Wednesday, May 30, 2012

and miles to go before I sleep....



I read this poem a lot to my youngest sister when she was three and four years old. We both memorized it. Not long after that my dad stopped talking to me for six years because of stuff related to me being psychotic, and I didn't get to see or talk to my sister at all in that entire time.

She's twenty now. We barely know each other.

I still like this poem.

I'm having a hard time right now. Per usual, I cannot sleep. The thoughts are bad. I fight them. I don't give up. This, too, shall pass. This weekend I have to go on a trip to a conference for an organization I volunteer for. I have to be alright and put up a good front.

"Stopping By Woods on a Snowy Evening"

Whose woods these are I think I know.


His house is in the village though;

He will not see me stopping here

... To watch his woods fill up with snow.





My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.




He gives his harness bells a shake

To ask if there is some mistake.

The only other sound’s the sweep

Of easy wind and downy flake.





The woods are lovely, dark and deep.

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.




Robert Frost, “Stopping by Woods on a Snowy Evening” from The Poetry of Robert Frost, edited by Edward Connery Lathem. Copyright 1923, © 1969 by Henry Holt and Company, Inc., renewed 1951, by Robert Frost. Reprinted with the permission of Henry Holt and Company, LLC.



Source: The Random House Book of Poetry for Children (1983)



Tuesday, May 29, 2012

What is reality, anyway?

"I haven't had Faith in Life  meaning Reality - whatever it is or happens. There is nothing to hold onto but reality."
                 ~Marilyn Monroe

So, I saw my psychiatrist for the last time today. He asked, "So are you a government employee?" I said, "Sometimes". And that pretty much sums it up. I am a CIA agent part of the time, at least in my reality. And other parts of the time, I'm just myself.

Sigh.

This does get tiring. I have to say that perhaps my life is more interesting from all the time I've spent thinking I was working for the government over the years, but at the same time, it does get very tiring. I also wasted a lot of my life like this. But then, "this", is happening right now as I write this. So I can't really talk about it like I'm past it.

I saw my therapist for half an hour today before I went to work. I told her it's hard to talk to people about this because I always think the person I'm talking to works for the CIA if I tell them. She reassured me she does not work for the CIA, although she said sometimes when she watches the X Files she wishes she did. I thought that was funny. But it's true; when I was talking to her I was really feeling like she was an undercover agent the entire time.

I don't know what has caused this to happen right now. That's part of the reason it's hard to believe it's not real. If it's all just part of my illness, then why doesn't this medication make it go away, when I'm on enough medication to kill ten elephants??

All day at work today, I've been sitting here thinking that I'm talking to operatives who are questioning me to secretly gain intelligence that I somehow have. This is how it goes. One person said "Russia". Another person said, "April". These were clues. Then some man called who totally sounded Russian. He told me he was an international student. I'm sure it this was all covert operations they wouldn't be so obvious about it that I would be consciously aware that this was happening, so that is one reason I am telling myself it's not real.

Not real. Not real. Not real.

I repeat this mantra over and over. Does anyone relate?

I tell myself, "It's just a thought". That's what my therapist said to do. Point out to myself, "It's just a thought. There goes that thought again. That thought was here before. I know what that thought is about."

But it is still happening.

I am on 50 mgs .of Risperdal Consta, IM and 120 mgs. of Latuda, not to mention Prozac, Klonopin, Ambien, Vistaril, Synthroid, Cytomel, Mothocarbomal (I forgot the company name for that drug, but regardless most stuff I take is generic), Omeprazole (I forgot the company name for that too), sometimes Naproxen for muscle pain, Amoxicillin (antibiotic for the fact that my immune system generally sucks), vitamin D prescription strength, Vitamin B-12 sublingual, multivitamin, Folic Acid, Melatonin, and sometimes cold medicine.

Like I said, enough medication to kill ten elephants. Perhaps even twenty.

C'est la vie.

Sunday, May 27, 2012

Jesus, Mary, and Joseph...

My grandmother ("Nanny") who passed away last week was a devout Catholic, who was fluent in what my uncle termed, "the poetic usage of profanity". She liked to curse. One of her favorites was, "You goddamn dummy!", and another was, the classic, "Jesus, Mary, and Joseph!". As in, "Jesus, Mary, and Joseph, Jenny, how can you drink so much iced tea?!" This phrase would always be followed by a body-shaking, cackle of a laugh. I will never forget her cursing or her laugh. She was not what you would call the "typical grandma". She was a witty woman, a strong woman, a sometimes stubborn and strong-willed woman, and a woman who had strong opinions. As people have said often since she passed, you always knew where you stood with her. She was not fond of everybody she met, but she was fond of most of her family and she loved them all with a heart as big as the sky. Yet, she played a mean game of Scrabble, and if you ever thought she couldn't beat your ass at that with one hand tied behind her back, she would be more than happy to prove you wrong. If you were lucky enough to know a word she had memorized from the Scrabble Dictionary and somehow manage to get a high score, she would say, "Even a blind squirrel finds an acorn every once in a while", or "Even a stopped clock is right twice a day". That was my Nanny.

Earlier this week, I flew to Maryland in a plane with my two brothers, one of my sisters, my dad's wife and one of her daughters, where we met up with my dad and my other sister who were already up there. We visited with my grandfather, who is having a terribly difficult time after losing his wife of 60 years, the love of his life. We attended the viewing, which was horribly difficult because seeing her lying there obviously made the reality hit home. I cried at the viewing more than at any other time this week, or in recent history. My grandfather, at the end of the viewing time, knelt down at her casket and kissed her goodbye. Then he stood, turned, and said to us all, "She always said she wanted to go before I did." He looked directly at me and said, "She always made me promise I would kiss her goodbye." I gave him a hug and a kiss on the cheek and said, "You did, Pop Pop. It's okay." A lot of people cried when he said that. They had a great marriage, unlike most married people I've ever known, and certainly unlike my divorced parents.

The next day, we attended the funeral. Out of the twenty-five grandchildren, of which I am the oldest, twenty-four of us were present. All of the grandsons read a piece in the ceremony, which was a Catholic service at the same church where my parents met, where my parents and numerous other relatives got married, and where I was christened as a baby. All of the granddaughters walked down the aisle with the communion materials, and we went in order from youngest to oldest. It was a moving service. I am not religious. Dare I say it, even in this post, I really don't believe in god. But it was a moving service nonetheless. It would have probably been even more moving if my aunt who wrote a eulogy had been allowed to read hers, and had not been told it was "not Catholic enough", but that is how my family is. So be it.

After the funeral about 200 people went to the Knights of Columbus Hall, and we cousins got pictures of ourselves together with our grandfather - the first time in history that so many of us had been in the same room at once. Most of the cousins live in Maryland, except for my siblings and I who live in Florida. So that is why we are not usually together all at once. My grandfather got an ice cream buffet, because he is infamous for his obsessive love of ice cream, and this was meant to cheer him up a little bit, or at least offer some kind of comfort. And that was the end of the traumatic day. Or so we thought.

The nightmare got much worse when my brother and sister and I got back to my other grandmother's house, my mother's mom. That is where the three of us were staying on this trip. Lots of people in my dad's family had asked me about my mom's mom, and I had told them all how well she was doing, because she gets around great on her own, driving her car, and living alone in her two-story house with a basement. Just a couple months ago she came down here to go to Disneyworld for a visit, and rode a scooter around, running into people. During our trip this week, she took us to the mall so my brother could shop for a suit for the funeral, to Olive Garden, to Target so my sister could buy a dress, and to another store, so I could get something I needed to wear, and she was energetic and lively the entire time. Then, the day of the funeral, while we were at the services, she went, by herself, to the mall, and to the grocery store. Ten minutes after she got home she collapsed in her living room.

