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.

Decluttering

I wrote an article for the Florida Peer Support Coalition newsletter. It's here. The newsletter's issue was focused on "change" so I wrote about decluttering and organizing. I have a theory that many people with serious mental illnesses are very messy in the way they live. I'm pretty sure with Schizoaffective Disorder or Schizophrenia it is related to the negative symptoms of psychosis.

I've been doing pretty well with this issue since my good friend started cleaning for me. She charges me a lower amount than she charges for other people she cleans for. I trust her enough to let her see my mess, and she is nice enough to not run away from it screaming.

It's a pretty good arrangement, so messiness in my apartment is not really a big problem now much of the time.

What to Do when Your Adult Child has Schizophrenia and Doesn't Know She's Sick

Tonight at a NAMI Pinellas education meetings, a couple of parents asked the common question, "What do I do if my son won't get help because he does not believe  he is mentally ill?"

I have had people who visit this blog ask me this question before, so I thought it would be a good time to write a post directly for those of you who love someone with Schizophrenia or any other mental illness.

Here are some steps you can follow.

1. Educate yourself about mental illness, and particularly the illness your loved one has. There are many useful books you can read, films you can watch, blogs like this one, and Facebook support groups you can join. I have some family members who have never done any of these things, which is why they have no idea what my life is like.
2. Give yourself credit for trying to help. Go to support groups like NAMI's family support groups, or take a class like NAMI's Family to Family class. Go to meet others in your situation who can offer you suggestions, support, and hope.
3. Become an advocate. People don't want to believe mental illness can happen to them. Some of the stigma that enshrouds us all has affected your loved one who does not believe she is mentally ill. Fight that stigma on behalf of your family and all the others like you. Go to the top of this blog page and click the Combatting Stigma link to get started,
4. Be there to listen. Your loved one may not talk about her symptoms out of far of being misunderstood or of breaking a "rule" that the delusions cannot be talked about out loud. But if you present a calm, non-judgmental listening ear she or he might finally feel safe enough to talk about what is going on.
5. Offer to help her get treatment. Give her or him the numbers to psychiatrists or community mental health centers. Offer to drive them to the hospital if they are a danger to themselves. If they won't go willingly and they're a danger to themselves or someone else, then you call the police and ask for a CIT trained officer to come and Baker Act your child to save his or her life.
6. Learn about Ex Parte orders.
7. Provide food and shelter for your child if you can. Many homeless people do not survive the streets. Many of them are sick and have been abandoned by their families. You don't see families do that to cancer patients, but with Schizophrenia you do.
8. Forgive yourself for not being able to fix the whole situation. You can help, and be there, but you can't cure your loved one or force her to have insight into her illness.
9. Forced hospitalization is sometimes necessary. I know this is a controversial topic,, but forced hospitalization stopped me from shooting myself. Injected medications can be used when people will not take pills regularly, and what saved my life was being put on those injections and being kept in the hospital for six months.
10. Talk to your son or daughter like their brain still works - much of it does still work. Don't give up on their ability to have cognitive strengths.
11. Encourage your son or daughter to read books like Surviving Schizophrenia by Dr. E. Fuller Torrey, and watch films like People Say I'm Crazy and A Beautiful Mind. Facebook groups exist where your son or daughter can talk to people who have their illness about treatments, symptoms, ups and downs. NAMI.org is also an excellent resource.
12. Don't tell someone to snap out of it. Don't tell them to pull themselves up by their bootstraps. If they could have done that they already would have. Don't take it personally if they don't seem as happy as you think they should be or as talkative or sociable. It might be that they are hearing voices and holding a conversation with you is more difficult than worthwhile.
13. Don't ever support someone's substance abuse habit. If your loved on is an addict, go to Alanon, and don't enable her or him.
14. Talk to people about what you're dealing with. We're covered in a shroud of stigma and ignorance. Any time you can poke a hole in that shroud benefits all of us who live with mental illnesses. Don't be ashamed of your son or daughter. Don't be afraid to let people know she's sick. Let people know she has a brain disease. It's not something any off us should have to be ashamed of.
15. Offer to help your loved on apply for Social Security Disability benefits if she can't work full time. Help her or him fill out the paperwork; make sure it's very thorough and lists every treatment provider she's seen, their names and addresses and dates she was there, and every medication she takes and why she takes them.
16. Look into clubhouses like Vincent House in Pinellas Park where people who have mental illnesses can work and contribute their talents for an organization that accepts them for who they are.
17. Look into vocational rehabilitation programs in your area if your loved one wants to try working but is having trouble.
18. Remember that she has a brain disease, and she didn't cause it, and she doesn't enjoy it, and she's doing her best to survive it. She might not have the best coping skills, and that's where therapy and support groups become useful.
19. Encourage her to attend a NAMI Peer to Peer course or a NAMI support group or a Depression and Bipolar Alliance Support group.
20. Tell your daughter or son  that you love them. And act accordingly.