Love, Labels and Lies

"Hi. My name is Susan and I have been diagnosed as Bipolar 1, ultra rapid cycler. I've been on over 50 different med cocktails, seen over 30 psychiatrists, and had ECT. On a scale of one to ten, I am feeling about a five tonight. Flat. Sleepy. I'm happy to be here tonight."

So the check in continues in my old support group. Name, diagnosis. Meds you are currently on. How you are feeling, how the meds are making you feel. And so on. Pass the card to the next person. 

First order of business. Make sure no one feels suicidal, makes sure everyone feels safe to share. And then talk of what is going on with our lives. Work issues. Family issues. Medication issues. Sex. Anything or everything.

Sounds good in theory. But here's the rub. As the group went on for years, and people grew comfortable with each other, something happened. A p-doc change because of a new job and a new insurance company. All of a sudden, the gal sitting next to me who has been "Bipolar 2" is now "Bipolar NOS". What is this? The guy who has been labeled "Schizophrenic" is now "Bipolar 1". The college student who was previously labeled "ADD/ADHD" is now "Schizoaffective, and OCD".

What gives?

Two things actually. One thing, the easier one to grasp, is what has happened to me. A medication on your cocktail gave you some funky side effects. You never felt paranoid before, but now you do. Once that medication stops and is out of your body, the paranoia is over. The label remains. In my case, a pharmaceutical made me hear voices. I mentioned this to my doctor and saw my Axis I definition changed from "Bipolar 1" to "Bipolar 1 with Schizoaffective disorder". It went away after I was weaned, but to this day, the permanent side effect is I need my iPod with me 24/7 to concentrate, listening to talk radio or books on tape. If I don't have something in my ears with this type of white noise, my brain will not function.

My label changed. Not a big deal. It's been changed in the past. Almost every p-doc I have ever seen has changed it.

Here's the truth. You go to a new p-doc. They spend the first meeting or first two meetings asking you a deluge of questions. Based on the way you answer, and the knowledge of the p-doc they give you a label based on your questions.

The first time I was evaluated my p-doc had the DSM III. I was evaluated by an overworked medical student following a suicide attempt in the ER department, right before I was sent inpatient. That label was "Depressed". I was also labeled "Suicidal" and spent two weeks on a 1-1 suicide watch, eventually graduating to a 1-15 and then finally joining the rest of the hospital. When I was deemed well enough to get off that 1-15 and join the rest of the hospital patients, I got a new p-doc. He spent close to three hours with me and gave me a new diagnosis. "Manic Depressive". I stayed with this doctor for six years. By the time I left him because of a new job and insurance, the DSM III-R had come out and my new diagnosis was "Bipolar". He assured me it was the same thing. I understood. I had many psych courses in college, both undergraduate and graduate. I remember Schizophrenia was called "Dementia Praecox" at one time.

That's all well and good, but my old support group was really hung up with labels. One girl came in hysterical one night that she was no longer straight OCD, she was now diagnosed as a Borderline on top of it. As soon as she said it, I saw her friends, who previously liked her, now distanced themselves from her. Indeed, I know a therapist in real life who refuses to see anyone with that label. EVER.

Here's what I think about labels. Unless you are shopping for consumer goods, labels don't matter. A label is something a doctor throws on you, whether it's psychiatric or other so he has a number to submit to the insurance company to get money from your visit. It shouldn't define you.

Here's my labels. Susan. SWF. Forty something. Educated. Blonde hair, blue eyes. Very zaftig. Short,( five feet tall). Flat feet.

Diagnosis- lost my way in the maze of life following a bad relationship, and currently unemployed, I feel lost, adrift. I am searching for something to give my life meaning.

Yes, I am different than most people. I have a creative brain, not a scientific one. I overthink things. I feel things differently because of the creativity. Yet, I am no different than anyone else. Yes, right now I am sorely depressed. Melancholy. What ever you want to call it. I've lost my way.

Those are my labels. I think they help me define me much better than the labels my p-doc has given to me over the years. Bipolar 1, Manic Depressive, Schizoaffective, Schizophrenia. I don't think of them and I don't let them get me upset .Because I won't let the illness define me. I let me define me.

