Thursday, June 25, 2015

Tips for Managing Life with Chronic Illness

There are some things that have helped me greatly improve my life; there are also things that I've done which made things worse rather than better. But overall, for the past ten months, I've been doing better than I have in years. So I thought I'd write some of the top things that have helped me. These are things that can help with any chronic disabling illness, not just the psychiatric kind. I have physical disabilities as well as the psychiatric ones, so I understand all aspects of living with invisible disabilities, and how hard and stressful that can be. Chances are, if you've come to this blog you're looking for answers and help. I want to offer some.

1. Realize that you will never be able to do every single thing you want to do in life. No one can, but especially not people who are sick and have limitations. I say this because it is probably one of the most important lessons illness (or "stillness", as an old friend used to call it) has taught me. It is important to accept that you will have things you want to do that you won't be able to do. This is especially pertinent for "Type A", perfectionists who want to do a million things every day (this is me). Once you accept that you have limitations, you can start managing life accordingly, and once you do that, it will help you get rid of some of the stress put on you by trying to do too much. Stress makes symptoms worse.

2. Remember that you can still do many things that you want to do; you just have to manage your time and energy a bit more than most people! I say this because, even though we must accept our limitations, we also must not give up on our hopes and dreams. Hopes and dreams make life meaningful. So accepting limitations does not mean assuming you must do nothing but lie down and wait to die for the rest of your life. When you're first diagnosed with a serious illness, it's heartbreaking. Or sometimes you will be sick for years and not even know you have an actual illness, and that's extremely hard too. Horrible things happened to me in my life when I was undiagnosed as Schizoaffective, so I totally get that actually receiving a diagnosis can be a relief. It's also depressing though. So don't let it ruin your belief in your future. We all have a future. We don't know how long it will be for, or what will happen in it that we cannot control, but we all have some kind of future, however short or long.

3. Set goals every day. It's important to get out and do things when you can. If you're sick physically, sometimes it's very hard due to fatigue and pain (I know) to get out and do things. I wasted some years in bed most of the time. I will never go back to that. At the time, I was quite ill, but I fell into the belief that ALL I was, was ill. I believed I couldn't function physically, so I laid in bed. All the time. And that was a huge mistake. I was also psychotic during that time and undiagnosed, not on meds, so that was part of the problem. But I will never just give up again. If you're stuck in bed a lot, at least try to go get your mail. If you can walk, go for a short walk outside in the sunshine. If you're dealing with mental illness and everything overwhelms you, set a goal to do something that you can manage each day. Small goals, like taking a shower and getting dressed are all some people can handle. Others will have larger goals that they can take on. I find that once you meet some small goals, the larger ones become a lot easier to achieve.

4. Eat when you're hungry, sleep when you're tired, drink water when you're thirsty, take meds if you need them. Simple things are important to do. I think setting the goal of taking care of yourself each day is very important. I recently had a moment when I came to the realization that I am taking care of myself because I care about myself. Repeat. I am taking care of myself, because I care about myself. This was a huge moment for me. It followed with guilt, so I fought that thought, and said, "Why do I feel guilty about taking care of myself because I care about myself?" My therapist often asks things like, "What would it feel like to not feel guilty?". So I told myself, "It is not selfish or being self-centered to care about yourself. It is vital to living, and it is not something to feel guilty about. I do not NEED to hate myself for my entire life". 

5. Change your diet if you haven't already. It's hard, I know, but getting a lot of fatty, sugary junk food out of your diet will almost always make a lot of illness symptoms get better. Eating vegetables and fruits, drinking water, making green smoothies with vegetables and fruit (I know I've mentioned this before), not drinking soda, not eating candy or junk food or a lot of meat (I don't eat any meat but seafood), and looking at the ingredients of what you're about to put into your stomach before you eat it, are all good (and hard) habits to make. Eating fast food and diet dinners all the time went out the window for me last summer, after I realized that not only was it unhealthy, I could NOT afford to do that financially anymore. I started watching what I eat carefully, got my Diet Pepsi/Diet Coke addiction out of my life, started making green smoothies many mornings for breakfast, started drinking green tea sweetened with Stevia instead of diet soda, and eventually lost almost 65 pounds, in the past ten months.

6. Get some exercise. I know people used to tell me this and I found it insulting because exercise physically hurt and exhausted me so much that I thought I couldn't do it. But I started going on short walks, then longer walks, then even longer walks in the past ten months. Then I joined the YMCA and started going there for exercise, because it's awfully hot to walk outside in Florida in the summer, and because they have a pool there where I do water exercise classes which are much better on the Osteoarthritis in both my knees and the Fibromyalgia in my whole body than walking all the time is.

7. Look into any alternative medicine therapies you can afford which have been tested and proven to help with your particular problems, if there are any. I can't afford much in the way of alternative therapies, but I take fish oil because it's good for the brain and for the joints too, krill oil because it's good for the inflammation, a multivitamin/mineral supplement, and a lot of B vitamins everyday. Also, I take melatonin every night for sleep, along with my meds, which brings me too....

8. Make getting good sleep your top priority. We spend half our lives sleeping. It is not small matter. It is a big part of physical and mental health. Following sleep hygiene guidelines, like not having a TV in your bedroom, going to bed and getting up at the same time everyday, not keeping lights on at night, not doing anything other than sleep in your bed, etc., will help with insomnia. I didn't believe that for a long time, but that, along with major meds for insomnia have allowed me to sleep better. I used to go days on no sleep at all. It was hell. Research has shown that insomnia Schizophrenia/Schizoaffective Disorder are linked. Also, physical pain gets way worse when you get no sleep. I think getting a good night of sleep is one of the most important things you can do for yourself. Trust me, it makes a world of difference! 

9. Eliminate as much stress as possible. This is hard, but extremely important. Some things you can do to eliminate stress are going to therapy regularly, or attending a support group regularly, getting a manageable workload if you have a job or switching jobs if you have a really stressful job (I had one, no longer), and managing your relationships with other people.

10. Get toxic people out of your life. This is very important. I still have a toxic person in my life, but another one I got out of my life a few months ago, and it's been a huge relief. I was spending hours with this extremely passive aggressive, self-centered person on the phone every week, and it was making me so miserable. I would mention that I couldn't stay on the phone with her all the time, and she would whine and put a guilt trip on me for it. She's extremely immature, and my contact with her almost always made me miserable. I couldn't take it anymore. So I finally flat-out told her, "I think you have Borderline Personality Disorder and you need help". She didn't want to talk to me again, which is good, because I definitely don't want to talk to her again either. So that was that. It might sound mean, but you don't know how mean this "friend" was to me with her manipulation and mind  games. I don't have the time and energy for that crap! I have a life to live, and I would rather live it than revolve it around someone else's dysfunction.

