Unfortunately there is no handbook for Hidradenitis Suppurativa that explains everything. In fact there is still so much we don’t know yet. But with all that we do know, a few certain situations are inevitable. Fear not, I’ve come up with over 90 life hacks to help make life with Hidradenitis Suppurativa more manageable.
So you have Hidradenitis Suppurativa and obviously one of the biggest issues that goes along with it is the random drainage, and yes it can really stink. Here is a list of things I have come up with to help cover some of the problem areas.
HS Hack #1: Plastic covers. Plastic covers over your furniture make it easier to slide on and off, as well as protecting fabrics from unexpected drainage. If Hidradenitis Suppurativa rears its ugly head and any drainage should happen to get on your furniture, just wipe clean.
HS Hack #2: Breast pads. I’m talking about the little cotton pads that breastfeeding women use on the inside of their bras. Those little guys are perfect for Hidradenitis Suppurativa sites like the breast or armpit area.
HS Hack #3: Maxi-pads. I understand why some of you might be making a silly face when reading this, but to me it’s a no brainer. Menstrual pads are made to specifically absorb large amounts of fluids and come with an adhesive backing. And as if it couldn’t get any better – it does! Some are even odor resistant or have odor fighting agents embedded in the fibers! It’s like they had us in mind.
HS Hack #4: Arm-pit pads. Yes they are real. They are made to absorb sweat-but they are custom shaped to fit in the armpit. Some come with adhesive pads, others are held in place by a special band which are perfect for holding up pads for armpit flares.
HS Hack #5: Bed Pads. These are usually used in hospitals or at home for incontinence, but they are perfect for furniture at home. They can be placed directly under the Hidradenitis Suppurativa site, are absorbent and disposable.
HS Hack #6: Slip maxi briefs. Picture underwear that are specially made with maximum absorbency that can be worn overnight. These guys are wonderful if you have flares on your groin, or buttocks. Again, some are odor resistant, if you’d prefer.
Blood stains are unsightly, and can be embarrassing and costly to get professionally removed. But all the same, Hidradenitis Suppurativa does not care about our fabrics, textiles or fashion sense, let alone our wallets. So in an effort to quell the bloody beast, here are some hacks to send your stains packing.
HS Hack #1: Meat tenderizer. Take 1 cup of cold water and drape your fabric into it. Then sprinkle 1 tablespoon of meat tenderizer onto the stain. Let it sit for up to a day. Massage meat tenderizer onto the stain every few hours. Rinse and wash fabric as you normally would. Believe it or not, meat tenderizers can break down blood with the help of special enzymes. Dish washing soaps usually contain these enzymes as well. Meat tenderizer works well on sturdy fabrics like jeans, but avoid using on delicate fabrics as it can break down proteins and could end in damage. Silk, linen and wool are examples of fabrics which are made of proteins and should not be treated with enzymes.
HS Hack #2: Saliva. Why in the world would you clean blood up with spit? Because the enzymes in saliva that help us digest food also break down the proteins in blood, and it’s those proteins that make blood so difficult to clean. It’s exactly what you think: spit on blood stain, rub in, soak, wash normally. This is best used on smaller stains, for obvious reasons.
HS Hack #3: Baking Soda. Use a baking soda paste rubbed onto a dampened blood stain. Allow it to sit for up to an hour. It can help lift the stain from the fabric. Because baking soda also can whiten, it will help to remove the color or dye portion of the stain as well. To make the paste, mix a 2 to 1 ratio of baking soda and warm water in a small bowl. For every 1 cup of baking soda use 1/2 cup of water. This mixture can be applied to stained clothing before laundering.
HS Hack #4: Toothpaste. Toothpaste is best used on things that can be washed afterwards. If you use this method on carpets, rugs or furniture, the smell of toothpaste can linger on the fabrics. To try: Apply toothpaste, let dry, rub, rinse.
HS Hack #5: Salt. Salt is considered one of the gentler methods of removing blood stains. You can make a thin paste from mixing salt in a small bowl of cold water. Pour a little over the stain and let sit for a few minutes.