That's the sad part about my former support group. Though it means well, people never got passed the labels, and they let them identify them as people. They shouldn't. Let the doctor and the insurance company sweat them. You are a vibrant, wonderful, unique person. Your label is your name. But owning that, is the first step to achieving wellness.

And that is what everyone wants at the end of the day. To be well again. 

Lost

I'm sitting in my psychiatrist's office. It's on the clock, in her waiting room are another four clients and one irate rep from Big Pharma, with lots of samples of Cymbalta. I have about 5 min plus another min or two to pay and re-schedule. It's going to go very fast.

She looks at me. I'm trying to care about my appearance- I noticed she's referred to me as "disheveled" in the past. I've taken care to wash and blow dry my hair, and put on make up. Put on new clothes. The friend who is staying with me this week says I look "Beautiful". The doctor clearly disagrees, she's writing furiously on her writing pad.

She wants me on medication. It will be a year, since last November when I went cold turkey off all my meds. She feels with diagnosis, I should be on something. She wants Prozac. I don't want Prozac. I was on Prozac when it first came out, after a couple of months, I developed something strange- I felt like there were bugs under my skin. I went off it cold turkey, and on to Zoloft and Paxil.

I remember when Prozac first came out. Dr. L- was all over this, thinking this drug would cure me, cure everyone. His copy of Newsweek was worn, he treated it like his bible. Prozac was all over the place, everyone was taking it, even people that didn't have depression. I even knew a man from work who named his cat "Prozac".

So when I told the doctor one night, I couldn't stop scratching and felt there were bugs crawling over me, he couldn't find that in the side effects. Eventually this side effect did make it into the list, but not then. All I knew is that this drug wasn't like a magic wand, it was making me worse. This was the first drug that failed me. Over the next two decades there would be many, many more.

My doc wants me on Prozac and Abilify. She has called my GP and my kidney doctor to make sure I can take it. She thinks Abilify will help, and the Prozac- why don't you take it, maybe it will work this time. If it doesn't, stop it immediately.

I don't want to be on psych drugs. The swelling in my feet is going down. I'm moving around better. A friend who is staying with me has me walking every night this week except the night it was raining. The last time we saw each other I could only walk with a walker. Now, I am walking, leaning gently against him for balance, with a semi like drunken gait. It's not where I want to be, but it is better than it was even a month ago. Baby steps. Recovery goes in baby steps.

I made dinner one night, broiled chicken, broccoli, and noodles. It was nice cooking for someone, I enjoy cooking simple, plain meals. My friend tells me I look healthier- my skin has a glow in it that it didn't have earlier this year, and I'm not in pain every moment. No, my pain has been ebbing over the last fortnight, it's not as bad as it was. I'm sleeping again, only it's hyper sleep- 16-18 hours each day.

Despite the company, I feel lost. I'm being pulled from two different directions- all over the medications. Over my life. What I am doing with my life. Do I go back to school for a PhD or another Masters? I think I am too old and don't want to go into Student Loans. Can I find a writing job when all over newspapers and magazines are laying off writers. Can I even work if I am sleeping too much and feeling terrible from the kidney, bladder and high blood pressure meds?

I don't know. I just know I want to contribute something back to society. That would be the best therapeutic answer to everything and make me feel whole again.

To Med or not To Med

That's the question. The rub is- what is the correct answer?

Dave Stein in his blog posted that question yesterday. I've been thinking about this long and hard, and I've come up with the conclusion.

It depends on the individual. But this individual says no.

See, I'm not a doctor, I'm not trained in pharmacology. All I can tell you is I've taken almost 40 different psychiatric drugs in my lifetime. None of them worked - some did what they were supposed to and pooped out after about 3 months or so. Some of them gave me bad side effects after a couple of days. Some of them made me exorcist sick. A few gave me side effects like weight gain (up to 100 pounds) made my hair fall out, gave me stomach problems and GERD. These side effects were nothing compared to kidney failure, and nearly dying from tardive dyskinesia from Haldol. ECT made me loose my photographic memory- made me loose most of my memories and I lost my career because of it.

