Selling the Magic Cure for Pain!

Right now, there are dozens of ads airing on a handful of stations in your area, perhaps every single one, schilling pain drugs. I tend to change the channel when these magic pills are advertised. Nothing cures pain, it just blocks the signals to the brain. “My Fibromyalgia pain has hampered my life, until I found this pill and became an above average American with no pain who can do it all, this pill turns you into Super cripple and has a musical name to boot! Try Elyricembril today.”

The expectation that these commercials set is unrealistic. I used to hold out hope that a pain pill would come along and take the ache out of my joints, or a pill would make it where my joints would stop dislocating. Tonight, I moved my pillow two inches and dislocated my right shoulder. Right then, a Lyrica commercial came on. I couldn’t change the channel, and saw a bunch of white privilege added in to boot. Not only is this woman schilling a drug, but, her family is all happy, has everything they need despite her invisible illness. There is no suffering all because of their magic little pill. This woman is blonde, thin, and has no needs beyond their pill.

The reality is so different. All these commercials do is add to the sense of defeat that a person with a disability faces. Those who are the hardest hit have no diagnosis, their bodies just fail. They do not get the luxury of knowing why. My list of medical labels is a luxury, I do take it for granted, but it is worse for those with no labels, no treatment, and often no job or home.

A part of me yearns for socialized medicine, with our government understanding the need for medical care for everyone. This would mean my caregiver would not have to ignore those aches and pains he feels daily, that to me indicate that there is likely a problem. As the depression that we are in, it is not a recession that is merely denial by wealthy men who fear the truth, gets worse so increases the amount of untreated medical ailments. Some include the diagnosed but many are ignoring small injuries tearing themselves apart and whispering in their minds, “When this recession ends, I’ll get a magic pill.”

There is no magic pill. There is nothing that takes away the pain. There is nothing that can cure you if you get sick enough. Sometimes you are just born sick. You do deserve medical care, but, turn off the commercials. The medicine that works best for many is not new, but is older medication ignored until nothing sold on TV, written on a pen, or advertised to doctors who are often paid to give out these pills works. There is no magic pill. There is no Truth in Advertising.

I might sound bitter, as I lay here writing. I feel pain in my body with every breath. I know there is no cure. There is no end for my pain. It has gotten worse through my life, each day it gets worse. I have tried everything, and usually once this is revealed my doctors give up. I have not given up. I am far from bitter. I am merely growling at a threat. The threat that kills hope, the threat that removes treatment, and the threat that further disables the mind. There is no magic pill.

If you are reading this, feeling alone, and need support. There is that. Not only are there support groups everywhere, but, you can contact me via my blog either in the form of a comment or using the contact form and I will talk with you. Friendship is free, and is often the best thing for those in pain. You aren’t alone. There may be no magic pill, but, that does not mean there is no hope. If you are reading this and have been feeling the ache of frustration, anger, or sorrow knowing someone else may see these advertisements and feel false hope then the crash that comes after, reach out. After all, if we save ourselves, support ourselves, or merely even convince a doctor to try something old, we win. There are many ways to lose, and the magic pill is one of them.

Medicalization of Humanity

I have spent my life being a patient. Most people do to an extent but a lot of non disabled people do not wind up in a doctor’s office monthly. Those that do are usually seeing a psychologist. I have been talking to my biological mother again, because she needs my help. In exchange for helping her with training her dog to be a Service Dog I asked for payment in therapy. Not literally, but, figuratively.

I think she was startled but, I am wounded emotionally. I am so angry at her, and I need to forgive her. I can’t do that without working out some of the issues and I want a mother. Some of the things that have angered me include over medicalization of my emotions. Being human has never been an option for me, despite the obvious inability to escape it.

From reading my blog you know already I have a history of abuse and chronic illness. You might have also noted an undercurrent of loathing for labels, though I am working to embrace mine. Some labels cannot be avoided. After becoming an adult I went and paid for a psychoanalyst to evaluate me. I wanted to know if, without my mother’s influencing them with her fears, I was really as insane as everyone told me.

I did this because I didn’t feel crazy. I felt depressed, but, not crazy. I did not think I was becoming a sociopath like my father. I put effort into fighting that, and won. What I did, to help prevent influence in this doctor’s office by my past was withhold information. It took several calls to find a doctor willing to work with zero patient history, but, the woman who did the test with me understood my need to find the truth.

In my childhood I was diagnosed with Borderline Personality Disorder, Bipolar, Depression, and a slew of other labels that never quite fit, including Multiple Personality Disorder. Most of these get renamed with each DSM, and with number V coming out (I don’t know my roman numerals and I am not looking up the translation, it is either four or five), I am again feeling pensive.

