Who's Doing the Driving? (Part I)

A couple of months ago I was giving a speech (my first) on mental health skills. Planning it, I had to ask myself: what is the single most important skill the mentally ill can learn?

Answer: learn how to tell that you have entered an altered state (psychosis, panic, mania, etc).

Now, this is not simple. If you think of the altered state of dreaming, you notice that while you are dreaming all the impossible things that happen make perfect sense to you. It is only when you return to waking life and try to describe it that you find the logic and chain of events don’t work. But there are some people who can occasionally, while in the dream state, say to themselves “This is a dream.” That is similar to what I suggest we develop. It is an inner ability to detach, just a little bit, and see ourselves.

This is not a replacement for taking your medicine. This is more a way of dealing with those ‘breakthrough’ symptoms that so many of us live with.

There are enormous advantages to understanding, for instance, that you are having a panic attack or hearing voices that are not there. Once you know, you can take action: call a doctor, take a pill, get off the freeway, go in your room and close the door, whatever your personal experience has taught you is effective. This minimizes the damage. If you don’t know you’re not in ‘standard reality’, you will keep bumping up against other people’s reality, and that could end in a screaming fight or the police station or other unpleasant places. You will then be at the mercy of what other people – maybe strangers – decide to do about it.

So here’s how you learn to catch yourself. This is a practice that develops over time, it is not a quick fix. At the end of each day, review the day briefly to yourself and ask something like, “How sane was I today?” or “Did I have symptoms today?” Go over the day and see any place where maybe you lost it a little (or a lot). This is not the time to beat yourself up. This is the time to analyze calmly. Zero in on the incident. What did it feel like? How did it feel or sound in your head? What was going on with your body? Were you all tensed up? Were you overwhelmed and shaky? Did you have a headache or anything else that was noticeable?  Is there something that you say or do every time that happens? Really go over that experience in your mind and then compare it with whatever your personal version of ‘normality’ may be. How are they different? Can you get a feel for that? Would you recognize it next time? What could you do next time that would be helpful?

If you do this nightly scan for awhile – not criticizing yourself, just looking for information – you will start to find repeating patterns and sensations that are familiar. These can be your “clues” that you have gone over the line and need to take rescue measures. After some time, you may even start to notice triggers. Do you always end up sick if you do x? Do you suffer if you overdo y?  You’ll start to understand some of what sets you off, or just generally makes things worse. I do not mean that we always have external triggers or “reasons.” Sometimes  there’s just an arbitrary chemical surge in your brain, and you have to deal with it. But you can learn to avoid some of the unnecessary stressors in your life. You can begin orienting your activities away from those triggers.

Of course, this does not work for anxiety reactions. If you hide from everything that scares you,  you will soon be living in the broom closet. For anxiety problems, you are better off facing these things in small doses, one by one. But you are still better off recognizing your reactions when they happen. Naming things takes some of the fear and strength out of them. You can say to yourself, “oh – this is not me, it is my disease.” That gives you a little power over it.

Over time, this kind of self-monitoring will help you to live life with fewer outbreaks. Or you can recognize them sooner, and head them off at the pass before they get too extreme. It’s worth the time and effort you put in to make a more functional, peaceful life – and believe me, your loved ones will appreciate fewer storms as well.

Next week we’ll discuss some other ways to catch on to what your brain is doing.

Deborah is the author a one self-help manual, Is There Room For Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness.  You might also like to explore her award winning comic romance novels set in the 1800s in England. See Amazon.com, BarnesandNoble.com, Kindle, or Apple's iBookstore.

Affordable Health Care Update

I attended a lecture Thursday night on the status of the Affordable Care Act (health care reform) that became law in March of 2010. There was a lot of interesting information, not all of it new, that I think anyone with a mental health challenge ought to know. We do, after all, have a chronic condition that requires regular medical care, and the bills can be a lot higher than we can afford.

You probably know that there is now a sort of exchange where people with pre-existing conditions can go, but do you know how to find it? Go to www.pcip.ca.gov (in California), or call 877-428-5060 Monday through Saturday. I’m sure they can give you information on out-of-state sources to contact, as well.

