Ability

I am shaking. I just sat down after choosing to walk to get my bottle of soda. I still wish I could afford not soda to drink but the shaking has nothing to do with sugar and everything to do with the grinding pain of yesterday. I wanted to write yesterday but my brain couldn’t handle moving my fingers and breathing. I ended up going to bed at 9 pm, which is ridiculousness.

I go to bed between 2-5 am. This is a huge variance for some people but is much smaller than it used to be. I sleep every night usually, now. Yesterday my bones had shifted. I don’t have to have a doctor to tell me when the bones in my back moved a milimeter closer anymore, there is no pain quite like this. I used to faint every time. Yesterday I still took my meds on schedule, even though they would do nothing I could feel. I did this for two reasons, 1. Pyschologically taking my meds gives me a bit more stamina when dealing with the sensation of having my spine torn in half. 2. I am sure there is effect because I do feel better without them. 3. Habit. This is a good habit to have, because it protects me from forgetting to take my meds on schedule.

I woke up with this pain. It didn’t wake me but instead effected my dreams, I shifted to get up and almost fell on my face. I could feel the nerves pinching and slicing. It took effort to breathe. I considered staying in bed a bit longer, but the alarm was going off which means it is time to get up. No ifs ands or but I havent’ slept yets. Sprite and Nymph got me upright, and the wall kept me there. My bathroom cannot handle my chair, even removing the door would be laughable, so I slithered along the counter. I peed. Washed my hands. Bemoaned washing them before opening the cat food. OPened the catfood, managed to get the slop into a bowl. Turned, washed my hands again. Noted that my face is covered in zits, which makes me laugh as I look about 12 to myself. Then I, still covered in my darling cats, stumble for my chair and my pills.

I have started putting the daily dose into a small container at night for ease of use and if I hadn’t I would have lost my pill bottle. Sprite and Ny didn’t leave me yet, clinging to me with claws in cloth and purring. They didn’t go to eat until I had swallowed my pill and started trying to get comfortable. Ny went first and I could hear their stomachs growling. They like to eat about four hours before the last alarm goes off. Usually they get to but on days like this, I have that alarm for a reason.

The shaking started then, it was subtle but I spent the day in my chair, and had to have help getting to and from the bathroom. This irks me but is a part of disability. It was around 4:30 that I shifted and made myself raise my arms over my head, despite the sharp pain. I needed my meds after all. There was a loud snap and my newest carer now known as M the Carer (running out of letters here!) jumped. She was startled, and my pain eased off for a few seconds before my brain recieved the sensations of broken bones and pressure increase. I have to say I am surprised I didn’t pass out. I usually do.

Some of you by now are going, “Kat, why on earth didn’t you go to a doctor?!” So before I continue I want to address that, I have gone to a doctor for this over and over, and finally my spinal specialist and I agreed to just avoid the ER. I get sick, they make things worse, and there is literally nothing that anyone can do. Each time my back feels like this, it is the degredation taking a sharp spike. It means I am about to lose ability. That part sucks but I would rather be alone or in my home with friends and dealing with that than in the ER with strangers, with bad seating and puking on strangers shoes. My vomit seems magnetically drawn to shoes when in public spaces and there is no bucket on earth that can contain it. I projectile vomit, so it gets across the room. So this is why I stay home. I did tell my carer what was up, and filled her in on the shifting needs, she rose to the occassion on her second day with me more than admirably. The last time this happened the carer left and quit out of terror. Not M the Carer. She instead told me that if I needed to shut down or reached overload that she’d stay if that was what was best. We’d work that out.

I didn’t overload because M the Carer followed my directions, we got everything done and even had time for a friend to drop in. I haven’t really talked about Lily (so not her name but I have a few friends with flower names so it’s an ambiguous flower name) though she is many blog posts unto herself. Lily is old enough to be my grandmother, but is a dear friend. She reached out to me when I first moed in and told me yesterday that I hadn’t looked that pale or shaky since my first week here. I told her my pain was bad and she understood.

