Aftermath (Trigger Warning)

After I wrote the post last night I cried for an hour, I tried to talk with my Person and wound up just asking him to read the post. He understood a bit before, but after he read my words he could not argue with my need to have him seek out the words. I was so drained that I could barely keep my eyes open. I was almost asleep when I shifted and felt something under me. I shifted to try and get off of it, I thought it was a pen, as I often lose them in my blankets and do my work from my bed when I have to.

I couldn’t find the pen. Moving around had woken me up enough to help me realise I had to pee, if I hadn’t then I would’ve been awake in two hours and more off balance. So, I went to the bathroom. My body had a somatic reaction to the memories combined with an existing abcess due to the Hidradenitis Supprativa. To explain, I must add to the details of last night. Part of what I left out was the mention of genital mutilation. My father used my vagina as an ash tray. I have scars from both the HS and his gridning out lighted cigarettes in my flesh. I don’t know if I screamed but if not it was only because I couldn’t physically.

The pen I felt was an abscess that ran the length of my canal and was as wide as one half of my vagina. The size means it was there for a while, but the stress or perhaps the freedom triggered it coming to a head. It hurt. I called my person and asked for medical supplies, then I started trying to figure out what it was. It felt like dough with a liquid center. I ran my fingers up the length of it and at the head the abscess filled my hand. It didn’t burst the first time, but there was blood on the gauze. I did it again, and the mass got bigger. This time it burst.

It took a long while to get it fully drained, but, after the initial pain I felt only relief. Yes, that was a serious infection, and yes I have notified my doctor and we discussed treatment. The treatment is for me to keep it clean. If it fills up again and I can’t keep it drained I will go on antibiotics. We are waiting because of my allergies to all antibiotics, each has a reaction so it has to be worth it for me to take the pills.

While draining this wound I was forced to deal with my femininity directly after reliving the trauma. I never want to be female after, because in my mind it would’ve been somehow better if I was a boy. That justification didn’t hit me, nor did the self hate. I felt sorrow but not hate. I had to love myself to tend my wound. The world didn’t end and I continued to function. We did lock William out of the room due to my flashbacks. He would be in danger. Sprite is able to help me with my PTSD and set right to work once the medical gore was taken care of. She watched from the floor while I cleaned and waited for my Person to shut the door. Even now, she is at my side, resting with me.

There was a dream but it was not a nightmare. I was simply a butterfly fluttering in fields of flowers, the wind playing a song in the trees. Everything was peaceful. I flew up into the sky and there I became the wind and began to sing. Once I blew through the trees I became the tree and I grew. I am an oak and solid, I will be here for generations, I will outlast the injuries and pain. I am rare, I am strong. I then was the acorn, falling to the earth. I turned into a flower seed and fed the butterfly, before I was flying up again, on brightly colored wings. I have some tears that are falling as I share my dream. They are tears of joy. They feel different than the tears I shed in sorrow.

They are soft, and light. They are cleansing. I am looking at my wall, where I have a mural made out of butterfly stickers. They fly up, and up, swirling around a Jonathon Earl Bowser card I was given, around one another. I should finish the mural. I can hang the moon, and they can fly higher. I still feel safe. I feel free. There is more life inside of me than before. The infection is purged. I can keep growing.

I am not afraid to look at myself in the mirror. My person cannot see the scars in my flesh, he only sees the woman that I have become. The child who died that night can finally be laid to her rest. She can finally have her peace. I can finally be whole.

I am not sure when this all happened. Any survivor or victim or victim survivor knows this is a process. I have done this mostly alone, which may have made it harder. The alone was not wise. The alone made it harder. The alone felt safer. I no longer have to be alone. I have so many wonderful things in my life, wonderful people, and it is time to grow.

I have knowledge that is new too. I became a dancer because of that night. I couldn’t bear the stillness. Being injured and paralysed trapped me in fear. I denied the truth, I denied just how afraid I had been of being injured once more. When it happened and I lost everything, I secretly thought he had won. When I saw him after, my terror was not just of him hurting me but of him seeing he had won. He only saw that he had lost. I miss the dancing, but, knowing that I chose that path to spite him I can let it go. Perhaps I will teach someone else to dance, perhaps I will choreograph a dance with women who have survived or who have been victims. To celebrate what we are. It is time to grow.

Sink your roots deep, raise your branches to the sky.

How Rare is Rare?