Here’s a quick summary of the provisions active so far: lifetime coverage limits have ended, no pre-existing conditions are allowed for children under 19, coverage can’t be dropped midstream, and Medicare (which many of us are on) has eliminated copays and deductibles for preventive care. So if you need a checkup or a mammogram and you don’t have money, go anyway. Also, parents can keep children on their insurance to the age of 26. Those are a few of the more important items.

Now here’s a rundown of additions for 2011: Most important for Medicare Part D beneficiaries, there’s a 50% discount on brand name drugs during the infamous “donut hole” period (which won’t be eliminated till 2020). Also, Medicare payments are supposed to now be connected to quality outcomes – so you aren’t given just the cheapest treatment whether it is right for you or not. The speaker I heard also claimed that access to long term care at home and in the community is increased, and that community health centers are expanded. What that looks like in real terms, I don’t know. Also, insurance must use 80 to 85% of your premiums ON HEALTH CARE.

Some of the things coming up:

2012   - a voluntary option for long term care insurance

2013   - increase of payments for Medicaid primary services. Increase of Medicare

doctors and nurses

2014   – Insurance exchanges come online for individuals and small businesses.

-       Discrimination due to pre-existing conditions or gender ceases.

-       Medicaid is expanded to everyone below 133% of the poverty level, which right now is $29,000 for a family of 4.

-       No more annual limits to coverage

2020   - Medicare Part D “donut hole” terminated

I also understand that ultimately on the California State Exchange insurance will limit out-of-pocket expenses to a maximum of $11,000 in any calendar year. So you won’t get wiped out by one big injury or illness. I don’t know what year that becomes law.

You can find out anything else you need to know at the new federal website: www.healthcare.gov (or in Spanish at www.CuidadodeSalud.gov).

And if you’re already stuck with a big bill, get help here: www.hospitalbillhelp.org

All this information is courtesy of the Unitarian Universalist Legislative Ministry of California, which can be reached at www.uulmca.org or 916-441-0018. I’m sure they’ll be happy to refer you to out-of-state sources.

Good health to all, and I’ll see you next week.

Deborah is the author a one self-help manual, Is There Room For Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness.  You might also like to explore her award winning comic romance novels set in the 1800s in England. See Amazon.com, BarnesandNoble.com, Kindle, or Apple's iBookstore.

The Ongoing Saga of a Sitting Duck

Here’s the latest: following Senator Feinstein’s intervention in my case, my Disability benefits have been continued for now; it has also suddenly been decided that I do NOT owe 20 years of back pay to Social Security. You can imagine my relief.

But new issues have risen in their wake. The Social Security Administration now says it will instead conduct a “medical review” to see if I am still disabled.  Um, guys? I’m still Bipolar. I take antipsychotics daily. Because I need them, see? Last time I looked, there were no miraculous ‘cures’ on offer. Of course, if they consult my doctor, that is what they will learn. But Disability Medical Reviews are known to be kangaroo courts in which you are condemned before the trial ever begins. I once had a friend told, after one of these, “You can walk and follow instructions. Therefore you can get a job.” Well, that’s a nice system, isn’t it? If you can walk to their office and fill out the application, you are automatically disqualified!

It’s also suspicious that immediately after contacting Senator Feinstein and supporting my case, my friend Mel C. Thompson was likewise put under investigation.

The second concern is that Social Security is claiming I have already finished my Trial Work Period, though in fact I have never had one. There are some worrisome limits attached to how long you can continue to receive benefits or Medicare after the Trial Work Period is finished…I may STILL end up judged “ineligible” and having to pay back one year of benefits. But not 20! At least that’s settled.

My stalwart friend and I are working our way up the political food chain. I am contacting Feinstein again, as much as I hate to bug her. Last week we contacted the Office of the Inspector General; next week it is Social Security Commissioner Michael Astrue. Mel has done a brilliant job of writing these letters, pointing out case after case personally known to us in which these reviews have been abused, and demanding cessation of such hung juries not just for ourselves but for everybody in the system. He's also requested a permit to protest outside the Social Security branch in Walnut Creek, whose brainchild all this is. That will hopefully put a spotlight on the harassment we are receiving.

