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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shaneea 04/06/2015

We have all put on here things that HS has prevented us from doing... It's a horrible disease and it affects our lives on a daily basis... but lets do something different in this thread.. Lets all post a little something that we have done positively in the last 6 months to a year.. something that HS didn't stop us from doing.. so we can show each other that life isn't over with HS, just lived differently!

So, I'll start!

I'm closing on a house next week.. I'm so excited, it's a gorgeous house.. real old school charm..

I spent Christmas in Texas with my son.. living on the other side of the states from him, it's hard to get good quality time with him other than a phone call.. He is 4 by the way.

I had a poem of my published in a children's magazine..

See, though we may not have a ton of major accomplishments, life can still be lived and enjoyed even.. I hope that in this thread we can take comfort in each others accomplishments...

Remember.. it's far easier to give up than it is to fight.. I just don't want to see anyone give up on life because of HS.. the last post I read by Loanergirl or loanerwoman was a tad disheartening and I see she deleted her account before I could respond.. so I just want to bring a little positivity for everyone to read when they come here!

emilyg2552 04/06/2015

I think that this is an amazing idea! It's so easy to fall into being so negative because of everything that we have to go through. it's horrible but maybe highlighting some positive aspects of life might help with our PM!
that's amazing ShaneEA! Getting published as well! Go you!
I also bought my very own house last year and have been in there nearly a year now! In the last year I got accepted onto my masters course so now studying music therapy which has been my dream for some time. I have made some amazing friends through my course and get to play with some amazing musicians on a daily basis.
There have been lots of positive things that have happened amongst the hard times... Thank for remembering those ShaneEA!
Would love to hear about everyone else's. ..!

emilyg2552 04/06/2015

I also hope that this doesn't read like a 'look what I can do' post... For some people when you're feeling down actually this might be the last thing you want to read about.
But it doesn't take away the fact that having HS is hard... coping can be too hard sometimes. But it's those times where the pain does subside enough for your attention to be taken somewhere else or those little achievements no matter how small that you have to focus on sometimes. Really would love to hear about other people's positivity!

shaneea 04/06/2015

I don't care how small an achievement you put here.. if you feel successful or achieved in it.. I want to hear about it... sometimes we can't be strong or positive alone, that's why we are here.. to help each other be strong an positive... This thread is to show people, old or new.. that positive things and good things can and will happen in your life no matter the struggle you are having with your HS.. To hell with HS, it's not going to define me or my life.. I refuse to let it.. it's painful.. it's gross, it's hard.. but it's my life and I'm going to choose to live it, there are days I don't want to get out of bed.. lots of them.. but I do.. there are times at work I go into the bathroom and try not to cry.. plenty... but stop me it will not.

chronic99 04/08/2015

Thanks, Shane... That's the spirit! :-)

There IS a lot that HS has NOT taken away from me. :-)

chronic99 04/08/2015

Something I'm really proud of that I managed to do in spite of HS is take off 45 pounds a couple of years ago. Only about 5 or 10 have grown back, probably because I'm trying harder lately not to irritate the HS with excercise, but I did manage to do the impossible and walk off that much without working up a lot of sweat. Mostly hovering within realistic reach of my ideal weight now.

My wife and I have done most of the wooded trails in driving distance in the last several years, they're mostly shady so I don't overheat and most of them are so beautiful that they really make us want to get out there and make use of them. There's also one very close by in the park that I should be getting more use out of.

I don't know if I've done much else that would sound like an accomplishment to anyone else, but that's the first time in my life
I've been able to lose weight like that. Even if taking it off hasn't really helped with the HS, I'm sure it was a good thing to do anyway.

chronic99 04/08/2015

I meant, "My wife and I have done most of the wooded trails in *reasonable* driving distance"... :-)

shaneea 04/08/2015

It's an achievment.. sometimes just getting out of bed and doing daily choirs can be an achievement when you have a flare up... congrats on the weight loss! Maybe that will be my next goal to achieve.. I wold like to drop 50 lbs. I really ju st want everyone to understand that life is possible.. as much as we want to give up... as much as we have been forced to give up... happiness and life is still obtainable.

SisterJoyce 04/09/2015

I think that this is an amazing idea. Enjoying life does not have to end take some pain pills and bandages and keep it moving. I have Stage three nasty but I have gone on cruises(snorkling) and this past Christmas went tubbing at ski resort. Ice it up and get going ice reduces swelling.

SisterJoyce 04/11/2015

Today I bandaged up, took some pain pills and took my kids to the movies to see Fast n Furious 7. Very entertaining!

ecochick99 04/24/2015

I have a job I love and a beautiful family. Who could ask for more than that :-) Chins up! Make the most of the good days and hold onto those moments when the days are dark!

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