I'm still around but am really fighting to stay in the ole world....

First off,I want to say WTG to everyone who has had the surgrey and I pray for you all every night.I apologize for not being active in our little group here as I've been going through some pretty heavy stuff my life.

I have a condition called hidradenitis suppurativa. I've suffered with this since about puberty but only recently found out what my condition was called.....all these years and just now know there is a name to it.I will try to explain it the best I can...There is no known cause or cure for this.It's extremely painful,debilitating and leaves your skin disfigured.This disease has gotten worse for me and I've went into a near last stage of it...I'm in pain,embaressed,and I feel totally alone...I'm fighting with depression now and have come to the point to where I just want to give up.

I will post a few links to pictures so you can get a better idea of this thing...BEWARE:Images are very graphic so view at own risk.

www.riversideonline.com/source/images/image_popup/ans7_hidra denitis.jpg

img513.imageshack.us/img513/2172/21c1qb0.png

Note:the pics are not me,the first underarm pic does look similar to my underarm and the second pic of the genital/butt area,fortunatly mine has not gotten that bad yet,in that area.It is a progressive thing and gets worse over time...

I'm still learning about it myself but I know there are few options for me as nothing has seemed to help.I want so badly to get my bypass done but right now I'm stuck dealing with this and can't find any specialist in Arkansas that deals with HS.I'm not going to give up on my goal of having the WLS but it has been temp put on hold,beyond my control....and I was so darn excited that I was getting closer to getting it done.Now my days consist of sitting alone in my room,in pain,staring at the four walls.

I would like to ask you all to sign the HS petition as they are trying to get it to the right people so that someday they may find a cure,every signature helps and it would mean so much to me.I do understand if you chose not to mess with it,that's ok too.I just want to post the link here also.It also has a bit about HS on the page too.If you have the time,Please sign it guys ..and I really hope you all are doing well and keeping the faith.

www.petitiononline.com/acure4hs/petition.html


With Love,
Crystal...

I don't really have any words that will make this better, but know that you are in my thought and prayers. I hope that you are able to find a specialist to help you. Best of luck in your journey my friend.

Bless your heart, I'm so sorry you have to suffer with that -- it does look awfully painful. 
((((Hugs)))) and many prayers for you that they do find a cure, and soon.

Hi Crystal,

I hope you know we're here for you no matter what. Please remember if you need someone, there's bound to be a friendly avitar here to help you keep your chin up.

My prayers are with you and all the others that suffer from this.

Crystal

I have actually heard of this before and had seen pictures of it previously.  It looks so horribly painful and I really feel for you. 

I have no words that can make your condition any easier to bear.  All I can say is that you should continue to fight for better health in all aspects of your life.  I hope that your WLS becomes a reality for you soon. 

Wen

God bless you.............................

AB

I am so sorry.  I signed the petition....I hope it makes a difference....
God bless....

I just want to say Thank you all for sharing your kind words...You all have beautiful souls and may God Bless each and every one of you.

My parents  and  my Guy have been so supportive with this....My Dad and I had a serious talk about all of what is happening to me because I was in such a dark lonely place.I had just gotten out of the hospital for yet another round of strong antibiotics(which just made me worse and almost killed me)I was so scared.......He told me that I have two choices

1.To just give up,sit in my room alone and shut the world out

2.Take his hand and FIGHT this thing....He said if I will fight it with him that we will overcome this and if he had to take me to the end of the earth to find treatment then he would.....

I broke down,took his hand,and promised to Fight this......That's been a bit ago and I am finding it hard to keep that promise but I know I have to dig deep and keep that promise to him....as long as my family are not ready to give up then I can't let them down or myself.I'm 26 and I long to be healthy,be married,and be a Mother some day.I have so much Love to give and I ask God,Why?Why was I born?Just to go through pain and tears 24/7.......But,My Dad says Not to question God.He has a very special plan for me and I know he is right,I shouldn't question God but it's hard not to when I'm in so much pain and sick all...the...time

Because of all of these medical issues,I don't have many friends.I do have one that's great but she's related too hehe..I do feel sad that I don't have girlfriends but with all of these issues,I almost feel as if someone were my friend that they would be jipped in some way because right now I am unable to go out and do things with them and spend most my time at home.....When I do go out,it's to the Doctors or Grocery shopping about once a month.

I've had comments from extended family that were rude and hurtful....some are....

"it's probably just acne,she needs to wash her face more"
"She needs to lose weight,then she wouldn't have this problem"
"Has she tried bathing more?Poor Hygiene can cause this"
"Episom salt will heal them right up,she has to do something for herself"
"She never leaves the house,maybe she should try getting some sun!"

I think they mean well,but they have no idea....This is obviously not just acne,I've never had a problem with that.....Being overweight does NOT cause HS,They do not know what causes it and there is no known cure for it either.....Losing weight could help with the friction issue but will not cure this disease.HS is also NOT cause by poor Hygiene,It has nothing to do with one having HS ,but for the record,I shower with antibacterial Soap each and every day!Ep.Salt?Yea right...Try pouring salt into a gaping wound and that would be what it's like for me if I were to use that on myself.I do get out when I can but one with Hidradenitis Suppurativa is NOT to be out in the heat...It will make the areas ALOT worse and can cause new ones to appear.Stress can also cause a terrible break out of people with HS...

Sorry for such a winded post y'all...I just want to get everyone up to date here as I'm limited on who I can talk to about this.Later this morning I will have to slice open a new lesion that is swelled up as big as a golf ball now on my right underarm...I'll have to cut it open myself and try to get the nasty poison to drain out of my body.Then the fever will break and I'll feel much better until another one comes up...then it's these steps all over again.There never is a time where I don't have an area that needs attention.The areas I currently have the HS at are underarms,breasts,private area,thighs,butt area and have just started getting it bad on the lower belly area.The stuff tunnels from one area to another so it's a never ending battle..The doctor gave me a script for ladocaine?The numbing stuff,and I injected it directly into the area before I open it up,but I'm sad to say that it had no effect on me and doesn't numb the area up...I have no idea why but it sure doesn't.

I'll be checking in later on,Thanks so much for listening and more important...For Caring!I want to thank everyone who has signed/will be signing that HS petition too...Every signature can help!

With Love,
Crystal

Crystal,
I am really sorry to hear about your condition. I agree with your father. You can't give up you have to fight. This life doesn't give us answers as to why bad things happen to good people. But God knows what you are going thru and he is there for you and your father seems like a strong wonderful man. Just keep hanigng on to him and let him help you all that he can.
Take care.