11. Set boundaries with toxic people you can't eliminate from your life. For that matter, set boundaries with everyone! This is important. You do not need to be or have to be the be-all, end-all of someone else's existence. I have someone in my life who still puts me in this role, or at least tries to, and she's been doing it since I was born. It's a bad situation, but it's gotten better since I started learning what boundaries are and how to say that I will not put up with certain things, such as verbal abuse. I've learned when to not answer the phone and when to hang up the phone. And that helps. 

12. Get a pet! Adopt one from a shelter! There are so many animals who need homes in this world, and I cannot express how rewarding it is to have one in your life (or two or ten) who will love you unconditionally. Pets give you something to focus on. For example, you must walk dogs and feed cats and dogs and change cat litter boxes. Once you realize that, then of course you have a reason to get up in the morning. Pets are also so soothing and comforting. I don't know what I'd do without my cats.

13. Practice mindfulness. Go out and enjoy nature, sit outside, walk through a park or on a beach, listen to music, eat without watching TV or anything else while you're eating and just focus on the fact that you're eating. When you're washing dishes, focus on the fact your washing dishes. Use your "wise mind" as they say in Dialectical Behavioral Therapy (looking up DBT might help you if you haven't already). Meditate if you can. Sit in a quiet space and focus on your breathing, breathing in and out deeply for a few minutes. This will help you relax and help you sleep. I used to think I couldn't do it at all, but with practice I learned to relax a bit. Read books by people like Thich Naht Hahn.

14. If you believe in God, go to a church, or a synagogue or mosque, etc. If you're like me and don't believe, you can still go to a church such as a Unitarian Universalist church or you can go to humanist/atheist meetings in your area (there are some you can find on Having some spiritual place or just connection to other people in general can help.

15. Turn off the TV and find something creative to do like writing, making crafts, sewing, painting, drawing, etc. You don't have to be a professional writer to write or an artist to do artwork. It can help you relax and make you happy. TV makes me feel worse if too much of it goes into my brain. I haven't had cable TV in about two years; I don't miss it, and I can't afford it anyway.

16. Turn off your computer, your phone, your tablet etc., and do something else. I find that staring at screens too much makes me tired and in pain physically. I get really horrible pain in my shoulders from just doing things like typing this post you're reading write now. If I sit at a computer too long, I hurt. I don't want to hurt all the time. So turn it off, and get back to basics sometimes!

17. Call someone. I'm not good at this. I almost never call anyone at all other than a family member, and I never have had many friends in the first place. But if you have even one friend or supportive person in your life, reach out. Try not to isolate too much. I need a certain amount of isolation, because I can't handle being around people all the time, but too much isolation depresses me and makes me lonely (and I'm lonely a lot).

18. Keep a journal. There are so many kinds of journals one can keep. A  gratitude journal where you write down anything you're grateful for every day or every week helps some people. You can go back and look at it when you're feeling hopeless, and remember all the positive experiences you've had. A synchronicity journal is where you write down amazing things that shouldn't have happened but someone did. A journal of the foods you eat can help you track what is aggravating your physical symptoms, even some mental symptoms. A journal of your feelings or experiences or daily events or just your thoughts or the things you want to talk to someone about when you have no one to talk to - all these things can be useful.

19. Read books by SARK . They're inspiring, creative, and will help you. They take very little concentration to read, and they're very easy to follow and understand, whilst being full of self-healing tips.

20. Learn about your illnesses. Study them. Do research. Join support groups - online or in person. Find out what works and what doesn't work. As the saying goes, the struggle is real, but once you have information you'll be far more empowered than you are without it. Also, if you don't look up the side effects for medications you're on, you might get put on something else that is just to combat a thing that is a side effect of another medication you're already on. This has happened to me. Information is power, and doctors don't usually spend a lot of time with us or have a lot of time to do research on our individual symptoms. I'm not saying Google everything, but learn. I think walking into a doctor's office uninformed is one of the worst things you can do to yourself.

21. Go to therapy. Enough said, it helps.

22. Take a shower every day. Wear clean clothes every day. Brush your teeth every day. Brush your hair every day. I know when people are really sick it's easy to not care about such things, but once you do them, it really makes you feel better about yourself. I used to go to work without showering, and I didn't care because I was so apathetic all the time. I've read posts by people on Facebook saying they don't brush their teeth at all or that they can't take a shower at all. You must make hygiene a priority. Trust me, bad teeth aren't cheap to fix and neither is getting them pulled out of your mouth.

23. Get out of toxic support groups. I had to leave one again recently. It was an online group being moderated by someone who constantly brags about their illegal drug used and recommends it to people, and who does other dysfunctional and mean things to people in the group. It's not a support group; it's a dysfunction group. Many people would go there to say that they felt suicidal and then wait to see how many people said, "don't do it!" because they are so passive aggressive and attention-seeking. I think it's cruel and unfair to others to go on the internet and let people assume you've killed yourself so they have to track you down and send the cops to your house. What kind of support group even allows anyone to do that? I don't want to be part of such a group, so I removed myself from there. If you join support groups online, make sure crap like that isn't going on unchecked.

24. Set your intention for the day every day. Get up, think, "I will........" or "This is what I'm going to do today......." etc.

Okay, this post has reached it's time limit. I have a therapy session to get too!

Wednesday, May 13, 2015

Sexual Assaults and Rape Prevention Tips (something I wrote went viral and I have a new blog)

In 2001 or 2002 or 2003 (I don't remember exactly when it happened), a guy I met on the internet on a dating website, took me to a motel. I was psychotic, and I thought that I had no choice but to go with him, due to my delusional belief that if I did not obey certain people, I would be burned alive in the upcoming second Holocaust, that I believed was going to happen for seven years of my life.

He raped me in that motel room.

It was after that experience that I wrote a list of "rape prevention tips" which has, over the past twelve years, become famous.

I did not really realize it had become famous. I'd see people's postings of it on the internet for a while, and then, a few weeks ago, I was contacted by an editor for Buzzfeed, who said they wanted to make a video about my writing which had gone viral. I did not think this email was coming from Buzzfeed, because I was paranoid about being stalked, and I assumed that it was from some hacker guy who was trying to make fun of me on the internet for something I had written twelve years ago.

In actuality, the email really did come from Buzzfeed. I talked to the editor on the phone about a week ago. I have since looked on line, and low and behold, my writing really did go viral. It went viral because the comedian, Sarah Silverman, posted it on Twitter. Her post was an edited version, that was put online by someone else a few years ago. My website, where the original list was placed, is no longer online actively, but is archived, and was found.

Apparently everybody I know on Facebook has read my writing and did not know it was mine. News to me.

So I decided to take credit for my writing. And here is the blog I just created to do so:

Rape Prevention Tips.

