About my life.
Hello everyone, I have been a member of DS for almost a year now and this is my first journal entry. I was having a hard time last summer with my HS, going to school full time, and trying to still breastfeed my infant son without exposing him to my nasty wounds. I got on the computer and researched HS support which lead me to this amazing group of people on the Daily Strength website. I joined but have been terribly busy with life and school that this is the first time I have had the time to write about myself on here.
I was having problems with my parents when I was 16 years old (my parents are GREAT people- I was just being a rebellious teen). The stress of my actions sent me into several anxiety attacks. I started get blood and puss filled lesions between my breasts. At the time I weighed 140 pounds and had a size DD bust. My mom took me to the family physician who told me that the lesions were just a heat rash and that I needed to bathe more and try to keep the area dry. I was very active in dance lessons and in my normal exercise routine. Not long after the lesions on my breasts appeared and spread to cover my under-breasts, and sides... lo and behold they started forming under my armpits, then my bikini line, then onto my lower back and upper buttocks. My mom took me to the dermatologist in town and he told me that it was cellulitis and prescribed me antibiotics. As you can imagine, the inflammation went down for a brief time and then got worse. I had to quit my dance classes and I dropped out of high-school when I turned 18 the January of my senior year because I hurt and I was very embarrassed about the sight and smell of my 'unidentified' skin condition. I gained over 60 pounds within a few months of quitting all of my physical activities. My boyfriend of over 2 years wouldn't be intimate with me because I always smelled of infection and I had gained so much weight.
I spent 3 years going to different doctors and trying to get control of my body. I got a job in a clinical laboratory when I was 19 and a lab tech took an active interest in me and cultured one of my axila lesions for me. She then contacted the local wound care specialist and with this doctor I was finally diagnosed with hidradenitis suppurativa. He put me on long-term antibiotics and pain pills. I was so excited to finally have a doctor who knew what I had and how to help me battle the disease. But he left within that same year to go back to school.
I have seen more doctors than I can count, have been on many different antibiotics, and have tried every 'natural' remedy that I could find during research sessions online. Since I have been on several antibiotics for extended periods of time, when my body gets a different infection- antibiotics don't work. I had an ear infection that lasted over three months, have had salivary gland infections, frequent UTIs and others.
I have also been diagnosed with leichen sclerosis- which is a painful genital skin condition where my skin gets so fragile that it just peels right off and my whole genital area is bloody and raw. I break out into rashes on my arms, legs, torso and face that feel like sun burns. I have also been diagnosed with interstitial cystitis- a bladder condition that feels much like a chronic UTI, psoriasis on my hands and feet, eczema on my arms, legs, torso, and PCOS.
My mother is a psychologist and suggested I start seeing someone to help with my anxiety and depression. I started seeing my current psych when I was 18. I have been on antidepressants and anti-anxiety meds to try to help control my HS.
I finished my high school diploma online and decided I wanted to have a career where I would have enough money to cover all of my medical expenses and hopefully get the right treatment to get rid of my HS. So I started the pharmacy program on campus at my local college. I completed three years at the university when I met my now husband. About 16 months after that we got pregnant- unintentionally. I lost the first pregnancy to a miscarriage and I was so upset from losing that baby that we tried again and miscarried again. That is when my OBGYN informed me that I had fibrous tumors in my uterus, endometriosis and that I would only have a small window of opportunity to have a successful pregnancy before my reproductive organs shut down completely. So we decided to get married and try to start a family. After numerous tests and failures, we finally got pregnant and I now have a happy,healthy 18 month old boy. But during the time we were trying to get pregnant my HS got even worse and I dropped out of college to focus on work and my marriage. I started school up again two years ago and am currently a full-time online student studying for a bachelor's as a Medical Technologist with clinical hours everyday that I don't work.
Pregnancy and HS for me were very difficult because I could not take anti-inflammatory medicine or any pain medicine except tylenol. Then afterwards I always felt so dirty when I breastfed my son because of all of the lesions on and around my breasts.
As all HS sufferers know, work is very difficult for me, but I work nights at a hospital lab and cannot call in sick. I have been at my current place of employment for over 7 years and have not missed one single day of work due to my HS. I deal with the pain as best as I can and I bring plenty of spare changes of clothes with me. My HS has reached the final stage in the disease and I have constant building/draining wounds.
I currently see a reconstructive/plastic surgeon, and a family care physician that help me deal with my HS until I can someday try the surgery to improve my quality of life. I have permanent nerve damage in my right arm due to the damage done by the lesions. It is hard to take care of my son when it hurts to move my arm or hand due to the nerve damage.
Most days I can cope fairly well with my HS, but there are some days that I just want to give up. I have had constant building/draining lesions in both of my armpits since before October of last year. My attitude at work and at home has changed, I am no longer the bubbly happy person I used to be. I hide my pain and my discomfort from most people. A few weeks ago the dayshift guy came in and after 20 minutes of trying to joke with me and have fun, he looked at me and asked what my problem was. I apologized and told him that I was just hurting really bad. He gave me a puzzled look and asked why I was hurting.... - this instance opened my eyes to that most people in my life don't know what I go through.
I feel so alone most of the time because no one knows how much I suffer and how much this skin disease affects me. When I first moved out of my mom's house I would call her and cry when the lesions got really bad. I have pretty much stopped talking to everybody about it because I know my family gets tired of hearing about it.
