Poverty and Cultural Hate

I grew up hating my state. It took me a long time to see the good points of living here, especially when the only things that seemed to come up were Bad. Growing up in a myriad of small towns I was never an insider, and I did develope a good deal of hatred for my Hispanic neighbors. I hated the rednecks, the popular girls, I hated the girls who put out and the other outsiders who were still virgins. Eventually I was the only virgin in my school, and the pressure was unbearable. On top of that I had to hide self loathing. My family sucked, as far as I was concerned. We were poor and white. That meant we were just trash and no one wants trash.

Today I found out about this. Cheese Sandwiches do not accommodate potential allergies for these children, and they do humiliate. I was humiliated often by my peers and the adults in my life as a child. I never got to eat the school lunches because they made me sick but we could not afford anything else. I can taste my own cheese sandwiches, the ones I ate during my tenure in this same school system.

I also know how APS (Albuquerque Public Schools) is going to handle the repercussions of media attention. They will instead offer Peanut Butter Sandwiches. That is how they handled it when I was a student there. This is not a new policy, this is instead just a new excuse to deprive.

New Mexico has a fundamental hatred of it’s children. I have yet to see much proof to the contrary, when, the school systems are cut first, then public health. Anything that benefits the children lacks security. I do wonder, when we are of the age of grandparents, wizened and realizing our errors, if it will be the lack of care our children show us that makes us stand up and say “Sorry.”

The only things I really gained from my APS Education are an overwhelming sense of regret, and a GED. I am one of the infamous drop outs. I was always hungry, I was rarely reached out to by my teachers, and I am aware that the problem has merely gotten worse. The hunger I felt masked any outreach that was there. How can we expect these kids to learn when we starve their bodies? Some might not even get to eat at home. School might be the one meal they get a day.

So much for the economic stimulus package. Now we will have another generation of hate filled youth. Few will wind up okay, those kids who are singled out now are at greater risk for mental difficulties. They might have easy access to guns too. Albuquerque has a healthy gang community, and, improper diet will cause more drop outs.

Children need to feel loved. They need to feel like the adults want their success. I never felt that. In retrospect I can see it, but, it was so rare to have anyone wanting me to succeed that it never made a big enough impact. The impact that good people are trying to have is being deadened with this stupidity.

How can I help these kids? I am not sure. I do know that the public being made aware is a step. Maybe Bill Gates will remember being in APS and will provide the funding for food. He still has a charity right? Oh, top it off with the local coverage. There is so little it didn’t even make the news advertisements, instead they talked about the Governor being busy. I found out about this on my favored Feminist Blog, Womanist Musings. The local news has not aired yet, but will they even cover this topic? they did not mention it yesterday either.

Are our children truly this disposable? I look forward to the baby boomers joining me on the caregiver train. This generation which we just sentenced to starvation will be theirs. Perhaps they will find that anger in youth begets anger in the adult world. I am not wishing them harm, but, I am wishing that the adults and people with the power to change the future see that the future is in our children. They will someday make the policies that shape who gets to eat, and they will take away from those who wronged them.

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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

Isms, Hisms and Hersms

I read a few blogs on the internet circuit, some of them deal with feminism, some deal with racism, some deal with ableism, and others deal with Fatism. Isms of all shapes, sizes, colors, and one for each of us, sometimes two. Someone was having a sale on their isms when our culture was created, tossing them out like sprinkles on a cake. I am tired of isms today.

I have a great doctor. I will recommend her to just about anyone, for in her office there are no isms, just lists of things to get done. I now have an epipen, a referral for the dozens of undiagnosed whats its, and even a new diagnosis. I also was given the option of advocating for breast cancer awareness. The point was made that with my body being as it is, I have become acutely aware of risks and am in the perfect position to teach other disabled women about breast cancer.

I have thankfully never had breast cancer or even felt a strange lump but I do self exams weekly. I know it is recommended that you do monthly examinations, yet, this is not enough for me. I have relatives who have had cancer in all of their parts. Breast, brain, uterine, ovarian, liver, lung, you name it, and it has had cancer. I also have a lot of conditions, including one that effects my skin and therefore hypervigilance is necessary. Beyond this, what has made my doctor decide I am a great advocate? Self adaptation.

My breasts weigh a lot. Not only is the tissue very dense, making them pert and perky despite their size, but, it makes it harder to find lumps once you breach the FF quadrant. I left that a long time ago. I shared with her today my methods for a successful self examination. I have to adapt to the needs of my body and this means I may lay on my side, I may hang upside down, but, I always make certain to feel not just my breasts in a circular and consistent fashion, but my armpits and down my sides a bit.

