Monica

My name is Monica and the first thing I want to tell you is that I am grateful for the love I have in my life. My husband JT saved my life and if it wasn't for him, I wouldn't be here today sharing my story.

 

When I was sixteen I woke up one morning, I had a large golf ball abcess on my scalp. I went to the dermatologist and they had no idea what it was. They referred me to another doctor who diagnosed me dissecting Cellulitis of the scalp ( this is very similar to HS) inflammation of hair follicles. I was so depressed. I was losing my hair.

 

When I first moved in with my boyfriend ( now husband) I started noticing chronic draining and abscess on both sides of my groin ( In the creases) I kept it a secret, And didn't seek  treatment. I was 22 and embarrassed, confused, ashamed. I thought to myself that it's just " skin" it will be fine, but again I was wrong again.

 

Desperately I told my Husband and without any judgment he got me help.

 

Fortunately,a dermatologist  was able to diagnose me immediately with HS..He gave me a sympathetic smile and told me there was no cure. My best option was surgery since I was stage three. 

 

So I proceed with surgery and it was a horrible recovery which took months. I couldn't walk without a walker.

 

Years went by and eventually wounds broke through my scars on my groin, large lesions and wounds plagued my breasts and in the past 6 months it covered my both armpits - leaving me  dependent and disabled. Unable to care for myself without support. 

Again, it was my husband that washed my hair, bathed me, dressed me and loved me unconditionally. 

 

HS is not just a skin disease. It takes a lot of effort to live everyday. HS is disability, pain, embarrassment, social isolation, depression, suicidal risk , panic attacks, and anxiety.

 

I no longer fear. I embrace my bleeding wounds and scars because of love I can.

 

I share my story without fear to many now. So that there is awareness and advocacy. I share my story with you today for the same reason. I am still trying to survive this misunderstood disease. I hope to be a survivor one day.

 

I start Humira in OCT 2019

 

Thank you JT for loving me.