My First Time Sharing

Last updated: September 2022

Hello... My name is Alicia and I got my first lump on the back of my neck at the age of 17. I am now 41 yrs old and I am in pain EVERYDAY with permanent ones all over me. I have been through over 20 surgeries...maybe more. I always be sent home with a visiting nurse and I've been on a wound vac twice in my life. Most recent in April till the end of June... Then back in the hospital from another one July 20th smh. I have been to a lot of different doctors over the years and it took maybe until three years ago now to be told it was HS. I've been depressed a lot and felt really low and had moments of not wanting to live anymore. Until I found a way to just deal with it because I have kids that look up to me and will be devastated if I was no longer here. I've missed birthdays... Holidays and more important time with them. Thank God they are good and very understanding kids that really love their momma. I have been told by every doctor that I the worst case they have ever seen. That wasn't good to hear ... I have so many scarings on me I walk funny and can not lift my arms up high. I am so happy to finally see that it's groups out here that I can connect with because I've felt so alone for so long. I thank everyone for being brave enough to share their stories. I pray that one day soon they will find a cure for us all... Because now my 11 yr old is starting to get them!!😞 I'll keep everyone in my prayers... We are definitely warriors!!πŸ’ž

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