I'm not going to sit  around and not take credit for my own work. It doesn't say anything about me being assaulted in it. It never did. My own family does not know about the three times I was assaulted while I was psychotic, and even if I wanted to tell them, none of them would want to know. Other people would probably assume it was a delusion. I wish it was. It never was. It happened to me once in Virginia and twice in Florida. During a 2-year period. While I was so sick, I did not know who I really was, but I knew very well what was being done to me. And I never  forgot. I remember the places, if not the exact dates.

This is complicated by the fact that for a long time, I believed I had been sexually abused as a child, and then later, I said, "I imagined all that". I'll never know how much of that was really imagined. I do know I was paranoid and that I thought things that there was not a lot of evidence for. But the things that were done to me as an adult, I remember quite well. And I never told people about it. Ever. Except to say things like, "Here is a link to the Ani Difranco song Gratitude", on this blog. Even on this blog, I didn't tell people what had happened to me. But it happened. And it's not right, and it's not fair, and it happens all the time to women who have mental illnesses and women who don't. It doesn't matter who you are or where you live or what you're doing, sexual assaults do happen. And they happen more often than anyone really knows, because so many of us are shamed into silence.

When I was assaulted in Virginia, I did go to the emergency room. I went and a friend - the only friend I had in Virginia - met me there. I did tell people then. I was examined and tested for STD's and pregnancy. I was put on the morning after pill (Plan B), which I had to go to a specific hospital to get since most hospitals do not even give it out, sad to say. I talked to a police officer, but I was so upset, he pretty much decided for me that they wouldn't pursue and investigation. I couldn't handle it then. If it happened to me now, damn straight there would be an investigation. But then, I couldn't handle it. People take advantage of vulnerable human beings living with mental illnesses And so, then, I became silent. I have not talked about it ot hardly anyone, especially since I've been "better" enough that I didn't want people to think I was claiming to be assaulted again like I had before, when I was not "better". I still am "better", I'm just writing this because I didn't do anything wrong. I didn't make that guy assault me. I didn't make the other two either. I was simply trying to survive in a world that was making that pretty difficult to do. If I had not been psychotic, maybe it wouldn't have happened, but that is really not the point. The point is that no man has the write to assault anyone, ever. Period.

I won't be totally silent now.

Monday, May 11, 2015

When family holidays are a nightmare and you get to be treated like the outcast even though you were the one who got treated like garbage more than anybody else

That is me when I was three years old.

At that age, I loved Sesame Street and cherished my red and white plastic record player. It was 1978. My mom and I would sing the Oscar the Grouch song, "I love trash; any thing sticky! Smells like Jenny" or "Smells like Mommy!" I know this because there was a casette tape recording of it I used to have, as an adult.

My earliest memory is of her blowing up, as she would call it (as in "sorry I blew up again"). We were in my bedroom, in our apartment in Baltimore. She was in a rage. She was taking my toys and throwing them across the room. I was cowering, probably in the corner, or backed up against a wall. I always cowered during her rages. She took my cherished Sesame Street record and snap it in two or three pieces, then threw it across the room. I was crying, I'm sure. I was terrified. The words that came out of her mouth during these times never changed much over the years. They were always, "I HATE YOU!! I WANT TO KILL YOU!!! YOU RUINED MY LIFE!!!". Twenty years later, I still heard those words. I lived with her, most of the time, until I was 23.

I hate you.

I want to kill you.

You ruined my life.

And it would always be this way. Now those words are still in my mind. They just take a different form; they come from the head into the gut, my own voice saying them. "I hate myself. I want to die." It's not like I consciously choose those words. They just pop up, from the ether, from the place of old cassette tapes in your head.

When I was five and almost six, my brother was born. By that time I was already a skittish child, very insecure in kindergarten, sure that the other kids wouldn't like me. But I don't remember consciously hating myself yet. That would come later. We moved to Florida that year, for my dad's job. The next year, my sister was born. I considered them "kids", even though, by all adults' points of view, I myself was still a kid. At the age of four, my grandmother used to tell me, I was in a basement at a relative's house with some of my cousins. They were all a little younger than me. I was the first-born child and grandchild. Some adult yelled down to ask, "Who's taking care of the kids??" I yelled back, "Don't worry; I am!" I was four. I already knew how to take care of people. I started taking care of her before I knew what taking care of someone was.

When I was in first grade, we had a meeting with my teacher, which enraged my mother. I had thrown out my stories, as I've mentioned in a previous post, because it hadn't occurred to me my mother would want to read them. She was immediately angry, and I knew it. I defecated in my pants. I remember her in the bathroom, screaming at me, "WHAT IS WRONG WITH YOU??!! WHY WOULD YOU DO THAT??!!! WHY WOULD YOU THROW OUT YOUR STORIES AND MAKE ME LOOK LIKE A BAD MOTHER??!! WHY WOULD YOU POOP YOUR PANTS??!!" As if I had made some conscious choice about what a wise idea these mistakes would be.

When I was about nine, I remember her calling me a "fucking bitch". She screamed it at me. We were in the car on the way to our Pentacostal Christian church. "You FUCKING BITCH!!" She slapped me on the face. I sat there, in stoic silence, the way I always sat there in the car with her. My brother and sister were in the backseat, so I told her not to use those words, I think. That was a mistake too. Then we went to church, and as soon as we got there, she had her smile on. She was a good Christian mom, after all, with three Christian kids. So good of her to dedicate her life to Jesus, even though her Catholic husband was going to burn in hell because he wasn't saved by God. That is what they taught me in that church. I consider that religion a form of abuse, too, by the way. I went to Christian school for seven years, Christian church 2-3 times a week. I always wondered why the people were so phony. Later, I'd become an atheist.

I was 13. My dad moved out. She blamed it all on me. I was to blame for every bad thing that ever happened in her life. If something went wrong, she blamed me. "YOU ALMOST MADE ME GET INTO A CAR ACCIDENT AGAIN!!!" was what I'd hear, every time she almost hit a car. My whole life. It was my fault my dad left, she said. I had done it. I had done everything wrong, every bad thing was always my fault. One day, in her rage, she pulled me up the steps by my hair, pulling out a clump. Another day, she punched me in the head repeatedly as I sunk down, low against the wall, trying to cover myself under my arms. She was beating me like she really was going to kill me. My dad roared up the steps. He grabbed her, put his fist up to her face, screamed at her. That was why children's services ended up being called - that day. A lady came to our house one day shortly thereafter. I figured out who she was. I'm not sure now how I knew, but the window was open, and I could hear my dad talking to the woman about my mom. I was scared. I thought I needed her, as my dad had left us all. He had left me to live with her. (I never forgave him for that for a very long time.) When I told my mom that my dad was trying to get children's services to take me away, she made me call him at his apartment. She stood there and forced me to say, "Mom did not really hurt me. She did not mean to hit me." They never took me away.

