The word victim is defined as "a person who has come to feel helpless and passive in the face of misfortune or ill-treatment." - Google Defines
I don't see myself as a victim or anyone with HS. I saw a word used a couple of days ago to describe us. A word that means "a brave or experienced soldier & fighter". That is the word that describes us and that was Warrior, for that reason i have set up this page and invited my fellow warriors to come and share their thoughts, feelings and experiences.
Thanks.
This post is by a wonderfully inspiring lady named Eris, her words resonated with many of us and I just want to say thank you to her for speaking so openly, I don't know her very well but I am very proud to know her at all!!
Hidradenitis Supurativa also know as HS, I have learned so much about you and living with you for most of my life. There is no way to get rid of you, there will be no day in which my body is free of you and your raging effects upon me. You make me sick, literally. My body is riddled with scars, my immune system is killing me, you drive my blood pressure up, and if that isn't enough you leave painful reminders across my body that we are connected. My body isn't enough for you. You lap at the corners of my soul like a horse getting refreshing water at a cool stream. Because of you, I have missed time with my family, time I can not get back. I have slowly pushed away from my friends because I can not keep committmemts. Thank you for that by the way. I used to be so dependable, and now, I can plan nothing as you are always there. I am becoming a hermit. You keep me scared, when are you coming again, how bad will your visit be this time, what reminders will you leave me. My privacy is gone. I am the most private person in the world but there are times I have to speak your name, be poked and proded like a lab rat by medical staff and lovers alike. But that is not enough, you have to be greedy, have to treat more people like this, and each one you do it differently, so that there is no peace. I have tried to get rid of you. God, how I've tried. I have had surgeries to the point my scar tissue does not allow me to sit very long, as well as limiting my mobility even once you have moved on to other areas. I have tried antibiotics, more than 50 people should ever take in their life time, creams and ointments, you name it, because of you, I bought it. Chemo, yup, been there, done that, stronger antibiotics, sign me up. Injection pens, all aboard. Bathing with bleach, showering 3 to 4 times a day, every diet under the sun and from here to the moon. I have tried and tried and still you haunt me. You think it's funny to tear down my self confidence, and gloat when my self worth and pride are bruised. I know one day, someone will find a way to eradicate you, and no one will know what it is like to live in your shadow. One day your name will be erased from the history books. Until that day, FU HS
If you too feel inspired by Eris then please click here to visit her FB page.
(i did receive permission from the person in question to post their work and contact details here before hand)
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I have had HS (undiagnosed until last year) for 23 years..some days you can't tell at all...others days it feels like the world is crashing down on you. I take a Humira pen shot once a week and it helps maintain it some but would love a cure some day! Keep up the great work spreading awareness! Pray for a cure :)
ReplyDeleteI have heard of Humria, i am planning a blog post where i can try different treatments for a period of time and document any changes and i will try and give it a go. Thank you for the nice comments and i will never give up :)
DeleteI have just recently been diagnosed with HS. I too, have been on a regime of antibiotics, creams, wipes and bleach baths. Nothing has really helped me and now I am preparing for my first surgery on September 11th. I am a bit apprehensive about it. I am worried about not only the pain, but I have heard that sometimes this doesn't work. My dermatologist wants me to try Humira, but the only problem with that is, I already have a weakened immune system. I hope we can all work together to kick this HS in the ass.
ReplyDeleteHello, Sasha, I cant speak to Humria because i have never tried it, but i have had two surgeries. Unfortunately, neither worked they did relieve the pain temporarily. But nothing was permanent, on my second surgery they packed the wound, it was very painful. what I've heard the surgeries can be a hit and miss. i wish you all the luck in the world.
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