When every medical diagnosis I have is considered rare, I want to know how rare is rare? Ehlers-Danlos Syndrome, Raynaud’s Syndrome, Celiac Sprue… the entire list is much longer than that and as of yesterday has a new contender. I found myself laughing when my doctor said, “Well, It is rare… but there is a name for the skin condition you have.”

I wasn’t even aware I had a skin condition. I always thought I was just dirtier than the other girls, and that my skin just sucked. I used to shower up to six times a day, though that made little to no difference in the quality of skin. I have lesions, blisters, boils and abscesses constantly. I thought this was normal, and that everyone got them at least sometimes. The name of this condition? Hidradenitis Supprativa. This condition is considered an actual disability according to the government.

I know why personally. For one, there are days when I can barely move my arms and walking, beyond the agony of the broken bones and hip issues I already have can be made worse by the damaged skin in my groin. Psychologically some of my most depressive days are the result of being infected, sweaty, and often worrying over spreading infection to others. Now that I know the name of the disease and have some knowledge I am aware that I am not going to infect anyone with it. It is rare. It is genetic.

I want to know what the mortality rate is with this disease. Some might say zero but I remember just wanting to die when I had my first really bad abscess. I was at work, and my nice shirt was ruined by the pus and blood because the boil burst before my break. I hid more shame, and beyond wanting to hide, run, or just cut my breasts off I considered killing myself. The never ending work of trying to get everything done, trying to be clean enough? That day I could not fathom selling anything, hefting the heavy boxes of dishes, and what about the smell?

Infection is not a clean smell. Neither is sweat. Being a teenager I never felt pretty. It took me becoming an adult to start seeing past the little things. Still, attending a friend’s wedding my thoughts were how to make certain my formal wear would not retain the odor of my sweat, on how to make sure that no one could tell. I am now entering the mourning stage of a new diagnosis. I mourn the times when I cut out my own abscesses. I did that last week. I have never once considered seeing a doctor when my breasts split open. It happens so often, that it is normal to me to self care.

This brings me to another point where I was accused of Self Mutilation as a teenager. Beyond having actual issues with that due to the severity of my depression, there were times when I was told I had to have cut myself in order for my body to be so gory. I was sent to a therapist for it. My body has scars, open wounds that have been around longer than some of my siblings, and my mind has been shaped by this disease.

The other effect of more rare diseases that are incurable is this. Can I escape being disabled? How inevitable is it for some of us to wind up with our bodies breaking us down? My body is out to get me. How can I function like this? What is next? Is breathing going to become a forbidden act because of something rare and genetic?

How can something like this really be rare too? Some of the research I did today indicates it is related to acne, though it is not acne. What if it is not as rare as all that? What if more people have it, undiagnosed and are losing out on their quality of life?

At this time there is no treatment. I will be updating my disabilities page, and I will find ways to help others like me. The more people who know, the more the odds of a treatment being created increase. I currently treat the breast area with a steroid cream, though, this is dangerous to do for your genitalia, and therefore half of my effected area is untreatable.

There is nothing that relieves the pressure, beyond bursting the abscesses. There is nothing that relieves the burning sensation, and there is nothing I can use to cut down on the sweat. Sometimes saline solution helps to dry me out, but, there is nothing that has a permanent or even reliable effect. Antibiotics have helped some, during the worst part of the cycle, yet not for me.

I am tired of being rare. I am tired of waking up in the middle of the night and squeezing puss out of my breasts. I am tired of denying myself sex, when I truly want it, because I fear being disgusting or the pain is too great. Sex is important to most people, me included, but my body is attacking itself and eventually my genetalia may be scarred so deeply that I can no longer function sexually.

In a long term relationship, this has an effect. It is not positive. As a woman, I have had a lot of challenges facing my femininity, partly because of this disease, but this adds another facet. If I cannot pleasure my partner, and vice versa, what are the long term side effects psychologically?

I am rare. I am one of the rarest people you will ever meet. My pain is rare. My skin is rare. My eyes and hair, and my entire body is a rare example of surviving despite it all. So is yours. So is the man on the street corner in the business suit. So is the single mother. Rare is not rare at all. For every diagnosis of a rare condition, countless others are never discovered. Statistics are faulty, when not every case is discovered, so how can we truly understand rare?

Info Links on Hidradenitis Supprativa:

http://www.hs-foundation.org

http://www.hs-usa.org

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