I am lucky that I have had strong women in my life. I have an aunt who has had stage four Breast Cancer for longer than I have been alive. This woman has fought, and fought and thrives. She does at times worry her family for her life, but, she has dealt with cancer with no break for over twenty five years. In my mind she is the best teacher I can have about why cancer awareness is so important. Without knowing her, I might not have decided to live during one of the bouts with suicidal thoughts that I went through as a teenager. I might not have begun to battle with myself for proper medical care.

I have a lot of diagnosis, the list grows daily, but, my isms are mine. I am a short, fat, white girl in a wheelchair. I am also blessed with very rare breasts, the sort that women have painful surgery to mirror. I have great hair, great eyes (when they see) and a brain. I am facing daily challenges with ableism, fatism, and even some fetishism. Sexism is a consistent battle. I also face the blessings of people who are better than the isms. I face the knowledge given to me by my fellow females, and now I must learn to share.

Take stock of your isms, be you male or female. Take a look at what you are given by station in life, what you have fought for, and, if you have enough to share, reach out and help someone rise above. I will post about my chances to advocate for breast health. I am even going to start getting mammograms, a need I had hoped to put off for at least ten more years, but perhaps I can come up with a way to make them less painful.

This is hardly a new idea, I am merely following in the path of others who have taught me. This is not an area I had ever expected to be asked to advocate in, but, how can I deny the request when I know that even one person may become self aware?

Hot Dogs

In Washington domestic abuse victims now can protect their pets. A part of me felt utter elation for a split second before the futility of this struck me. If my cats are home alone, and my abusers magically find me, a piece of paper is not going to protect them. Yes, violence against animals is a huge problem, especially when small children are victimized by the terror that Daddy or Mommy is going to hurt Bowzer because they were bad.

I have been there. I spent years trying to eradicate my ability to love any small animals out of fear. This sudden dejected response brings me up to a point of realization, we need better protection for our humans and animals. If I had felt that I could have safety, options, or that my existence as a woman without children would have not meant another tour of danger where my life was forfeit able to convenience by the shelter system locally, I would not have spent four years with hidden abuse.

I do not like to talk about these topics, but I feel I must. How can I deny the truth and expect other people to see the way out? I was shown, or I would be far worse off than I am now. From some aspects that notion is laughable, after all how can my health get much worse? I can answer that question. I also look at my mind. My mind is strong, free from suicidal ideation for the most part, and it is able to reject the idea that a bullet is the best pain killer.

That does not mean that I should have to feel fear. It is an awesome thing, the hallelujah godliness sort of awesome, that our animals are finally being acknowledged as impotant. Often, if food was not enough to make me obedient, all I had to do was think of my cat and her own special needs and I would do what was asked of me, even if it was torturous to my body. Give up the money I need for clothing and food? I’ve done it. As of right now I am fighting back from a waredrobe of two shirts and four pairs of pants.

Does not having clothing seem silly to compare with being hit or your animals being burned alive? In some aspects it does, yet, being forced to wear clothing that is not appropriate for the season can be dangerous. You risk exposure, overheating, freezing, sunburn. Not having enough clothing to merit doing laundry or to make it worth the time to change out of the outfit you have on for a week is also depressing. Many women are controlled in their relationships by their lack of finance for fashion, it becomes a third rate priority and eventually that can impact their jobs, their social lives. This impacts their ability to be taken seriously and to feed their children. If they are not taken seriously during a crisis, either medical or one where they make their break for freedom, this can leave us with another statistic, instead of a survivor of abuse.

Should it? Not at all. So, as we celebrate this new law in WA, lets look at other ways we can try and help people to rise above. I look forward to the day when a Utopia exists. Man, Woman, White, Black, Asian, American, Mexican, none of these words will matter. Violence will be a memory, not forgotten but taught about with utter honesty so that history does not continue to repeat.

I have a dream, a dream for every woman who has ever felt fear, for ever child who has waited to see if Daddy was going to get mad because they sneezed. I dream that these women and children find freedom and grow into well rounded adults who are secure, able to advocate to protect the weak and the innocent. I dream of a day when domestic violence is a faint memory, a shameful one, and is no longer an option.

Ana Phalaxis- Super Villain!

I made a mistake. I ignored symptoms that could have killed me last week, during an allergic reaction. I have become so used to stifling my own needs through the years of surviving and it nearly killed me. I also have a limited education by my medical staff on how to handle my reactions, most of them writing off my lists of allergies as an attempt to get out of eating food I do not like.