HS Hack #6: Cold water. How simple does it get? Instead of washing your blood stained items with warm water (which actually can make the stain set faster), use cold water.
HS Hack #7: Dish washing soaps. Dish washing soaps usually contain the same enzymes as meat tenderizers that target and break down blood and proteins. Need I say more?
Sometimes we aren’t removing those pesky blood stains from plain cotton clothing, but rather a suede couch, mattress, or silk shirts. To help save your fabrics, here are a few hacks to get that blood out.
Mattress hack: Mattresses cannot be put in the wash, so make sure to keep whatever cleaning solution you use to a minimum. Using a paste is a great way to get rid of the blood stain, since you don’t want too much moisture to be absorbed by your mattress. You can use any one of the pastes I’ve mentioned above.
Carpet hack: There are several methods you can use to remove blood stains from a carpet. It is recommended that you use the gentlest method first and then proceed with the stronger methods for stubborn blood stains. Mix 1 tablespoon of dish or laundry detergent with 1 cup of cold water, drizzle the mixture on the blood, let it sit for a minute, and blot. Then mix 1 tablespoon of ammonia with ½ cup water, drizzle, wait, and blot. Finally, rinse with clean cold water. Be sure to first try this method in an inconspicuous location to test for colorfastness.
Hardwood floor hack: Hardwood finishes like wax, urethane, and polyurethane protect the hardwood floor from moisture, wear and most stains. In most cases the blood can be wiped away with a rag and either water or a common household cleaner.
Jean hack: Cold water treatment is an effective way to remove fresh blood stains from jeans, while dried blood stains can be removed by using common household products like salt, ammonia, meat tenderizers and baking soda.
Silk fabric hack: Use only the gentlest tactics like salt, saliva and dish washing soap when trying to remove blood stains from washable silk. Avoid using ammonia or chemical cleaners, which could damage your silk.
Suede hack: Mix soap and water until suds appear. Apply and rub, taking care not to spread the stain. Wipe dry with a clean soft cloth.
Bringing extra clothes are a must if you have Hidradenitis Suppurativa. No one wants to be stuck out and about when the dreaded drainage catastrophe happens without an extra outfit on hand.
HS Hack #1: Pack ahead of time. If you have an outing coming up, set aside a spare outfit (or 3) always keeping extra clothing on hand at all times for emergencies.
HS Hack #2: Think dark. If you’re like me, you harness the power of dark clothes to hide any possible drainage or stains to begin with, but this is often overlooked when we throw some extra clothes in our trunks for later.
HS Hack #3: Comfort matters. Now more than ever, your comfort matters. If you are reaching for your spare clothes due to an unfortunate draining incident, then you no doubt are feeling pain. Consider packing loose fitting, comfortable clothes instead of stylish eye catchers.
With Hidradenitis Suppurativa, mobility issues are bound to happen. Accessibility is all about modifications to your environment to fit you and your needs. With such a diverse scale of comorbidities, this subject comes up often. Here are a few hacks that can help you make your space work for you instead of the other way around.
HS Hack #1: Rest areas. If you battle fatigue then place stools or resting areas in your home. For example place stools in the kitchen. Sitting and cooking or washing up is so much easier!
HS Hack #2: Camping chair. I can’t sit on park benches or picnic table chairs for very long. To avoid an uncomfortable situation, I keep a camping chair in my trunk, that way I don’t have to miss out when we visit a park or pool.
HS Hack #3: Cushion, cushion, cushion. Chair pads and pillows are also a great idea if your Hidradenitis Suppurativa has spread to your bottom or backside or anywhere really. There are lots of different shapes, sizes and uses for body pillows these days-including ones tailor made to fit wheel chairs and walkers.
HS Hack #4: Magnetic button down shirts. They look like the real deal, but close with strong magnets which eliminates difficult to maneuver buttons. Style and comfort-it’s a win win.
HS Hack #5: Dressing sticks and shoe horns. Dressing sticks and shoe horns can help you pull on clothing and shoes independently.
HS Hack #6: Canes and walkers. Canes and walkers can optimize your ability to get around. Some walkers even come with seats which is perfect for fighting fatigue!