Lily and I chatted for about a half an hour and she went home because as she put it, “You really need your nap today.” I did but I couldn’t sleep. The cats were clingy yesterday because i needed it of them. After M the Carer went home, no lateness to that either, I took some french toast (it was delicious) and curled up with a book. I read three books before my eyes couldn’t see even my reader and it was getting dark. I tried sleeping but for an hour came back online and chatted with a friend about his daughter’s awesomeness. She recieved a huge achievement award froma program for low income kids with undereducated parents. That sounds horrible, but the program is there to help children with less opportunity, and that is the point. Her parents though, make me jealous of her childhood in some ways. Theya re far from perfect but they love and support her.

Then I went to bed. I hurt so much that I had a migrane. I recently was told that’s what that headache is when I mentioned it to my spinal specialist. They are common, and the only cure for me is sleep. I have to sleep until it is gone. Which means it is a good thing I didn’t have a weekend carer yet. It is now five pm, my time, and I have been up for three… okay two and a half hours. I kept getting up to bathroom, I ate something around 10 am and still had to sleep. I am still tired too. I may not be able to walk as far anymore, I barely made it back to my chair after getting my drink off of the counter, which is much closer to me than the bathroom.

I am sitting here and I am wondering what ability is lost this time. THis isn’t pessimism but I am trying to preplan. I watch my hands shake and the room whirl and consider going back to bed, though my body will wake me up at 2 am and then I will be bored and… so I will wait a few more hours before regular naptime occurs. I just dislike losing ability. As good as yesterday was there was this undercurrent of mourning in me, because I never know if I will walk when I wake up after. If not then I am so screwed for the weekends without a carer.

That is in process but there is a dimension of degrading that is often overlooked when I read about disability and that is the toll that a day in day out knowledge that tomorrow you lose something else can cause serious mental health side effects. So often I see a disaprity when it comes to acknowledging that mental disabilities, mental health disabilities, and the physical can all mesh together to create more complex issues. I trust my spinal specialist so much that I will tell you who he is if asked, once I get his permission to recommend him via the blog.

I think I wouldn’t be so accepting of my body without his influence, and each time I visit him I know and he knows there is change. He has been the most supportive doctor I have ever had, and even if I go in and am cranky he’s fine with that. He knows it’s pain. He has answers for my pain and is willing to try somethings that others call revolutionary. He is able to see that just because my body really sucks my brain is magnificent and often the ideas we try are a mix between his actual knowledge and my ideas, he has even taken some of my ideas that failed to other patients (with my permission) and so I have helped random spinally challenged strangers.

Ability isn’t what you can do alone, it is what you can do with the help of others.

This is what I am learning anyway. Just because I cannot walk does not make me disabled. What makes me disabled is the light post in the middle of the side walk, the cashier that tells me I cannot buy something, or the person that decides I am pitiful, while they are unaware that in my life I have done more than they dream is possible because I can.

Yep, it’s five pm, and I am starting to ache again so I am napping early. Bleh. Tomorrow I can try again.

Confessions and Denial

I have a confession to make. I have been in denial about the extent of my back injury. This was partly to survive, but mainly out of fear. What does a spinal cord injury mean? To me it was this frightening set of words that meant I would never do anything again. I have already proven to myself that this is not true, and finally I needed to know. What exactly happened when my spine began to fall apart? What happens as the damage is furthered? Why am I not supposed to exercise? Why do I keep having palpitations and trouble breathing but my heart seems fine? The last one is what made me start learning. Four years of denial, have ended. The answers are frightening but, empowering.

I found this nifty tool, a spinal cord map! This was the first step towards opening my mind to the information. The map gives a general break down of what happens when the zones are injured. My Spinal Cord Injury is overlapping two of the zones, and knowing now what I do, I can understand all of the above. T-12 and L-1 are both damaged, broken, and cutting into my spinal cord. My sacral region is also damaged, though to what extend I am not quite sure.

I still have feeling in my legs, most of the time, but I have limited control over them. I can do a bang up zombie impression when I am trying to walk, my arms outstretched for balance, moans escaping me as I fight to hide my pain, jerking and halting as I move slowly forward. Zombies aren’t diseased corpses. They are people trying to walk with damaged spines!