I am not a hypochondriac. I was diagnosed as one when I was a child, because invisible illnesses are very complicated and my mother never told new doctors about the existing diagnoses she had. I have multiple diagnoses that were remade as adults, and only then did she actually believe that these disorders could effect my life.

I was sent to a mental ward for being in pain. This sounds preposterous doesn’t it? Your child is suffering, so, you have her locked up because it must be all in her head. You have her trained in how to lie to herself, so that she will take herself seriously.

I do not personally believe Hypochondria exists. Part of what makes the diagnosis work is that you supposedly get something out of your claims of pain. I never did. I remember telling my mother when my hands hurt, visibly swollen knuckles that would barely bend, and I was told to stop being lazy. This denial and imprisonment escalated changes in my fragile mind, which caused more issues.

Even now, as an adult, I can hardly acknowledge when I need help. I have a caregiver who I still forget to ask to bend and pick things up. I am physically unable to bend over without fainting, yet, I tell myself to not bother him. He is paid for this, which has helped me begin the process of healing, yet, I still hurt myself out of habit.

I did make it do the doctor in time, it took me three days. Three days of being barely able to swallow or breathe, and three days of repeat attacks without exposure. I also could not eat. Then, and only then did I seek medical help. The last time I went to the ER for an allergic reaction was when I was very small, usually I self medicate yet, I also know just how stupid this is.

This time, in the ER I had an experience that woke me up a little. I had a doctor who not only took at least ten minutes of inspecting my body and asking questions about my needs, but, he never once denied that I have severe allergies. Instead, he prescribed the necessary medication to help me heal. He also suggested I try and see an allergist, because the severity of my reaction without eating the food is rare. Most people with food allergies actually have to at least put the food in their mouth or to physically contact the substance.

I have documentation of my reactions changes, and I do not doubt that my primary care physician will send me to an allergist but I do believe that this reaction will change the level of care I receive. Last time I went to an allergist they gave me the blood and skin prick tests, yet they claimed that I did not react to either. Instead of telling me that I do not have allergies, I was told they were merely minor, and nothing to worry about. They took away the epipen, despite my having gone into anaphalactic shock repeatedly in my life. Not once, not twice, but over 20 documented times.

I am only twenty four, and my body rejects so much but, my allergies are not severe? This confused me, yet I did my best to follow orders, though, the doctor turned out to be wrong. There are other tests they could perform to check for allergies, yet, I am hoping this time all it takes is my handing over a list of the foods I react to.

I am still struggling to breathe today, but, I can think once again. My throat is still visibly swollen, but my inhaler for asthma is finally making a difference and I can feel the air in my lungs. The doctors are worried I will develop pneumonia now, though, because my lungs shut down for so long without treatment and even when I went in to see the doctor my heart was responding to the reaction.

I did spend the last few days reading up about allergies, reeducating myself, reinforcing my value and the value of my body and it’s needs. I need to protect myself, I need to love myself, and I need to teach the people around me how to identify anaphalaxis.

Until this experience as an adult, aware that it is not all in my head, I have always thought anaphalaxis meant I had to go to a doctor to survive. My thoughts were wrong. Some people survive anaphalaxis without medical care, though the extreme nature of the reaction does make this often true, there are some reactions that are still Anaphalaxis that do not kill.

In all of the times I have known about being in Anaphalactic shock I did seek doctor’s care, but, the times I have dealt with the symptoms of an attack, the times I have felt my throat starting to swell, my head getting light, and the times that my hives have burned through me, causing fevers and chills? I have no idea how many times I have dealt with that.

I am going to write an educational program with my doctors’ input to teach people about allergies, or I am going to find an existing one and take part in educating myself and others. Education can save myself, and it might make it easier for me to ask for accommodation with my allergies.

I do not want to spend the rest of my life in the apartment, I do not want to have to hide anymore. I have stopped attending too much of life’s fun parts and I miss it.

Whatever Happened to Baby Jane? (Trigger Warning)

Bette Davis, Joan Crawford…A movie about the horrors disabled people can face with an abuser.

This is one of the most wonderful but horrific films I have ever seen. Joan Crawford plays an actress with a jealous sister who not only tried to kill her but is now her only caregiver. Bette Davis plays all of my worst fears brought to life. She forces Joan to either starve or eat rats, her pet bird, or possibly poisoned food. Their maid, a beautiful African American woman, is the hero in this. It is she who sees the potential for something wrong and refuses to leave the day she is fired, instead insisting on seeing Joan’s character. It is she who saves her from embezzlement, being isolated, beaten, and left to die a slow and horrible death. She was cut off too, no telephone, stuck upstairs, the bell for help taken away. It is horrible to watch.Bette’s performance is that of pure evil, in the loveliest of forms.  The genius of this film is that they use clips of the actresses when they were younger. They build the story up and you feel the pain involved with Joan’s treatment.