Where it will all end, God knows. I personally would be delighted if it caused an inner shakeup and some actual change in policy. At the minimum, I hope we can stop being personal targets, and I, at least, can go back to the anonymity I prefer.

It may seem odd for an author to say she prefers anonymity. But I didn’t take up show biz, folks, I picked up a pen behind a desk in a shadowy back room. No matter what adventures my books go off and have without me, that’s where I’d like to remain.

And so, until next week…

Deborah Fruchey is the author of 3 books, including Is There Room for Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness. It is available on Amazon.com, Barnes & Noble.com, Kindle, and many other online sources. It is temporarily unavailable on Apple's iBookstore.

Don't Fall For This

Like many people with mental illnesses, I subsist on a Social Security Disability payment, and the generosity of my spouse. A few weeks ago, out of the blue, I got a letter from Social Security claiming that not only was I not entitled to further benefits, but also that I had not been entitled to them for the last twenty years, due to some alleged month when I made too much in the early 90s. The letter said I had 10 days to prove otherwise, and if I could not, their decision was final and they would be contacting me about remitting overpayment.

Naturally I panicked. Wouldn't you panic if you were told that not only was your income being cut off, but you'd have to pay back the last 20 years of your salary? So the first thing I did was get an extension of that 10 days, because it was going to take that long just to gather employment records from 1991. I envisioned trying to work again and breaking down and ending up in the hospital. I envisioned them trying to take my husband's property - I certainly had none of my own!

Look, honey, you are SUPPOSED to panic. They're counting on that. They're counting on you thinking that the government can do anything at all to you, and feeling that you are helpless. But this is a scam, and it's no less a scam because it's being done by government employees on government letterhead. It is a form of extortion, and it is very often successful. People often agree to give up future benefits in return for having their 'overpayments' forgiven, and SSA is happy. Never mind that another disabled person has been thrown back onto their non-existent resources, to survive god knows how.

My husband soon calmed me down. There has to be a statute of limitations, he said. Even the IRS can't expect you to show records older than 7 years. And my benefits had started 13 years before I ever met you, he pointed out, so they won't get that money out of me. Cool it. So I chilled - a little.

Then I contacted a savvy friend, who contacted a Disability lawyer, who laughed at the very notion of this scheme. Here's the truth: Social Security cannot overhaul your records in this fashion any earlier than four years back. I was going crazy trying to get financial records from the 90s, but the fact is, EVEN IF some mistake had been made back then and I had been overpaid, I am not liable. Their own Inspector General announced 'Administrative Finality,' which is the name of this rule, for mistakes made by SSA that are four years old or older. They have no right even to send me a letter like this! And they've known that since at least 2006, when the rule was widely distributed.

The problem with this scam is that you cannot get a Disability lawyer to take it on for you. There's no award in it if you win, so there's nothing to pay the lawyer with - and as a beneficiary, you certainly don't have any other cash to pay them. So we have to fight such encroachments on our own, which can be difficult. Here's what I did, on the advice of my wonderful friend Mel C. Thompson: I went on the web and downloaded a form from Senator Diane Feinstein's office, called a Privacy Release Form. When signed by me, this form gives her permission to look into all my records to solve the problem I told her about. I filled out this form and sent it with all the documentation I could get; both in the regular mail and by certified mail. When I tracked the certified mail and it hadn't arrived 10 days later, Mel called their office for me and got a fax number, and I faxed all my documents to her office.

The very next day I received a firm, friendly letter from the Senator saying she would look into this for me. I had faxed my documents at 4:22, and somehow she must have made the 5:00 mail with this letter! She even thanked me for bringing it to her attention. I have every confidence that, while SSA doesn't mind bullying me, they won't wish to tangle with Senator Feinstein. Stay tuned to this Bat Channel for further developments.

