A bunch of years ago, I shared with you some details about a chronic, recurrent skin condition that I have been battling for about 10 years now.
It’s called Hidradenitis Suppurativa (HS for short).
It’s a non-curable inflammatory condition that affects certain, mostly discreet 🫣 areas of the body and not visible to the naked eye. When flare-ups present themselves, they can last for several days at a time. The flare-ups are excruciating and painful and have left me with a lot of scarring over the years.
I’ve seen many specialists about it. Each one of them put me on high doses of antibiotics and gave me creams to help lessen the pain during a flare-up. Neither of which were really long-term solutions. There was talk at one point of possible surgery or giving me weekly injections, which would need to be done for the remainder of my life. Recently, I was also asked to join a clinical study for HS, but after an initial consultation with the research team and given my history with clinical trials, I decided to decline the offer.
With so many more pressing issues to contend with in my life that need to be prioritized at this time, I think I have become numb to all my suffering, and having developed a high tolerance for the pain I’m learning to just live with it for now by chosing to work through the flare-ups using natural remedies instead like teatree oil.
But, recently, I was also diagnosed with another skin condition by a dermatologist. He took one look at me and knew right away what it was, but he did a biopsy just to be certain.
I was both confused and grateful at how quickly he could put a name to my condition, given that I’ve brought it to the attention of numerous doctors over the years. I’ve probably had it since birth and was shocked to also learn that it’s genetic.
It’s called “Neurofibromatosis” (this is the same disease that the “Elephant Man” had!) and is “a neurological disorder that affects the nervous system causing noncancerous tumors (which can, over time develop into cancerous cells) to grow on nerves, spine, brain and skin”. There are 3 distinct types of NF that can cause developmental and learning delays in children, brain lesions, loss of vision, and hearing.
These tumors usually grow on or under the skin or inside the body as well. As I age, and with many hormonal changes in my body, I have noticed more and more of these widespread tumors popping up, both on and under my skin, and most recently, cafe au lait spots on my legs which are also quite common.
Unlike my HS condition though, this disease does not cause me any pain, but over time, as it progresses, has made me feel ashamed and extremely self-conscious, especially during the warmer weather when my skin is more exposed.
The clusters of them on my chest and neck area are some of the most prominent. The ones on my arms are more embedded in the skin. The dermatologist told me that if I wanted to have some of them removed, it would be okay to do so. Which is exactly what I have started to do over the last several weeks.
During the holiday season, I was gifted a spa voucher from my employer. The voucher could be used at 100’s of spas of your choosing. Most normal people would take the gift certificate and use it towards a massage or facial, maybe a mani/pedi, but not me. It’s probably because I’m not normal, lol. Instead, knowing this feat would be quite costly, I chose to use it at a nearby medspa that was equipped to help me start to conquer the removal of some of the most bothersome clusters of tumors. The medical esthetician has been so wonderful and patient with me. We started a couple of weeks ago with a few on my neck, and they were healing well, so yesterday she did a whole bunch more on my chest. It will take a couple of weeks for the scabbing to heal, which I woke up to today, and will wait before deciding whether or not to delve into more. In the meantime, I am planning to also meet with a cosmetic surgeon in regards to a few more complex tumors, one being on my middle finger and one on my inner thigh. The one on my inner thigh has been there since childhood and has grown quite large over time. They would both need to be removed surgically. The one on my thigh has made me especially insecure for most of my adult life and only adds fuel to my body dysmorphia issues, I already suffer from enough.
Maybe I’m being vain for putting myself through all this, but I look at it as just another way that I choose me, to help build my crushed self-esteem and maybe while I’m at it, help make a positive impact on my mental health too.
#Neurofibromatosis #neurological #skindisorders #HidradenitisSuppurativa #mentalhealth #bodydysmorphia #selfesteem #selfconfidence #tumors #medspa #esthetician #elephantman #vainity
YouAreEnough 