Diagnosis! Gotta Catch’em all!

I am in an emotional upheaval. I found out today that Block Insurance does not have any non Walmart Eye doctors. All of the numbers they gave me were between disconnected or offices without actual vision care professionals. I also was told to choose between Walmart and Eye Masters which is the Walmart of eye care. Would you go to Walmart for diagnosis and treatment of anything medical? I won’t. I want options. I want to see a doctor I trust, not Mr. Walmart Doctor.

I spent several hours on hold, trying to get an appointment. My right eye has an existing hole in the retinae, but no one wants to treat it. Now that hole has some little friends. I can see them, the spots grow and most of my vision is gone in that eye. I can barely see my monitor, and am defendant on the Windows built in Magnifier to see. I no longer read paper, I can’t see it. I no longer watch TV. I listen to it. I did reach the point of yelling on the phone.

The conversations were comically inept. “Thank you for Calling Block Vision, what can I do for you today?” “Yes, I am calling to try and find a provider. I …” Interrupting me, “Did you use the automated system?” “Yes, and the numbers were either invalid or the offices wanted to charge me despite my qualifying for zero copay. I also am not comfortable with Walmart for my eyecare needs. I have some advanced care issues.” I made a mistake. I admitted I need more than they want to offer.

“Spell your name.” I did. “You can’t spell your name like that.” Since it is my name and has been for a long time, I would not know how to spell my legal name. My last name is the issue of course, not the first. I spell it again, and get the same response. I am done. I want to make this person cry, I want to rain fire down upon them. Instead I take a deep breath. “Could you please transfer me to someone else?” I did not ask for a supervisor yet. “If you cannot calm down I am goin to hang up on you.” “I am calm, I just asked for you to transfer me to someone else, I do not think we are communicating well.”

She hung up. I kept getting the same person too, and after six calls I let go. I was already in tears so I screamed. I cussed. I told her exactly how good she was at her job, and since they claim to record these conversations, I hoped her bosses listened in and fired her. Not my best move, but, being treated like crap gets to me. The last thing I want is to be blind, unable to move, and unable to hear. I am being told that all that I and anyone else who is on Medicaid (mostly children) deserve is WALMART?!

Walmart screws up everything. I want a real doctor. Not some brainless person who barely managed to graduate. I want someone I can put my faith in. Wouldn’t a real doctor be hired somewhere else? I am not saying that every doctor gets the cushy jobs but I want access to the doctor of my choice or at least a variety. I do not want to be told I am insane for desiring trust with my medical professionals. I do not want to be told I have to pay out of pocket because I am low income and have other medical issues. I want medical care.

I want to see. I miss being able to see the faces of my friends clearly. I miss being able to see far enough to give safe directions. I do not drive but, shouldn’t I be able to see the end of the hood? A van doesn’t have a very long hood. I also want to do more than push and push to try and get proper care. I am so tired. I am tired of having to advocate. I have been advocating for people and fighting my entire life. I have always been the caregiver. I want someone else to do it.

This doesn’t work however. I can’t just stop advocating. I can’t because I do not know how. I instead took the time to calm down enough to call the Governor. I left him a voicemail along the lines of this, “Governor Richardson, I am a voter who encourages others to vote, “I always start out with the secret threat that if you do not help me I will not vote for you. “I have been trying to find an eye care provider.I recieve SSI benefits and am on Medicaid via the COOLTS program. You have influence here, the program has farmed out their providership for vision care to Block Vision. Block Vision is only allowing a selection from Walmart and Eyemasters doctors, I cannot get an appointment with them and my vision is degenerating. I need your help to fight for your constituents.” I left my number, and I know I should have been calmer but my voice likely gives away my frustration and the fact that I have been crying for the last few hours.

I cannot see. I am thankfully able to type with my eyes closed but there are errors. What if I wait too long to see someone and wind up unable to save my sight? I am not faithful in the system. Right now I am afraid I will be deaf, blind, immobile, dealing with the Autism, and autoimmune. I have one of every type of disability, it seems. I am losing hope today.

If I want to pay for my eye care out of pocket, I can manage that how? They want more money than I get a month. Why are we choosing between Rent, Medicine, or Dental/Eyecare? Why is it you can eat but not see. Oh wait, I can’t afford food. I am a celiac. Silly me. Bread is at least seven dollars. I don’t buy bread. I don’t buy anything beyond just enough meat to survive. I am HUNGRY but there are no food programs that can accommodate my allergies. I am greedy to want that right? I am greedy to want someone to help me. I am greedy to want a break from advocacy. Right?

No matter how many other advocates there are, I feel alone. I feel as if there is no where to turn. I have to do this alone. I have to do this by myself. Who can I ask for help? What would they suggest that I have not done? I am all alone, as every advocate is at some level. There is only so much you can have someone else do for you.

It isn’t hopeless. I am after the jobs of the employees who hurt me today. That means someone else can be hired if they are fired for their incompetence. This might seem cruel, but, isn’t it just as cruel to mock someone for wanting medical care? It is just as cruel to treat someone like garbage because they are disabled. I have HUMAN rights. I have CIVIL rights. You want to mess with me? Go ahead. I bite.

Edit and End Notes:
I do not care what your God or Bible says about being alone either. I have been preached at, as if somehow my choice to not pray every time some idiot steps on my civil rights is my fault for being a non believer. I do not believe religion has much bearing on the affairs of the state. So, yes, this is a snarly article, and yes I admit I messed up by yelling and plan to keep fighting but leave your god out of my life. I haven’t needed your god to chance things for myself before, I will not need YOUR god now. Thanks for respecting my religion.

It is not religion that is shared when you ask an opinion or vent to me. I offer ideas. I do not expect you to worship me, my gods, nor is this the same as pointing out that I surely would feel better with YOUR God receiving my prayers. Seriously, are your gods somehow starving to death or something? I know plenty of people in those religions who are. So keep religion out of it. You won’t find my religious identity posted clearly anywhere.

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.

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