There is another set of broken bones in my back, between my shoulder blades. Eventually, if the spine goes there, I will be paralysed in a different way. Some of this terrifies me. I am supposed to focus on stillness, forgoing excercise because moving allows the gnawing teeth of broken bone to flex, shift, and cut into my spine. It hurts to move anyway, even my hands moving enough to make these words causes pain, a deep rooted ache that feels as if it will¬† never, ever end. It might not. If it doesn’t am I lucky? That depends on what comes with the ending of my pain. Death? Not so lucky. Paralysis? Not lucky. Healing?¬† Extremely unlikely, and that would be better than winning the lottery.

I must adapt. I admit openly that adaptation is not a choice, it is the only option. I can risk my life and my health to excercise or I can try to get used to a stillness that is unnatural. It is natural to move, to dance. Watch a small child play, and they are moving, unless in pain. Pain is a rescrictive thing, it constricts us and binds us in ways that our brains cannot always comprehend. That is why I am asking for more help, I need help with food, I cannot always force myself up to get it. I need help to preserve my tattered spinal cord.

In my imagination my spine is like a worn out dress I used to own, it was bright and colorful but eventually it began to wear thin, holes appeared, until one day when giving a speech I lifted my hands and it fell apart. I was thankfully wearing underwear that day but the people watching my speech saw much more of me than intended. I just grabbed my coat and pulled it on, buttoning it, then finished my speech. I no longer have the confidence to fight my body, to risk wearing my spine through. It can’t be tied back together. I cannot move through my life with a tattered spine, pretending nothing is wrong. I must accept it, and adapt.

This is not an act of strength. It is an act of life. I am not exactly sure why, but, I find no inspiration in others who have ‘over come’ their disabilities or adapted. I think it is because the truth is that you die or adapt. That is the exact thing that makes humans what they are. We adapt. We may suffer, we may struggle, but adaptation is not an act of greatness. The acts of greatness come after, with the knowlege gained and what you do with it.

I have admitted many things in my essays and writings here. Now I am admitting that I am afraid. I am afraid to adapt. It means change. I also know that every time I twist, every time I turn, every time I hear loud snaps from my back, this is something I cannot ignore. I already have an appointment in a few weeks with my doctor and I am going to ask for help. I need to see a nuerologist, I need a reassessment of my body. The wheelchair system I have is hurting me. This must be addressed. There is change afoot, and it is unpleasant.

I am admitting too that my mind is dulled often by pills and pain, together, one at a time, seperately. I am not helpless but my body leaves me vulnerable and now so does my mind. I have dreams, I have hopes, but they feel alien. Who am I to dream? Who am I to hope? These are forbidden emotions, just as to dance was forbidden and is once more. The world feels twisted, pulling at me from all sides.

I live in a world of oppression and today it is too big. I am going to write a story in a few moments, for a story telling contest I want to enter. I am going to chase down my dreams, I am going to live, I am going to adapt. I just am not going to give up. I want to. I want to dance, but, if I do I will be paralysed. There are worse things than paralysis despite what people are taught.

A wheelchair is not the end of the world. I just feel that fear anyway. I am in a wheelchair but I am still afraid of it. I am afraid now that I will pass out while using this one, that I will be hurt. This is not the freedom I felt at first, that first taste of being able to go. Now, it is a fear that does not belong. I am afraid too, that when my spine gives I will suffocate. As my spine degrades it effects my ability to breathe. I feel now that I will surely die if I cannot sing. This is silly, of course I can live without music yet I fear it. I once had this fear about my dancing, and although I can dance in my head, I can feel my muscles flexing and moving, I fear that this will not translate through, with music.

These are my confessions. I have been guilty of denial, self harm, and giving in to irrational fear. Apparently I am not super cripple today, just a human. I confess to being just like everyone else who faces adversity and disability, human. I confess that needing to adapt is frightening. I confess too, that I am determined to find a way to get what I want while respecting the needs of my spine.

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

  • Polls

  • Ye Olde Archives of Fury

  • Top Rated

  • Top Clicks