Part of it is the sudden ability to cry. For the first 23 and a half years of my life I could not cry without bleeding. I cannot seem to suppress my tears anymore. Again, some of this is because of effort though the effort sends me receding into myself at times. With that test, I was freed from the stigma of most of the labels I had received.

Those that stuck are depression, lower case because it is something that is perfectly natural considering my family history and personal history. It also is not something I will ever treat with pills again. Another is obsessive compulsive disorder. I need the world to be in order, and this comes from my past. Anything out of place could cause a beating. My disability has helped me with this. I cannot order the world, and I am healing because of it. I had no way of cleaning my room for years, it was horrible.

The test also helped hint at something else, I am Autistic. I have Aspergers. I haven’t told many people, just my Person and my mother. Now the world knows. I feared the Stigma of Autism. My best friend (All my friends are my best friends) Maxis is autistic and helped me to realize that my Autism just lets me be me. It has made things more difficult in some ways but I have adapted, and am extremely high functioning and no one can tell. My labels are not readily visible.

I also am an adult with Attention Deficit Disorder. I adapted as a child, after taking Ritalin. The Ritalin made what turns out to be a side effect of the autism, my extreme sound sensitivity, worse. I couldn’t stop screaming, all my pain was there, and of course I turned out to be allergic to it. My mother pulled me off of the drug despite my institutionalization. I recollect hearing her voice through a closed door, I was curled up in a corner in the Time Out room, being punished for not brushing my hair. My mother had come to visit and I had cried telling her how loud everything was, and hearing her tell the staff off for drugging me was the best sound out of all of them.

I am still sound sensitive. I can hear the sounds most people tune out. When a computer is turned on, each second I hear the scraping of the needle in the hard drive. it is deafening. I have five running right now, and have adapted to the cacophony of my world by adding more stimulus. I have yet to find true silence, even with a power outage but that is the best peace ever. Still, having mental distractions helps me cope.

I find it a bit ironic that being nearly deaf in one ear has not decreased my ability to be overstimulated by sound. Overloading is so far what works best. The great part about hearing everything is hearing my cats purr, when no one else can. Sometimes that sound is the best in the world. My nerves have always been just as sensitive, my skin feels too much and that can cause even the touch of William’s paw to have me crying out.

Still, in my life more damage has been done by mental health practitioners. I have been supposed to find a therapist for almost a year. First, I used the excuse of insurance, which did not cover without a copay. Then when that was fixed, I used the excuse of truth. I do not want a Therapist. I really hate them, and do not trust them. I am aware of my need now, to find one. I need someone to work with, so that I can help myself and my mother.

I remember my first Therapist. Her name was Candy, and my father upon finding this out asked if my Mother was taking us to see a stripper. He thought it was funny, I thought it meant that the doctor tore up paper. Instead, she told my mother that she could change my father. She told me and my sister, we all shared the sessions, how women must learn to cook and my bruises and burns, were just the signs that I was going to be a great wife.

I never believed her. My sister did, and when I told her at night that I thought that Candy was insane, she told me that she is a doctor, so therefore I must be wrong. I kept it to myself but at the age of four I just told her things I thought she wanted to hear. My father was sent to a mental hospital after attacking a man, or something like that a year later, and my mother did not let him back in, despite Candy telling her we would all go to hell. I think the woman let her religious tenancies effect her job.

The next therapist I saw was the one who had me put on my first Antidepressant. I was almost eight, and Doctor Baca decided I was depressed. Likely he was right but he never let me address why. He wasn’t a listener but talked about how I needed to try harder in school, how I needed to bathe more, how I needed to do things to be popular. If I got a word in edgewise he used it to shame me. I had begun to develop breasts, and upon relating the nickname I had at school, because my bra broke in Phys Ed, he agreed. I was slut shamed. The Nickname is not related here as it reveals the name that I have shed, but it contained the word whore.

The list of bad therapists goes on and on. No person is perfect but even the best amid them just wanted to label me. Many tried dangerous tactics and all of them post Doctor Baca insisted on medications. I took so many pills, and many had adverse effects including causing me to gain 100lbs in a month, but, the pills were more important than the girl. Each doctor took any crying as a sign not of emotional release but of depression. If I was happy at all it was a manic, if I was angry it meant I was psychotic. I lost touch with emotion itself.

My response was to try and kill myself, though, I couldn’t figure out how and asked my mother to help. The first time wasn’t the cause of my institutionalization, though the threat was leveled. I just didn’t comprehend it. The suicidal ideation passed and yet my brain warred to follow the rules that were leveled at it. My needs were far from met, and my Autism being undiagnosed meant I had no help. I was adrift, and lost.

