How I Parent While Managing a Chronic Illness

11 p.m.I read a few pages of a book until I feel sleepy. I find that stress can trigger flare-ups, and my mind is always racing with a list of things I need to do for my family, for my job, and for my volunteer work. I find that reading or listening to audiobooks provides a break from focusing on my stress.Day 2 (Monday)6 a.m.I wake up, make my bed, and take my first shower of the day. My shower routine revolves around H.S. management. I use inexpensive antibacterial hand soap to wash areas where I typically get flare-ups. Then I use a hand shower attachment to rinse that off and put a benzoyl peroxide wash on any active lesions. I leave this on for the rest of the shower while I wash the rest of my body and hair.6:45 a.m.I make my oldest son breakfast, help him gather school supplies, and make sure that he walks to the bus stop on time.7:45 a.m.My nine-year-old wakes up. I make him breakfast and then drive him to school.8:40 a.m.It’s gym time! I used to be in so much pain due to H.S. lesions that I couldn’t even shift my weight comfortably—let alone get to the gym. Today is leg day, so I do some deadlifts, leg press, leg extensions, and standing calf raises.11 a.m.Today, I volunteer a few hours for Hope for H.S., a patient-led nonprofit that I joined eight years ago. Hope for H.S. stemmed from a support group my doctor created for people living with the disease. I joined in 2014, and I, along with others in the group, realized that there is a lot of misinformation about H.S. and not enough treatment options. Rather than wait and hope that things change, we decided to do what we could to advance the cause and created this nonprofit. I get a sense of accomplishment and purpose knowing that I can help others living with the disease.5:15 p.m.I start making dinner for my family. Tonight, we have spaghetti and meatballs with salad.6 p.m.At dinner, we play a game called “Roses, Thorns, and Buds,” which is how we learn about everyone’s day. We each share a rose, which is our favorite thing that happened, a thorn, or our least favorite thing that happened, and a bud, which is something we plan to do or hope to do.7 p.m.It’s a nice evening, so I take a walk around my neighborhood after dinner. I always invite my husband and kids along, but no one joins me tonight. I use the time to catch up on my audiobook.10 p.m.After the kids go to bed, I start my nightly routine.Day 3 (Tuesday)6 a.m.I wake up, make my bed, shower, get the kids to school, and head to the gym.8:40 a.m.Today I’m focusing on my upper body at the gym. I primarily stick to strength training because I actually enjoy it! Plus, many forms of cardio can cause friction, leading to flares.

11 p.m.
I read a few pages of a book until I feel sleepy. I find that stress can trigger flare-ups, and my mind is always racing with a list of things I need to do for my family, for my job, and for my volunteer work. I find that reading or listening to audiobooks provides a break from focusing on my stress.

Day 2 (Monday)

6 a.m.
I wake up, make my bed, and take my first shower of the day. My shower routine revolves around H.S. management. I use inexpensive antibacterial hand soap to wash areas where I typically get flare-ups. Then I use a hand shower attachment to rinse that off and put a benzoyl peroxide wash on any active lesions. I leave this on for the rest of the shower while I wash the rest of my body and hair.

6:45 a.m.
I make my oldest son breakfast, help him gather school supplies, and make sure that he walks to the bus stop on time.

7:45 a.m.
My nine-year-old wakes up. I make him breakfast and then drive him to school.

8:40 a.m.
It’s gym time! I used to be in so much pain due to H.S. lesions that I couldn’t even shift my weight comfortably—let alone get to the gym. Today is leg day, so I do some deadlifts, leg press, leg extensions, and standing calf raises.

11 a.m.
Today, I volunteer a few hours for Hope for H.S., a patient-led nonprofit that I joined eight years ago. Hope for H.S. stemmed from a support group my doctor created for people living with the disease. I joined in 2014, and I, along with others in the group, realized that there is a lot of misinformation about H.S. and not enough treatment options. Rather than wait and hope that things change, we decided to do what we could to advance the cause and created this nonprofit. I get a sense of accomplishment and purpose knowing that I can help others living with the disease.

5:15 p.m.
I start making dinner for my family. Tonight, we have spaghetti and meatballs with salad.

6 p.m.
At dinner, we play a game called “Roses, Thorns, and Buds,” which is how we learn about everyone’s day. We each share a rose, which is our favorite thing that happened, a thorn, or our least favorite thing that happened, and a bud, which is something we plan to do or hope to do.

7 p.m.
It’s a nice evening, so I take a walk around my neighborhood after dinner. I always invite my husband and kids along, but no one joins me tonight. I use the time to catch up on my audiobook.

10 p.m.
After the kids go to bed, I start my nightly routine.

Day 3 (Tuesday)

6 a.m.
I wake up, make my bed, shower, get the kids to school, and head to the gym.

8:40 a.m.
Today I’m focusing on my upper body at the gym. I primarily stick to strength training because I actually enjoy it! Plus, many forms of cardio can cause friction, leading to flares.

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