Around this time, the three of us kids would be dropped off at my best friend's house a lot by her. She would leave us, and go do whatever she had to do; she had gone to court reporting school to try to get a job because my dad wasn't giving her enough money to take care of things. Often, she'd never come back to pick me up. I'd be abandoned at my friend's house. She'd say she "forgot". It was awful when this happened, and I had to spend the night, because I wet the bed every night until I was 14 years old, so I couldn't handle sleepovers at my friend's house, and everyone knew it. I remember my friend and her brother laughing at me, when my mom had them come over to clean my bed off for some reason. She had told them that I wet the bed every night. She often screamed at me for that, too.

She always yelled at me to clean. I never did enough housework. I never took care of the kids well enough. By 13, I was helping to raise them. I would say, later, I never wanted kids since I already raised two.

Age 12 was when I went on my first diet. By 15, I was anorexic. By 17, I'd starved down to 83 pounds. I still thought I was fat. She had told me that too. Age 14, "Your head is too big for your body; you look deformed. You like like the Elephant Man!" "Your butt is so fat it's disgusting".

Then she wondered why I stocked up on hidden supplies of diet pills (Dexatrim), and laxatives.

I never cleaned well enough, and anything was a reason to yell at me. So in high school, when I got excellent grades as an honors student, I'd hear, "MAYBE IF YOU DIDN'T SPEND SO MUCH TIME DOING YOUR DAMN SCHOOL WORK AND CLEANED UP AROUND HERE OR HELPED ME WITH THE KIDS MORE YOU WOULDN'T BE GETTING STRAIGHT A'S!! YOU DON'T DO ANYTHING TO HELP ME!!! GET OFF YOUR ASS!!"

I did all our laundry. I cleaned the house. Sometimes I even cooked all the food and made sure the kids got to school. This was all by age 15; I was doing all of this by then. We didn't have any money,. since she didn't get alimony, and she didn't work because she was in college trying to get a degree, so I'd take my babysitting money, walk to the store, and buy a gallon of milk and a loaf of bread for us. My dad didn't understand why it bothered me that he'd taken all his money and moved into a fancy house in a ritzy neighborhood with his new wife and her daughter. His new wife also treated us like garbage.But I didn't go to his wedding (because it would have hurt my mom's feelings if I had).

She went to 12 Step meetings when I was a kid, called Al-Anon. She went because my dad was an alcoholic and so was her dad. She took me and the kids. I'd go to Alateen. They went to Alatots. Around age 14, I was in therapy with somebody she met in "The Program". She'd interrogate me afterwards about what I said in the therapy sessions and if I made her look like a bad mother. One weekend I was in some sort of workshop for people from alcoholic families. They had us sit in a circle, and asked us to quietly think about ourselves as children. I burst into horrible sobs. I had never cried like that in front of people before. They were all adults. I was crying, crying for Jenny, crying for the girl I was on that tricycle in that picture, crying for the childhood I'd never had, crying for the present time. I didn't know why I was crying; I just knew I couldn't stop. I'd learn later not to try meditating because it would throw me into a panic.

By 16, I was anorexic and also cutting myself with razors and knives regularly. I kept them hidden in my room. I spent all my time hiding in that room. She'd take the door off the hinges, in her rages, because it had a lock on it, and she didn't want me to be able to get away and hide in there where she couldn't hit me, or throw things at me, or scream in my face. Once, she threw a heavy porcelain duck at my head. It missed me, and made a big hole in the wall. Other times she'd just bang around, screaming, throwing things like chairs at me.


I tried to kill myself the first time while I was 15. She was out of town on some trip with the kids that I didn't go on, because I knew that if I went, the entire miserable experience would be blamed on me. Every trip that didn't go well, every holiday that didn't go according to plan, all of it was blamed on me. "YOU RUINED EASTER. YOU RUINED CHRISTMAS. YOU RUINED THANKSGIVING. YOU RUINED MY BIRTHDAY. YOU RUINED MOTHER'S DAY". No wonder that, now, I hate holidays. All of them.
I took a bottle of her mood stabilizer pills and swallowed them, one at a time. Left a note. I guess I was hoping it would make her care. Or something. She found me and screamed at me all the way to the emergency room. "I CAN'T BELIEVE HOW SELFISH YOU ARE!! YOU JUST WANT TO MAKE ME LOOK LIKE A BAD MOTHER!!"

I'd find out later that I didn't really have to "make" her look that way. Some relatives of ours, back up north, already thought she was pretty bad at it. And they didn't know 1% if what went on.

She had her friends visit her at that hospital. I was in cardiac intensive care, because Depakote, like many drugs, can kill you if you OD on it. They had pumped my stomach and I was lying there when one of her friends from "The Program" (ie, Alanon), came in to ask me the same thing everybody at the hospital kept asking, "Why did you do it?"

I wanted to tell them to try walking in my shoes for a day.

Soon, I'd be seeing my first psychiatrist. He said he wanted me to go into foster care. I told her he'd said it, because I was like most victimized people; I identified with her. Who else was I going to try to get love from, my dad? He couldn't care less what happened to me. She was the first person I'd bonded to in life. I didn't know much about foster care, but I knew they usually took all the kids, and we'd probably be divided up. I didn't want that to happen to my brother and sister, even though she had always gotten them to side with her against me when she could. So I told her. I never saw that psychiatrist again. I never gotten put into foster care. I wish I had now.

I was 21 or 22. I went to a sporting goods shop to buy a gun. I hate guns and always have. This was my first time going near them. I wanted it to end, and I wanted to die. I went in there and made the payment on it. I'd saved up the money at my part time job. Then I went to a motel and spent the night. There is a three-day waiting period before you can take a gun out of a store in Florida. I knew that if I spent those three days near my brother and sister, I wouldn't be able to pull the trigger. So I went to a motel. Then I decided to try one last-ditch effort to get help. I went to a psychiatric hospital, the same one I'd been to at 17 for anorexia, where the doctors had told me I was going to have brain damage from starving myself if I wasn't lucky. I checked myself into the hospital. A day later, I checked out. I never shot myself, of course. I ended up going back to the house. The nightmare house. The house I'd flee from during her many attempts to throw me out onto the streets. The house I'd leave late at night to drive around in my car for hours, in order to escape her wrath. By this point, she was an alcoholic. Later she became a drug addict, or maybe before then, who knows. She took crack, I'd find out later.