HS Hack #7: Reachers. Reachers can help with virtually every task around the house. In addition to reaching, they’re used for cleaning when paper towels or dishcloths are attached to them. Double bonus if you use the shark or dinosaur ones. Kitchen tongs can be used as well. Tongs are useful for picking up different items.
HS Hack #8: Secure rugs. Tape or Velcro your rugs down. Tripping on rugs can lead to falls and injuries, and that’s the last thing you want right? So secure your rugs down, and prevent falls before they happen.
HS Hack #9: Toilet safety rails. Safety rails are adjustable and fit right around the toilets you already have, making them an inexpensive way to adapt your home to your needs.
HS Hack #10: Velcro clothing fasteners. Very much like the magnetic buttons I mentioned before, you can use them in place of pants buttons, or zippers. Just press and impress.
HS Hack #11: Clothing loops. Clothing loops can be used to pull clothes on. Duh! Why didn’t we think of that before? Sewing on clothing loops to the inside of clothes can spare you a lot of struggle and strain.
HS Hack #12: Dexterity kits. Dexterity Kits are available that fit over keys, toothbrushes, utensils, and pens so that the grip is fatter and easy to grab. A low cost option is to these at home by wrapping a small washcloth around the handles of utensils and securing them with a rubber band.
HS Hack #13: Hair ties and rubber bands. Having trouble with metal tabs on soda or canned food? Slip a hair tie or rubber band underneath and pull!
HS Hack #14: Easy open bottles. Your pharmacist will replace difficult to open child-safety lids with easy open ones if you ask. Always keep your medication in a safe place away from children.
HS Hack #15: Pre-cut foods. Is cutting food difficult for you as well? Try buying pre-cut food, or at restaurants you can ask the wait staff to cut up your food before bringing it to the table. Don’t be afraid to ask, trust me, you aren’t the first and won’t be the last.
HS Hack #16: Zipper pulls. Are pulling zippers hard for you too? Key chain rings, ribbons or string, can be attached to the zipper to make it easier to use.
HS Hack #17: Jewelry helpers. Jewelry no longer needs to sit around and collect dust. You can wear your flashiest accessories with these little inexpensive tools. They make it simple to attach or detach jewelry one handed. Awesome!
HS Hack #18: Straws. Bring straws with you to make drinking easier on the go, or use water bottles with straws that don’t require lifting and maneuvering. I carry mine in a toothbrush travel case so they don’t get squished along the way. It makes high pain days so much easier, especially after a surgery.
Self-care is a necessary step to help you recharge physically and emotionally. Do whatever you need to take care of yourself. For a lot of people the idea of self-care may seem selfish, but that isn’t the case. Self care can range from taking naps, relaxing inside in a pair of sweatpants on extra tough days or treating yourself to a cup of tea while watching your favorite T.V show. Here are some hacks to get you loving yourself in no time.
HS Hack #1: Visualization. If you have a difficult time practicing self-care, there is a technique where you imagine yourself as a young child. Take a moment to visualize how you were around 5 years old. How would you take care of yourself? Some people are more inclined to practice self-care if they can view themselves as a child.
HS Hack #2: You day. Take one day of the week to shut down and rest. Allow yourself the whole day off. Sound silly? It shouldn’t, you are worth every bit of it. You can juice, yoga (if you feel like it), detox bath, and for dinner eat super clean.
HS Hack #3: Suffer no more. Practice removing the word suffering from your vocabulary. I know that can be hard-when you are. But saying that over and over again, just to make others understand, can get you stuck in a thinking trap. By taking that simple phrase out of your vocabulary, you can ironically take away some mental and emotional challenges down the road.
HS Hack #4: Be supported. Attend a support group. What is better than connecting with others who are faced with the same challenges as you, and being able to interact with each other and professionals? Not much. Not all support groups are the same, so finding one that fits your needs is important. If you can’t leave your home, there are many online groups offering support for Hidradenitis Suppurativa and Chronic illness. Some groups have phone meetings you can attend from the comfort of your home. You no longer need to feel alone in this struggle.
