Bruises

I have multiple conditions that require that I bruise easily, and I always feel bruised after slight bumps but it isn’t until weeks after the injury that I start to show bruising.

In my early life I thought this was a good thing. It meant that my father’s abuses wouldn’t show and therefore I was a better child. This was directly reflecting the attitudes in my home. In fact my lack of bruising often caused my family to ignore the seriousness of some of my injuries, which has lead me to my current state of disability.

I have wondered often in my life on many topics from “Is Nicolai Tesla Autistic?” on through, “Why does Sylvani try and nurse milk but can drink water?” This is one of the topics I have mulled over the longest. My doctor’s offered no explanations, which at first disconcerted me. We are raised in the US to believe that our doctor’s are all knowing and the ones who behave like Gregory House are the ultimate in doctors.

This prevents people from asking questions, this makes it harder for a disabled person or a person with a yet to be diagnosed chronic illness to be taken seriously. If said person has a vagina and breasts on their person they are going to have to fight to have the slightest ailment taken care of muchless a more serious issue. I became highly aware of this when I started self diagnosing.

Self diagnosing is a huge no no, as this gets one labelled a hypochondriac, even if the questions are meant in an innocent fashion. In my case it was little moments where I met someone with a disorder, such as Reynaud’s the circulatory condition. My case is actually worse than this person’s and as I asked her questions about her disorder and found I had literally every symptom I began to worry. She was nice about it and we both believed I had the same condition. It helped that I would turn blue faster when it was cold or when I was stressed.

The adults ignored the physical symptoms and decided I was somatizing. So I learned to keep my mouth shut and stay away from doctors. I thought for a long time my mother was absolutely right about the medical world. At times I wonder if her experiences with medicine and their misdiagnosis are why she doesn’t go to a doctor, but I feel more certain that it is because an abuser also wants their victims kept away from medicine. This is a part of why people die from abuse so readily. If you cannot get a doctor and have internal bleeding, you are screwed.

Over the years I have never once had an answer for why I bruise so slowly. This has inhibited my ability to know if i am injured in areas where I am numb if the skin is not split, sometimes the skin splits don’t show for a while as well. For example when I was injured on the paratransit. It took me almost a week to figure out that I really was hurt. This was between my spinal cord injury, slow bruising, and the signals from my brain putting the pain in my right leg between my hip or my knee when the wound was touched. I couldn’t find anything in the area my brain TOLD me was hurt.

I am thinking on the life long ramifications of my body’s build. I know, at least I hypothesis, why I don’t bruise like someone with Ehlers-Danlos usually does. Not only because no two humans with the same medical illnesses are identical, even identical twins have interior differences, but a confluence of small veins and low circulation has kept me from being black and blue.

Every blood draw I have had I am faced with a phlebotamist’s lament about the smallness of my veins. Every time I have to convince a doctor that I have EDS, I must point out the fact that not every patient has the significant bruising and though I feel my bruises they don’t always show. It isn’t the excuse given before about deep tissue bruising. Not every bruise is going to be in my muscles, and those hurt in a whole different way. No, my lack of bruising is a lack of blood flow to the injury.

I started thinking on this yesterday as I woke up from my nap and my face resembled a chipmunk. The dislocations were atrocious yesterday, so my face shows the marks still. Perhaps I bruise less because my blood is busy swelling up my head, or my hands, or anywhere but where I expect too.

I can go back to my next task. Between halloween preparations I have been watching every James Bond movie that has been produced, all 22 of them. This is a painful excercise yet it has a purpose. I decided to find out the evolution of the Bond Girl. I remember loathing Halley Berry’s portrayal and being uncertain as to why, so I decided to investigate. I am not liking my findings. I suspect some people may deem them controversial!

Also a reminder: I am not planning to write during October. October is my runaround like a chicken partying month, so I shall resume my current scampering.

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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.

The Doom Ship

Not everyone gets to ride the Doomship. I ride, others ride, and yet I often take it for granted. What is the Doomship you ask? The Doomship is the Ship of Life, riding towards the birthday of Death. It sounds horribly dramatic and is.

Children born with serious illness are often told, “You won’t live to be 21,” Or something similar. I have a list of birthdays that have passed, my next is another Doom Birthday. When I broke my back, and it was first diagnosed I had a series of doctors tell me that my organs would fail by 25. My birthday isn’t for a few months, I was reading blogs off of the Disabled Blog Carnival and started reading Temporarily Disabled. Not only is this a great read, though with each post I tend to cry just a little for the child who was aching and the pain she has been through. She turned 26 and posted about the Doomship, sailing past into the great unknown.