But the moral is: don't be taken in. And get SOMEBODY to represent your interests, even if it's only a fierce logical letter writer. It is easy to single out the ill and vulnerable; not so easy if they've  got even one healthy person on their side. Don't be afraid to ask for help.

Ms Fruchey is the author of Is There Room for Me, Too? 12 Steps & 12 Strategies for Coping with Mental Illness.
It is available on Amazon.com, Barnes & Noble.com, Kindle, and shortly on Apple's iBookstore.

What's Your Bag?

Many apologies, friends, for being out of touch. I just finished a new book and was working on the initial sales and whatnot…it kept me busy for a few weeks. Now I am getting ready for my first-ever lecture to the NAMI Contra Costa General Meeting in April…MAJOR NERVES. But this is what I’ve been working towards for a long time – a chance to introduce the book and give people real-time help with mental issues.

And that brings me to my subject: what are you doing with your life?

Surviving, you might say. Living through my symptoms. Trying to string one day together after the other.

Well, that’s cool, and it can be a full time occupation at certain points of our lives. Having a chronic disease, little income, and few resources does leave us with fewer choices and a lot of plain hard work. But at some point you’re going to need a reason to be alive -  a reason to keep stringing those days together in sickness and in health – especially if they are mostly ‘in sickness’.

Humans are goal oriented and pleasure oriented. When mental illness happens, what usually follows is that all your previous plans for your life go straight down the toilet. Lots of us are so shocked and overwhelmed, we never get around to replacing those dreams and plans. But we need to have some.

Lest we feel too sorry for ourselves, I’d like to remind you that retirees have much the same problem. They’ve been operating at a certain level and with a set goal for decades – and suddenly, they are left with an open schedule, no goal, and also diminished capabilities. Even if they are perfectly healthy, the number of employers who will hire them is drastically reduced. So is their income. Sound familiar?

This is the point at which many retirees die. Statistics bear me out – when people do not have a goal or an occupation, they just don’t last long. When you retire, whether due to disability or age, you must build a new life : one which doesn’t include the standard, familiar 9 to 5 goals. This is a challenge, but it need not be as difficult as Mount Everest. Instead of thinking that we have somehow ‘failed’, we can think of ourselves as in early retirement, and needing a sense of purpose.

For me, the answer was in the arts. That may not be your bag at all. But there is something, somewhere, that is meaningful to you, and that you can participate in. It doesn’t have to be volunteer work or a ‘Good Cause’, though lots of folks find that’s their answer. You may prefer to devote yourself to being the best friend anyone ever had. You might take up gardening – even if all you have is a window box. You might raise cats, or whittle small soap statues, or quilt, or lift weights and keep a healthy body despite the unhealthy things your mind sometimes does. You might become a consultant, with his/her own hours, in a field where you were once a full time employee. It doesn’t matter what it is, just so long as it is important to you, and something you can manage on a come-and-go basis, when you are well enough.

Just be sure that you find yours. Any Existentialist can tell you that the meaning of life is only what we make of it. Find your source of satisfaction. Find a reason to get up in the morning. Or one day, you just won’t.

Surviving Depression, Part Two

This is the second half of a two-part blog on surviving severe depression.Previous highlights were: get rid of all weapons, get a crisis number and use it, and find some passive occupation that can take up hours of your time; something you can do instead of brooding.  The previous installment ended by saying that this was no time to neglect your medication or your therapy visits.

-5) Handling family: If you have children, this is more complicated. You might have to develop a routine of minimum chores to do each day before you go back to bed. Show your spouse this section of the book, and tell him/her to bring in help. S/he’s lucky to have a partner at all right now. Normal services have been interrupted! Business as usual is just not on the menu, most days.  Make sure your children understand that you love them, but you are very sick and need to rest a lot.

- 6) If you’re employed: If you are employed, it’s very difficult. Of course you have to shower and get up. Maybe you’re not sure you can keep that going. You might consider a leave of absence – especially if your performance is so bad you’re close to getting fired anyway. That happened to me once, and I had to beg for another chance and go on probation.

