Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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What living with HS means to me.

IamDavid
IamDavid
Someone asked me to give a short description of what living with HS is like. Here was my reply: Imagine that every morning you are awakened by a guy named HELL SENT (I call him HS for short). He places burning hot rocks of various sizes on several places of my body where they will cause the most pain. In my arm pits, groin area, anus and just for kicks he may put a few where I least expect him to. HS then pours me the one and only glass of water that I will get that day. The only time a get relief from this intense burning pain is when I pour some of my precious water on the rocks to cool them down a bit. The kicker is the more I move my body the hotter and larger the rocks become. I have too be careful not to run out of water!. For if I do, Mr. HS will surely greet me tomorrow morning with either more rocks, bigger rocks, hotter rocks or all three. He may also get a smaller glass of water too.

I got some good comments on FaceBook for this analogy so I thought I would share it here.
What does living with HS mean to you?
tangerinebear
tangerinebear
Good analogy David, For me, taking care of my daughter with HS every day is a challenge. We pray for good days and deal with the bad. We also pray for the will to stay out of the offending foods every day! I think to myself some day that oh wouldn't it be great if she could have an icecream or a cupcake or anything that normal kids eat! BUT we dont go there....HS has brought my daughter to a place where we never know how things are going to be each and every day.
We also pray that we have acceptance of what this is and go forward each day knowing that foods do trigger this crap so we stay strong, bite the bullet and eat what is necessary to stay well. HS is a BITCH!
BUT without diet control of this thing my daughter would be suffering terribly...I am thankful for all that gfpaperdoll has taught me about diet........ but living with HS every day is a new way of life......... I think acceptance is the key....We accept, we learn, we go forward and we praise God for each and every day that the rocks dont form! Before I was always depressed. Tangerinebear xo p.s. life is too short to lament our illnesses..... We must find joy in the simplest things and
WE DO! HS is part of what my daughter has but we try not to dwell on it every day!
IamDavid
IamDavid
My HS is not like my analogy any longer but was for many years. You see a women from another HS support group had asked the group to give her a short paragraph or two on Living with HS in case she was interviewed. I didn't read the posts leading up to that one so I'm not sure why she might be interviewed. I thought maybe she was attending a convention, possibly a tv or radio spot, or news article I didn't know for sure. So I wrote it in such a way that someone without knowledge of what HS could gain an understand on just how painful and debilitating HS can be for people.