I remember, clearly, when I finally moved out. She'd already tried to get the police to take me. They'd come into the house one night after one of her calls, one of those countless calls she made to people in order to scream about how I ruined her life. They'd come in and asked me if I had any weapons. I was lying on the couch in my pajamas, in severe physical pain. I'd been diagnosed with Fibromyalgia and Chronic Fatigue Syndrome and Irritable Bowel Syndrome already. When the police asked me if I had any weapons, I laughed and told them that I was not the one they needed to worry about, it was her. She was the dangerous one. They told her they couldn't kick me out onto the street because "If you want to do that to your own daughter, you'll have to go to court to get an eviction put through." So when I finally moved out, I was 23 years old. I'd moved out for about six months at age 19, but then I felt badly about the kids being stuck alone with her, so I'd come back, back down from my grandparents' house in Maryland, back to Florida, back to her hellhole of a home. And things had gone right back to where they always were. At 23, I moved out and stayed out.

And that was the year I became completely psychotic.

It was from the sanctity of my dad's parents' home that I'd handled her drama then. I got someone to get her out of jail after she got arrested for assaulting a police officer. I tried to get her help for alcohol and drug addiction. I was calling lost distance, handling the travesties that were going on 1,000 miles away, because I didn't know how to be anybody other than her caretaker. That was who I had always been.

I never had a mother. I was her mother. She was my daughter. I raised her. But she never grew up.

When I was living with my grandparents (my dad's parents), my grandmother, who is now dead, sat at her kitchen table and said things like, "Jenny, your mother has never treated you right. Jenny, she was always jealous of you from the time you were born. She was never a mother to you." I should have listened to that more intently. A couple of aunts told me the same thing. But oddly, none of these people were around for the abuse. They never had intervened, and neither had my father. No one had. No one had really cared.

I remember sitting in a high school class with a teacher who was saying, "I know specific kids in this classroom right now who are being abused at home." And I knew she was talking about me, and I felt badly, because how could I have made it my mother look so bad?

At age 24, it was all over for me. That was when psychosis took hold of my life. She'd get clean and sober, and luckily for her she'd stay that way, but she never really changed all that much. The manipulation, the guilt trips, the sob stories, the anger, all of that is still there. So much for "The Program". So much for mood stabilizers and antidepressants, too. What she really always needed was a desire to change for the better. So much for that. So much for Jesus. She's still in Programs. She still goes to the same kind of church. She still takes mood stabilizers and antidepressants. What she has not ever done is go to therapy. She won't do that. Most people go to therapy because they want to change, and are willing to put some effort into it. She never fit that category.

No wonder then, that I don't believe in The 12 Steps. No wonder that I don't have "A Program", although she never stops telling me how much I "need" one. No wonder that I actually do go to therapy - or maybe that is a wonder. I know no one else in my family who does it. Maybe that is unique and a bit surprising, considering from whence I came.

No wonder that I still get those old tapes in my head.

"I hate you."

"I want to kill you."

"You ruined my life."

Yesterday was Mother's Day. I'm not into the whole Hallmark Card holiday bull crap mess. I have no interest in it. It frankly makes me want to vomit. But what did I do yesterday? I went to an expensive restaurant I couldn't afford to eat at, only to make appearances. I went and I paid for my food. I smiled for the camera, because my brother's girlfriend, whose idea this was, wanted to have a picture of it. I bought my mom a dozen red roses and a vase, which I couldn't afford. I gave them to her. I went to her house, because my brother wouldn't; he never was subject to the abuse I was by her, and yet, he does a much better job of distancing himself from her than I do, I guess because he doesn't feel like he needs her as I always have. I got physically sick. I laid down, in her bed, while she was downstairs. I couldn't feel my face; it had gone numb. My bladder was in spasms, and it still is. Stress aggravates all of my chronic health problems, of which there are a great many. No one in my entire family could care less about my chronic, weird diseases that they think I just invent for my personal pleasure.

Here are some of them:

-Sjogren's Syndrome
-Irritable Bowel Syndrome

I am 40 years old, and I've had all these problems for 20 years. Now, apparently, I also have Interstitial Cystits or some other bladder problem. I have to go see yet another specialist this week. Stress makes all of these health problems worse.

And, of course there are these:
-Schizophrenia or Schizoaffective Disorder
-Obsessive Compulsive Disorder

And the fact that I never sleep like a normal person.

She doesn't hit me now. I don't let her; I won't ever let her again, and she knows it. She still has rages, but generally, she keeps them milder than they used to be. I don't know why or how, nor do I care. She doesn't drink or do drugs, and I give her a lot of credit for that, but then, I've never drank or done drugs in my life, and nobody has ever given me any credit for not becoming an addict like the rest of my alcoholic family did.

I try to set boundaries now. When I can. It's hard. But generally, she knows not to scream at me or I'll hang up the phone, and she knows that I won't (and can't) give her money. Not anymore.

We had to go to the restaurant we went to yesterday, specifically because my brother's girlfriend wanted to go there and she is the kind of person we are supposed to Impress. His opinion, and therefore his girlfriend's opinion, matter. Mine doesn't. So I was told not to ever tell them the fact that my mom had taken it upon herself to call my cousin, who had actually for some reason invited me to his wedding, which is something none of my other married cousins ever did (with one exception), and tell my cousin that I was not going to be attending the wedding but that she would like my brother's girlfriend to go in my place. She didn't consult me about this. She just did it. That's how she is. I had made an offhand remark to her about having no money to fly to Maryland for that wedding. Since she wants to make a good Appearance, she took that and ran with it. It's very Important that we Impress people who Matter at all times. It's not very important that we treat the family scapegoat like anything other than a piece of shit. So she did that. Then she called me and yelled about how her nephew (the one who is getting married) had made her really angry by telling her that there was an alternate guest list and that he wasn't sure if my brother's girlfriend could attend. I was supposed to care that this had happened. To my brother's girlfriend, that is, not to me. See, I don't Matter. So yesterday, we're at this fancy restaurant with food that my mom hates, and it's Mother's Day, and I'm there with her stupid flowers, and I'm trying to put on a good show for my brother's Important girlfriend, and my mom tells her, "Wait until I show you the wedding invitation!". Now, I myself have never seen that invitation, which actually had my name on it, but nevermind that. I don't Matter.

Later she told me that my brother and his girlfriend asked if there was something mentally wrong with me again. Nice.

I'm distancing myself from her now. My brother, I don't need to distance myself from him, since I never see him. He has apparently forgotten who was around when he was drinking himself to death, who tried to help him more than anyone else, who searched the entire county for him on multiple occasions, but whatever. He doesn't care to hear from me, and I've got no room to pretend like people who hurt me all the time are not hurtful.

I'm sticking to myself for a while now.

Edit: the year that photo was taken was 1978 not 73, and also in case you get the wrong idea I'm still doing fine and my meds work.

Friday, May 08, 2015

Maintaining a State of Improvement (when things are going well)

Things have been going okay lately. I wanted to write a post about that, about how to manage stress to make things go okay, and how to maintain the status of things "going okay".

