HS Diary: How One Mom Founds Time for a Balanced Life

When Sandra Guilbault was 16 years old, she began to have uncomfortable lesions under her armpits. Sandra was too embarrassed at the moment to discuss her symptoms with anybody, let alone her family. Sandra sought help from a dermatologist when she was 18 and was identified as having hidradenitis suppurativa (HS), a chronic ailment that results in lumps forming beneath the skin. According to the Mayo Clinic, these lesions typically develop in areas of the body where the skin rubs against itself (such as the armpits, groin area, beneath the breasts, or on the butt). The lumps frequently crack open and spill pus. Tunnels under the skin may occur in severe cases of the disease. Every area of a person’s life—including their parental obligations—can be impacted by all of this. Sandra, a mother of two sons, was asked to capture her life for one week so that we could convey what it’s like to live with hidradenitis suppurativa. This is her journal.

Sandra Guilbault

Work as a consultant for custom frames

Age: 40

Troy, Michigan is the place.

Hidradenitis suppurativa is a medical disorder.

Day 1 (Sunday)

8:30 a.m.

I try to get as much sleep as I can today because it is Mother’s Day. This is a tiny luxury for me as I usually get up early to get my kids ready for school.

9:30 a.m.

At breakfast, my husband gives me the presents he bought for me. I was given a gift card for a massage this year, which is something I’ve always wanted to try but would never buy for myself. I would never have felt at ease going topless in front of a massage therapist who would see my H.S. lesions just a few short years ago.

6 p.m.

We order takeout every Sunday, which is a pleasant treat for the kids and frees me up from cooking. This week, since my oldest son cannot consume dairy, the family ordered BBQ, which everyone in the household enjoyed.

7:45 p.m.

I assist my two sons in preparing for bed and winding down for the evening. I force them to get in the shower, brush their teeth, and choose jammies as part of my ritual.

8:30 p.m.

As I snuggle the kids into bed, I inquire about their plans for the following day. I switch on the white noise machine, turn out the lights, and wish them a peaceful night’s sleep.

9 p.m.

We watch Severance together as I spend time with my husband. Our top television programs have a solid plot and a hint of science fiction. We like speculating about what will happen next and talking about our theories.

10 p.m.

I prepare for the following day before I go to sleep so that I won’t have to scramble in the morning to get two kids ready for school. Since I go to the gym in the morning, I choose my workout attire tonight along with outfits for both of my sons.

10:30 p.m.

It’s now my turn to begin my evening skin care routine, which entails applying two different prescription topicals: One aids in the healing of previous abscesses while the other helps prevent new ones from getting worse. To assist avoid H.S. flare-ups, I also take an oral medicine.

11 p.m.

I skim a few pages of a book till I start to nod off. My mind is constantly racing with a list of things I need to do for my family, my job, and my volunteer activities, and I find that stress can cause flare-ups. I discover that taking a break from thinking about my stress by reading or listening to audiobooks.

Day 2 (Monday)

6 a.m.

I get out of bed, prepare my bathroom, and take my morning shower. My shower regimen centers on high school administration. I wash the places where I frequently experience flare-ups using affordable antibacterial hand soap. I then rinse that off with a hand shower attachment and apply a benzoyl peroxide wash to any lesions that are still active. While I wash the rest of my body and my hair and continue the shower, I leave this on.

6:45 a.m.

I prepare breakfast for my oldest kid, assist him in gathering school supplies, and supervise his timely arrival at the bus stop.

7:45 a.m.

My nine-year-old child awakens. After preparing him breakfast, I drive him to school.

8:40 a.m.

Exercise time! Due to H.S. lesions, I used to be in so much pain that I couldn’t even move my weight without discomfort, let alone go to the gym. I perform some deadlifts, leg presses, leg extensions, and standing calf raises today since it’s leg day.

11 a.m.

I currently devote a few hours to volunteering for Hope for H.S., a patient-run charity that I first joined eight years ago. A support group my doctor established for those dealing with the illness gave me hope for H.S. Since I joined the group in 2014, I and the other members have come to the conclusion that there is a lack of treatment alternatives and a lot of inaccurate information concerning H.S. Instead of waiting and hoping that things improve, we made the decision to take action and establish this nonprofit. Knowing that I can assist those who are battling the condition gives me a sense of success and purpose.

5:15 p.m.

Dinner preparation for my family begins. We’re having spaghetti and meatballs with salad tonight.

6 p.m.

We learn about one other’s days by playing the game “Roses, Thorns, and Buds” during supper. We all have a rose, which represents our preferred outcome, a thorn, which represents our least preferred outcome, and a bud, which represents our intention or hope.

7 p.m.

I go for a walk around my neighborhood after dinner because it’s a wonderful evening. My husband and kids usually come with me, but they aren’t here tonight. I take advantage of the time to finish my audiobook.

10 p.m.

I begin my nighttime routine when the kids are in bed.