            It is very hard to do a good job when all you can think of is that you wish you weren’t breathing any more. If you can get on welfare or disability to tide you over, now is the time to do it. Public income programs exist for the times when you can’t support yourself.

- 7) Do try to eat somewhat decently.  Don’t survive on Twinkies and Cokes. I’ve done that, and it sucks. When you get out of bed at last and find you’ve gained 40 pounds, you’re going to be pissed.

            Tip: when you do get around to losing the weight, you will probably need to take in 300 calories less than a person without medications. So the average 1500-calorie-a-day diet (for most females) comes down to 1200. That’s not much. It’s rough sticking to that strict a regimen.  Better not to gain it in the first place.

- 8) This is not the time to make major life decisions. They will for sure be all wrong. Especially do not get married.

-9) For suicidal thoughts, here are some counter-thoughts that helped stop me at the worst times, the times I was actually making plans to die:

--Think of the mess and ugliness. What will it be like for the person who finds your body? Do you want to make a friend shovel your brains off the floor? That happened to someone I know.

--Think about FAILING at suicide and having to live with the consequences. There was once a boy in my neighborhood who shot himself in the mouth, cop-style. Somehow, he missed the most vital parts and stayed alive. However, he became a quadriplegic, and will now have to be cared for all his life by his family. AND HE STILL HAS TO LIVE WITH ALL THOSE AWFUL THOUGHTS IN HIS HEAD. But now he can’t even talk about them to anyone.

Wouldn’t you rather check in to a hospital than have this happen to you?

-

-Think about what comes after. Oh, I know what you want from death. You want OBLIVION. You want it all to be OVER. But is that really what happens at death? Do you know? Does anyone? I’m not going to try to scare you with hellfire, but consider this: what if they just send you straight back to earth to do it again? What if this is a test, and the protocol for failing is even worse? Maybe the only way out is through. ‘Rest’ and ‘silence’ may not be on the agenda at all.

--If you really can’t control yourself, the hospital is where you belong.

-10) The real and final reason for living through it is this: Everything changes. Your brain is telling you that this horribleness is the way it will be, forever and ever, amen. But your brain is wrong.

I wanted to die when I was 19. I was poor and out of my mind and was scrounging the gutters for dropped change to buy food with – when I wasn’t shoplifting. I had dropped out of college, I had no skills, and I could see no future. But I went to say a last goodbye to a friend, and she talked me out of it. Thank God for her, because I was dead serious.

It wasn’t the last time I wanted to die. There were to be many others. As I mentioned, I spent two years pretty much without leaving bed in my late twenties. Each time I was suicidal felt just as bad as the last time, and each time I felt I had no future.

Today, I have a four bedroom house in a pricey suburb, I’m going to college again, and I’m living with the love of my life – who happens to be a lot more fun than I even dreamed he would be. My pills and my preventive measures have made my symptoms nearly invisible, if I’m careful. I get to write every day if I want to. I am so happy, old friends tell me I glow. But I had to stay alive long enough to get here.

What if I had missed all this?

There was no way to see from there to here. There was no evidence that it would turn out this way, or any good way at all. Life is not a straight line. It takes all kinds of turns and you do not know what is in your future, no matter how it looks from right here.

Stick around for what comes next. I guarantee it won’t stay the same.

Don’t be another statistic. We don’t need more statistics. We need more people like you.

The above is an excerpt from Deborah Fruchey’s book, Is There Room For Me Too? 12 Steps & 12 Strategies for Coping with Mental Illness. It is available on Amazon.com, from Kindle Editions, and in Apple’s iBook store. You can visit the author’s web page at www.lafruche.net. You can watch an introductory video at http://www.youtube.com/watch?v=sebsylD-iNI

Surviving Suicidal Thoughts

         I’ve been hit by a Depression recently, and been hearing from people with Depression, so here is a recap of my survival strategies, made for times when you genuinely do not want to live. This will be a two-part blog.

