Sandra Guilbault developed painful lesions under her armpits when she was 16 years old.
At the time, Sandra was ashamed to tell anyone about her symptomsincluding her family.
), a chronic condition that causes lumps to form under the skin.
Taking time for yourself is important when you’re a busy parent managing a chronic condition.
All of this can affect every aspect of a persons lifeincluding their responsibilities as a parent.
Here is her diary.
I typically wake up early to get my kids ready for school, so this is a small luxury.
9:30 a.m.My husband shares the gifts he got for me at breakfast.
My oldest son cant eat dairy so this week we order barbeque, which everyone in the family enjoys.
7:45 p.m.I help my two sons wind down for the night and get ready for bed.
My ritual includes coercing them to hop in the shower, brush their teeth, and pick out pajamas.
8:30 p.m.I tuck the kids into bed and ask them what they are looking forward to tomorrow.
I turn on the white noise machine, turn off the lights, and wish them sweet dreams.
9 p.m.I spend some quality time with my husband, and we watchSeverance.
Our favorite TV shows are a little science fiction-y with a good plot.
We enjoy trying to predict what will happen next and discussing our theories.
I also take an oral medication to helpprevent H.S.
11 p.m.I read a few pages of a book until I feel sleepy.
I find that reading or listening to audiobooks provides a break from focusing on my stress.
6 a.m.I wake up, make my bed, and take my first shower of the day.
My shower routine revolves around H.S.
I use inexpensive antibacterial hand soap to wash areas where I typically get flare-ups.
7:45 a.m.My nine-year-old wakes up.
I make him breakfast and then drive him to school.
8:40 a.m.Its gym time!
I used to be in so much pain due to H.S.
lesions that I couldnt even shift my weight comfortablylet alone get to the gym.
stemmed from a support group my doctor created for people living with the disease.
and not enoughtreatment options.
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.
7 p.m.Its 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.
8:40 a.m.Today Im 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 a.m.I work at a custom frame shop and am on my feet all day.
Sitting for a long time can be uncomfortable if I havea flare-up below the belt.
6 p.m.We play Roses, Thorns, and Buds at dinner again.
10 p.m.I complete my nightly routine after the kids are in bed and I take my daily H.S.
This medication has helped reduce the frequency and severity of my flare-ups.
I went from having a new lesion about three times a month to maybe one spot per month.
6 a.m.This morning I discover a new nodule in the shower.
The pain knocked the wind out of me and made me see stars!
8:30 a.m.I run errands after the kids go to school.
Most importantly I call my dermatologist to make an appointment.
I am so grateful that I have access to a dermatologist who really understands complexskin conditionslike hidradenitis suppurativa.
11 a.m.Today a coworker showed me a video about changing your diet to improve H.S.
I understand that she wants to help, but videos like this only fuel misinformation about H.S.
The video shows graphic photos of the most severe cases of H.S.
I have tremendous empathy for people who have severe H.S.
since my condition was debilitating for many years.
But only showing photos of advanced cases makes it harder for people to recognize symptoms in thebeginning stages.
7 p.m.I go on a walk after dinner, and my oldest son joins me.
I confirm to ask about his day, how hes feeling, and how his friends are doing.
When I got older, I learned thathidradenitis suppurativa may be triggered by genetics.
6 a.m.I wake up and shower, hoping that my daily routine will help the new spot heal.
Because so much of my shower routine revolves around H.S.
This helps make showering feel less like work and more something I look forward to.
8:40 a.m.Its leg day again!
Strength training helps me feel like Im working with my body and not fighting against it.
9 p.m.Tonight, my husband offers to give me a massage.
After 20 years together, I know this usually leads to intimacy.
I let my husband know Im not up for it by saying, Im in pain today.
My husband is supportive and has never once been turned off about the appearance of my skin.
6:45 a.m.Its a special day!
I wake up my now 12-year-old (today is his birthday!)
and make him breakfast.
We chat about his upcoming party tonight before he heads off to school.
11 a.m.We are hosting a party for my son, so today is a flurry of activity.
After the gym I run errands to pick up decorations and food.
Then I clean the house, which is hard because of my flare-up.
I limp a bit but power through and make dairy-free ice cream cupcakes, wrap presents, and decorate.
I know that sweat can trigger a flare-up for me.
11:30 p.m.We stay up late because of the slumber party.
I can barely keep my eyes open anymore, so I encourage the boys to turn off the TV.
They fall asleep within minutes, and my husband and I finally head upstairs to sleep too.
8:30 a.m.The kids eat cereal for breakfast as they wait for their parents to pick them up.
12 p.m.I spend most of the day cleaning up after our party.
I am grateful that my condition has improved to the point that I can do things for my family.
4 p.m.I decompress from all the excitement.
I dont pressure myself to be productive and enjoy some time to myself with no deadlines or expectations.