This film also highlights the incompetence of others, enabling the abuse. The teller who illegally (possibly not at the time of the film being made) gives cash when a deposit is required. The neighbors who ignore the weak cries for help, though they may not hear. The doctors who ignore the patient’s panicked cry when she could under duress be recanting. I will not spoil the climax of the film, but needless to say, this one touched a nerve. There is murder in this story, no one wins. Hope is torn from the viewer and Joan’s character.

Gaslight with Ingrid Bergman is another film that taps on true life abuses. The abused housewife is not beaten, but is instead told over and over until she believes it that she is insane. His greed is what drives his crimes, polygamy, identity theft, and murder among them. He uses the technology of the day to prove to her she is insane. He too plays on my worst fears. He proves to me that men are evil, a blanket statement that feels utterly true while I watch this movie. It isn’t, but it feels that way. He abuses his wife, publicly and privately humiliating her, forcing her into things that were against her nature.This film was so effective it gave it’s name to an entire term in psychology. Gaslighting is the proper term for causing someone to think they are insane. There is more to this of course, but this is the best I can do to explain right now.

Why am I posting about two films made before my birth? They touched me. They burned my heart up and left me shuddering with memories. They triggered responses in me that were deeper than perhaps intended. I felt the trappedness from my previous experience. I felt the worthlessness of knowing I am wrong at all times, and that my only value to others was at their own pleasure, my own wants and needs coming last. I felt the fists of my father in me again. I felt the harsh words of burden.

I am not a burden, I am not insane, and I am free. I had to chant this at times, the wheelchair a prison during the entire time. I could see even one stair trapping me. I can only remember too well  how few people actually listened when I cried out for help. The cold stabbing feeling of being told my case was not compelling enough to prosecute, that no one wanted to protect a child from  her rapist father.

Caregiver abuse is one of the worst crimes I have ever heard of. Some call it elder abuse, but, elderly folk aren’t the only ones trapped by their bodies. Many are vital and amazingly resiliant. I am posting about these films so that you can perhaps try to feel the things I felt, in lesser measure. These films raise awareness of the plights of the hidden victims in this world. Perhaps even someone you know is enduring secret abuse. You might not be able to save them, but raising awareness even by one, can help them save themselves.

Whatever happened to Baby Jane? Be glad you are not so evil, and if you are, may you see your reflection and set your victim free.

Hidden Abuses in our Culture…

I am far from the only person who has blogged about misogyny. I hope to not be the last. Recently I have become aware of a subtle malignant cancer in our world. I turn on my TV and see a woman in a cast giving various excuses often used by abused women to justify her injury, which came from cleaning too much. I got angry fast. Growing up in an abusive household I could see myself there, I could see my mother there. “I fell down.” Really? You fell down… Then at the end another woman comes up and is wearing an identical cast and points out she was just cleaning.

Oh, let us mock the plight of women trapped in abusive situations fearing for their lives daily. Ha. HA. HA. Very funny. /sarcasm

I am aghast at the horrors that can be made to denigrate women. At Shakesville there is an entire series about disembodied body parts. This is a huge eye opener. I am not just a pair of legs, breasts, or a disembodied mouth opened for the pleasure of man. Really, as a disabled woman I am not sure some of my parts would work in the ways that these “artists” claim they would. Is it art to make a pillow out of a woman’s vulva? Some might say yes, but I disagree.

I would not classify myself as a feminist in many ways, but, as a woman who advocates for her own needs and the needs of others, and takes a special interest in the rights of women and hidden privileged in this society, I am a feminist. I am not sure how else to say it. I do shave my legs, I do like pleasure, and I do not hate all men. I used to, as a psychological reaction to my abuse, but, now I can appreciate their value equally with the values of women.

I am aware that just talking about what goes on in the world here won’t necessarily make a difference, however, it is a start. I can start a discussion. I can perhaps get someone to think. I can perhaps open someone’s eyes so that they can see themselves in a new light.

Not the kind of light a new study talks about. This study is trying to excuse the objectification by men of women. The problem with their result is that these are grown men, and they are already trained by their parents to objectify women. I am not an object. Treat me as one and I do kick back.

For more reading on this subject, you can try these links.

The Disembodied Parts Series at Shakesville

The New Study in more detail at Feministing

Eventually I will try to get a vide of the atrocious commercial.

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