25 yrs of suffering

[nh_user_910756]

Hi all 

firstly I like to say I'm sorry for all what you all go through 

ive had HS since I was 13 yrs old 25 yrs of suffering this condition and still suffer I grow between 10 to 31 a wk ,I have over 100 surgeries a yr 64% of my body is damaged 

ive tried so many treatments and sadly never worked 

but I never give up so pls don't you 

the best thing I've had was they removed my skin and let it regrow it self very painful and took around 7 months to heal but never had any grow for 3 years now they are growing back

as its a lot of areas they could not do it all in one so each section was done separate so far under my arms is the only one that lasted that long other areas only a few months 

June last year I was having my stomach removed went in for surgery and woke up from a coma 13 days later I had severe anaphylaxis allergy to ATRICURIUM which is given as a mussel relaxant while in surgery 

yes iv got demons from the ordeal but I can't let that stop me from my goal of being normal wearing clothes that don't have blood on them , waking up in a clean bed with out being smothered in blood , living on pain killers every day , my body looking like a patch work quilt full of dressings 

I'm not a doctor but gone through a lot with HS if u would like to ask me a question I might be able to give you advice about my experiences 

DONT GIVE UP xx 

 

[nh_user_38165]

Hi lisa. I was so sad to read of your experience with this horrible disease, but was inspired by your positive attitude. You've been through so much and yet you're still upbeat, i salute you, i really do. I'm free of an outbreak at the moment, but when the gremlins appear, i can feel myself sliding into a deep depression, as the pain is neverending. Your HS sounds a lot more severe than mine, but in the past it has been gruesome and relentless. 

You might've read in previous posts about cutting out nightshades. I try not to have this group of vegetables in my diet, eg potatoes, tomatoes, aubergines etc. It does seem to work, so ill stick with it. For some reason, i can tolerate  peppers??  I'm 61 and have had this since my teens. I sincerely hope I've not depressed anyone by saying that, but the outbreaks do  appear to get less with age and diet control. 

Kay xx

[nh_user_910756]

Afternoon Kay

Thanks for replying

I'm not letting this beat me I struggle every day

But I have amazing family beside me so I stay strong for them

I did see about foods so i have sent an email to get booked in to find out what foods it might be (hoping it's not chocolate ) lol

Thanks again Kay and I wish u amazing Christmas xx

[nh_user_20468]

Omg how awful for you.  You have it very severely and I think you are incredibly brave to suffer like you do and still have such a possitive attitude.  I salute you Lisa!   Do you take strong ab's on a daily basis too?  Do they help?  

I will pass on some good news - mine got a lot less since I have got older and I am now 61.   I really hope yours do too.   I am not sure if you are in the UK but if you are I hope you are claiming DLA or PIP as you should qualify.  

I think you are amazing - I really do.  Lots of hugs  Bev xx

[nh_user_910756]

Hi Bev

I've heard that the older you get the less they are growing but mine seems to be growing in a lot more places just this yr they are nearly down to my knees on my legs

Yes I live in the uk not far from Portsmouth

I don't claim I work full time been in the same job for nearly 21 yrs as from February

my babies are 17-19 and my partner well wot can I say apart from I will never get any one as amazing as him

I change my tablets every 3 months but never with any difference in my self apart from side affects and OMG I've had some side affects

[nh_user_910756]

Thank you and I wish you a fantastic Christmas Bev

Lisa xx

[nh_user_20468]

Well PIP is a stand alone benefit and you get it if you qualify.  You can get it whether you are working or not.   It might allow you to work reduced hours.   It is not taxed (yet) so it is extra money in you hand.  Bev x

[nh_user_910756]

I'll give it ago that could help with the money I loose from having blood tests twice a wk and going into surgery

We tried getting help last yr when I was recovering from being in the coma had to learn to walk talk ect ect

My partner took off 10 wks with me then had to go back to work still needed help and we could not have a nurse unless we paid £25 an hr

Thanks for that X