I saw her fall, but I couldn't tell if she had tripped or just collapsed. They said later that she was so dehydrated she probably just collapsed. She hadn't eaten or drank water hardly at all for the entire day. My sister, luckily, is a Registered
Nurse, and she ran up to my grandmother, took her pulse and yelled that she couldn't find a pulse as I searched frantically for a working phone (she has a phone in every room, but they were not all charged), and finally called 911 from my cell phone. I told the 911 operator everything my sister said about my grandmother's vital signs, and for a couple minutes my grandmother was breathing but not talking. Then she began to respond. The ambulance came. My brother and I were running around trying to get them her medications so they would know what she took, and unlocking the doors. She was taken to the hospital. They took a CAT scan and said she had bleeding on her brain. This was in the same hospital where my other grandmother had been the week prior, when she was dying.

It probably sounds like this story has the worst possible ending, but the good part of all of this is that she is okay enough that they sent her home yesterday. This all happened on Tuesday. Yesterday was Friday. So, she was not in the hospital long. I was so scared, though, on Tuesday. I thought we were going to have a second funeral to go to. My grandmother is 84 years old. She was lying on the floor semi-conscious. It was horrible. Then, to make matters even worse, my mom kept calling me on my cell phone to scream at me, because I drove my grandmother's car to the hospital and supposedly she was going to be really mad that I drove her car without permission. She could have died. I hardly think she was worried about someone driving her car three miles at a time like that. But that's how my mother is. She will take anything and everything out on me, by screaming at me about it, and blame anything and everything on me, or on someone else, so that she has someone to blame. It was not a pleasant night. It was not a pleasant week.

The next day, we had to fly home. All of us had to go back to work, and I didn't see how even staying there one more day would have made much of a difference because my grandmother was in the hospital, and my other grandmother was dead. Frankly, I was ready to go home. I got home and that same night I went to a meeting of the feminist organization I belong to and got reelected as our chapter's secretary. The next day I went to therapy. The day after that, I went to work, and then I saw my psychiatrist for what might have been my last appointment with him. His last week at the community mental health center is next week. I am totally going to be lost without him being there, because I do not know the other doctors there at all. He told me that after everything I have been through in my life, I should be able to easily get through changing psychiatrists, but I told him I have to change psychiatrists every year or two for some reason or another and I'm tired of it. I don't want another new doctor. I don't want a doctor who isn't as good as the one I have now.

Today, I went to the movies with my mom and my friend K. who I hang out with sometimes. We then went and got something to eat and visited my mom's house so my friend could see my mom's dog, because she likes dogs (I'm not a dog person). And then I was really tired and just wanted to go home.

I really am glad for a couple of things. #1 it is now after midnight on Saturday so the week is over. The week from hell, that is. #2, I dropped my class last week so I have no summer courses and even though I think that's a regrettable mistake, I really didn't need the stress at this time of the course that I had been enrolled in. #3, the increased Latuda seems to be helping me, so that I'm not spending all my time thinking I'm a CIA operative anymore like I was for a few days last week. Yes, I'm glad for those things. Also, #4 I'm glad, as always, that I have this blog and you readers to turn to and talk to when things get overwhelming, as they have gotten recently. I don't know what I would do without you.

Some stuff is still going wrong brain-wise. But I don't want any more medication increases. What's going on right now is at a level I can deal with, and it is manageable. I am not going to end up in a hospital or anything. It's really minor in comparison to how it could be and how it has been before many times. It's just things like seeing signs in license plates, and second guessing whether or not people have been involved in mind control programming of my brain because they work for the CIA. Stuff like that. It's not majorly serious.

But I will say, I'm really tired. On top of all of the stress mentioned in this post, my brother has disappeared to some place, and I suspect that what is going on with him is not good. So that is another problem. But what can I do? I cannot fix substance abuse problems any more than I can fix death or sickness. Indeed, if there is a god, I'm not it. I used to think I was, once, but luckily medications brought me out of that particular delusion. So I no longer feel it is my job to save the universe. Right now, I just wish I could get some sleep. Thanks, for listening.

Jesus, Mary, and Joseph....

Saturday, May 19, 2012

comfort

Thank you all for your support and kind words. Thank you for comforting me, and for always listening.

I am having a difficult time, but I will get through it one way or another.

It is hard for anyone when someone close dies. I know my whole family is having a hard time now.

My grandmother had 25 grandchildren. I am the oldest of them all. I knew her a long time - 37 years. It is quite a loss.

I want you to know that I went to the NAMI Bowling Tournament today with my mom, to give the $125 I raised in donations from people like you, and everyone who sent a donation will receive a receipt in the mail. More donations are still being mailed. NAMI is a wonderful organization, and I know good people there who are very kind to me. It was good to see some of them today. While we were there, my mom reminded me that my grandmother, the one who passed away the other day, was once on a bowling league.

As for the delusional thoughts, I'm trying to keep them at bay as best I can. It will be important to do that to get through the next few days.

My grandmother wanted bagpipes at her funeral. She told me so 13 years ago. I told my dad today, so hopefully there will be bagpipes. The day before she died I saw a man in a kilt, like a bagpipe player's outfit, at a gas station. It seemed like a sign. But then, these days, many things seem like signs.

I don't know what I'm going to do about losing my psychiatrist. It's very unfortunate. I am very demoralized that this has to happen right now. I really trusted him and liked him a lot. I don't easily trust people with my deepest secrets. The delusional realm is something that I don't reveal to just anybody or even just any psychiatrist. It was many years before I got properly diagnosed because of all the things I kept to myself. It is hard to trust someone with these things and then find out they're leaving.

I wanted to share with you a poem I found which made me feel comforted. It is below.



Your pain is the breaking of the shell
that encloses your understanding.

Even as the stone of the fruit must break,that its
heart may stand in the sun, so must you know pain.

And could you keep your heart in wonder
at the daily miracles of your life, your pain
would not seem less wondrous than your joy;

And you would accept the seasons of your
heart, even as you have always accepted
the seasons that pass over your fields.

And you would watch with serenity
through the winters of your grief.

Much of your pain is self-chosen.

It is the bitter potion by which the
physician within you heals your sick self.

Therefore trust the physician, and drink
his remedy in silence and tranquillity:

For his hand, though heavy and hard, is guided
by the tender hand of the Unseen,
And the cup he brings, though it burn your lips,
has been fashioned of the clay which the Potter
has moistened with His own sacred tears.


- Kahlil Gibran

Friday, May 18, 2012

How much more bad news can I deal with this week?

This week has been a total nightmare. Obviously, the worst thing that happened lately was my grandmother passing away yesterday. That alone would have been terrible enough. But on top of that, I blew a mental fuse and had to drop my class because of the professor being (apparently) a CIA agent (and there's more to this story but I'll save it for another time when I can see exactly who I am talking to and get their Social Security numbers memorized before I divulge it). Anyway, so that was unfortunate. I could have gotten another A in that class if things hadn't gone awry as they seem to have done. Further, because I obviously want to go to my grandmother's funeral, I had to bail out of the NAMI conference where I was supposed to be hosting a group discussion on auditory hallucinations. So that was really too bad, because I was looking forward to that, and was going to go for the whole four days of the conference and really try to enjoy myself. But we cannot plan when terrible things will happen in this life.