With Doomship Birthdays past, it is like looking at a precipice of great unknown. I know I am going to live past 25. I am confident only due to surviving so long. These waters are familiar. I am pensive too, due to my Annual Cancer Scare. I get one a year. This time it is my reproductive system. I had my annual blood work done and my white count is high. My pap came back with abnormal cells. We’re redoing them both to verify before any panicking is done.

I waited three years before getting a pap, because no doctor would accommodate my need to not be in their perfect position, or to even help me balance on the table. I can’t do it myself. I need someone else to help heft my carcass around. I know if I do have cancer I won’t die. I will just get over it. My doctor is more worried than I am.

Right now I am surrounded by everything I have ever wanted. Not the things like the toys I never had, but the love I most desired. On my right I have Sprite, the service cat, curled up and purring against my back. She is helping me to not spasm so I can type the words out. My body is rebelling. I have on my left William drooling into my shirt, and every so often poking the keyboard with a paw to see what is so fascinating. He sleeps, then paws then sleeps a bit more.

In the other room my Person is puttering around, doing the dishes after making a meal of my choice. I had spaghetti with sausage meatballs. I haven’t had meatballs in a long time, but he made them for me, tolerating my lewd jokes. My home is clean, my bed is comfortable. My friends and family are far enough away and close enough at the same time. I even have high speed internet to keep me amused on those days when movement is unacceptable.

The Doomship sails on, the waves splash, the thunder crashes, and my life flashes before my eyes, but, it is the life I am living that I am proud of. Not the memories, not the past. It is my future that holds me in it’s sway. I reach for it, sitting in the prow, praying to my gods, listening to the world, and taking part in changing it.

I write something every day, and each time it is self discovery. I discovered I can write non fiction. I never knew I could. I know the mechanics of writing are sound, as I sell fiction periodically, and write it almost daily. It is merely the fear of my life that has held me back. I feared upsetting those with the power over my life and death. I am now the Captain of my Doomship. I mutinied.

So, as I rest, my ship swaying, I look out and see that everyone else is in a Doomship too, they just do not know it. They do not prepare, they do not adapt. They aren’t aware that they have to. Red sky in morning sailor take warning, the storm is coming and the night is humming… wait not for the red sky at night, for on the Doomship there is no Sailor’s Delight.

Post Traumatic Stress Disorder and Advocacy (Trigger Warning)

In conversation with one of my young friends I had a revelation. This was about thirty seconds ago. Sometimes advocating triggers flashbacks while I am trying to function. My mind lept then to other people who have to self advocate through PTSD symptoms. It isn’t always a flash back. If you do not have PTSD it might be harder for you to understand being jerked around by past trauma. Therefore I am going to explain, and this is why there is a trigger warning on this post. Sometimes reading about PTSD or other issue related things can trigger people.

This is not from the DSM (Diagnostic Manual thingy) but is from my experience. I may leave things out that apply to you or tell you things that don’t. The problem with labels is they are often not enough to truly explain what something means. Lets say someone shoots a gun. My first impulse is to be very still, not breathing, and praying that my father won’t make the shot. Even typing that sentence my head went into the land of fuzz and my chest is tight. I am taking slow breaths to focus and clear my mind. The trigger is not always a gun but just a loud pop. My brain is stuck on certain points of the abuse I suffered, it has a programmed loop that it likes to play. I have warning symptoms for my flashbacks now, and can often circumvent them.

My reality is in jeopardy from these loops. the weakest symptom is a tingle, intense fear, sometimes I start randomly bleeding. Why do I bleed? One theory a psychologist offered is somatic symptomalogy. Basically my body remembers, and it reacts so strongly to what my brain signals, that it thinks it is injured. This adds to the pain I feel. The pain from invisible injuries is far from phantom. I feel it. The next step after that is the sensation that I am floating, I disassociate and can see the entire world, but I am not connected to it. Usually I then go back in time. I see and feel at the same time, from multiple vantage points my father with his brand new gun, me and my siblings on the couch. I feel the cold metal of the gun pressing against my forehead. My nose stings with the tears I cannot shed.

The loud bang comes, I feel the heat of the bullet, my skin is burned by muzzle flash and I feel a horrible pain as the bullet grazes my temple. I don’t move. I don’t scream. I just stare up into that black hole, smoke pouring out of it and avoid looking into my father’s eyes, knowing he is going to be angry that he missed. I hear every word he screams again, how worthless I am, how I should be dead and must have moved. My sister starts to scream, my brother too but I can’t move. I look into his eyes and I see the blackness.

I still do not remember what happens next, though I have been told he decided to shoot at my sister, but I pushed her aside. I just know he tried to shoot his children, sitting on a couch that smelled like pee, and nearly killed his neighbor because the bullet went off. The cops were called but I took the blame. I said I was playing with his gun when it went off. I lied, to survive.

