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carmen92

Hidradenitis Suppurativa

Life!


My EXPERIENCE with H.S! Essay

Mar 31 2011
 

           Being diagnosed with Hidradenitis Suppurativa has not been easy. Having your life go from simple and doctor free to monthly minorsurgeries can really put a damper on your self-esteem and lifestyle. Hiding behind your clothing at all times may not seem great but that's what I have been used to my whole life.

            Growing up with a pool gave me the drive to swim all the time, day after day I would throw on my swim suit and beg my mom to let me swim in our above ground pool. Until one day the simple task of putting on my swim suit began to be the beginning of a life full of struggle. When I got up that day from my daily nap I noticed a striking pain coming from my inner thigh, every time my one piece swim suit would push against it the pain got worse. Being seven years old I instantly yelled my mom's name, and told her my issue. Later that day, I found myself sitting in the doctor's office telling him about my pain. He responded,"Oh its nothing but a staph infection, I will give you some medicine to clear it up in no time".

            A few months went by and the pain got worse, but this time I noticed I was starting to develop bumps on top of my skin. Another trip to the doctor was in order, but this time his response towards it was completely different.  He immediately took a long look and said," What you have my dear are boils that were caused by a bacterial infection". The doctor prescribed me some special soap and ordered me to wash with it twice a day. After two years, the so-called "boils" were still visible but beginning to open up into deep wounds, leaving severe scarring on my inner thighs. By the age of ten my parents were divorced and I was living with my dad. You can only imagine how difficult it was for a pre-teen girl to be living with just her father. I was at the age where I was embarrassed to tell daddy anything that had to do with my body or skin, so I just dealt with my boils my way. Every time I got one I would soak in a hot bath and cut it open with a knife to drain the puss and blood. After I was through draining I would put bandages on top and hold in the extreme pain until my dad left for work. Sometimes, I would hide in the bushes until my dad left so I could stay home from school because the pain was so severe that I could hardly walk.

            It finally got to the point where I had no choice but to tell my father at the age of thirteen about what I was going through. The next day me and my dad were off to the dermatologist clinic in North Dallas where I finally met a doctor who knew what he was talking about. The doctor took a look at my situation and shook his head, and said ,"You have Hidradenitis Suppurativa a very rare extremely painful skin disease, and the bumps are not boils they are abscesses". My dad and I looked at each other full of surprise and shock. The doctor then told me how the disease was incurable, but he still managed to prescribe me 3 types of medicines for pain, and scarring.

            Senior year I had my heart set on the United States Army! Before I swore in I had to get a physical, For most girls in there it was no huge deal to just take off their clothes and do jumps and get viewed by the MEPS Doctors. But I was DREADING IT! More because my recruiter told me NOT to put my disease on paper, so the doctors were blind to my issue. I walked in and got past the look and ask part of the physical, where the Doctor said "do you have any scars?" No... "Any serious matters I should know about?" umm noo... Mind you on that part I had Shorts and a Shirt on. But as soon as they told me to strip down fully. THERE THEY WERE all my Scars! The doctor started to whisper to the nurse. Then next thing I knew, they did a medical history check on me. They let me sware in as long as my doctor had the "OK she is fine to be a soldier". But a week before going to boot camp they called and said I had to wait a year when Im off my meds and H.S has improved. Which was aggravating so I just said NOPE Im staying. One great thing I got out of the experience was my husband. I ended up meeting him at meps a few days later, I had a counseling appointment just as he did. I told him I was there because I had a cat scratch on my wrist. lol I lied! I was there for H.S! I lied because I was embarrassed I guess, not like I thought Id ever see him again.            

                 Now at nineteen I am married to that same guy that I lied to for no reason at all because he didnt care about it! I have been through over 15 minor surgeries, 6 different creams and my own soap. I have scarring that will remain on my body unless I choose to get a very expensive surgery to get rid of the scars. But honestly it seems pointless, this disease will never go away unless a cure is found, so why get the surgery and waste money to fix something that will continuously re-appear. My Self-esteem has died down a lot since I was diagnosed, but I guess I'm finally ready to open up about this, and tell the world! H.S has not only changed me but it has become me.



Previous diary posts by carmen92:
Comments (2)Add Comment
written by CanFizzle, March 31, 2011
Wow Carmen. This essay is very touching, inspirational and emotional to me. I feel that I have had the same life as you, the embarrassment of hiding from your family and having doctor after doctor tell you to use this antibiotic or try this cream, soap etc. It was a relief to finally be diagnosed correctly, but also terrifying to discover on your own (I was only told what the name of my disease was, and had to do my OWN research to find out the depth of it...) that its incurable and forever... very depressing. Anyway, I love that you are incorporating your disease & awareness of HS, into your schoolwork. It's an amazing (and free!) way to get your voice heard! Major props to Carmen! smilies/cheesy.gif
written by carmen92, March 31, 2011
Thanks girl. Yes its been a journey definitely. Honestly the facebook h.s page and this website has really gotten me up and out of the cave. I have gained so much strength from these to sites, hearing many others stories and what they went through. It has answered the question ive been stuck on.. Am i alone? Now i finally see that we all cannot live behind out disease we should embrace it and tell the world our stories, so soon a cure can be found.

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