A Witchypoo with Hidradenitis Suppurativa
What is Hidradenitis Suppurativa? Well first lets make this easy and call it HS most of us that have it cant spell it or pronounce it. So don’t feel bad.
It’s a skin auto inflammatory disorder in which there is no cure. Although not fatal on its own the infections from improper medical care can in fact be deadly. There are 3 stages which are hard to describe without charts and graphs. Stage 2 and 3 involve what we call tunneling. Some refer to it as a Auto Immune disorder, but current research is showing it to be Auto inflammatory.
I want to focus my words about HS more as a person living with it. I am still stage 1 but knocking slowly on stage 2. I set out on a mission to try and stay stage 1 as long as possible.
My personal story is not as dramatic as many peoples.
Things you need to know HS itself is not contagious. It is not from bad hygiene. Yes being over weight doesn’t help as obviously sweat and friction does irate it. But if you watched American Idol this season a very thin 19 year old male had fought HS since early childhood. So no its not always hormone related. Although women often do find some birth control to either help or hinder.
There are no true generalizations about HS, diet helps some people, others not much. Quitting smoking has helped some , others no help or actually made worse.
Yes many with Chron’s disease like myself or diabetes seem to be more prone to HS but many with out HS have no other health issues.
HS is not fully understood
The other things often not known is yes most people with HS can have low sex drives from painful bumps, embarrassment, low self esteem and as it progresses dealing with pain daily. Flare ups can cause fevers and wide spread body pain .
It can tear up a marriage and as a mom make a simple fun bike ride with your child sheer hell.
Please if you have been going through this alone here is a website to look at and has link to support groups I am in many myself and I credit all I have learned from them from still being in Stage 1 and only having one staph infection after too much hiking and not enough big Band-Aids.
Most doctors will tell you 3 medications , no cures just things used to lessen flares.
Humira which I myself read the side effects and even with double Chron’s disease and HS said no, I’m good thanks.
Antibiotics, I did 2 weeks on Doxycycline when I did get my first staph infection . It did help I wont lie. But the problem is eventual antibiotics resistance. There is no cure and your going to be dealing with this life long and if your only in stage 1 when and if you get to stage 3 and antibiotics no longer work you might seriously die of a infection.
So I like so many HS warriors try to only use antibiotics when absolutely needed.
So what the hell do you do ?
I am going to talk to you from Stage 1 perspective but here is what is working for me and my regimen. I have not started working on fading old scars yet. I cant afford it and I am happily single after being assaulted and having my disease thrown in my face by my ex. I am going to be 46 , I have a daughter we love our life.
I have no need to impress anyone. Yes my thighs look like a cheetahs lol I don’t care but I will include some products from the support groups that everyone seems to agree on.
The only thing I am going to skip over that I do is a red and blue light therapy and ultra sonic device I own , I don’t do it consistently enough to honestly recommend yet
I will only include the things I am sure help keep me in stage 1
I am using amazon associate links. I am a single mom on disability and the things are not covered by Medicare
And I do not get rent assistance so that takes up my disability check for the most part and am still waiting on back child support on 2 children. Not a sob story just explaining HS can be pricey and money made through using my amazon links will only be spent on HS supplies.
I do sell some art on line as most of you know I’m a professional spell caster, I don’t make much on either after supplies, I also taught belly dance till HS and Chron’s took over but I will be starting to teach belly dance again for those with medical issues for free on you tube soon.
So no I am not cheating or committing disability fraud. These things are hobbies that keep me sane and alive HS and Chron’s have fairly high suicide rates and being a hardcore fan of Nirvana Soundgarden and Alice in Chains and many Seattle groups and Robin Williams etc, typical Gen Xer I do what I can to fight and stay alive for my children.
I think I spend about 100 a month total on my HS on Amazon alone. That’s not doctor co pays or anything like that so every little bit helps.
Ok be careful guys especially my age with kidneys but when it comes down to it, it is a actually anti inflammatory and a necessity.
Bleach baths/ Bleach Shower Sprays 2 times a week was recommended to me by Urgent Care.
My general doctor is really old and seems to know nothing about HS so I spend a lot of time at my local Urgent Care. They know a lot more. For a bleach bath half a cup to a full tub of water soak 15 mins.
I personally with severe adult adhd can’t sit in a bathtub for 15 mins. So like I do for witchcraft I make shower sprays! A medium sized spray bottle with maybe a tablespoon of bleach. I spray on wait a few minutes and hop in the shower. I try to do this 2 times a week.
Hibiclens This is the real magick potion of HS. You will use this the rest of your life! I use mine daily but its too drying for some so at least 2 to 3 times a week
Vicks vapor rub nightly if possible but not on open bumps or bum or bits oh you will regret that.
For bum and bits Zinc oxide I am a Destin max girl myself but if you really don’t want to explain why you have diaper cream …Here is a adult version
Turmeric paste a proven Anti inflammatory that I have fallen in love with. I go through like 4 tubes a month. Keeps flares to a minimum.
Anti bacterial band aids for when your draining. If I had I had these on hiking trip I might not of gotten staph
Https://amzn.to/2WtdllQAnti bacterial bandages
For serious walking like at Disneyland etc or swimming with a open bump. Band-Aid Hydro Seal they are pricey but magical. Treat your self for your worst flares when you have to still walk or even under arms.
The Magic Band Aid
Cotton no seam shorts for under dresses ect these are nice in lieu of underwer
Girls I am sorry but usually jeans and cute panties are first to go
Im not gonna leave a link as its too complicated with sizes etc
Welcome to laluroe leggings and and cotton shorts lol
Monistat ..summer under boobs those flares can get yeasty put a lil monistat on if itchy
You can also use for thighs in summerWay cheaper then Monistat
I just found a generic going to order myself tonight!
Boob towels love them can stick hot pads under and wrap it up lol
If you are going to work on trying to fade old scars Merderma seems to be the favorite.
Just know yes this disease is depressing but with the right tools. Even if it’s just bleach baths and Hot pads you can still live and enjoy life. Stay strong you’re a HS Warrior!
Update my newest love White Sage Spray for its antibacterial properties in relation to Hidradenitis Suppurativa
Not one bump all week!