Acne Inversa · Fighting HS · Hidradenitis Suppurativa · Self Help

A List of Reasons Why Hidradenitis Suppurativa Sucks

DISCLAIMER: I AM NOT A MEDICAL DOCTOR! I AM JUST SHARING MY METHODS WITH OTHERS THAT MIGHT BENEFIT. FOLLOW AT YOUR OWN RISK.

Hidradenitis Suppurativa is a chronic skin condition accompanied by boils, pain and inflammation. I was diagnosed with HS three years ago, but I have been afflicted by the condition since I was 9. Through the years I have had to learn how to handle my flareups and what comes with them. I can tell you that the process hasn’t easy- by any means! Having HS in the severity that I do, trying to adjust to an everyday life can be quite difficult; especially a busy working life. You never know what to expect from this disease and going out in public with a several flareups on your body with their own plans in mind… To be honest Hidradenitis Suppurativa SUCKS and today I am going to tell you specifically how.

Flareups Feel Like Hell

If you ask me what a flareup feels like, the first thing that comes to mind is hell. Straight up, no thinking, it feels like hell. I would rather be in labor for 19 hours again with NO medication than to go through the process of a flareup trying to burst. Some of them have prevented me from using the bathroom properly because putting pressure on them triggers a slight stress response on your bladder (for me, everyone’s body is different). I can best describe the pain as from light pinches to hot pinneedles to someone branding me with an 5 million degree branding iron. The pain meter with me is usually an average of an 8. I wouldn’t wish it on anybody.

When It Drains, It Pours

DRAINING. You would think it would be one and done and then it’s over, right? Nope The second worst part of HS is draining. Especially when they are bigger in size, oh goodness. The draining process for me has lasted up to 4 days, which has often resulted in huge inconviences when I had important places to be such as work and school. The drainage has two ways of making itself present and that’s through staining through your clothes and through smell. There have been times where I had to call off work or leave school because the smell would not go away or the drainage was just too much for my clothes. I am still learning to manage this problem, but I have found that using unscented pads, gauze and bed underpads help with managing the drainage. Deodorizing the smells can be quite a task as well because products with scents tend to be irritants. I have yet to find a scent option but I will be on a quest to do so.

Missing Out

HS has made me miss out on a lot of job opportunities, school, and spending time with my friends and family. It’s hard trying to explain to your boss that you missed work because you have a “boil”. It will just sound like an excuse thus having your boss questioning if he should keep you employed or not. That’s why more awareness needs to be brought to Hidradenitis Suppurativa so in situations like missing work or school can be legitimized. I am so tired of having to explain my situation to those who choose not to recognize or understand.

Ibuprofen Is My Friend… And Enemy

Ibuprofen has gotten me through a lot of pain, sleepless nights and tears . If it weren’t for Ibuprofen I wouldn’t have been able to make it all these years. She’s basically my best friend. Ibuprofen is my go to medication and when my flareups are on the fritz you better believe I’m taking some. I am clinically prescribed 800mg so I’m extremely grateful. Though I’m glad I have a strength that works best for me it can cause dangerous effects to my body; especially at the frequency I have to take it. Love that. I once had a flareup that I just could not deal with and I went through half a bottle of the ibuprofen in a week. You see my pain right? I hate that I can go through ibuprofen that fast. Considering my situation I honestly had no choice. What are some good pain managements?

I Have Hidradenitis Suppurativa, Still Interested?

Explaining to a person you’re interested in that you have HS can be a gamble. Their reaction could go either two ways: right or left. You will encounter those who will look at you funny when you tell them about your condition and they may not want to pursue you any further. And that’s good. Let them be ignorant and shallow. If they don’t care to educate themselves instead of being superficial dingdong then that’s their loss, honey. I had to learn that when I started dating. I would be scared to open up about it to a point I wouldn’t even mention it. I’d just wait until the person saw it on their own and ask what it was. I’m not ashamed of my truth anymore. Don’t let one bad apple spoil the bunch. There’s somebody for everybody out here and you better believe their is someone will to understand what you are going through. Someone who will take the time to educate themself and know the facts, just for you. The biggest thing to do though, is love your damn self. Having HS can sometimes put a damper on your self esteem. Your body can be your worst enemy but you got to learn to love it. As much and you hate what it comes with, it’s apart of you. And once you learn to love it, you won’t care who loves it and who doesn’t. You are more than HS. You are YOU first and foremost and HS is just apart of you.

In Conclusion

Hidradenitis Suppurativa sucks. That’s it. That’s the post.