To top it all off, today I went to see my doctor. I probably never mentioned this before, because I get paranoid about who is reading what I write here and I don't know who all that is, but let me just tell you this doctor is the best psychiatrist I've ever had in my entire life. And I have seen a number of psychiatrists in my time. The first one, I saw when I was 15, then one from 16-20, and then there was another one in my early 20's, and then there was one at the agency where I lived in a group home, and then then there were THREE more at the mental health agency I go to now. This is not counting the numerous psychiatrists I saw for one visit or perhaps two, or the numerous and sundry psychiatrists I saw in all the many hospital trips I had the great fortune to take. Yeah. This one, out of all of them, is by far the very best. He's smarter, and understands me better, and he stays up on research. Plus because he is the medical director of the place, he has time to do a really thorough job which other people don't have time to do in this horrible healthcare system that we have in the United States.

And guess what he told me today? He's leaving. This is terrible! Really, really terrible. Going to a psychiatrist when you have a serious mental illness is not like going to a dentist when you have a cavity. It is more like finding a good obstetrician when you are pregnant with your first child. It's rather important. Like finding a good pediatrician you can trust with the lives of your children. We entrust these people with OUR BRAINS. My whole life goes into their hands when I fork over my brain to them and the powers of their prescription writing. This is serious stuff, not to be messed around with by amateurs. I do not want YET ANOTHER new psychiatrist or nurse practitioner who will have to get to know me from atom and who I will have to blindly trust to go where no man has gone before. I do not want to go through this nightmare, and I really do not want to go through it right now. This is a terrible thing.

I mean, I am going to have this illness for life. Life. My entire life. And here I get psychiatrists who don't stick around more than a year or two at the most! Then they leave the agency, or my insurance refuses to cover them because they have the wrong nurse practitioner's license or some other crap happens. And then it's all over. I have to start AGAIN. Like taking your pregnant self to a new ob-gyn when you're nine months pregnant. This is not my idea of a good plan for my life. I thought this psychiatrist was going to be around for the long haul. Obviously, I can see why he isn't. He probably doesn't get paid half as much as he should working in the community mental health setting. Nobody gets paid enough in those places, particularly not in Florida which ranks 50th among the 50 states, when it comes to mental health and substance abuse funding. So I can't say I blame the guy for packing his bags and hitting the road, but I really like this psychiatrist. So this is a horrible loss to me. My person who handles my brain has just left the job to someone else. (To be fair, he did tell me he has been there for 17 years, and I do know this is true, because he actually was my first doctor there, when I went there for a few months about 16 years ago and took Wellbutrin for Attention Deficit Disorder and depression).

Whilst I complain, I will say that the psychiatrist let me spend an inordinate amount of time in his office today talking about the stuff I refuse to write about here, because I don't have your identifications. So that was helpful. I mean, he was trying to help. But at the same time, I am really upset that he is leaving.

I'm considering leaving the whole community mental health environment behind me and going somewhere where people tend to have more permanent jobs. I don't know who I would go to - that is the problem. You would think with all the people I've met in NAMI that I would know the name of the best psychiatrist in town, but such is not case (unless my current one is the best in town, and that very well could be the case). I don't know anything about any good doctors to turn to. I am a total loss here. This is really unfortunate.

I have a good rapport with this psychiatrist, and I really don't just have that with everybody I meet. It takes a long time to create with most people, and with some people I cannot create it at all. You don't just hit it off with everybody you meet. Not everybody understands complex situations like the kind of mental health issues I have. But this doctor does understand, and when he doesn't he at least has the decency to admit that he doesn't know something rather than pretending for ego's sake that he has all the answers and stuffing me full of diabetes-inducing drugs. I like this psychiatrist's approach. He doesn't switch me off ten meds at once, or start me on nine at the same time, like some other doctors I've known who ruined my life. I don't feel like going through that again.

This is terrible.

Also, I am really not looking forward to going to a funeral. I miss my grandmother and I am very sad that she is gone. I really don't want to be around all of my relatives - most of whom think they're so much better than I am - and deal with their judgements of me. I really do not want to do that right now. I also do not want to have to deal with traveling on an airplane when I'm a little paranoid about being watched, followed, observed, and monitored, pretty much anywhere I go. Homeland security doesn't comfort me at such times. It makes me lose it.

But I will survive somehow or other. Hopefully, I can do it without winding up in the hospital. I made my doctor promise that I'm not going to a hospital any time soon and that's another problem - there are doctors out there who would send me to one in a flash! That is the absolute last thing I need right now. Every single time I have ever been inside a hospital, they have put me on so many medications that I did not even know what drug was doing what, and I did not know which side effects were caused by which drug, and I never even stayed on that same stuff when I came out of the hospital anyway. So going to a hospital is not a helpful thing all the time. For when you're suicidal, or if you're ever a harm to other people, going to a hospital is good. But for when you're dealing with symptoms you've been dealing with for thirteen years or longer, going to a hospital is really not useful to do. Especially since they usually keep you for about three days. Anyway, my doctor does not think I need to be in a hospital, so that is good. I don't even know why I'm talking about hospitals. I haven't been in a psych ward since January of 2008. And I don't intend to go inside one again in the near future. I'm just getting nervous about everything that seems to be going wrong at the same time right now.

When it rains it pours.

I guess the sun will come out tomorrow, as Annie would say.

Also, I am now on 120 mgs of Latuda, which is probably not healthy for my liver, but perhaps will help with the apparently miswired circuitry in my annoying brain, since I am supposedly a bit delusional right now about certain things.

Letter to my Grandmother who Left Us Today

Dearest Nanny,

How can you be gone from this world? I haven't seen you in a year, but I feel your absence around me like a gaping whole in the universe. You were so much. You embodied strength, endurance, wit, humor, and character. You taught me to think for myself, and to believe in myself.

Nanny, remember when we picked strawberries and tomatoes in your garden in the backyard of your old house? Remember how you taught me to snap fresh green beans on the back porch? Remember when you made clear to me that cereal was not meant to be dumped in the sink because not all sinks had garbage disposals? I was so embarrassed about that.

I remember when you played with Barbie dolls with me, and when we pretended we were the Barbies ourselves, and we were royalty, "up there", as you'd say, and would order people to be our servants. You had such a good sense of childlike humor and you knew how to let your guard down to have fun with a grandchild. As your oldest grandchild, I got to take advantage of your youth when I was little, and see your playful side that the later ones maybe didn't glimpse as much.

I remember when we kids would run around your house yelling, "Freak out, Nanny, freak out!" to terrorize you. You would eventually succumb to our wishes and hollar at us, "Bap, Bap, BAP! Babboo, babboo, BABOO!! STOP IT YOU DAMN KIDS!" and we would laugh while the adults got nervous.

You taught me so much. I remember your words of wisdom, your encouragement for me to believe in myself. Your words of kindness that came through despite your tough exterior.

Nanny, when I was psychotic the first time, it was only you who told me to see a psychiatrist. What did you know that I did not know yet? I know you had seen psychiatrists yourself, and I know you suffered from  a lifelong battle with depression. What secret pain did you hold inside you all those years, never to be talked about because of the stigma of mental illness that enshrouded you? Nanny, I understood all that time you spent lying in bed. I understood too, your physical illnesses that were maybe never taken as seriously as they should have been because you didn't question any doctors, and you were a woman with diabetes and hypoglycemia and hypothyroidism, which are common problems for women which commonly don't get taken seriously by male doctors.

Nanny, it was hard to keep in touch in recent years. You never understood why I had behaved the way I did when I was sick, because no one explained it to you (or to anyone). I wrote letters to try to explain, but I never knew if you got them and read them and understood. I wished you could hear well enough to talk on the phone, and I wished I had more money to come visit you more often than I did. I only saw you about three times in the past thirteen years, because of financial issues, and because of the distance that had grown between me and the whole family, caused mostly by my illness. Nanny, you let me live with you for a year when I was 23 and had nowhere else to go, and I always appreciated you for that. I want to make sure you know that I never stopped being grateful for what you did for me. I wrote you letters like this when you were alive, but you never wrote back. Maybe you couldn't. Maybe you did not know what to say.