The worst weekend of my childhood came then. I was beaten to the point of nearly dying, and denied medical treatment. There is much more to that story but it will not be blogged about, my fear of being attacked over it is too strong. My entire life was changed at that moment however. That is the hinge of life for me. That too, is when my personality changed the first time. The direct result of head trauma. That is the weekend where the first breaks in my back were had, my Xrays showing as an adult that when I was about eight I had four vertebrae break in my back, two in my neck. They healed well enough thankfully but I was in agony, I was alone, and I knew that I should not trust anyone ever again.

I was also threatened with food. My father had decided I was fat. I wasn’t yet, I was perfectly healthy, but he decided I should stop eating. He also instructed me to cut myself, though I did not manage that one. I did manage the eating disorder. He had told me too, if I did eat he would know and would beat my mother to death. I had to protect her. She always has needed my protection. So I gave up food. It was not hard, due to the pain.

Pain is the best appetite suppressant I know of. It kills the urge to eat in me, and is the reason for many people becoming malnourished with access to food. I lied to my mother the first few days and told her I wasn’t hungry, but, then she told me my refusal to eat hurt her. If I didn’t eat she’d surely die. Catch 22. No matter my choice she would die. I decided to eat, then, I would just throw up after dinner. Then my “daddy” couldn’t kill her and she wouldn’t know so she wouldn’t die.

This worked for a while, and my stomach stopped hurting and my skin even healed from some of it’s symptoms of allergy. I was however, bulimic by the diagnostic standard. No one asked why I was bulimic at the tender age of eight. My family didn’t figure it out very quickly, but, eventually they did. I am sure I had a decline in health. My memory was very foggy, and I had begun to have bursts of rage. Perhaps this came from the head injury, the painful seizures that I had started to have, hiding everything, or the burden of the household falling to an eight year old girl. It could even be the bulimia, the overdosing of drugs by my doctors, or, all of the untreated genetic ailments.

My stepfather had begun molesting my older sister, he was too afraid of me to hurt me, so I shaved my head. We discovered then how misshapen my skull is. My skin had begun to split on my breasts, and I thought if I was a boy then I would always be safe. I was of course unaware of the stigmas that were to come, but, I thought being male would make it all better. So, I tried to cut my breasts off. I failed, and for that I am grateful now. I am not sure what the therapists told my mother about all of this, but, from my perspective no one took into account that something might be wrong physically or that the abuse took a toll.

I was taken to a hospital, dumped off, and my mind and body were invaded. I do not know why these doctors thought a physical examination was necessary my first night there, but, they gave me a complete physical, including a pap smear. There was no explanation, but, I lashed out. My first night there was spent in the padded room of solitary confinement.

Diagnosis were tossed at me like darts at a board, seeing if one could fit close enough. Most of the girls there were suicidal, all of them had been molested or raped. Each of them had been battered, and all of the children were in pain. The staff were not all kind. One of the male staff would hit me, but I never said a word. He told me if I did, he’d see to it that I did not get to see my mother ever again.

My hair is also complex. Only half of it is curly, and this is all in the under hair. I had to bathe twice a day there to pass their cleanliness challenge, because of the Hidradenitis Suppertiva causing excessive sweat. I was allergic to the shampoo and cried each time I bathed. They gave me more antidepressants.

I mentioned once, how much my body hurt to the doctors there. I was quickly learning though, that all they wanted was for me to suddenly become a normal child. I wasn’t sure what that meant but noted what the children who got to go home endured. They could not yell, they could not scream, they ate every meal but not seconds, and they were nice all the time, if the adults were looking. I began to master the system. This meant no crying, so I got even better at being a machine. I let my world fall into their system of order.

I did go home, but, I couldn’t keep up the act of perfection. So, the cycle hit over and over again. I still couldn’t eat but was gaining weight. I was shamed for it. I was stuck then in either my mother’s clothes or sweat pants. Time passed and I was a teenager. My first period came on the eve of another hospitalization. I thought I was dying. The inability for people to discuss this function without clinical talk or shame had cost me knowing that this was going to happen. It didn’t help that my mother had told me all about how evil my Uncle Verne is. Verne is a rapist, a pedophile, and of course he would surely be out to get my mother’s children.

She had me stay with my grandmother while she made arrangements to have her crazy and devalued daughter locked away. My uncle called. Grandma had left me alone, despite my mother’s very valid fear that I would kill myself. I was considering it staring into her medicine cabinet when the phone rang. This was before caller ID hit that small town. I thought it was my mother. I thought maybe she had realized that the kids at school were mean, my hands hurt, and so did my stomach and I just couldn’t live like that. It was a strange voice. His voice was raspy, cold, and hearing me he sounded suddenly excited. I talked with him for a while, until I realized who he was. We didn’t trade names but when he called me by mine, I asked if he was my uncle.