I will admit- the first year or two- the drug cocktail I was on made me feel better. Or maybe it didn't, but acted like a placebo to my brain. The doses got stronger and all of a sudden it just wasn't one drug I was on (lithium) but the doc said, add Prozac. I didn't tolerate Prozac that lead to six months on Zoloft and then a change to Paxil after another six months. Then all the other medications were tried with the lithium. After six years with one doctor, I got a new one- who changed out the lithium for Depakote. That's when the weight issues came in. I went from 105 pounds to over 200. Depakote was stopped, back to lithium. And so and on so on. And my weight over the years cycled from a low at 140 (which was 30-35 pounds overweight) to at one time a whopping 210 at my heaviest. (To give you an idea, I am five feet and one sixteenth of an inch tall, and should weigh between 100-110 lbs).

Every time i would complain about a side effect, doctors gave me pills for the side effects. Stomach issues- I was told to take Maalox or Pepto. I got to carrying around Maalox tablets with me at all times. I couldn't sleep, I was given something to make me sleep. I couldn't wake up, I was given a pill for that. I was given Meredia for diet pills. My hair fell out on three different occasions- I was given slips to buy wigs and scripts for Rogaine. I became anemic- I had to take iron pills. Then my white blood count started going haywire, until it's been hovering right at a number just below the number for leukemia. I started to hear voices, I was given a pill for that. I've been up to 11 different meds at one time- not all psychiatric.

And let's put this on the table, before I was "diagnosed" the only health issues i had  besides the normal childhood illnesses, were painful menstrual cramps.

Today I am currently on Clonidine, Amlodipine, Bethanechol, Colace, Lasix. I take Tramadol for pain. I'm not on any psych drugs, much to my mother's chagrin, because of the kidney failure. I suffer from agoraphobia- brought on from the drugs I suspect. I've never had that. I have edema in my legs and feet, and cannot walk without a walker.  I totally cannot think for myself, I have to make lists of everything to do. I have a little bit of my memory back, it took over 8 years after the ECT to get any of it back. I cannot tolerate heat, my apartment stays at 62 year round. Any higher and I get sick from heat. In the winter I would keep the thermostat lower but my landlord says I have to keep it at 62 or the pipes will freeze. My ideal climate would be in the North Pole in an ice house, year round.

I know on the internet, for every one person that is pro meds, there is another that is anti meds. Like I said, I am not a physician. What I will say, as I look at my life, I rue the day I ever took my first psychiatric pill.  In hindsight, I would have been sufficed best by talk therapy.

What I wish is that the doctors I saw had listened to me when I complained about side effects to my medication. I wish they knew about weaning off one drug before starting another. Instead they told me to go off cold turkey from one med, try another, and were never with me when I was adjusting  to one while going off another. I learned to live in the bathroom for days- never knowing if I had to put which end on the toilet. I had shakes worse than the shakes I got from drinking.

If you are taking any meds, and have side effects call your doctor immediately. Don't let them marginalize any side effects. Any and all side effects should be brought up. Don't let a doctor condescend to you. Look up your prescriptions on the internet. Read all you can and talk to your doctor about the drug(s) he or she wants to put you on. Question everything.

I'm taking the high road here. I cannot tell you to med or not to med. All I can do is tell you, in hindsight, they didn't work for me, they made me sick and gave me side effects that were horrible. I wouldn't do it again. But if you are reading this and feel the meds are saving your life, good. But please, please, the minute they start making you feel wonky and sick, call the doc immediately. If your doctor doesn't listen to you, get another doctor. Your life is important, and loosing your life from meds or from their side effects stinks. Arming yourself with knowledge can and will save your life.

And in the end, that's all you have. Your life and your health. When your health is gone, so is your life. Take that tip from me. I celebrated my birthday last week, my biggest fear is I won't celebrate next year's one.

Calling Dr. Katz

Why is it so much fun to satirize psychiatrists? Because by nature, they are easy to satirize. And as the best satirists of all time can tell you there is a grain of truth in what you satirize or it wouldn't be funny.

Some of the lovable Viennese Head Thumpers have been Dr. Katz, Bob Newhart, and a wonderful sketch by Fry and Laurie. And now I would like to add another one to the pantheon. The video below is by my friend Kimbriel. Regular readers on the blogosphere might be familiar  with Kimbriel, she is a frequent commenter on Furious Seasons, Pharmalot, Beyond Meds, and Before You Take That Pill among other blogs. It's a little long, but worth a view, no matter if you are pro psychiatry or anti psychiatry.