HS Hack #5: No biggie. Okay so when everything seems to be overwhelming, it’s easy to see small challenges as huge ones. With a simple phrase like “it’s no biggie” you can turn those mountains into mole-hills, as well as turning the situation into a manageable one. This works by switching negative automatic thinking into positive thinking. It’s worked great not only for myself, but for my children as well. By saying this, when I’m faced with a challenge, it keeps me from overreacting to the small and annoying things, and teaches my kids the same. Note: Not all situations are “no biggies” and you need to use your best judgement when discerning which is which. When it comes to medical problems, it is best to ask a professional, instead of disregarding symptoms.
Why would a shower be considered a hack? Because in my experience showers are magical! Okay, so they might not have any specific ‘magic’ but they sure do have powers! Can we say relaxation much? Hot or cold, there are many health benefits to showers. Here are some hacks that can help get you ready to go safely and comfortably.
HS Hack #1: Shower chairs. Shower chairs are literally a lifesaver. On days when you are weak, or are recovering from a surgery, shower chairs can mean the difference between a serious fall or injury and a safe shower.
HS Hack #2: Shower heads. Switching up types of shower heads can also be helpful to make it easier when washing depending on where your problem areas are.
HS Hack #3: Hair washing trays. Hair washing trays allow hair to be easily washed in the sink from a seated position for those in a wheelchair, or if you are trying to avoid getting an IV wet.
HS Hack #4: Long handled body scrubber. A long handled scrubber is great for hard to reach areas when your arms are hurting.
HS Hack #5: Safety bars. Grab bars in the shower, when going up the stairs, wherever! With medications that can cause dizziness, and muscle weakness, it’s a serious safety hazard when you are alone. So why not give yourself a helping hand? Most are inexpensive and require little more than a drill. Note: Be wary of safety bars that stick on, many were not made to support full body weight.
Sometimes staying in the moment can be hard when your entire life is mapped out around future doctor visits, looming surgeries, or even upcoming treatments. The fear of an upcoming flare can keep our minds so far in the future and focused on the what ifs, that it can be hard to stay present-and make yourself available to people in your life. Here are some hacks to keep you from getting swept away in the future.
HS Hack #1: Make your bed. Yeah I said it, and yes you can do it! Why? It’s a small thing that can motivate you for the rest of your day.
HS Hack #2: Get dressed. Dress yourself as if you were having a flare free day, even if you aren’t. This can be such a confidence booster, and a great reminder that you are worth the investment of time and effort. Even if you aren’t going anywhere, get dressed, and be present!
HS Hack #3: Be grateful. When you are in pain around the clock, it’s easy to get lost in the bad things every day. You hurt, damn it! Being grateful helps to focus on the positive aspects of life, and there are a lot. I have a group of friends I text with every day about one thing we are grateful for. Not every day is good, but there’s something good in everyday. These simple things help me stay present, and not get carried away in the ‘what ifs’ and worse case scenarios.
I try to keep things as simple as possible so I don’t overexert myself and use up more energy than I need to. With that said, I still have days where even the most mundane tasks seem way too complex and my muddled brain just cannot compute. Here are a few hacks to help you keep things simple.
HS Hack #1: Medical apps. There are apps that can help track your symptoms, medication, appointments and it even send reminders. Many also have options to get your prescriptions delivered to your door which is nice.
HS Hack #2: Online shopping. Shopping online has been a lifesaver as well. Things I buy regularly, like dog food, vitamins, personal care items, can all be delivered to my front door! For days when I can’t even think about leaving bed, let alone home, it really has been very helpful to have options like this.
HS Hack #3: Kickstands and knobs. Phone and tablet cases that have little kickstands are absolutely awesome for the days my arms just aren’t working, or I can’t get out of bed.
HS Hack #4: Paper or pain. Why not skip the dishes tonight? Use paper products to eliminate the need to wash dishes, and skip the pain as well.
HS Hack #5: Address labels. Getting address labels, seems simple but not having to write out your address every time is pretty nice.
HS Hack #6: Voice to text software. Voice to text works really well and can alleviate a lot of hassle! Voice to text is available on many different platforms making it a great option.
HS Hack #7: Texts. Texting instead of speaking on the phone is also a great way to keep it simple.