There it was again, that duality, I was told by my mother that upon pain being dealt my way, I must never be rude on the phone. I was also told I must never let my uncle know where we were, who we were or to hurt me. I was terrified. Then, I felt warmth running down my legs. I remember what I said, “I am sorry Mr. Uncle Verne, I have to go now. I will tell my Grandma you called.” I hung up and went and sat in the tub crying because I was bleeding.

I thought that I was going to die, which, saved me from my suicidal thoughts. It was partly there because so often I was asked if I wanted to die. The idea wasn’t original to me, though I may have wound up having it anyway. I am not blaming the doctors, as without them I still would have died, I am merely questioning their methods. For every emotion there was a label, a drug, and a punishment.

For my fear of my period I was told I was a misogynist. I hadn’t even known what that was, but, upon being told I hate women, I thought it apt. At that time I wasn’t aware that self hatred is not the same, and the over labeling and medicalization was helping me to dehumanize. I was instead a child trying to make people love me. At this time my memories of my Sensei had been suppressed, and yet the mark of them remained, I was subconsciously seeking that same love.

The rest if my timeline, up until the Ranch, mentioned in earlier posts, is a blur, a mix of self hatred, cruelty, and a few bright moments when I went off the medication without telling people. Not all of my memories were destroyed by the meds, and the medicine did help me learn to control my flashbacks. I was so lonely however, unable to make contact with myself, isolated, and then something amazing happened. My freshman year of Highschool, I became the Valentines Princess. In my school this was on par with the popularity contests of Home Coming Queen or Princess and Prom Queen. My classmates elected me, and openly made this truth known, because of the simple fact that the most popular girl in school was pregnant and did not know who the father was. The pregnancy was not the issue, many other girls were pregnant too, it was the culture of this town. If you were not sexually active you were not acceptable. It was that she had cheated. Perhaps it was a form of slut shaming, but I was only aware of the fact that I had won. I had been chosen to represent the beauty of my class, a symbol of the perfection of love.

These memories are so crisp, as is the memory of my sudden happiness ending, realizing I had to tell my mother that I had won and needed a dress. There was no way I could take the title. I went to tell the coordinator, another student in my class and she found me first. She had already talked to the other wealthy students, and they were going to pool their allowances to buy me a dress, a trip to the salon to style my hair and they were going to have my hair done. They also were going to give me a free ticket to the Dance. At this point, my mother had left my Step Father, and money was so tight we could barely afford food. When I told her however, I expected anger and was given joy. She was happy for me.

We went through the rituals of beauty, I even shaved my legs, ignoring the pain that caused. We had my hair done, and, when I walked out with my Tiara in place, taking the arm of the boy I thought was the most handsome in school, ignoring his displeasure at being my escort, I stared out at the people in my school and was given a moment of joy. No one booed. I had expected that, after all every day I was on the outside. I kept the roses the principle bought each of the Valentines Court members for years, only shedding them when I no longer needed the reminder of my value, for I am worth more than roses and a popularity contest.

When I told my therapist about the feelings I had had, he told me I was becoming a narcissist. He berated me for every single feeling, and I went back on the meds. I was so certain he was right, and that my mother was too. The messages given to me during these visits to the psychologist were all so negative. Tomorrow I am calling and making appointments again. I am an adult now, perhaps, this will free me from some of the pain I feel. Perhaps I will find one who is willing to work with me on how to emotionally survive my physical pain. If I am offered medication my first visit, I will not return to that doctor.

I am still fighting for my humanity. I grew up meeting and failing expectations, never making my own. I am an adult now, and my own expectations are met. Yet when I cry, even at the end of a sad movie, I question, evaluate, and judge myself. My crying is the hardest, it is the most difficult for me to allow. I have come to embrace Happiness, anger, jealousy, but sorrow is the biggest terror. Even in the media we face the words of stigma. Pharmaceutical companies, doctors ignoring the validity of emotion, deranged fathers, and depressed mothers (Feel free to rearrange, relabel, or adjust these two for your own needs) all collude against humanity.

This is not the only way that people are dehumanized just one example of it. There is something in the air, something in the water, or perhaps just a tradition diluted with time that has caused dehumanization to become far too common. Civil Rights are torn away from people based on their supposed inhumanity, the disabled are not granted access because we surely aren’t human. I tried so very hard to shed my humanity, yet without it I cannot sing, I cannot write, and I cannot breathe.

I am afraid of psychologists. What if they refuse to not try and force me to take drugs? What if it turns out in the future I was wrong and needed the antidepressants? The consequences of these choices are the real fear. I fear too, that my next psychologist will refuse to see my pain as real. The wheelchair is not enough for some people, or it is too much. I will be writing a how to article on shopping for psychologists, after I am done, detailing my method. I will share it here.

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.

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?

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