I Have No Mouth And I Must Scream- Repost

Today started out like any other day. Blue sky, not a cloud. Humidity down a bit. I couldn't sleep last night, but that is not unusual.

Then the emails. Then the phone calls. People who love me, yes, they do I know they do. But don't understand me, what I have been through and what I am doing.

All I can say is I am taking steps to take back my life. They are not popular. it's causing pain.

To everyone.

Back in 98, I quit my meds, all my meds and for a period of about 6 months I thought I was fine. Perhaps I was. Perhaps I wasn't.

I was only on lithium, and I was between pdocs.

Someone in the news room said something about Beepers after Phil Hartman was murdered and the story was breaking and we were watching it break in real time.

In hindsight I should have gone to HR and made a complaint about this person.

Went to my parents house for supper, I was upset. In a previous lifetime I did voice work and knew some of the people who worked on The Simpsons.

The next day I called the pdoc and was back on Lithium that evening, as well as an anti depressant. I cannot recall if it was Paxil or Zoloft.

Flash forward about a fortnight.

My mother stood by the kitchen sink, scraping the skin off of potatoes for supper. She looked at me and said "I have my daughter back", Then the threat- if you ever go off your meds again, so help me I will do X Y and Z to you".


This was back?? I had cotton mouth. My brain felt like it was swabbed in cotton, I found it hard to string a coherent sentence together in the right time. I couldn't find the right words to express what I was feeling, and said umm a lot. I didn't ponder, I didn't day dream. I felt cow heavy from the lithium and the water retention that comes with it. I couldn't watch TV and I couldn't read or write. Doing these things were like climbing Mt. Everest to me. The poet/philosopher was dead. Dead and gone lady dead and gone.....

But I was a good girl and wanted to make everyone happy. By doing this I had an idea that I needed the lithium to control the mood swings, and keep me on an even keel. But the other, it was destroying my soul, it was destroying who I was. It was destroying ME, my essence and spirit.

I swallowed the meds and tried to be a good girl. I held down a job, made a nice salary, got my writing chops again, started 2 more novels over the next 10 years. But weekends I would just stay in bed and sleep for 18 hours a day, I was that tired. People made me tired, and I needed to avoid them at all costs. I wasn't alive anymore. The girl who existed in school, even in college who would play in the snow, run outside to look at rainbows, play midnight golf on the golf course and jump into the pool there and skinny dip, she was gone. I couldn't look at the stars anymore. That was heaven and my body was trapped in a hell on earth.

One set of great grandparents left a country under Nicholas and Alexandra because they wanted freedom, and America was the best place in the world to be free. I wasn't free. My body was, my brain wasn't. It was under a Tsar of my own making.

They say fake it til you make it in AA. I did that. That was my life. Keep swallowing those pills and everyone is happy.

Don't question. Doctors know best.

It didn't matter that doctors have almost killed me back in 85 when I had Lymes, and this past Spring with Haldol. They saved my life when I was born and should have died. Somehow that balanced out the other one (now two) on the Karma scale.

And now I am still that scared little girl. My brain is clearer than it's been in over a decade. I know that. The poet/philosopher that was me is back. At what price?

this price? It's too high on a lot of levels. It's too caustic, emotionally and physically.

"The curse is on me", said the Lady of Shallot as she left her tower and tried to row across the river.

The curse. The mark of Cain, the dreaded bipolar label and all it entails and is. The curse is on my brain.

I am swallowing hard to stay afloat. What I thirst for is 30 proof.

All I can do is sit on the couch, under the picture of Wheatfield with Crows and wait for the sun to rise. And pray that this new day is better than the day that went before it.

Sophie's Choice- To Med Or Not To Med

I have a bad back. So do lots of people. Mine stems from a bad fall, landing on my back as a summer camp counselor. Add to the fact that Mother Nature has, depending on your view, either blessed me or cursed me with a set of DDD's. So this past September, I threw out my back. Nothing new here. A couple days in bed with the heating pad, and I should be as good as new.