I am sorry this is such a long post and there is still much I have left out. I thank you all on this site for opening up about your personal experiences with HS. On the days that I feel like I can't take it anymore and I am on the verge of doing something I will regret later, I get on this website and it gives me the strength I need to keep going.
I was having problems with my parents when I was 16 years old (my parents are GREAT people- I was just being a rebellious teen). The stress of my actions sent me into several anxiety attacks. I started get blood and puss filled lesions between my breasts. At the time I weighed 140 pounds and had a size DD bust. My mom took me to the family physician who told me that the lesions were just a heat rash and that I needed to bathe more and try to keep the area dry. I was very active in dance lessons and in my normal exercise routine. Not long after the lesions on my breasts appeared and spread to cover my under-breasts, and sides... lo and behold they started forming under my armpits, then my bikini line, then onto my lower back and upper buttocks. My mom took me to the dermatologist in town and he told me that it was cellulitis and prescribed me antibiotics. As you can imagine, the inflammation went down for a brief time and then got worse. I had to quit my dance classes and I dropped out of high-school when I turned 18 the January of my senior year because I hurt and I was very embarrassed about the sight and smell of my 'unidentified' skin condition. I gained over 60 pounds within a few months of quitting all of my physical activities. My boyfriend of over 2 years wouldn't be intimate with me because I always smelled of infection and I had gained so much weight.
I spent 3 years going to different doctors and trying to get control of my body. I got a job in a clinical laboratory when I was 19 and a lab tech took an active interest in me and cultured one of my axila lesions for me. She then contacted the local wound care specialist and with this doctor I was finally diagnosed with hidradenitis suppurativa. He put me on long-term antibiotics and pain pills. I was so excited to finally have a doctor who knew what I had and how to help me battle the disease. But he left within that same year to go back to school.
I have seen more doctors than I can count, have been on many different antibiotics, and have tried every 'natural' remedy that I could find during research sessions online. Since I have been on several antibiotics for extended periods of time, when my body gets a different infection- antibiotics don't work. I had an ear infection that lasted over three months, have had salivary gland infections, frequent UTIs and others.
I have also been diagnosed with leichen sclerosis- which is a painful genital skin condition where my skin gets so fragile that it just peels right off and my whole genital area is bloody and raw. I break out into rashes on my arms, legs, torso and face that feel like sun burns. I have also been diagnosed with interstitial cystitis- a bladder condition that feels much like a chronic UTI, psoriasis on my hands and feet, eczema on my arms, legs, torso, and PCOS.
My mother is a psychologist and suggested I start seeing someone to help with my anxiety and depression. I started seeing my current psych when I was 18. I have been on antidepressants and anti-anxiety meds to try to help control my HS.
I finished my high school diploma online and decided I wanted to have a career where I would have enough money to cover all of my medical expenses and hopefully get the right treatment to get rid of my HS. So I started the pharmacy program on campus at my local college. I completed three years at the university when I met my now husband. About 16 months after that we got pregnant- unintentionally. I lost the first pregnancy to a miscarriage and I was so upset from losing that baby that we tried again and miscarried again. That is when my OBGYN informed me that I had fibrous tumors in my uterus, endometriosis and that I would only have a small window of opportunity to have a successful pregnancy before my reproductive organs shut down completely. So we decided to get married and try to start a family. After numerous tests and failures, we finally got pregnant and I now have a happy,healthy 18 month old boy. But during the time we were trying to get pregnant my HS got even worse and I dropped out of college to focus on work and my marriage. I started school up again two years ago and am currently a full-time online student studying for a bachelor's as a Medical Technologist with clinical hours everyday that I don't work.
Pregnancy and HS for me were very difficult because I could not take anti-inflammatory medicine or any pain medicine except tylenol. Then afterwards I always felt so dirty when I breastfed my son because of all of the lesions on and around my breasts.
As all HS sufferers know, work is very difficult for me, but I work nights at a hospital lab and cannot call in sick. I have been at my current place of employment for over 7 years and have not missed one single day of work due to my HS. I deal with the pain as best as I can and I bring plenty of spare changes of clothes with me. My HS has reached the final stage in the disease and I have constant building/draining wounds.
I currently see a reconstructive/plastic surgeon, and a family care physician that help me deal with my HS until I can someday try the surgery to improve my quality of life. I have permanent nerve damage in my right arm due to the damage done by the lesions. It is hard to take care of my son when it hurts to move my arm or hand due to the nerve damage.
Most days I can cope fairly well with my HS, but there are some days that I just want to give up. I have had constant building/draining lesions in both of my armpits since before October of last year. My attitude at work and at home has changed, I am no longer the bubbly happy person I used to be. I hide my pain and my discomfort from most people. A few weeks ago the dayshift guy came in and after 20 minutes of trying to joke with me and have fun, he looked at me and asked what my problem was. I apologized and told him that I was just hurting really bad. He gave me a puzzled look and asked why I was hurting.... - this instance opened my eyes to that most people in my life don't know what I go through.
I feel so alone most of the time because no one knows how much I suffer and how much this skin disease affects me. When I first moved out of my mom's house I would call her and cry when the lesions got really bad. I have pretty much stopped talking to everybody about it because I know my family gets tired of hearing about it.
I am sorry this is such a long post and there is still much I have left out. I thank you all on this site for opening up about your personal experiences with HS. On the days that I feel like I can't take it anymore and I am on the verge of doing something I will regret later, I get on this website and it gives me the strength I need to keep going.
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