Nanny, I hope you weren't in too much pain, or suffering too much in the past few years in the assisted living facility, and then the nursing home. I hope you did not go through more than you should have had to endure. I think at the end, you had decided it was time to go, and you made the choice to leave  rather than undervgo medical interventions. I respect your choice, which you had every  right to make.

Nanny, I think you would be proud to know that I talk to people about mental illness now, and it's not the end of the world. I get the treatment I need, and it helps me. I learned from watching your life, that I had to speak up to doctors who dismissed my concerns. You and I had so much in common. I would like to think I have a smidgen of your wit, your humor, and your intelligence, even if I could hardly ever beat you at Scrabble because you had the Scrabble Dictionary memorized.

Nanny, there was a deep, dark family secret that you had been in a psychiatric hospital. Guess what? I have the same deep dark secrets, and I have many. But they're not secrets to me. I tell people about them. I'm free to not be ashamed. I have people who accept me, mental illness and all, and don't shun me for it. I wish that you had been the recipient of such understanding, empathy, and acceptance. I wish you could have written a blog about depression and found readers you could relate to.

Nanny, you had so much to be proud of. You had seven kids, 25 grandchildren and numerous great-grandchildren. But, more than that, you were a strong survivor, and a woman who endured painful events like losing both of your parents in the first few years of your young life, as well as losing siblings later. Your laughter is what I will always remember best.

Nanny, I love you, and I will never forget you or let you be forgotten. I also want you to know that I harbor no hard feelings toward you for kicking me out of your house when I was psychotic and saying terrible things about my father because I was delusional. You didn't know what to do with me. It's understandable. I want you to know that I talk to my dad now, and I know what delusions are now. And I'm okay. We're all going to be okay. I choose to believe that you are peacefully resting in a comfortable, happy place, and that you know you are loved. Nanny, I miss you.

Tuesday, May 15, 2012

my grandmother is dying

I just found out, my dad's mother, my Nanny, is getting moved into the hospice part of her nursing home tomorrow. She's in Maryland, and I live in Florida. I can't afford to fly up there right now. No one knows how long she has left. This is very sad. She's a strong woman, who had a difficult childhood. Both of her parents died by the time she was six years old. She was raised by her sisters. She had seven children, and she used to beat anyone who would play Scrabble with her with one hand tied behind her back, because she is smart. I have a ticket to go up there at the end of June, but I didn't buy the ticket as it was paid for by an organization that is sending me to a conference there. I want to see her before she dies, but I also want to go to her funeral and pay my respects, especially because my grandfather and she have been very close for most of their lives, and I want to see him too. I don't know what to do.

secret agent man

I'm having some thoughts. I've had these thoughts before. Generally they indicate a problem. But it's really hard to know that there is a problem, because part of the thinking process with the thoughts is that they are secretive, and you don't discuss them with people. Besides, I think my doctor is out of town this week, and I can't go in next week because I'll be at the NAMI conference, so there is nothing that can be done anyway. Even if there was an appointment, there is still nothing the doctor can do. I'm already on two antipsychotics.

Sometimes I wonder if I bring this stuff on myself. Then I wonder if I'm not being lied to about being mentally ill. There was this quote in a book I read on Schizophrenia and recovery last fall. This young man said something like, "Of course I would prefer to think I was a C.I.A. agent rather than a mental patient. Who wouldn't?".

Thoughts like that. I'm not sure why but this has been creeping up on me and now it's here, saying, "Hello!". It should be interesting trying to get through a course taught by someone who I think is a CIA agent performing mind control and secret communications with me.

Perhaps this will go away soon.

I probably won't mention it again.

Monday, May 14, 2012

Function, stupid body, function! Freakin' fibromyalgia...

Freakin' Fibromyalgia! God. I hate freakin' fibromyalgia. Every damn time I think I put this crap behind me, it returns, to laugh at me. My body simply IMPLODES. It rebels against itself. I have an autoimmune disease called Sjogren's Syndrome, and that is the definition in my terms of what an autoimmune disease is: your body imploding on you. How freakin' annoying! And what poor timing this always is for me. God. I am so sick of my annoying body failing me....this has been going on for over half my life!

Sorry there are no pictures yet (I did take a couple but I simply lack the energy to upload them on my slow computer tonight), of my cleaner apartment. It's not completely clean, as it should be, because of my goddamn body failing me ONCE AGAIN. I should have known this was going to happen. The minute I try to live like a normal person, the minute I try to do just a little bit more of what anybody else who is my age would be able to do, my body kicks me in the ass and says, "Hell no! I will not cooperate with you!". Lovely.

Today was the first day of my summer session for school. So guess how much I slept last night? Oh slept? Is that what I said. Oh yeah, that's something I could do once, years ago. I seem to have lost that ability permanently at some point in the distant past. So once again, last night, when I knew I had to be up early the next morning, I was up until early the next morning, unable to sleep. Wonderful. Just what I needed with this new schedule. For six weeks I'm in this class that means I have to leave my apartment before 8 AM to get to school. I then get out of class at 12:30. I then go get some lunch and head to work where I work from 2 to 7:00. I get home about 7:30. I thought I ought to be able to do this. After all, it's only for six weeks. It's only a little summer class. Big deal.

Right.

Freakin' Fibromyalgia flared up so bad after I spent four hours cleaning my living room Saturday that I can barely walk. I'm in complete pain at the moment. Epsom salts and a heating pad do me no good. I called to get an appointment at the place I used to go to for physical therapy where they do massage and use this handy, dandy little electronic stimulation machine to warm up your muscles and help your pain. Of course I can't get a goddamn appointment without a prescription from my rheumatologist. Of course I can't get an appointment with her at a convenient time (since I have practically no free time now), so I have to ask my boss for work. She responds by telling me it's important to take care of my health and then sending me an email that from now on I need to be at work at 8:15 AM on Fridays since I don't seem to arrive in a timely manner when I'm supposed to be there at 8:30. She didn't mention whether she was planning on paying me for this extra fifteen minutes without sleep. *(Obviously, I am going to make sure I get paid, because I believe in the labor movement).

Anyway. So that's how today went. I practically crawled home, circa the body I had in 2003, which barely functioned. This is just great. Guess what I get to do tomorrow morning? Wake up and do this entire thing all over again, because this class meets two days a week, on the same two days that I work until 7 PM. I thought I could do this. By all rights, I think I ought to be able to do this. After all, I thought I put major pain behind me!

Ha.

Freakin' Fibromyalgia. Oh, how I hate thee. Let me count the ways, you goddamn misery-inducing nightmare from hell.

It might be alright if I could keep doing biofeedback. I started doing biofeedback at the counseling center of my university a couple weeks ago so I could teach my body to sleep again. It seemed to be helping me learn how to relax, or at least how to breathe. I pictured myself someday possessing the ability (which I have not ever possessed before) to be able to meditate. I thought I would learn to control my emotions with ease and sleep like a baby, maybe. But now, now I have no goddamn time to even learn how to relax! It doesn't fit in my stupid schedule!

I am not sure I should be taking this class. Then again, I would feel like a failure if I dropped the class. But let me tell you what this class is like. This professor is the most confusing, scatterbrained person whom I have ever had the misfortune to have to listen to talking for three and a half hours straight. He rambles on nonsensically about things that plainly elude me because I must either be the stupidest person on earth or I'm sitting in a room with the craziest professor on campus. The guy literally makes no sense!  I left feeling like a downtrodden imbecile who was doomed to fail the course. Luckily, my classmate who took notes for me last fall in another course is in this class and she sat next to me and I asked her if she could give me copies of all of her notes all semester, which she said she would do. I feel bad asking someone to do this, but frankly, I can't take notes on something when I have no idea what is being discussed! I sat there like a deer in headlights, just baffled the whole class period. My classmate who is taking notes for me said, "He uses a lot a of extraneous wording, I think". Yeah. To put it mildly. This  guy could get someone to Tahiti trying to tell them how to find their way down the block if he was asked for directions. You might even end up on the moon if you asked him for directions. He is about as easy to understand as E=Mc2. God. What did I sign up for?