This one went from bad to worse. I could barely walk, crawling around from the bed to the toilet, into the kitchen to put out kibble and water for the cat... back to bed. I couldn't reach the cabinet to get my meds, so I went without. And during that time, I went cold turkey off my anti-depressant. I don't know if the pain and nausea I felt was from my back pain or the med withdrawal.

Eventually, a couple days later, I felt fine. And when I went to take my meds in the morning- I noticed the Cymbalta bottle was empty. And my brain, felt clearer than it had in over a year. I didn't think twice, took my lithium, and decided from that point on- no more Cymbalta. No more anti depressant in my cocktail.

I started running low on my lithium back in October. I was flying blind, no psychiatrist at the time- because she and I had a parting of the ways. I was on a dose of 3100 mg a day, and I realized- I better find another doc, and make the script last. So I weaned myself down, on my own. 3100 one day. the next day, 300 less. A week later another 300 less. And down down down til I got down to nothing. That was one fortnight- two weeks ago.

I feel wonderful. My brain is clear for the first time in years. I can write. I actually feel like I can talk to people. I am not afraid to leave my apartment. Other than massive cravings for sea food and sugar, (Anyone for chocolate covered shrimp?), I feel better than I have in years. I've gone down from sleeping 12-14 hours a day to a normal eight.

I have had periods of my life when I have been med free- the shortest one was about 2 or 3 months, the longest was slightly over a year. Mood swings, hanging pretty close to the middle, but no serious highs, or lows. What would happen is my brain would clear, and I would evaluate my life. And I wasn't happy with it. At various times, I was working at jobs that I was over qualified for and bored out of my mind. To the outside world, it seemed like a good job, i just felt my brain was atrophying and I just started hating it. Hating getting up in the morning, hating every part of work....hating coming home to an empty apartment with a cat, and no other company. I joined a dating service, no luck, and I was past the point where I would go to City Gardens or Zadar's or Katmandu, after spending an hour or more on makeup, hair and clothes, to have some drunken clod spill beer all over my clothes, or bump into me and make drunken sexist comments about my figure. Ugh.

I stopped drinking in clubs and started drinking at home, on the weekends. Really drinking. From Friday night, til Sunday night, drinking, passing out, anything to stop the lonliness I was feeling. I always had bad luck with men, they either were intimidated by me because I was "smart", was "one of the guys", or just "not pretty enough, too low maintance". Finally, I got tired of it all, decided to give up my weekends doing volunteer work and working in bookstores for extra pocket money. I love books. I love every aspect of them, feeling them, shelving them, reading the book flaps, opening them and just loosing myself in a world of words. But I was still suicidal, I just knew how to hide the ideation. I would go to the shrink- to the therapist, and just take what ever pills were given to me, not questioning. More lithium. More antidepressants. More more more.

And hate the way they would make me feel. But I was a good girl, I wanted people to like me, I wanted...... I wanted no trouble, and to be liked. Winding up in a Dickensian orphanage was my biggest childhood fear. I still act like a child around authority. Never questioning, never saying "please sir, can i have some more", while my tummy is rumbling.

Now, a new doctor. A script for a new med cocktail- back to lithium- a new anti depressant- Abilify- and Topamax. I put them in my wallet, shake hands with the doc, and leave. The scripts have stayed in my wallet for a few days. I don't feel like filling them, yet I finally do. And put them in the medicine cabinet, not taking them. I know my disability needs me to be on meds, but do I take them or not?

My mother cries. She wants me to take them. She is convinced I will suicide if I don't take them. I am convinced I will suicide if I do take them. Not now. But someday.

The other night at my local DBSA meeting ,I bring up a topic. Would you rather live two very good years, being able to be the best of your abilities, functioning as a real human being, and happy- but off meds- or on meds and live 20 years just existing, just breathing but unable to think as your brain is clouded in a sea of fog and miasma? All your life is reduced to a bunch of involuntary bodily functions?

I said I would rather live two more good years than exist in a prison of fog and miasma made possible from a clouded, broken brain. Some agreed with me, most did not.

Most did not. The story of my life. Not fitting in anywhere- and not knowing what to do, but following my heart, and soul. Tomorrow may rain. I'll follow the sun.
(Picture by Frieda Kahlo. She knew about a bad back too).