Turn Your Face to the Sunshine

My medical withdrawal from my university went through. I got the official paper about it in the mail yesterday. It's - as someone once commented on this blog - demoralizing, having to withdraw. But it was what I needed to do for right now.

I know that by the fall, when I am ready to return (hopefully) to school, I will have forgotten the Spanish I learned this past fall....so really, I should be trying to go back in the summer. But I don't feel like I could do it. I'm still having delusional thoughts, and thinking people on TV can read my mind when I watch the news...stuff like that. So I know it would be really hard to do a class right now. But I really don't want to forget all the Spanish before I take Spanish II because it will be extremely difficult.

I have to believe that I am doing the right thing by just taking care of myself for now, and not returning to the stress of school at this moment in time.

I am going to be mentoring a NAMI Peer to Peer class soon. It will be every Saturday for ten weeks, and I will be doing that for the first time. There are three of us who will be mentors, and hopefully, I will remember at least some of what I learned in my training class for this last September.

Peer to Peer is a free course where you learn coping skills, gain knowledge, and get a chance to share your story with people who understand. If there is a NAMI (National Alliance on Mental Illness) affiliate near you, I highly recommend the course.

Tomorrow, I go to see my old therapist again at her new office. Hopefully that will be helpful. The Clozaril seems to  be somewhat effective, just not completely effective by any means. I will see the doctor, hopefully, tomorrow too, about that. I am still only taking 100 mgs.

My apartment is clean, and I've vowed to keep it that way for the next two weeks before Kristyn comes back, or at least put more effort into keeping it that way than I have been. Staying organized is a perpetual challenge.

I have been horrified by the tragedy on the news of the tornado in Oklahoma, and, per usual, some sick part of my brain thinks that I caused this natural disaster with my thoughts. It's not a big part of me that believes that, but it's disturbing nonetheless. I found comfort in some of the stories of teachers saving the young children from the damage and from death. One teacher had her preschool kids sing, "You are my sunshine, my only sunshine, you make me happy, when skies are grey. You'll never know dear, how much I love you; please don't take my sunshine away." One of my ex boyfriend Jim's few redeeming qualities was when he sang that song to me. It's sweet.

The tornado

It was October, 1992. I had just recently been hospitalized for Anorexia Nervosa in a psychiatric hospital in Tampa. For several weeks my dad had driven me there each day for partial hospitalization. My parents had been divorced since I was 14. I lived with my mom, my brother, and my sister in the house I grew up in, in a town called Pinellas Park. My brother and sister were at my dad's for the weekend. My mom and I were home. There was a muffin on the table I was going to eat. We were in the kitchen. My mom yelled, "The sky is green! A tornado is coming!"

She told me to get into the bathroom. She and I stood in the bathroom holding onto each other as the sound of either a bomb going off or a freight train blasting through the living room surrounded us. We prayed. We screamed. I didn't know what was happening. I  thought it was the end of the world. But it was a tornado.

When we opened that bathroom door we were confronted with the ruins that were formerly our house. My sister's Barbie dolls were still sitting perfectly in their chairs and houses. But my brother's bedroom was gone. Nothing left but a slab of concrete. Three people were dead. We didn't learn that until later, on the news.

I remember screaming for help. I remember not knowing the whole neighborhood was destroyed.

All of our stuff was covered in insulation. I was allergic to the fiberglass in it and broke out in hives. We found one of our cats that day. and the other one, Tuffy, came running out of the ruins, cut and bloodied paw on him, the next day. I cried when we found him. I took him to the paramedics and they bandaged him up. The Red Cross or the Salvation Army gave me some tuna fish for him.

After I saw what had become of the mobile homes nearby, the way they had toppled like so many toothpicks, I vowed never to live in a mobile home in my life. I became afraid of storms and tornado warnings. For some years I would get scared every time there was a warning. But the day we lost our house we had heard no warnings.

My heart goes out to everyone who has survived, and to all those who have died, in Oklahoma in the devastating tornadoes today and yesterday. I can only hope that we will help our fellow humans through this difficult time. A lot of people helped us after our tornado. And time, time helped. I'm not that scared by storms now. But I will never forget.

After our tornado, I dropped out of high school. I was an honors student, but with the eating disorder and the loss of all my belongings and my home, I didn't want to deal with the stress of my senior year anymore. I dropped out and I would live to regret it but that tornado deeply affected the trajectory of my life.

fat

I hate being overweight. I hate it. I mean I really, truly hate it. I know all about how it's better to be overweight and somewhat sane than skinny and insane. But I hate being overweight. I hate how people look at me; or how they think of me, how they judge me. I hate not being pretty enough to attract anyone to me anymore. I hate that I can have a crush on someone and know that it will never be mutual because I am so fat.

I hate it.

I curse these medications for making me so overweight.. Goddamn them all.

The New Zealander hasn't talked to me in months because he has a girlfriend. I should have known we weren't even real enough friends for him to not ditch me as soon as he found a girlfriend. But I thought we were real friends.

Tonight I went out with a guy I've known for years who I like and I blame my disgustingly fat body for the fact that he doesn't seem interested in being more than friends.

I hate being overweight..