HS Hack #8: Curbside pick up. Many grocery stores offer grocery curbside pickup or delivery. Which on my bad days, has been a complete game changer.
HS Hack #9: Wash and fold laundry service. Did you even know it existed? It’s often inexpensive and can be a life changer if laundry is your kryptonite.
HS Hack #10: Obtaining Permanent Absentee Voter status. Want to be involved in community elections but can’t make it to all of the votes? All states will mail an absentee ballot to certain voters who request one. The voter may return the ballot by mail or in person. Some states offer a permanent absentee ballot list: once a voter asks to be added to the list, they will automatically receive an absentee ballot for all future elections. Note: The qualifications vary from state to state, so be sure and check to see what your state’s regulations are.
When you are not feeling well, chopping vegetables and cooking probably is one of the last things you want to do for yourself, let alone your entire family. Here are a few hacks I’ve found helpful.
HS Hack #1: Meal planning. If you are able, set aside some time on a day when you feel well enough to plan your meals.
HS Hack #2: Multi-use ingredients. Use ingredients that can work in several other meals and save them for leftovers.
HS Hack #3: Lots of batch cooking. If you have a few above average days, then consider taking a day or two whipping up things that are healthy and can be put in the freezer.
HS Hack #4: Slow cookers. Slow cookers take all the work out of cooking leaving minimal prep. These are such a great option for high pain days, and the process is so simple that you just set it and forget it.
HS Hack #5: Vegetable slicers. Vegetable slicers decrease risk of injury if you have any trouble at all with coordination or fine motor skills, these are a great option.
HS Hack #6: Freeze them for another day. When I freeze things, I include meals that are bland for my nauseous days, and some comfort meals for my family. Then you can take out something and have multiple meal options with minimal fuss and energy.
HS Hack #7: Pre-chopped foods. Can’t chop? Skip the pain, and buy frozen pre-cut food.
So many medications can cause brain fog, as well as memory issues. If you are caught in a never ending loop of retracing your steps due to forgetting, and losing things, here are a few hacks to help you hop off of that hamster wheel, and get back to your life.
HS Hack #1: Forget me not. Put important items under your keys, or in your shoes the night before to prevent forgetting them when you leave.
HS Hack #2: From last to first. Put items back in the place you first looked for them, not where you ended up finding them. That way you don’t end up running in circles looking for something you set down a second ago.
HS Hack #3: Power of post-it. Put a post-it note on the door with reminders so you see it right before you leave.
HS Hack #4: Ring the alarms. Set an alarm on your phone when you think of something you don’t want to forget. Even if its medication times, or task reminders. I’ve learned over the years that alarm clocks are my foggy brains best friend.
Hack #5: Contactless payment. Auto pay for bills can be such a lifesaver, it takes the work, stress and anxiety right out of paying the bills, by having bills paid straight from your banking account, or credit card.
HS Hack #6: Use pill organizers. No, they aren’t lame, and no, yours doesn’t have to be plain. Nowadays many come in cool new designs, shapes, patterns and sizes. Using pill organizers can come in handy if you are always second guessing if you took the last dose or not.
HS Hack #7: Plan ahead. You may have noticed a theme here, but planning ahead can help make for smoother sailing. When you think of something for later, record a video of yourself explaining your thoughts. That way, you can reference it later when you struggle to think. For example, I plan the next day every night before I go to bed in a notebook. I write down what to wear, what to take for lunch, what kind of schedule I have for work, pack any essential items I may need, etc. It’s become a fun and relaxing thing for me.Note: Of course it’s perfectly fine, if things don’t go as planned. Just modify, and keep going.
Do you live in a home with lots of stairs, or possibly long hallways? Do you experience high pain days? I do, and sometimes it can be challenging to go upstairs just to brush my teeth, or grab a sweater before going out. To avoid all the extra steps, try these things.
HS Hack #1: Bring what you need. Try to bring down what items you may need during the day. It also is a good idea to invest in some items you can keep on the main floor to avoid that extra trip upstairs, such as a spare mouthwash.