         In severe Clinical Depression, you lose all will to live. It’s one of the worst things special chemistry can dish out. It’s just a chemical shortage, but that’s not what it feels like.

         The way I’ve always described it to myself is that the motor has died in me. Everyone has a little, crucial motor that wakes up with them each day and makes them want to go on – at least after a cup of coffee or two. In Clinical Depression, the motor STOPS. It is jammed or broken. Who knows why.

         And you don’t care. You are perfectly happy to stay in bed all day every day. People don’t realize till they’ve been there that it takes energy to give a damn. That’s something the people around you, trying frantically to get you ‘back to normal,’ don’t understand.

         With time, and maybe the navigation of some crucial life issues, that motor will kick in again. The job of anti-depressants is to jump start it. The danger is that people won’t live that long.

         In suicidal Depression, you have one job and one only: stay alive until the motor starts. It is gruesome, but possible. I have been suicidal, I forget how many times. Once I spent 2 whole years in bed. I survived it. This is how.

         First and most important: do not buy into how you feel. I know it seems like the world is one big kitty-litter box and you are buried at the bottom. But your brain is lying to you! That is vitally important to understand. When your thoughts say, “It’s not worth living,” you can respond, “What a load of crap!”

In rehab they taught us something I never forgot: Feelings are not facts. Feelings just are. It’s just a broken brain showing you everything through a black filter. It’s not real. It’s a movie-screen disaster. It cannot kill you all by itself! Only you can do that.

         If we have an ‘ordinary’ Depression and things look dark, we are usually best served by keeping busy and keeping in motion. But if we are flat out suicidal, it just may not be possible. The rules are different when all you can think of is how much you want to die.

Your only job right now is to stay alive, and here are a few tips to help you do that:

         1) Get rid of all weapons. I have a gun for self-protection (I know that’s not very PC). When I start thinking I don’t want to live, I give that gun to my therapist and say, ‘’Hold onto this for me for a while”. Pills are weapons. If you start thinking of overdosing on your pills, it’s time to get somebody to dole them out to you one day at a time. You can do this. Doctors are willing. Your friends would rather do this than see you die.

2) Get a crisis number and call it any time you have to. Call your therapist. Ask for extra sessions. Write long letters or journals about how bad you feel. But don’t expect your best friends to be able to listen to it every day. They can’t even understand, though they may be willing to try. There is no normal person on earth who will be able to stand your current point of view for as long or as often as you will need to vent it. Use the professionals. They’re there for exactly this.

         If there are local prayer lines, you might call them too. A lot of people praying might just make the difference. What could it hurt?

         3) Find something passive to keep yourself occupied. TV or books or audio tapes or crosswords – anything will do if it keeps you from sitting around brooding. Cuddling your cat or stuffed animal helps, too. If you just sit and think, you might crumble. If you have to watch reruns at 3 in the morning till you finally drift off into a coma, that is better than dying.

         This is a good time for that music collection I recommended. This is a good time to take up knitting. This is a good time to play Slinky, or Solitaire, or Marbles. This is a good time to surf endlessly on your computer. Go into a mindless zone where you are just slightly too busy to think about much you hurt. This is NOT a good time to take up drugs or alcohol. Your lens on the world is already way too distorted as it is.

                   4) Keep it simple, and take your medicine. I know hygiene and moving about socially don’t interest you very much right now. I’m going to be different than the textbooks and say that’s fine sometimes. If you want to lie dirty in bed all week except when you go get the groceries, OK. Just so you stay alive.

I have a request, though: when you do go for the groceries, take a shower first. It is the kind thing to do, and it will make you feel marginally better. Also, get up for therapy and to pick up your prescriptions, even if you don’t get out of bed for anything else.

NEVER neglect your pills. Especially now.

The above is an excerpt from Deborah Fruchey’s book, Is There Room For Me Too? 12 Steps & 12 Strategies for Coping with Mental Illness. It is available on Amazon.com, from Kindle Editions, and in Apple’s iBook store. You can visit the author’s web page at www.lafruche.net.