Day 3 (Tuesday)

6 a.m.

I get out of bed, take a shower, drop the kids off at school, and then I go to the gym.

8:40 a.m.

At the gym today, my upper body is my main priority. Strength training is where I focus most of the time since I actually like it! In addition, several aerobic exercises can aggravate existing conditions.

11 a.m.

I stand all day at my job as a custom frame maker. If I have a flare-up below the belt, prolonged sitting can be painful.

6 p.m.

At supper, we once more play “Roses, Thorns and Buds.” My rose for the day was a pleasant phone call I had with my mother while en route to work.

10 p.m.

After the kids are in bed and I’ve taken my daily H.S. prescription, I finish my evening ritual. My flare-ups are now less frequent and less severe thanks to this medicine. I reduced the number of new lesions I had monthly from three to perhaps one. My pimples no longer frequently erupt, leave scars, or dig a tunnel beneath my skin like they used to.

Day 4 (Wednesday)

6 a.m.

I find a new nodule in the shower this morning. I wash off the soap with my handheld shower head as usual, and I’m startled as the pressure of the water hits the nodule. My breath was taken away by the anguish, which also caused me to see stars!

8:30 a.m.

After the kids leave for school, I run errands. Most importantly, I set an appointment with my dermatologist by calling. I’m very happy I have access to a dermatologist who has a thorough understanding of difficult skin problems like hidradenitis suppurativa.

11 a.m.

A video about altering your diet to improve H.S. was shown to me by a coworker today. Although I appreciate her desire to assist, movies like this just serve to spread false information about H.S. The disturbing images in the video depict the most severe H.S. instances. Since my condition was severely incapacitating for many years, I have a great deal of sympathy for others who suffer from severe H.S. However, just displaying images of severe cases makes it more challenging for individuals to identify early-stage signs.

7 p.m.

After supper, my oldest kid and I go for a walk. I always make sure to enquire about his day, his feelings, and the state of his buddies. Being honest with my children allows them to communicate to me about anything, including any H.S. symptoms they may experience. I discovered as I grew older that hidradenitis suppurativa may have a hereditary component. I learned that other members of my family also have the illness after being honest about my diagnosis.

9 p.m.

My bathtub isn’t very clean, and I want to take a lovely, long Epsom salt bath to try to treat the painful place I found this morning. I merely apply my topical creams and take my daily oral medications because I don’t have the time or energy to clean it.

Day 5 (Thursday)

6 a.m.

I get up and take a shower in the hopes that my regular routine will hasten the healing of the new location. I use a pleasant-smelling body wash on the regions not frequently impacted by HS because a large portion of my shower regimen centers around H.S. care and feels extremely “clinical.” Because of this, taking a shower feels more enjoyable and less like labour.

8:40 a.m.

Leg day is back! I feel like I’m working with my body rather than against it when I do strength training.

9 p.m.

My hubby proposes to massage me tonight. I am aware that this typically results in intimacy after 20 years of dating. I say, “I’m in pain today,” informing my husband that I’m not up for it. In order for your spouse to not take the “rejection” personally, I believe it is crucial to let them know when you are in too much pain to be close to them physically. My hubby is encouraging and has never once expressed disinterest in my skin’s appearance.

Day 6 (Friday)

6:45 a.m.

It’s a noteworthy day! My now 12-year-old is having a birthday today, so I wake him up and make him breakfast. Before he leaves for school, we talk about his forthcoming celebration.

11 a.m.

Today is a busy day because we are holding a party for my son. I do errands to buy supplies and meals after working out in the gym. I then attempt to clean the house, which is challenging given my flare-up. I groggily proceed to bake dairy-free ice cream cupcakes, wrap presents, and decorate despite my discomfort.

5 p.m.

I took some time to shower before my son’s birthday because cleaning the house made me so sweaty. I am aware that perspiration can make my condition worse.

6 p.m.

In a house full of rowdy males, my son enjoys eating all of his favorite meals (sushi and pizza without cheese) and playing games. My son’s first sleepover is at this party, and it reminds me of how awkward I was visiting friends’ houses when I was a teen with an episode. I genuinely hope that if my kids get H.S., they would come to me with their concerns so they can start therapy right away.

11:30 p.m.

Due to the sleep party, we remain up late. I beg the lads to turn off the television since I can hardly stay awake any longer. They nod out quickly, and my husband and I eventually make our way upstairs to rest as well.

Day 7 (Saturday)

8:30 a.m.

As they wait for their parents to pick them up, the children eat cereal for breakfast.

12 p.m.

I spend most of the day cleaning up after our party. Not long ago, I would have needed someone else to reach up overhead and take down the streamers because of my H.S. sores. 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. Between scrolling puppy videos on my phone, I text fun stories about the party to the moms who sent their sons. I don’t pressure myself to be productive and enjoy some time to myself with no deadlines or expectations.

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