Acne Inversa · Hidradenitis Suppurativa · Self Help

Simple Tricks That Help With Hidradenitis Suppurativa

 

DISCLAIMER: I AM NOT A MEDICAL DOCTOR! I AM JUST SHARING MY METHODS WITH OTHERS THAT MIGHT BENEFIT. FOLLOW AT YOUR OWN RISK.

greyscale photography of woman wearing long sleeved top
Photo by Kat Jayne on Pexels.com

It’s 3AM and I felt the need to bring this up. I have been living with HS since I was 9 years old but I wasn’t diagnosed until I was 17. My case is severe. It has caused me to miss a lot of things in my life and have influenced a lot of life decisions. If you have Hidradentits Suppurativa then you’ll know the horrors of wearing white clothing out of fear one of your “flare ups” has decided to make themselves known. If your case is as severe as mine then you’ll know that you’d rather give birth than to feel the excruciating, mind numbing pain of an abscess building up with pus. I could go through a bottle of thirty 800MG Ibuprofen just off one flare up alone. I am approaching 21 years of age, and over the years I have found techniques and remedies that work best for me. Hopefully some of the things I mention below can help a fellow HS relative.

First of all, educate yourself.

Hidradenitis Suppurativa (or Acne Inversa) is a chronic, inflammatory skin disease that occurs in 1% to 4% of the population. It affects areas of the skin that rub together the most such as the underarm, under the breast, under the stomach/folds of your stomach and your buttocks. HS has to be diagnosed by a dermatologist first before specific treatment. There are a lot of HS forums and websites out there that provide information on the disease but my favorite is No BS About HS. It is a really informative site with a nice feel. If you put in some contact information, they’ll send you cool items in the mail every other month!

Using Soaps & Deodorant

For me, I have to be very cautious with which soaps and deodorants to use. The wrong ingredients can cause a world of unwanted hurt.  I don’t know about y’all but I love me a nice, skin drying soap that makes my whole body feel like a Popeye’s biscuit. I hate soaps that make my skin feel slick and moisturized because that’s is basically pissing my microbiome off and making it turn against me. The ONLY soap that works for me is Dial; specifically the Gold bar.

Deodorant is a different ballgame. You are highly favored if you’ve never experience deodorant getting into a hair follicle and having to squeeze it out by hand. Who would’ve thought wearing the wrong deodorant can turn your day to good to bad? It got so bad that I stopped wearing deodorant for a whole year. Though, embarrassing I’m not afraid to admit my troubles of dealing with my condition. Wearing regular powder deodorant is a disaster for me so I had to exercise my alternatives. I tried using a baking soda solution (1/2 Teaspoon of baking soda, 1/4 cup of aloe Vera gel, 1/2 cup of witch hazel) and it worked, but I never used it for more than a day. As of today I feel that using aresol deodorant is best for me. I am trying to find a more environment and body friendly antiperspirant, so I might try the baking soda solution for you guys and let you know how it goes!

Moisturizing

Moisturizing my skin without irritating it is a skill I had to learn and I am still learning. I don’t use lotion because it doesn’t do the skin justice and it doesn’t penetrate the skin– only sits on top. I prefer oils such as olive oil and coconut oil when I want to moisturize. The only hard part is keeping the oil from penetrating too deep in where your skin is most vulnerable. Oil, sweat and body dirt makes for a concoction of flare up. I found a way to decrease this from happening a few years ago. After I apply the oil, I just wipe myself down gently with a towel. That way it’s lifting excess oil and leasing my chances of flaring up. I am going to dry and see if dry oils will be a better option for me.

Vinegar Is Your Friend

I cannot express this enough VINEGAR IS YOUR FRIEND! When I have minor boils I wipe them down with distilled white vinegar or apple cider vinegar. I am not even about to pretend like I use the high end vinegars like Bragg. I use regular distilled white vinegar or apple cider vinegar. Vinegar also cleanses your microbiome and balances the pH. Vinegar baths are essential to me. Once a week I run a warm bath and add 2 cups of apple cider vinegar and soak for about 20 minutes. After the soak, I shower as normal feeling reborn! Vinegar is the gold standard to me for health care. Witch hazel is number 2.

Raising Awareness

I have had HS for 12 years now and I am still learning about the disease. I may not be educated in all areas yet but I am open to learning and listening. Hidradentits Suppurativa needs to be brought to attention so more funding can be given for research. Awareness has to be raised somewhere and it starts with the affected. Do your research, know your facts, educate others and raise awareness. If any of you would like to share you HS story and your techniques to deal with it, leave a comment below. If there are any links I can follow regarding HS please leave them!