I saw my social work professor in the hallway after class and I miss her classes terribly now! They were so logical and easy to understand. I am going to meet with her tomorrow to discuss my future career prospects in the social work field considering that I'm a mental patient and a lot of people know  this fact, so I think I need to start considering the realities of how that is going to affect my job opportunities in the mental health field. She said she would be happy to talk to me about this. She is so nice. She makes so much sense when she talks. Not like this professor I just started with! The only good aspect of this  class is that there are three grades for the whole semester: a midterm, a final, and a presentation. I feel like if I study the books (there are a multitude of books most of which he has "photocopied") enough then I can do okay on the tests and any monkey can b.s. their way through a Powerpoint presentation so maybe I'll pass even if I learn nothing for all the money this course is costing me.

I sound like I'm complaining a lot. Sorry about that. It's been quite a day.

Good news: I raised $110 for the NAMI Bowlathon so far that I am aware of. Next week I take off for the NAMI Peer conference (hopefully my body will work well enough for this to happen), and I'll get away for three days from my job, and also from a day of school. It's all been paid for a by a scholarship, so that worked out well. I am going to be hosting a group discussion on hearing voices and how to handle them, as I was asked to do by someone in NAMI, so we shall see how that goes. Let me know what you do to help yourself when you hear voices. I need to make a handout that I can give out on how to cope with auditory hallucinations in the event that your medication isn't working. I tink that this would be a useful thing to give people. So far, what I can say is: earphones, Mp3 player or CD Walkman with music, listening to music from a radio (unless that makes you hear things from the radio), rest, avoiding noisy places, avoiding Walmart and DisneyWorld like the plague, and telling your doctor to adjust your medication immediately. That's about the extent of my tips on what to do in the event of auditory hallucinations. So I need to come up with some more ideas, as you can tell.

Speaking of auditory hallucinations, by some miracle, I did not hear my damn phone ring when it wasn't ringing today. So that is good. Perhaps tonight I will get some sleep. One can hope.

On the positive side, I found my Mp3 player that I had lost months ago! That is wonderful. It helps me.

Goodnight, world.

It's 8:30 and I've had all I can take for the day.

I will post pictures of my apartment when I get it more clean. So far the bathroom and the living room are in better shape, but that is not really enough.

Saturday, May 12, 2012

Squalor - Again (and it's okay if you read this, whoever you are)

I thought more about what I wrote regarding how I didn't want anybody I know to read this blog. Actually, that was not entirely fair of me to say. After all, I do have one friend who is a former therapist, and a women's rights activist, who I know reads my blog from time to time, because I told her about the blog, and she told me she has read it. I am okay with that.

I have also told people at the Crisis Intervention Team trainings (C.I.T.) for law enforcement officers when I've spoken to them, and to the entire staff of the community mental health agency where I go for treatment, when I spoke to them a year and a half ago at their training day. I did tell them all the name of my blog. I sort of forgot I did that, and assumed, I guess, that nobody had ever actually read it from there. But it's possible that someone did. So I just wanted to say, if you're trying to understand this illness that I have, or mental illness in general,  then it's okay if you read this. I'm not putting my last name here, but if you know me and you read it, then so be it. I just am a little embarrassed when I wonder if someone has read particularly personal posts, and it does sometimes make me slightly paranoid. But then I tend to get slightly paranoid pretty easily. For example, I have this ongoing paranoid belief that I'm going to run into my psychiatrist or therapist in some public place and they are going to think something about my behavior. The funny thing is, it would be not that surprising if I ran into someone like that because I have run into such people in public before and it was really not a problem. But it starts to get attached to the paranoia about being watched. And when you have had many years where you were very paranoid about being watched, it can be scary to not know who has read your blog that tells so many personal details about your life. But in the end, it is my fault for telling people about it!

Thanks for the comments you readers left about this. Thanks a lot to Lil for what she said, that was very kind.

Okay, so now I am going to discuss the squalor of my apartment (once again). Yes, it went downhill again (pretty badly). To be honest, I haven't been using regular dishes for months. I just use paper and plastic and throw it all out. But when I have, on rare occasions, needed to cook something rather than microwave it, I never washed the pans. So gross! I know. I don't know what my problem is with housework. I am very bad about it.

So then I got this new couch, but I failed to clean the apartment to make it presentable enough for the new couch to be shown to anybody. So nobody has been here to see it, not even my mom who wants to see it because she went with me to the store when I was looking for a couch. My bedroom is covered with clothing. Literally. I mean, you cannot see the floor in there. This is not rare for me, actually, this is really the norm for me. But it doesn't seem to be the norm for much of the general populace.

I got rid of the flies, so there are no bugs, but I did not clean the place like I needed to. The bit that I cleaned when I was becoming hypomanic failed to stay clean for long. Too bad I no longer have that extra energy to help tackle this dilemma.

So, the thing is, I really have to clean now. My summer class starts Monday, and tomorrow is Mother's Day so I'm not going to be able to clean all day tomorrow. That leaves today - Saturday. I have to clean today. I am writing this here honestly because it's the only way I know to force myself to actually do it. So what I am going to do is, clean a lot today, and then post pictures sometime in the next week of my apartment cleaner than it currently is.

Yes, that is the plan. I feel pretty sure that I can force myself to do this if you people are reading what I'm saying here, and I can't backout of it and humiliate myself. So hold me accountable. Next time you come here, ask me if I did not post any pictures of a clean apartment, why they are not there. Thanks!

Blogging can be very helpful for things like this.

Also, guess what? I raised $90 so far for the NAMI Bowlathon, and that's just money that was given to me personally to give to NAMI. I don't know if some was also mailed directly to NAMI so there could be more! This is great. Thanks to anybody and everybody who donated or still plans on donating. The Bowlathon is next week, May 19th, so I hope to have raised some more by then.

Okay, so back to my apartment. I would post "before and after" pictures, but I think that would be too humiliating. My mom, when she sees my apartment like this, tends to tell me things like, "Your case manager is going to see this and call the police and they are going to haul you off to the hospital and lock you up! And you are going to get evicted too!" She really did say that exact thing about a month ago. So I don't need to post the "before" pictures here. Just picture, you know, that TV show Hoarders, and you will understand that I am talking about a serious mess. Okay, it is not quite as bad as the people's houses on Hoarders, because I live in an apartment, and if it was really that bad, I obviously would have been evicted for it a long time ago! But just picture a major, major, disgusting mess. Utter squalor. That is the current state. Now we shall see how much I can clean in one day. I have tried following that Flylady site a couple of you recommended, but I haven't kept up with it much as you can tell. They send me emails, but I never take the time to read them because I don't have much time to do that during the day. Anyway, so after I get through this major cleaning today, I will have to try a LOT harder to do a better job of following techniques for daily housekeeping like those mentioned by the Flylady site.

Now, off I go to turn on music and clean. It is 12:17 PM on Saturday. We shall see how long this takes.

Thursday, May 10, 2012

Ode to an Old Couch

 In Memorium to the Old Couch: Pictures from 2009 when it was in better shape


There once was a couch;
it sat in my house
for years on end,
it sat in the same spot.

Things got moved around.
New apartment was found.
I saw the couch started to rot.