HS Hack #2: Basket case. I am a proud basket case, how about you? I use baskets for just about everything including medications, snacks, papers, etc. They’re great for just about everything.
HS Hack #3: Dry shampoo. A dry shampoo might be a good investment if showers are a no go for the day.
HS Hack #4: Makeshift wheelchairs. If you don’t have a mobility device, make one! Office chairs, or anything on wheels can be used. If you have a real mobility device and don’t use it because it’s too much to lug around the house, speak to your doctor. They might be able to make some changes to better suit your needs.
HS Hack #5: Food by the bed. Have food by the bed for those days your body can’t handle getting up.
Saying no seems like a fine art, but learning to say it is important when you are fighting chronic illness around the clock. Not only can letting yourself say no be satisfying, it can be freeing as well. Here are some hacks to help you accomplish just that.
HS Hack #1: Be assertive. Try to be assertive, courteous, and firm. Often times we feel obligated to say yes for whatever reason. So asserting yourself in a courteous yet firm manner, will come in handy when you feel compelled to agree.
HS Hack #2: Lose the guilt. Chances are if you are considering saying no, you probably will feel some sort of guilt about turning down the offer. Don’t! Ditch that guilt. It’s an act of self love to know your limits and respect them. Your loved ones will not hold it against you if there’s dust on the shelf, and your coworkers will understand if you don’t go to next week’s potluck party.
HS Hack #3: Propose an alternative. If today is a flare day, plan around that. Whether it’s rescheduling for a new date, or modifying plans so you can better participate, try to come up with a good alternative so you aren’t missing out on an opportunity.
This is important! I know I talk about it all the time, But I can’t stress this enough! Don’t be afraid to ask for help from your support system. Asking for help can sometimes be so hard to do, but it’s worth it. If asking for help isn’t your strong suit, here are some hacks to getting some help.
HS Hack #1: Be confident. Obviously you need help, or you wouldn’t even be considering asking. So be confident. Yes you need help, yes you can admit it, and yes you are willing to talk about why.
HS Hack #2: Accept help. This one is important. I know it’s hard to accept help (especially if we didn’t ask for it, if it isn’t the style of help we expected, or if we are afraid of change and uncomfortable.) But once its offered, don’t feel like your are a burden or anything of the sort. Chances are your supporters are volunteering to help because they genuinely care about you.
HS Hack #3: Lighten the load. If the amount of help you need seems like too much for someone to want to do willingly, then offer to split the chores. For example, I can unload the dishwasher but reaching to put dishes in cabinets above my head makes my arms bleed. So I offer to unload dishes if my family will help with putting them away. Chances are the people in your support system won’t mind helping you. It is a small task, and when we divide by ability, it makes the job easier for everyone.
HS Hack#4: Be gracious.Sometimes it’s easy to forget that the people helping us, are stopping their days, and putting our needs first. We appreciate the help, so why not show them that? Accept the help graciously. Not only will it make them feel appreciated, but will make the experience a positive one.
HS Hack #5: Hiring a maid. I know that hiring a maid may not be financially possible for everyone, but if it is an option for you, it could be a great way to save your energy for other activities.
Putting together an emergency room bag just in case things get serious, is a wonderful idea as well. Hidradenitis Suppurativa can be so unpredictable, but one thing that is sure emergency rooms happen. So to keep you prepared, here are some hacks to keep you ready.
HS Hack #1: Think ahead. Don’t be caught running around last minute, pack an emergency bag ahead of time.
HS Hack #2: Pack essentials. Include list of medications, allergies, diagnosis and description, Doctors/Specialists names and numbers, insurance cards and numbers, photo id, legal documents (living will, DNR, etc.), glasses and hearing aids if needed, emergency contacts, pen/paper, and comfort items.
HS Hack #3: Take care of your caretaker. Caretakers are going to be needing some stuff as well, in the event of an emergency. Try to include an outfit, snacks, and reading material.
Remember that life hacks are all about modifying the way you do your activities to better fit your specific needs. Although there is no handbook for life with HS, these life hacks helped me overcome the many challenges of my chronic illness in day to day life. If you have any HS hacks that have helped you manage living with your HS, we would love to hear from you.