Hello, my name is Adria and I’m a 38 year old woman with HS Disease.
This is my story
I was 8 when my symptoms started, and it took another 10 years to receive my HS Diagnosis from a Primary care physician. Currently, I’m a registered nurse and have worked doing bedside care for 11 years before obtaining a position in information systems.
I switched jobs partially because of HS, and partially because my youngest son was constantly getting very ill and I had undiagnosed postpartum depression and unpredictable flares that made it painful to walk. My position in a same day surgery center / GI suite was very physical. I would get so embarrassed because sometimes there would be drainage on my scrubs when my dressing would fall out from my pant leg or my shirt (unbeknownst to me until someone would say “excuse me, you have something on your shirt or pants”). After several call outs and exhausting my FMLA, I ended up being placed on a 6 week leave of absence by a therapist.
During that time I underwent intensive outpatient therapy, and was prescribed an antidepressant. As I learned better ways to cope with depression and anxiety, I decided to beef up my resume and pray for a breakthrough. When the opportunity presented itself, I landed a new position! I ended up taking quite a pay cut, but I’m hoping I can grow in my new skill set and advance in this new area of nursing for me.
As a systems analyst, I am responsible for the design, testing, support, and training of software applications used to maintain electronic medical records. I work with physicians, pharmacists, and clinic managers to assess the needs to improve upon the applications in which they use for medical documentation and billing. Although I primarily work in an office environment at a desk, I often travel to several different areas within the hospital or drive off site to ambulatory clinics for meetings and/or workgroups. When we acquire new practices, everyone on my team is involved and required to be on site to give elbow support to the providers and staff, often times for approximately 10 hours a day, 5 days a week for anywhere from 2-8 weeks. Inevitably, I flare during these periods and it’s very difficult to maintain a professional and positive attitude when in excruciating pain and experiencing drainage.
But, I look at our patients and remind myself daily that I am working to improve their lives or the quality of whatever life left for those with a terminal illness.
I am required to be on call for 7 days every 6-8 weeks. It is stressful because I am still learning how to navigate the system and troubleshoot issues, all while trying to keep up with the demand of the projects I’ve been assigned to complete. For me, stress = flares. Thankfully most of the time, I do not have to physically report to work for calls received outside of normal business hours. Also, I can telecommute one day a week and my teammates are pretty supportive.
The pain from HS starts as deep pressure or an irritating itch, then works its way up to a deep, debilitating, tiresome throb that can become a sharp pain with one wrong move from exposed tissue. I have experienced several other challenges dealing with HS surrounding intimacy and maintaining relationships. Friends and family don’t always understand how exhausting this condition can be. I end up canceling a lot of plans. I have chronic depression and anxiety as well. Many times, I’m afraid to go out and enjoy myself because I know I’ll pay later.
I’m always on edge awaiting the next bad flare.
Management of my HS involves warm compresses, antibacterial soap, topical and oral CBD oil, and THC when I’m having severe pain. I use gauze dressings when I’m having drainage and sometimes lactation pads when I have a flare under my breasts.
I’ve been on probably any antibiotic for skin infection known to modern medicine: cephalosporins, tetracyclines, fluoroquinolones, etc… My current antibiotic regimen is minocycline 100 mg twice daily for 10 days, it works pretty well. I hate the side effects, so I reserve it for flares that cause fever and extreme exhaustion. I have tried so many different therapies!
Right after high school, after having my oldest child, I was prescribed a long term antibiotic – Adoxa (doxycycline), clindamycin lotion, warm Domeboro solution soaks, and dial soap. When that combination didn’t work and after several I&D procedures, the university dermatologists I was seeing in college prescribed Accutane and birth control. Treatment was withdrawn after almost completing the regimen due to side effects and the HS being minimally responsive.
Back to antibiotics I went; this time around we tried adding Hibiclens wash, again with minimal results. Several years later, I found a dermatologist at Hopkins who specializes in HS! She prescribed laser therapy and had me continue using Hibiclens soap. I also changed my diet and started exercising and lost 30 lbs! After completing the laser treatment, I thought I had a handle on the disease until I got pregnant. Surprisingly, the HS went into remission during my pregnancy and the greater part of the time I breastfed. Unfortunately as my hormones began to return to baseline, the HS came back with a vengeance.
My PCP prescribed minocycline (and refused to prescribe anything for pain, but advised me to replace my ibuprofen habit with acetaminophen – more on that later). That calmed things until I could get in with my dermatologist. Currently, I’m taking Spironolactone 200 mg daily, a low dose birth control pill, and minocycline as needed for bad flares. I was very afraid to try the pill again, I knew it could potentially make me flare badly or things could go the other way. I’ve obtained my medical marijuana card and get good pain relief from certain strains. I’m eating better and am starting to exercise more; hopefully I’ll get my groove back soon! I can’t say I see a great deal of improvement yet, but I’ll give it some time.
There are 3 stages involved with HS, and I believe I’m in stage 2. If I could grant a person newly diagnosed with HS a wish for their future, it would be to be cured from this disease. My life would be very different I think if I did not have HS. I’d be more financially stable and have more freedom to explore and travel. I’d also be able to spend more quality time with my children who are aged 20 and 3.