Covered in soda stains
and Cheetos remains
with cat hairs and stray threads about

My mom called it disgusting
this old couch a-rusting
and I decided it would have to go out

Poor couch o'mine,
you held many behinds
and were comfortable for
all the while

The cats lived on you
and you never withdrew
you sat there -
a big, cushy smile

Ousted onto the curb
without but a word
the couch went last week when it left me

The men who took it out
practically had to shout
insulting comments toward the couch

They said it was dirty
and the neigbhors got nosy
as the couch sat deserted, alone

I put ads on Craigslist,
said, "come here, please take this",
but the couch sat rejected by all

Until a lone, homeless man,
without any helping hand,
found a bed for a few nights
on the couch

Oh, happy was I to learn the good news
a poor man had gotten a snooze,
but the neighbors were mad
and not at all glad
that the couch had now found a new friend

The Salvation Army was called
for assistance
but said "We do not want this"
when they arrived and saw the couch damaged

They did not help the poor man
and the couch they abandoned
leaving both to rot on the side of the road

Then the neighbors took over
while I was at work
and put my sad couch by the dumpster

Gone was the man's bed
old couch good as dead
sitting by smelly, old garbage

The city was called
because folks were appalled
that the old couch was outside their building

Then today the day came
my couch no longer remains
it has been taken away to some dump

So long, my good couch
this is a lonely 'lil house
without your fluffy cushions filling the room

A new couch has replaced you,
so sad to deface you
no one will be as loyal as you

This new couch won't last
or outlive the cats
and piece of my heart is now torn

I miss you old couch,
on which I laid like a louse
for six years in my little apartments

For now that you're gone
I do feel forlorn
And my home has an empty compartment

New things can't replace
the items of comfort
that we learn to love in our lives

I will never forget
the old couch, where I sat
and the cats and I do feel deprived.....


I used to write poetry. Not stuff like this, actual attempts at real poems, but I mostly sent them to boys who I wanted to have love me in my 20's. But the love always failed to appear (for some crazy reason). So now I just make up rhymes and sing little songs to my cats. Like this silly one, which is evidence of what happens when your body cannot sleep properly. Some pharmaceutical company should send me a coupon for a rebate on Chloral Hydrate as an act of mercy.

Thank you to all you great readers who left comments about my last post. I really appreciated them. I am not going to delete or abandon this blog.

By the way the old couch was a used couch given to me six years ago by the mental health agency that owns my apartment, and they refused to take it back last week when they saw what shape it is in. I feel quite sure someone will rescue it from the dump and take it home.

Tuesday, May 08, 2012

a little uncomfortable here....


Blogger friends, are you out there? I am nervous. I write this blog mostly for you people who also write blogs. It became clear a long time ago, that you're the people who will write comments and let me know you were here, therefore, this blog is mostly geared towards other people who have mental illnesses and write blogs...not that I am against anybody else reading it. I just don't want people I know to read it. Like, ever. Really. So if I know you, can we just say this is a deal, and have you now exit this page?

I kind of made a mistake recently. I shared a letter I wrote to a senator with some people from NAMI and they published it in the newsletter. That was okay. But I mentioned my full name and the name of my blog in the newsletter (and they put a picture of me to boot). Which is really not okay at all. I tried to convince myself nobody would read it. My mom said, "What if someone you work with reads this??!!" when she read the letter in the newsletter (thanks for that one, Madre, and I hope you never read this yourself). I told myself, "Nobody is going to read it." Well, that turned out to be inaccurate. Some people at the last NAMI meeting told me I should write a book. That was a nice compliment, and it was okay that they read it, because I actually told them about my blog when I spoke to their class for family members. I guess what did not occur to me was that I was going to see them again in this lifetime....

Then today I went to the community mental health center and the pharmacist (how do pharmacists always remember my name? surely this is a bad sign) said he had read my article in the newsletter and he really liked it. So did the woman who  works with him in the pharmacy. That was nice, but really, why did I put the name of my blog in that letter that I allowed to be printed in a newsletter? A simple Google search for the name of this blog will  quickly land one right here. Right where I am totally exposed to the world, in all my psychotic glory. Great. Just what I wanted to do to myself! Embarrassing details are written here that I don't even talk about with mental health professionals. Needless to say, I would prefer that mental health professionals never read these things!

So, I guess what I'm saying is, if I know anybody out there who happens to be really bored sometime and ends up reading this blog, it's fine, but do me a favor and don't mention it to me ever. I would really appreciate that. Because it's very uncomfortable to think anybody I know has read any of this. It was terrible when I found out a long time ago that my mom and other family members had read it. I shut down the blog temporarily because my mom was freaking out at me for something I had written (needless to say, pretty much everything I write here would freak out my mom), and I deleted some posts. I don't want to have to delete posts again. I learned the true meaning of the term "regret" when I left a lifetime's worth of diaries in a storage facility in Virginia and never got them back because I had no money or logical thought processes to manage to do so. That is something I would never do again. Ever, ever, ever. Not even to hide them (which is what I was doing) from the CIA and the Illuminati, because I was psychotic. I don't delete stuff here anymore. I decided at some point in the past that if my mom reads it, she will just have to learn to deal with it. But I choose to believe my mom doesn't read this blog.

Does anyone understand what I'm saying? Afton/In the Pink wrote on her blog a page I read a long time ago to people who know her in real life. I might need to do that and post it at the top. By the way, her blog is excellent if you haven't read it.

The other dumb thing I did was send out this email to a bunch of people - pretty much to everyone I know - trying to raise money for NAMI and get people to sponsor me in the Bowlathon. It occurred to me (things always occur to me too late) later that this most likely would lead most of these people to believe I was a formerly homeless mentally ill person (which is pretty much what I hinted out directly in the email). And that is, well, that is rather unfortunate. I also sent it to two reporters! I wanted to raise awareness for NAMI, fully expecting neither reporter to read it, but one of them did read it and wrote back. At which point I told her I had Schizoaffective Disorder (do not ask me why because I have no idea what possessed me to do this). Not exactly the way I want to present myself to the world. I mean, obviously I'm not totally secretive about it, but as I have mentioned here before, like many of you, I am also not totally open about it. And until they stop stigmatizing the hell out of people with the term "schizo" attached to their name then I do not feel I owe it to the world to be totally open about it because it is not my job to fix the problems of planet earth singlehandedly. Therefore, I reserve the right to pretend I am fully functional and sane whenever I please. Which I do, quite often. It seems to work, though of course, if it's not working, I wouldn't know because most people are not going to come up to you at work and tell you that they figured out that you're batshit crazy (I like the way Marya Hornbacher uses that term in the book Madness: A Bipolar Life).

Anyway, I guess this is a rather useless post. But perhaps some of you will relate. Incidentally, I am actually raising a little money for NAMI. So far two friends have given me a total of $35 for the Bowlathon. One of them is my neighbor who lives on $800 a month, and once spent nine months in a state psychiatric hospital where she gave birth to a baby she was forced to give up for adoption. Seriously. She was very adamant when I mentioned that I was going to this fundraiser that she definitely wanted to contribute, even though I tried to talk her out of it because she can't really afford it.

I also bought a couch for the first time in my life. It was on sale at this store called Big Lots that I go to all the time. I had this savings card so I saved 20% off the sale price. It's a discount store, and probably the cheapest store where it is possible to purchase a new couch anywhere near where I live. I felt that, at 37 years of age, it was time I allowed myself to use some of my tax refund and purchase a couch. Plus, my mom always would  tell me how horrid my old couch was. Turns out she was apparently right about that, because I haven't been able to get anybody to take the thing off my hands including the Salvation Army, but that's okay because a homeless man has made it into his bed for the week (my neighbors be damned). I was not (and am not) remotely manic when I bought the couch; it was something I thought about doing for the past couple of years. Anyway, so I'll attach a picture of the kitties on the new couch. My cats are both five years old now: Ribbit the Little Lion and Princess Spooky the Chat Noir. I talk to them about anything I feel like discussing, and they are very good about not repeating it in English.