One of the things that helps me is therapy. I have a great therapist, and I go to see her every week. In the past, I had a different therapist., but the one I am seeing now is the same one I've seen regularly for about three years. She's a very helpful therapist, in that she laughs at my humor, is laid back, and never lectures me about anything or seems to look down on me for anything, while at the same time, she's knowledgeable about mental health and she's very friendly.

 Another thing that helps me is trying to practice mindfulness.

Another is eating healthy foods. I make green smoothies, with spinach or kale, frozen fruit, unsweetened almond milk or Greek yogurt, flax and some spices like turmeric and ginger. It's very helpful, and I've been doing it since August of last year, or September. I've lost 58 pounds in the past eight months, due to dietary changes and exercise. I walk about 3 1/2 half miles about five times a week.

One of the most important things that has made a difference is getting my medications straight.

While doing these things, I've been able to go back to college, having missed last fall due to hospitalization. I did really well in both my classes this past semester.  To understand why this is so important, and why I'm thrilled to be nearing the end of my Bachelor's Degree, you will have to read about my college saga. 

I have gotten A's in all my classes at the university I attend, and this semester was no different, but this semester I got to work on a project I really enjoyed working on, which involved the criminalization of people living with mental illnesses.

For a moment, I want to discuss criminalization of of people living with mental illnesses, because it is a very important topic. Pete Earley estimated in 2005 that 300,000 people here in the state of Florida, who have mental illnesses, were locked inside jails and prisons. Another author, Mary Pfeiffer in her book Crazy in America, estimated the number at 350,000. Earley also stated that 500,000 people with mental illnesses in the state of Florida were on court-ordered probation. This is an incredible number of human beings experiencing psychiatric disabilities, locked inside jails and prisons, not getting the help they desperately need.

Why are so many people in the jails and prisons? Well, because of deinstitutionalization. When the state hospitals were shut down or slowed down to a near halt, years ago, the people who needed help the most were hung out to dry like laundry. Those who need help the most are now often homeless, living on streets around my apartment building, across the entire state of Florida, and across the entire United States. There are people who are frequently arrested for being homeless, because they get caught carrying open containers of alcohol, or "trespassing" on private property, or urinating in public when they have no other place to go to the restroom, so they end up in jail. These people, while locked up, are often the medications they desperately need, for a variety of reasons, mostly to do with ignorance and the lack of concern the United States has for its incarcerated citizens. Cheaper medications that the jails have on hand are often used instead of the medications the people have been on before which actually worked for them; that is, if any medication is used at all. Another thing that happens while people are in jail for more than 30 days, is that if they are receiving Social Security disability benefits and Medicare or Medicaid, they lose all those benefits. This saves the government money, but it does not save the people from the poverty and economic despair they are going back into after they leave jail, with no money or insurance to cover their needed medications. Therefore, often, these people are are rearrested, through a situation known by mental health advocates as the Revolving Door.

Luckily, NAMI has launched a program call The Stepping Up Initiative to address this problem.

What was wonderful about this semester was that, for my senior seminar, I wrote a 28-page paper on trans-institutionalization (the criminalization and homelessness problem that resulted from deinstitutionalization), and I did it in increments, interviewing mental health professionals and advocates, and reading and then, finally, writing, and doing a presentation in front of my class on the topic. I loved it: I loved the process of studying a topic that deeply interested me, which I think is a vitally important issue of social justice; I loved being able to read because Saprhis, Effexor, Tranxene, Neurontin, and my sleep medications and thyroid medications are working so well for me that I can actually concentrate to read; I loved getting feedback from my professor all along throughout the semester; and I loved being able to stand up in front of my class and tell them all that we need to contact the Florida House of Representatives speaker Crisafulli to urge him to expand Medicaid to cover all citizens who need it for healthcare. I loved that class so much, and that process, the researching, writing, reading, studying, it led me to really want to go to graduate school.

So things are going well. Things are going well also, because I started my two new positions at the college where I work. One started in January; I'm a library paraprofessional, which is like being an assistant to librarians, except that there is no library on the campus where I do that job, so I am basically a writing tutor, and the other position I started in April is as a writing tutor. Both are part-time; I am only doing 15 hours per week now, because it pays quite better than my old job at the call center where I worked for almost 7 years. I was so relieved to leave that call center behind, and to get to do work that is fulfilling, which I enjoy doing, because I am able to help other people do the one thing that I've been passionate about since I was five years old: writing. I love writing (can you tell?), and I love this job. Many of the people I work with have Master's Degrees, and I'm just finishing my Bachelor's, so I was surprised to get these jobs, but I am so glad I did. The call center managers announced last fall that the college was going to outsource the call center, and that we would all be laid off, so I was very stressed out, trying to find other positions, and it was very hard to do. But, I'm so glad now that this huge, tremendous weight has been taken off my back.

Now, the thing to do is to make sure I maintain my sanity and keep my stress limited. I'm going to be taking a summer class, which starts next week, and I'm going to be driving 45 minutes three times a week, for six weeks, to work and go to school in that city where my university is, so it's going to be difficult. Especially difficult will be getting to class at 8:00 AM, but I have to take this particular class in order to fulfill some graduation requirements so that I can finally graduate in December.

So, in order to maintain my sanity, I need to continue to eat healthy foods, drink lots of water and my green tea (which gives me a little extra energy), take Vitamin B in large quantities (I take B-12 sublingual and B-Complex super duper formula too), take fish oil, take Vitamin D, take a multivitamin, and take all of my medications. Also, I need to make sure that I go to bed at a decent time, and wake up early every day, and that I walk as many days as I possibly can, and that I keep my apartment clean. Last weekend, I spent quite a bit of time cleaning, and now I'm just  trying to maintain that cleanliness on a daily basis, rather than letting things get cluttered, or leaving dishes unwashed, so the mess gets out of control. I need to spend time with my cats, because they need attention and because I need them. I also need to make sure I get appointments with my therapist, if not every week, then every other week. And I need to work on my school work when I'm not busy doing something else. One last important thing is that I need to have some fun once in a while! Fun matters too.

If I can keep up with my schedule and manage all of these tasks, then I will get through this summer just fine. It's important to take time to enjoy the weather when the sun is shining and enjoy nature when flowers are blooming and birds are chirping; it's also important to do fulfilling work, and to do it to the best of your capabilities. So I'm trying to do those things, and it's helping a great deal.

I have to believe that I can do this. I know that I can do this. It's easy when things are going well to start thinking, "Well this is great, but how long will this last?", or to notice the first sign of paranoia and think, "Uh oh, I'm going downhill again; all is lost!". But it is important to tell yourself that, yes, you may experience symptoms again at any time which have been gone for months, and also, yes, you may go downhill a bit again, but more importantly, stop and take a deep breath and appreciate, with gratitude, the fact that the universe has brought some peace and calm to your life, and the fact that you have done enough hard work to get symptoms under control that your work is finally paying off. Also, it is important to recognize which medications really do work for you, which is something that is easy to take for granted, because your first thought after you notice symptoms subsiding may not be to value your medication, but it is often the medication that is responsible for symptoms subsiding.