I think I am going to join Weight Watchers. I'm desperate to not be obese anymore.

Jen's Tips for Getting Social Security Disability Benefits and Keeping Them

I've been paying attention to the stats on my blog and what key words people are  typing into Google when they end up here. Often, and every day, they type in "SSDI" or "Social Security" and "Schizophrenia or Schizoaffective" or "how to live on SSDI".

I have, in fact, been getting Social Security Disability benefits for about 12 years. I also work part time (factoid: you can get SSDI and also work part time), and I have been reviewed by the Social Security Administration numerous times. So I do, actually, have some advice for you.

If you need to apply for SSI (Supplemental Security Income) or SSDI (Social Security Disability Income), this will be a primer for you.

1. Be detailed. Whenever you are filling out forms for Social Security utilize the extra space at the end. The way to utilize it best is to attach type written pages, not to write in your own messy handwriting. Use this space to tell them every doctor, therapist, social worker, or hospital you've been to and the dates when you were there, and the reasons you were there, and the treatment you were given there.

2. Get addresses and phone numbers for every medical office you ever enter, and include them in the extra space. Make sure to put it in writing that Social Security has permission to obtain your records from said places.

3. Don't trust Social Security staff to do any of the footwork for you. You will have to do it yourself. If you have copies of your medical records, send them those if you can. Don't worry if you can't do this; most people can't afford the expense.

4. Consider hiring a lawyer when you have to appeal the second or third time. I wouldn't hire a lawyer for the first denial. Basically everybody who applies gets denied once, except people like me who have extensive hospital records. The lawyer can't charge you unless you win, and usually with a lawyer you will win more money than what you can get by yourself. I would have had much more in backpay if I had gotten a lawyer.

5. Don't waste your time talking to them on the phone, unless you make sure to get the name of the person you are speaking to and write it down.

6. Don't waste your time sitting at their office, unless you are prepared because their goal is not to give out more money to people. Their goal is to give out less. You need to be confident that you are, in fact, disabled, and have proof if you go to meet with them.

7. Describe every day as you would describe your worst day. If there are days when you cannot get out of bed, tell them about that. Don't ever assume that they will realize that you are debilitated because they will know all about Schizophrenia already. Assume they know nothing. Act accordingly.

8. If you ever get a part time job, after you win your benefits, make sure you don't make $900 a month, or you'll lose your SSDI. You can obviously choose to go off SSDI but most people wouldn't go through the trouble of begging for a poverty level income if they had a choice about it, so I am assuming that you are really disabled if you are reading this. Often SSDI and usually SSI are not enough to live on. So you may have to work part time. Working is also good for your self esteem and gets you out in the world.

9. Be prepared to be hassled, if you win the benefits. You will get reviewed. Every time you get reviewed you are being  threatened with losing your benefits. Be prepared to be nervous. But you will get through it if you follow these instructions and write in detail why you are disabled and what your symptoms are and how they affect your ability to work. Make a chart with Microsoft Word and give them a handy outline of your symptoms. If they should require you to get medical records, proof of bills paid and proof of medications you bought or the past six years, just do it and don't bother arguing with some peon on the phone over whether you should have to do it. They can't help you.

10. If you go back to work full time, you can stay on Medicare for a limited length of time which most of us would desperately need to be able to work full time at all, so remember that and take advantage of it.

11. Realize you're not worthless. People without careers or jobs are not worthless human beings. You have value, talents, skills, and assets, Everything in life isn't about what you do for money. If you need disability benefits, you should not feel ashamed.

12. Learn to live on a strict budget. Go to food pantries if you need to. Applying for SSI is also how you apply for food stamps. Do that if you need to. Buy everything at discount stores. Shop around before making any large purchases. Utilize Craig's List for free furniture. Go to thrift shops. Avoid the malls. Social Security doesn't give anyone enough to live on; it's a poverty level income. Remember that you cannot eat at restaurants every day when you are in poverty. Apply for Lifeline telephone benefits. Apply for subsidized or HUD housing. Get a roommate. Rent a room in someone's house.

14. Utilize your local community mental health center. Ask for a case manager to help you. These advocates can be valuable when you are dealing with Social Security and can help you navigate the rough government waters you're headed into. Most mental health centers have case managers, and often you have to ask for one before they are assigned to you.

15. Use legal aid if you need to appeal and you can't afford a lawyer.

16. Don't give up. It can take years to win Social Security benefits. This is your survival at stake. Fight for it, and don't quit. The system is designed to make you give up before you win. Don't give up on yourself.




 

Blog Talk Radio Show

I was a panelist last night on a Blog Talk Radio show featuring a psychologist named Dr. Fallahpour. Feel free to listen in on the talk here. I was asked by Priya Menon, who once wrote an article where she interviewed me for Cure Talk's website, trialx.com, to participate in this discussion.

The discussion last night mostly focused on brain mapping research that Dr. Fallahpour is doing at his research center. I'm not sure that the audio is the best quality, but there will be a transcript posted soon.

In other news,  the NAMI Pinellas Spring Gala fundraiser went really well, and was a very fun and fancy black tie event. Thank you to anyone reading this who supports the important work of NAMI.