"Silent All These Years"

~By Tori Amos

Excuse me but can I be you for a while

My dog won't bite if you sit real still

I got the anti-Christ in the kitchen yellin' at me again

Yeah I can hear that

Been saved again by the garbage truck

I got something to say you know

But nothing comes

Yes I know what you think of me

You never shut-up

Yeah I can hear that



But what if I'm a mermaid

In these jeans of his

With her name still on it

Hey but I don't care

Cause sometimes

I said sometimes

I hear my voice

And it's been here

Silent All These Years



So you found a girl

Who thinks really deep thougts

What's so amazing about really deep thoughts

Boy you best pray that I bleed real soon

How's that thought for you

My scream got lost in a paper cup

You think there's a heaven

Where some screams have gone

I got 25 bucks and a cracker

Do you think it's enough

To get us there



Cause what if I'm a mermaid

In these jeans of his

With her name still on it

Hey but I don't care

Cause sometimes

I said sometimes

I hear my voice

And it's been here

Silent All These...



Years go by

Will I still be waiting

For somebody else to understand

Years go by

If I'm stripped of my beauty

And the orange clouds

Raining in head

Years go by

Will I choke on my tears

Till finally there is nothing left

One more casualty

You know we're too easy Easy Easy



Well I love the way we communicate

Your eyes focus on my funny lip shape

Let's hear what you think of me now

But baby don't look up

The sky is falling

Your mother shows up in a nasty dress

It's your turn now to stand where I stand

Everybody lookin' at you here

Take hold of my hand

Yeah I can hear them



But what if I'm a mermaid

In these jeans of his

With her name still on it

Hey but I don't care

Cause sometimes

I said sometimes

I hear my voice
        I hear my voice

       I hear my voice



And it's been here

Silent All These Years

I've been here

Silent All These Years


.....I always liked that song.



P.S. to the Uninitiated: If you are somebody who doesn't have a mental illness and just found this blog, perhaps it will help to read wrote some good descriptions of hallucinations like this. It would be harder to write stuff like that now, because, most of the time, I'm not experiencing serious psychosis now. So I actually do forget some of the details, or else, I don't bother mentioning them because I've already done so before on this blog. For example, these days about 5-10 times a day I am hearing my phone ring when it's not ringing (sometimes when it's not even turned on, because I turned it off so I would know it was not ringing). As my mother woud say, "that is not normal at all". But for me this is a really minor problem, so I don't talk about it in detail anymore when it happens. I notice it, and it makes me nervous, so I hope it goes away, but it's not something that is new to me. It wasn't happening for a long time, but it started up again; now it's just like when it happened before - not new to me. But if you are new to this stuff, it's okay that you read it. I would prefer you don't come up to me if I ever am around you and tell me that you read about something I did when I was psychotic, but if you are trying to understand what it is like, then it is okay for you to read it so that you can understand better. The pages at the top of the blog have some stuff that might help. Also check out the other blogs linked on the lower right hand side and the blogs of everybody posting comments, because these people are brilliant. You have to understand that recovery is possible, so whatever you read, don't forget that the people who wrote it might be better now than they were then and they might be better next year than they are now.

Sunday, May 06, 2012

National Alliance on Mental Illness, and a small request of you


Hi Folks,
I have a small request. If you could be so kind as to help with this, I would appreciate it immensely.

NAMI: The National Alliance on Mental Illness has meant a lot in my life. The chapter that I'm part of is called NAMI Pinellas. I have been involved in it for five years. It is a very active chapter of NAMI and it has many excellent programs. The people involved in it are some of the nicest, most anti-stigma, understanding people who I have ever met. They are all family members of people with mental illnesses, or people who have illnesses themselves (ie, consumers), for the most part. They are dedicated volunteers.

Let me tell you about some of the programs NAMI Pinellas puts on and why I am trying to raise a little money for them. Every six months we hold a Crisis Intervention Team training for law enforcement officers in our county. Most classes have about 40 officers, because that is all there is room for. They get trained for an entire 40-hour week on mental illness, and how to deal with people in crises. This is a national, and even an international program, and CIT has been shown to decrease the number of shootings of people with mental illnesses by the police when they are in crises, and also decrease the number of arrests of people with mental illnesses who belong in hospitals rather than jail. For this reason, I am very proud to be involved with CIT and I attend all the trainings. I am a consumer speaker once a year, and a backup speaker once a year. I tell the police officers my story, and they come up to me afterwards, sometimes, to shake my hand and tell me that I helped them understand mental illness. It is a very empowering experience, which I wouldn't have ever had without NAMI Pinellas. Our CIT program has trained 1,200 officers in our county on mental illness in the past 11 years. CIT overall has trained 10,000+ officers in the state of Florida alone.

Another program NAMI Pinellas has is called Breaking the Silence. This is when we go out to community groups and educate them about mental illness. Mostly this program is geared towards middle school and high school students, but sometimes we talk to other groups. I have spent two days in the past couple years telling my story, and discussing depression, eating disorders, suicide, and other mental illness issues with another NAMI volunteer at a high school for students who have been kicked out of other schools. We've also talked to the staff of a local theater, on a disability training day and I told them my story. NAMI members go to lots of schools and other places to do this program frequently (much more than I myself have done). This is an important program because suicide (notice the title of this blog?) is the second leading cause of death amongst college students and the third amongst high school students. Kids need help, and NAMI Pinellas tries to help them. In the future we're going to be taking our Breaking the Silence program into hospitals and assisted living facilities to train the staff members about mental illness.

NAMI Pinellas also has a Peer to Peer training classes a few times a year. This is a nine-week long course for people like me to attend because we have mental illnesses and want to understand them better. This class is also very empowering and in many of the classes, people open up to a group for the first time about their illness.

NAMI Pinellas has a Consumer Council, and I have been secretary of it for a few years. We are not that active at the moment, but in the past we have made resource packets, printed out thousands of them, and distributed them to local psychiatric hospitals so all of the patients being discharged would know where to go for help. We have also attended conferences, and networked with other advocates around the state. We presented a table every year for the past three years at my former community college (where I graduated from) on the Disabilities Awareness Day, at which we were the only group representing mental illness out of all the booths present. In few weeks, I'll be attending the NAMI Florida statewide Peer Conference and hosting a discussion group on hearing voices.

NAMI Pinellas has a Consumer Connections support group weekly at two different locations and times. This is a support group for anyone with a mental illness. We also have a support group specifically for family members of people who have mental illnesses. We have a twelve-week course called Family to Family which trains family members to understand mental illnesses better, and to know where they can go for help. I have gotten to speak  twice to that class in the past year, and tell my story. The people were so warm, and welcoming, it really made me feel great to do that. It was very empowering.

NAMI Pinellas has a helpline and a consumer helpline for people to call to get information, and support. I helped answer the consumer line for most of last year. There is a very dedicated, older couple who have been answering the main helpline for many years because their daughter has a mental illness. (Did I mention how dedicated the people who volunteer for NAMI Pinellas are?)

NAMI Pinellas holds a walk almost every year, a picnic almost every year, and a banquet where awards are given out every year to raise awareness about mental illness. The Iris Awards go to people like police officers who help prevent someone from committing suicide, and people like me who do advocacy with NAMI. I was very honored to receive this award in 2010. That same year, I was also very honored to receive the Consumer of the Year Award. Both these awards are in my living room for anyone to see them. I am proud of them.

NAMI Pinellas holds a monthly education meeting. We have speakers come, such as representatives from every local mental health treatment agency, and speak to the public about resources that are out there for help or specific topics like medication management or PTSD in veterans.

