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.

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).

This Time it's Different-A New Hollowness in my Soul

She sits in front of me in a big overstuffed black leather chair, black patent pumps swaying softly while she crosses and uncrosses her legs as a nervous tick.

She is made up and looks like she just stepped out of Vogue for working women. I, on the other hand, look like an unmade bed. It's been a week since my hair was washed, and that long since I showered. I did brush my teeth and floss before I got there, and brushed my long blonde hair, tying it up in a scrunchie. My jeans are clean, but the shirt I threw on, a black turtle from LL Bean, has a white mark from deodorant, and should have gone straight in the laundry pile. No make up , not even a trace of lip gloss. My shoes are brand new and hurt, brownish tan clogs from my parents for Christmas to replace the blue ones the cat destroyed a few months earlier.

We are discussing my current med cocktail. The fact that it appears that my thyroid has shut down or is shutting down because I am constantly tired and sleeping close to 16 hours a day. I cannot eat but am drinking copious amounts of water. I crave sugar. The Dunkin Donuts across the street is singing a Siren Song to me.

Lithium is being raised to 3100 mg, Cymbalta is staying the same at 60 mg. If the lithium doesn't start working soon, I will be weaned off it and go on Lamictal. All I know is it took every ounce of effort to get there this afternoon, to get dressed, brush my teeth and drive the two miles to the therapist's office. Climb the 15 stairs to get to her room in the building. I am winded like I was in my childhood when I had asthma.

All I know is I am in crisis. My brain knows this. My mind and my soul know this. Life hurts and every breath I take makes me feel like a medieval torture devise of being crushed or weighted to death in the Tower or some other gloomy place. I just want to go to sleep and never wake up. But surprisingly, I am not suicidal. I just don't care- I just want to go to sleep and wake up as worm bait.

Raising the lithium, with the Cymbalta, now- it's not passive anymore. it's active. But not active like it was when I was on Remeron and got so suicidal I knew to get to the hospital pronto. It's different this time, but isn't every depression slightly different, like identical twins are never really totally identical?

I find it more violent, the ways I want to go out would give Stephen King a new novel and a literary hard on. It would make Jeffrey Dahmer a new recipe for madness. No OD'ing on pills and slipping gently into that good night. These are painful, horrible, dreamscapes and nightmares from a fevered mind sparked from neurons and gray cells not reacting or over reacting to chemical number 3 on the Periodic Table.

I hover between periods of sanity and insanity- wondering to go into the hospital and make arrangements for the striped baby girl, or just going to Home Depot, buying a few items, and going out one night in the parking lot when everyone is home and asleep and ending it all, the last moment of consciousness dialing 911 and telling the cops to seal off the parking lot.

Right now I can hover. I am scared I might slip. Maybe not today, maybe not tomorrow but hopefully not soon.

Huge med change today

Went to the doc today, blood work indicated lithium still wasn't even near therapeutic level, so it's now at 2800. It was at 3100 in March when I got sick. Cymbalta stayed same at 60 ,I was hoping to start tapering down to 40. And Klonepin is now daily at 10 mg.


I feel like a zombie, with the bucket next to me. And my hands are shaking I cannot hold a cuppa tea. I wouldn't mind a cute single guy come over and make me some soup though.


Anyway, will write tomorrow. Just taking a day off to be a couch potato tonight.

sleep from meds being cut down?

One of the things I have noticed when I am depressed I hyper sleep. It feels good, and I cannot stop.

That has been my life the last couple of days. I cannot stop. It's like I don't know what to do with myself during the day. So I sleep. MY meds are being cut in half, only Seroquel is updated. I really just want to sleep. 

Is this normal?

on one vistoril pill

600 mg lithium

2 congentins, (2x a day)

2 klonepins

one more that excapes me, plus pain pill from my back.

What I did for love part two

Since I wrote the first "What I did for Love" piece I have seen two more therapists, a gynecologist, and a GP. I also saw an Oncologist yesterday, which may be one of two things. The lithium I have been taking all these years have messed up my white blood count, or something more sinister. I don't know. I won't know til next week. 

The waiting is the hardest part. 

I just have to keep thinking positive thoughts.

More meds added to the cocktail. 

Vistaril

Klonepin

Congestin

Haldol

I don';t think they are working too well.

I have never had panic attacks like the ones I have been getting. But I take the script, ask the doctor the third degree on every drug.  Badger, questions, all will be OK.  Thank you for asking such detailed questions.  You seem to understand these drugs. 

Umm, it's a pocket PDR in my oversized purse. I have been studying. 

But I cannot help but wonder about the Gods destroying by going mad. I've been reading history lately from my bed, where I have pulled out my back on Wednesday.  Byzantium and Roman history. Fascinating stuff, albeit dry. 

Mad because why an Oncologist? Because my wbc is super high ,and platelets have doubled in 2 weeks? Maybe it's nothing. The man seemed nice enough, nice kind,   doctor.   He just seemed like the type of man you could take home to mom and she would kvell all over him. 

Dr. S. seemed to be worried about the platelets going up and the wbc.  He talked to my mother, the way people do when they ignore you.  He examined me, pounded on all my lymph nodes and I cried out in pain. Pounded on my back, and tummy.   Then they took 5 vials of blood (I am convinced doctors are vampires). And  then it was over. Wait for the results. 

But I want to get better. The suicidal ideation has passed, that to me is worth more than anything. I saw an over head pipe the other day at the gynecologist's office and told her it was the first time in a week I haven't looked at such a thing and thought about a rope. 

So I do things for wellness. I start a new therapist, and it looks good. Hurray.  

But I am scared. It's a lot to recall. My day planner has doctors every day. I am getting tired of it all. I want to work, to go out and meet people, not be crippled by the latest round of OCD which knocked me down and I cannot try to get up, but I am doing my best. 

I don't have a choice really. It's this or 6 feet under. I don't want to die yet. I want so much to live! 

So the gods are driving me mad before they destroy me. So what? Give me the best you got , boys. I can take it. Just don't hit me in the you know whats- I don't own a pair. Just let me get better. I did it before when I stopped drinking, I can do it again now. 

I want to do it again. So many things worth thinking about.  And doing.  I've never skied for example. I haven't really seen Europe, I've never been on the West Coast past Santa Barbara. 

So I am on 9 drugs now. Take a little here and there and get better. The Haldol doesn't work as good as the Geodon, but it has less side effects. Klonepin seems to be working as well as Ativan, but i have to cut the pill in half. 

And so it goes. 

One day I hope to laugh at this as I have the perfect med cocktail.

But right now I would just like a shot in my spine, to make me feel better. I threw out my back yesterday and it's painful. But  I wanted to blog. And it should be better in a day or two. It's from the moving the other day. 

The way I see it, is those Ancient Gods keep throwing dodgeballs at me. I am hit a few times but I get to throw then back as well.  They aren't going to destroy me yet.