When I come back to myself I always want to vomit. Instead I focus on breathing. If the nausea is really bad I will take some Rolaids. Sometimes now, after years of effort, I let myself cry. Usually I manage a tear but my brain has yet to grasp the concept of tears. If I am not at home, it is worse to recover. At home I control my environment, I have a bed to curl up in, two soft fluffy cats, and my Person can go elsewhere more easily giving me the time I need to recover.

When I am advocating and flash back, I never know what to do. I try different things, and usually they work but the vulnerability can be debilitating. I flashed back my first time having to seriously advocate to that scene. That is why I chose to relate it to try and explain what PTSD is like. I wish I had simpler words but none can encapsulate just how much there is to it. Sometimes the flashes are different, sometimes I am still an adult but I am trapped, it is worse in some ways because I still feel the pain but I am completely aware that my world has vanished. I am never certain if I am going to hurt someone. I have before, but it has been a long time.

That first taste of advocacy was so bitter. The cops came, and one fondled his gun and my brain shut down. I was afraid, in pain and exhausted. I was being yelled at and deprived of my prescription because I needed my service animal. The cops even saw Sprite follow her training. When I flash she has three tasks, beyond her instinct to comfort me. First, she signals to my Person for help. Sometimes a conversation can end it. So she chirruped at the person of the day, and I had to form the words, “I need you to deal with them for me. I can’t.” Then, she helps me to sit. I had to wait fifteen minutes for a chair, I wanted to scream at them but I tried to stay calm. I was hyperventilating, they took this as my being dramatic. Then, she moves to my shoulder. Her instinct is to sit on my chest, but she might get flung there, I do not handle pressure on my chest well even when not panicking or flashing. Her instincts tell her to purr, to rub with just her face against mine. This grounds me.

The police threatened to arrest me if I did not leave the facility. I knew enough to know they couldn’t but they refused to acknowledge that I had rights. I couldn’t fight, but I had to. I chose then to repeat the law over and over. I couldn’t think, I couldn’t see their real faces for half the time. All I saw was my father and his eyes that reflected no light.

What can you do if you have PTSD and are an advocate? Here is the how to portion.

Step 1. Before you get to the point of advocating, have a support structure. This is a difficult process, because not every person can truly understand what it is to lose your reality. You need to have someone you trust availible, at least to call.

Step 2. If you have medications used to treat the symptoms of your PTSD in an emergency make sure to carry them with you, to keep a back up dose with your support person, and to keep your doctors number handy.

Step 3. Create a kit of items that help forestall your flashbacks. Nothing works for me beyond my cat. I can give her the signal she is trained for when i feel the warnings coming and ground. This is all I have right now, beyond my Person. No meds, just those two.

Step 4. Remember to breathe. Sometimes if you focus on just breathing you can help yourself.

Step 5. If you flash back during advocacy, try and focus on the responses that do not match the memory. This has worked for others, pulling them out.

Step 6. Advocate anyway. I did get the illegal policy over turned at the Pharmacy where I was threatened with arrest. I had to fight for a long time to do it, but, they relented. It is worth it even though it you might feel endangered or might BE endangered by your flashbacks.

Step 7. If you have to, stop. This opposes Step 6. Not every incident can be worked through. You might need to call your therapist, you might need to let your support person advocate for you. This is not a failing, this is merely the team network that advocacy should be.

I am glad to write this how to. I never considered how important it could be, but, in my mind my broken back, my asthma, and my failing eyes are not my most dangerous disability. The worst disability I have is PTSD. At times during flashbacks I have hurt myself, my friends, and reliving the painful memories can also cost me emotional, physical, or mental progress.

Keep in mind the time you are most fragile is just after a flash back. Some people can be triggered more easily, often it is easier to react in rage. Do not minimize your pain either. It is okay to cry, scream, and sometimes to just walk away.

I have done all of the above. Not every incident with advocating will cause a flashback either. Most of my time advocating I am left with memories of victory. My first taste of advocacy is as sweet as it is bitter, because I still succeeded, despite my unabiding terror of these men. My greatest cause was also revealed to me. I am actively fighting to get the local police trained in how to deal with enforcing the ADA. I want my rights protected, I do not want to fear being put in jail, dumped out of my wheelchair and my service animal being put into Animal Control’s care.

That was the threat, and so often is. My heart goes out to any other advocates who suffer from PTSD. I know each person’s PTSD is varied, some may not flash back, some might just panic. Others might not be able to stop their flashes. You can still advocate. Just prepare yourself as best you can.

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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