a real life home birth with my son, so I know what I'm doing hahahahaha. I also don't eat any food before taking my daughter to school. Can't trust the digestion in the morning. I only eat when I'm at home for a few hours. I also do everything weeks/months in advance so I can eject myself if I get sick, things like Christmas shopping, back to school shopping, birthday party planning. I never leave anything until the last minute in case I need to hand it off.

What kind of support do you get from family or friends? *

My husband is super supportive. He's had to be the closer on Easter baskets, Thanksgiving dinners (I had E. Coli last year). Although he is healthy as a horse, so he can never truly understand what it feels like to be in survival mode much of the time. I have a mother-in-law near-ish who will come take the kids for me. But really, the support is for the kids, not for me specifically. But still, I feel lucky to have anyone to help.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I have been petite me entire life, and I currently weigh about 98 pounds, so EVERYONE loves to comment on my body - how skinny I am, how I must not eat, what's my secret, how lucky I am. I used to just smile and whatever, but now I say, "Oh, I'm missing parts of my intestines that make it so I can't process fats and nutrients. I'm one flu away from an ER visit. Not as glamorous as it looks." People think it's okay to comment on one's body, especially when you're skinny because they don't see it as shaming, but it's really none of their business.

How has your chronic illness affected your relationships? *

I have a strong marriage, but I can't help but feel like he got swindled a little bit. When we got married, I wasn't this bad. So I imagine my husband married to some fun, healthy woman with all her internal organs, traveling and eating their way around the world. So I can't help but feel some sadness and guilt for that for him, but then I also know that it's brought us closer and made us more humble and understanding of others. In my larger family, I don't like the feeling of being the "broken one." People are always asking, "You feeling better?" and I know they are well-intended, but I also know they want a tidy "yes" answer. But they can't understand that I will never know how I'm doing. It will always be day to day.

Is there anything you are afraid to tell people in your life? *

No. I pretty much tell them everything. Something that I don't want to tell my kids is my fear that if this is how I am at age 42, what am I going to be like at 62? 82? I cannot imagine being an older person with my ailments. My margins are so narrow that if some other organ system starts to degrade, I'm screwed. That scares me and I feel like there's not way I'll make it past 70.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I have felt unseen by doctors, for sure. They mostly just think what great shape I'm in because I'm skinny. Even my GI doc, after my last colonoscopy said something like, "I wish I had your problem, Brandy." She was referring to not me not being able to process fats and therefore they try to eject themselves from my colon.

What is your best coping mechanism? *

HUMOR x100000000% Also, moaning during the pain. I was a childbirth educator for 10 years and taught people pain-coping techniques. I use all of them myself when in pain.

What are you the most concerned about and the most hopeful for in the future? *

Most concerned about not living very long because of how fragile my body feels, or living long but having it continue to feel like I'm surviving each day. Most hopeful for: cryogenic freezing so I can come back in a body with adequate intestines. Bleak, right?

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd love to be able to mention my podcast in some way, but other than that, no.

What is the hardest and/or best lesson your condition has taught you?

It's cured me of perfectionism. You can't do everything just so when you're just getting through the day. I have lowered my standards for life by a lot, and I think that's a good thing overall.

What is the best purchase under $100 that helped your life

One of those microwavable heat sacks.