I'm still going through stress with Social Security, by the way, but I did find out from them that for the time being, I do not owe $14,000 or more, and for the time being, I am still receiving my disability benefits. So that is a huge monkey off my back, to some extent, although the final decision has not been made yet by the Social Security Administration.

When I was a little girl, one of my favorite books was The Little Engine that Could, who said, "I think I can, I think I can", and then did the things he thought he could do.

Saturday, May 02, 2015

Social Security Does not Consider Schizophrenia or Schizoaffective Disorder Disabling (at least not if you have $100 too much money from your part time job one time, in one month)

I have noticed over the years that some of the posts people read most often are the ones written about the Social Security Administration and disability benefits (SSDI and SSI). I haven't written here about my current situation dealing with this agency, because I have been trying not to worry about it. I've learned over the years that if I focus too much on such terrifying things as the possibility of losing my disability benefits, I will be come suicidal over it   like I did in 2009 a few times and 2012. I don't want to start contemplating my death again. At the same time, it is pertinent that I deal with this matter. I have been dealing with it, but I haven't talked to you about it. Also, nobody is helping me at all in dealing with it, and I find that this isolation is making the problem more stressful. So I am considering hiring a "representative", which is a person who works for an agency that helps people get disability benefits. I've never had a representative or a lawyer (representatives are not lawyers), and I've always had to fight this battle by myself, except when I had a case manager who would try to help me deal with it by calling the Social Security Administration or going to their office with me. I no longer have that case manager (neither does anybody else; she left the agency she worked for and later they laid off all the social workers who were doing case management). So I am stuck in this alone. I have a person that is a sort of case manager, but I do not think she knows how to help me with this or that she has the time.

Anyway, last year (I don't recall which month it was), while I was being harassed by my neighbor who lives in the apartment below me, and while I was looking for a new job, since my old job was getting ready to lay me off, I got yet another letter from the Social Security Administration. They told me that because for one month, two years ago, I made too much money to be eligible as a "disabled" person, I was, according to their rules, not disabled. Nor had I been disabled at all ever since, even though, as I have since proved to them, that was the only month during which I made too much money.

Consider how stressful it is to get a letter like this in the mail. Consider what it's like, when you really cannot work full time, and you get this letter that tells you that your primary income might be taken away, and that you might never get it back, and that you may have to pay back thousands of dollars that you do not possess because it went toward your rent and bills.

I live in a low-income neighborhood, to put it nicely. It's a really poverty-stricken, crime-ridden neighborhood, where, every single day, directly across the street from my apartment, drug dealers and prostitutes hang out, and the police roam around arresting people. It is a neighborhood nobody would choose to live in, if they had the money to live somewhere else. I have never had the money to live anywhere else. My rent is not based on my income. My rent is a flat-rate rent, which costs $445 a month. That might not sound like a lot of money considering that many apartments, in nicer neighborhoods, cost much more than that. But that amount is about a third of my income. I also have a car payment. I never wrote about my car accident of 2013 on this blog. But I had a horrible car accident, which was not my fault, and it involved a person who was high on drugs getting seriously injured, and my car being totaled. Since I have to get to work and school via car; as there is not a public transportation system  that could ever possibly get me to everything around here, I needed a reliable car. So I got a loan and got a car. This means that, in addition to rent, I have a car payment and outrageously high car insurance. I don't have cable TV, and haven't had that or internet at home for a year and a half. For most of last year, I didn't have any TV at home. But then my friends gave me an antenna, so I get some channels now.

I don't buy all my food at grocery stores. I have no choice but to go to food pantries to get help. I don't qualify for much in the way of food stamps, since the State of Florida has horrendously ridiculous requirements to get state assistance, so they think my income is too high. Therefore, after applying repeatedly in recent months for food stamps, I got awarded $16 a month. Yes, sixteen dollars a month. I think you can eat on that amount in Cambodia, but you can't in Florida. Although, my mom recently told me that since I eat rice and beans a lot, I should be living in a third-world country; maybe I need to go to Cambodia.

I also have healthcare costs. Collecting and sending my ridiculous co-pay bills that I cannot pay to the state, in a futile effort to try to get Medicaid to help me, did not result in getting Medicaid. I did get Share of Cost Medicaid (again, nobody helped me with any of this), and that was after faxing $45 worth of pages to the State of Florida to try to get it. That means that, after I spend about a thousand dollars, they will kick in and help me with my copays each month. Of course, since I don't possess a thousand dollars, this idea is illogical. I also don't know how Share of Cost really works, since no case manager I've ever met has known either, and nobody has ever explained it, so I'm at a loss to explain this to you.

Now that I've said all this, perhaps you can understand what it means to get a letter that states the rug might be pulled out from under me by losing my Social Security Disability benefits (SSDI). I've been getting disability for 15 years. I never had to get a lawyer to get it. I have run in to numerous, numerous problems with the Social Security Administration since that time (see above links or just type "social security" into the search box), but I have always been able to maintain my benefits.

I have no choice but to work, and I actually like working as much as I can. But right now I work 15 hours per week. I can't make more than $1000 a month, because if I do, the Social Security Administration, of course, thinks I am "not disabled". And if I didn't work at all, I would be living in a shelter or on the streets, because the amount that I get from the Social Security Administration is not anywhere near enough money to keep a rough over my head and feed myself and my cats.

People look at me, when I'm dressed nicely, and I'm at work, or at school, or someplace, and they don't know that I'm disabled, so they assume I'm not. Mental illness is an invisible, unless you walk around never changing your clothes or taking a shower or brushing your hair. I would say that people can notice it when you talk to yourself, but I talk to myself all the time, and I just know better than to do it in front of people (unless I'm in my car, then I don't care). So it's easy to see that if you have no context for what a "disability" is, and you consider it to mean "I can only work enough to make under $1000 a month", rather than "I cannot function sometimes at all and spent three months of my life in hospitals during the past two years", then of course, I don't seem disabled. So the SSA tells me in December of 2014 that I am going to owe them $14,000 + dollars due to the fact that I have not been "disabled" since 2013. So I have to appeal. Again. Again. Again.