NAMI Pinellas is going to be starting both a support group and a Peer to Peer class at the community college I used to attend, where there are no mental health services offered for students (something that definitely affected my life many times!), and they have asked me to help jump start these programs. So I am going to get trained to do that, and I am going to be involved with talking to faculty at the school to help get it going. I am very happy about this, because it is a sorely needed program.

All of NAMI's programs are free to anyone who is interested in them. NAMI Pinellas receives no government funds to fund these programs. It relies on donations.

So this year, for the first time since I got involved in NAMI, I'm bowling in the annual fundraiser (a bowlathon). I want to raise money to give back to this wonderful organization and help support its mission of advocating for people with mental illnesses, educating people about mental illnesses, and supporting people with mental illnesses and their families. We also do advocacy where we meet, call or write legislators and my most recent letter to a state senator was published in the last NAMI Pinellas newsletter. The newsletter goes out to all our members.

The Bowlathon is May 19th, and I am trying to raise some funds via people sponsoring me in the Bowlathon. So, if you happen to have a few dollars (even if it's one dollar) to spare, and could send a check or money order to NAMI Pinellas, I would really appreciate it very much and so would all of the consumers and family members who we serve.

This summer I'm also running for a seat on the NAMI Pinellas Board of Directors, and I hope to be able to participate even more!

If you would like to contribute something, please send it payable to NAMI Pinellas County, Inc. which is a 501c3 organization. Your donations will be tax deductible in the United States. The mailing address is The mailing address for NAMI Pinellas County is: NAMI Pinellas, P.O. Box 12773, St. Petersburg, FL 33733-2773.


Please mention, if you send something, that you are sponsoring me, Jennifer R. from the Consumer Council, in the bowlathon. If you want a receipt, please also mention that.

I'm sorry if this sounds like a commercial, but it truly is a beneficial organization for people with mental illnesses, and if you live in the U.S. and you, or anybody you know, has a mental illness, I encourage you to check out your local NAMI affiliate at http://www.nami.org/.

Any amount is welcomed, so even a dollar is most appreciated. Thank you very much for your attention here and thank you very much for your support of NAMI Pinellas!




Tuesday, May 01, 2012

OCD and Me



Here are my results for the OCD Screening Test by Wayne Goodman, M.D. at the University of Florida:
http://psychcentral.com/ocdquiz.htm

Obsessive-Compulsive Disorder Screening

You scored a total of 18

Based upon your responses to this screening measure, you are most likely suffering from an obsessive-compulsive disorder. You can view symptoms and treatment options for this disorder. This is not a diagnosis, or a recommendation for treatment. However, it would be advisable and likely beneficial for you to seek a professional diagnosis from a trained mental health professional in your community immediately.


S C O R E S If you scored...

Then...

12 & up OCD is likely



8 - 11 OCD is probable



0 - 7 OCD is unlikely


This is not meant as a diagnosis tool


The below is used as a tool to evaluate the severity of a person's symptoms after they have already been diagnosed with OCD:

On the Yale-Brown Obsessive Compulsive Rating Scale the ratings go as follows:
http://healthnet.umassmed.edu/mhealth/YBOCRatingScale.pdfn

8-15 Mild
16-23 Moderate
24-31 Severe
32-40 Extreme

I scored an 18 according to my own evaluation of my problem. Not quite sure it's accurate because I might be understimating this since I don't really know what it's like to NOT have OCD symptoms, as I have had them pretty much for as long as I can remember. So it's possible if I could compare it to life totally without these problems than I would have given myself a 25 or 35 or something. Just based on my own opinion about it "moderate" seems to be underestimating it to me, but also probably accurate if you compare it to people who are washing their hands 500 times a day and reopening doors 60 times every time they open a door because the doorknob just doesn't feel right. Still, I think I have a lot more OCD symptoms than an average person without OCD would ever understand. I don't even talk about it to hardly anyone. Honestly, most of it is too shameful to discuss. I didn't even tell my old therapist about it for years! I only told my psychiatrist who's been my doctor for a year about it just a couple months ago. And I don't talk to anybody else about it. Even on this blog which has existed since 2005, I think there are maybe three posts about it. That's because it's embarrassing to me, and it's also because I'm so used to it that I don't even notice it as a problem half the time.

I used to sit on the couch in the living room in my house when I was a little kid (I clearly remember this like it was yesterday) and try to hold my breath while I counted to 1,000. This began my lifelong habit (I think I was about eight when it began) of counting. I ALWAYS COUNT. I count to 50 forwards and from 50 down backwards. I count to 100 forwards and 100 backwards. I count to 20 and tell myself, "when I get to 20 I have to get out of bed". I have done this forever. This is not a normal thing to do.

The more distressing thoughts are sick in nature, and about digusting things like fecal matter (usually making me gag or sometimes even vomit when the thoughts get bad), and horrible words about other people, and the fear that I have an urge compelling me to do something weird and bad, like kiss people when it would be totally inappropriate to do so. I have had all these problems for years. I don't even know how many years. From the time I was 14 till the time I was about 25 I had Anorexia Nervosa and was obsessed with food, fat grams, and calories, and, of course, my weight, even though I was underweight. I remember my first psychiatrist telling me "OCD is a cousin of Anorexia, and you have Anorexia as well as symptoms of OCD".

I remember when I started getting the obsessive (and later utterly delusional), paranoid thoughts that I might have been sexually abused, this first psychiatrist didn't think it had really happened and pretty much told me so to my face. Unfortunately nobody else ever did that because when I went to see them they simply took everything I said at face value, much to the detriment of myself and my entire family that ostracized me for years for false accusations of molestation. I will never forgive those horrid mental health professionals for telling me I probably had Dissociative Identity Disorder. The ruined my life for years! My dad didn't talk to me for SIX YEARS because of it. My grandfather DIED probably still hating my guts. It was horrible. It tore me up for years. It also totally confused me because I believed I had DID and totally did not know I was psychotic. Horrible. If I could sue some of those therapists, I would haul there asses into court right now, but I can't afford a lawyer with which to do that. I can only write on my blog that I don't believe most people diagnosed with DID/MPD actually have it, based on my own experiences as a person who thought she had it and who knew lots of other people who thought they had it.

Anyway, so I knew from a blog post I wrote when I was on Prozac a couple years ago that it helped with my obsessive thoughts, and so that is why I asked my psychiatrist to put me back on it a couple months ago, which he did. I had to go off Wellbutrin and I was a little worried about that, but it turned out to not be a problem. As you may know if you read this blog at all, I got a little hyper when the dose went up to 60 mgs, and several of you commented that I seemed hypomanic. But the best thing about being on 60 mgs was that the OCD totally went away! I mean it was GONE. I was so relieved about that! (Not to mention that being extremely productive was quite enjoyable too). But then, of course, my doctor had to decrease the dose back to 40 mgs. And the damn OCD came back.
 
So today, I went back to see my doctor and negotiated my way into a very slightly (a few milligrams higher than 40, but not 60 mgs), dosage of the Prozac to try to get the OCD away again. Lovely thing is, the doctor agreed to do it. I had to agree that I would stay on my annoying Risperdal Consta injections which have made me gain 100 pounds for at least a couple more months in order for this compromise, but that is okay. I shall see how it goes. The recommended dosage of Prozac for OCD is actually 60 mgs, but I apparently can't take that dose without getting super hyper, so that's too bad. I can see how this goes. I was quite pleased with "Dr. No Fun" for working with me on this. I really don't want to have obsessions for the rest of my life.
 
So I did these little quizzes today in order to evaluate my symptoms today, while I'm still having them, and then I'll come back and do a comparison evaluation in a month or so, and see how much I've improved.
 

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