H.S💜

The journey and struggles of managing life with H.S with sarcasm and humor 💜

For those that don't know, Hidradenitis Suppurativa is a *Chronic* (haha.. people always assume the name is 420 related.. fooled you huh?) debilitating Dermatological- Auto-inflammatory (Sometimes categorized as Autoimmune) potentially systemic disease that makes living life and everyday activities extremely painful. We say "potentially systemic", as it's believed that an overactive immune system aids in inflammation throughout the body, called systemic inflammation. This means your body attacks your hair follicles, resulting in abscesses, chronic inflammation and scarring. (Did you know that means your ENTIRE body with exception of your lips, palms of the hands, soles of the feet?) The most common places to flare are under the arms, the groin, inner thighs, buttocks and under breasts. It flares up or attacks by causing extremely painful lumps, bumps, boil type lesions. Often as you progress with the disease these angry sometimes huge flares(I'm talking from pea sized to baseball size here people, have you ever tried to close your armpit with a baseball inside? I don't recommend it especially when nerves and swelling of the skin are involved!) back to what I was saying- As the disease progresses through the stages (There are 3) you can possibly develop what's known as tunneling, (Think rush hour and the Lincoln Tunnel - You know how it goes under the Hudson River, connecting Weehawken NJ to the west with Midtown Manhattan in New York City to the east.) Yeah.. did you know skin does that too with enough swelling, draining oozing and relocating to attack the newer skin while leaking inwards and outwards.. The last thing I want crawling on me is the Hudson river water but hey.. it's life.. and it's a big part of this life. Though, it's incredibly painful and it makes it incredibly difficult to pinpoint the exact location of the skin issue. Press on the top and it will leak out several different spots. I know, I know.. It sounds incredibly gross and super painful..as someone living with it.. It definitely can be!  Woe is me.. but not really because like any creature of habit, we are adapting and this has led us to the beautiful journey we are on. There is no cure, remission is possible, but often difficult to achieve since so many people have such different triggers. The direct cause is not even known and what works for one may not work for another. At times- the best we can ask for is to make it manageable. 

Some triggers for people include but are definitely not limited to: (Please remember we are not "medical experts" on this disease but some of us have struggled a majority of our lives and this list seems to be the most accurate- also attached is some tossed in dry humor because how else are we supposed to cope) 

  • Food- Dairy, Nightshades, Brewers Yeast, Refined carbs such as Flour or Sugar, Alcohol, Excessive food additives.. we could be here all day just with food alone.. 

 

  • Stress- This is actually a double edged sword. Flareups cause you to stress and stress causes you to flare up. 

 

  • Sweat/Heat- Yummy- salty body fluid just festering all up in the spaces creating friction. You know how your thighs stick together in the summer when you sit or c'mon fellas.. we know how your junk sticks to your leg.. same thing. It provides further irritation and moisture (sweat) coming from the areas that are already prone to breaking out in a flare up. Did I mention most places people flare are in the sweaty, dark creases of our bodies? 

 

  • Razors/Waxing- I feel like this one is self explanatory but hey- Razors and waxing create irritation to the delicate skin that our bodies are already trying desperately to fight daily on their own.. Shaving or waxing can definitely aid in your bodies anger causing a flare.  

 

  • Clothing- Clothing seems like an odd one right? Well similar to how experts claim that weight plays into your disease (this disease does NOT discriminate on who is skinny vs heavy and don't get me started on the weight thing.. weightloss doesn't help and weight gain can add irritation specifically due to friction and no other reason.. I will die on this hill) I do believe it can cause irritation to the already angry site. Tight restrictive, non breathable clothing cause sweating.... sweating and rubbing on an angry area just asks for trouble.. This is just opinions though.. we are not doctors. 

 

  • Genetics- For some, it could stem from a long line of genetics and hereditary issues - H.S being one of them, 

 

  • Hormones- Yes Hormones can definitely cause a flare up! Similar to stress- one triggers the other and its a merry go round of issues. Too high? Here's a flare, too low? Heres a flare.. It's like Goldie Locks.. or Oprah on the Christmas give aways.. everyone gets a flare... 

 

  • Over-Showering/Cleaning- We smell ourselves..no really.. we over smell our selves due to the fact we are constantly self conscious of what our body is going through. We know first hand the foul pungent odor flowing from the gaping wounds left behind, we tend to shower more, we tend to overuse antibacterial products, we slather on medications and skin drying agents. - Wounds heal better when they are moist but clean. Dry healing is actually referred to as cell death. Wound exudate or fluid, actually plays a vital role in the healing process. Let them leak people.. but please DO NOT pick til it pops- it introduces bacteria INTO the gaping hole of wonders. 

 

  • Other- Unknown- Medical mystery. Oh HI there... it's me! 

 

 

What H.S is NOT

  • H.S is NOT contagious
  • H.S is NOT an STI
  • H.S. is NOT about weight
  • H.S is NOT about lack of cleanliness
  • H.S is NOT Curable
  • H.S is NOT about smoking
  • H.S is NOT about laziness
  • H.S. is NOT YOUR FAULT

Most importantly- you are NOT alone! 

 

So now what?!?! 

   If only we had all the answers. What happens to work for one doesn't always help another but there are a few links above for what we personally use here as well as some amazing awareness and advocation websites. However with all things medical and as stated above, we are not cookie cut people and each person is triggered and managed differently.. Either way please know we are always here for you if you want to chat, learn more or just need a place to vent. 

  - All the love and healing vibes- Chronic  

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