And I did appeal, obviously. I'm not stupid. I've done these appeals before, but I've never dealt with a letter stating that I owe that ridiculous amount of money. I've never gone through a process that has lasted this many months, either. I wrote them that damn appeal. I wrote down the names, addresses, and phone numbers of every single doctor or hospital I could remember being a patient at, during the past 20 years of my life. Seriously. I did that. I had to miss an entire day of work to do it, and spend a lot of money on printing fees (again, I do not have internet at home, nor do I have a printer). Do you think they could maybe have been helpful to me here? Do you think maybe they could have educated their staff to be able to assist a person with serious mental illness in how to do this as quickly and easily as possible, or maybe make some phone calls FOR me, or maybe assure me that they are NOT going to deny my claim that I am, actually, very disabled??!! Do you think the federal government of the U.S. could afford to do that for people with disabilities? Particularly psychiatric disabilities? Nope. They don't do that. They don't help you with a single thing. Nobody helps you with this, unless you hire a representative. Do you think I even knew that much myself? No. I didn't know there was such a thing as a non-lawyer representative until someone in NAMI (National Alliance on Mental Illness) told me there was a couple weeks ago, after I mentioned what I have been going through. So did SSA ever explain things well to me? No. Did they ever do anything but frighten the hell out of me with yet another tactic to try to get people off the so-called welfare rolls? No. They didn't. What they want people to do is lose their benefits by not appealing, or lose their appeals if they do appeal, and then save the federal government of the U.S. some money that it doesn't need to waste on those of us who supposedly could just pull ourselves up by our collective bootstraps and get full time jobs, if we really wanted to and if we weren't just a bunch of lazy bums.

I am so far from lazy. I am so far from a person who does not want to work full time. I am in college, for god's sake, because I hope to someday get OFF SSDI and work, yes, full time, and pay everything myself. Someday. When I am actually able to do that. Right now is not someday. Right now is right now. I have never, in my entire life, been able to work full time, because I have always, since I was a teenager, been disabled by mental illness. Hello? Why would a reasonably intelligent person with numerous skills WANT to live on $800 a month or less for fifteen years? Why? Could someone tell me the answer that question? Why the HELL would I WANT to do that? Obviously I do not want to do that. Obviously, I really cannot work full time right now. This should be a simple concept to understand. But, apparently, it isn't simple at all for SSA to understand what it really means to be disabled.

If you are born blind (ie, visually impaired, but they call it "blind"), then you are AUTOMATICALLY enrolled in the disability benefits program. Automatically, no questions asked. Because people can look at you, and they can see that you cannot see. Therefore, they are able to comprehend that you cannot just work full time if you really want to do so (without considerable accommodations). If your parent dies when you're a child, you get Social Security benefits automatically too. If you are lucky enough to live to an old age, you get Social Security benefits, no questions asked about your income or what you're able to do. So people can work all they want when they are 70 years old, and still get Social Security benefits every month.

But if you have a genetically-predisposed serious mental illness, such as Schizophrenia, Schizoaffective Disorder, or Bipolar Disorder, you do not just get disability benefits because it is obvious that you are disabled. First, you are considered to be a liar. That is after you are lucky enough to get your diagnosis in the first place (which I didn't for about 10 years of my life), and if you are lucky enough to have the insight to know that you are PSYCHOTIC (by definition, you cannot simply possess  the insight to know you are psychotic, when you are psychotic, according to actual psychiatrists). And then, even if you really are disabled, maybe you will be like I was and not want to apply for disability benefits at all. I did not apply for disability benefits for mental illness. I applied for physical illness. You see, I was very psychotic, and I did not know that I was psychotic at all; what I did know is that I was heinously physically sick, and I could barely walk sometimes. I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome and Fibromyaglia. So I applied for disability benefits for that. I got approved for "anxiety" as my diagnosis. Whatever. It didn't much matter to me why they approved it. All I knew was I did not want to be homeless again (although, I was wrong in thinking that these measly benefits would actually prevent that from happening again; it did happen again).

That is how it is set up. First, you are considered a liar. And also lazy. And also a hypochondriac. Then, if they decide in your favor that you are actually disabled, you have to be very, very careful to never, ever work too much at your part time job, since, if you go over a certain dollar amount you will be told that you lied all along. That is exactly what they have told me. They sent me a letter that actually stated that they were investigating whether I was ever disabled since 2013.

Do you know what my life was even like in 2013 and 2014, SSA? That's what I'd like to ask them. Of course, there is no one to ask. So I wrote them, again, a letter, to send with my appeal. I told them about being in the hospital for a month two times in 2013 and a month in 2014 and several weeks, also, as a Partial Hospitalization Program patient in 2013. You see, I would assume (and obviously it is stupid to assume anything here), that if you know that someone cannot work for a month or more on three occasions during a two-year period, you will know that she cannot hold a full time job. After all, my part time job tried to fire me for being in the hospital this past August! Yes, they tried to fire me. They called me with three people on the phone (two supervisors and one HR person), and they told me I was fired. They told me that they "no longer needed" my "services". I told them I would sue them for violating the Americans with Disabilities Act, which is exactly what was happening. So I got my job back. Do you think I ever feel safe thinking I might need to go to the hospital again in this lifetime after that? Hell no. Obviously, I cannot ever go to a hospital again if it means that I might lose my job. At the same time, the alternative to going to that hospital last year was death. I had voices and messages telling me to kill myself, and I had it all planned out. So I had to take a month off work, during which time all of my psychiatric medications were changed, and I was put on a new antidepressant, a new antispschychotic (which, thankfully, works), a new anti anxiety medication, and two new sleeping medications. I also worked very hard on figuring out how I was going to manage my life once I got out of there, during that hospital stay.

So, apparently, the SSA thinks that someone who is "not disabled" spends months inside hospitals. Apparently they think that this is all being done for personal pleasure. Apparently, it was some kind of hotel I went to, maybe on a beach, with seagulls, and not a concrete block
building which I was locked inside of.

But let's be real. The SSA doesn't think in the first place. Thinking is the antithesis to what this agency does. It is merely one of the world's most pathetic bureaucracies, and it needs to be revamped, tomorrow. It needs to undergo a complete overhaul, and not the kind that certain Republican politicians want, which involves simply demolishing the agency and putting money elsewhere. I want to see this agency have to be held accountable to citizens in a way that any agency in a democracy should reasonably be. I want employees to be educated and decisions to made based on knowledge. Further, what I really want it is to no longer have to PROVE to this agency, or to anyone, that mental illness is a real, legitimate disability (and so are my other ones, Lupus, Sjogren's and Fibromyaglia, but that's not the point). I want people to realize that a disability cannot be gauged by the dollar amount a poor person makes in one month of her life. A disability can be gauged on how that person functions EVERY SINGLE DAY FOR YEARS. This really should not be a hard concept for people to grasp.

I apologize for venting, but I think some who come here searching my blog for posts on whether the Social Security Administration spies on them on the internet, or if it is possible to get disability benefits for Schizoaffective Disorder, really need some information. No, they probably are not spying on you on the internet. I have actually invited them in writing to read my words, and I highly doubt that they do so, but I have had those exact thoughts. It is likely paranoia. Yes, you can get disability benefits for Schizoaffective Disorder. Just be prepared for a repetitious, lengthy, inane, and terrifying fight.


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