Adjustments

As it turned out, I slept four hours last night and felt rested.  Not good.  This can be a sign that mania is coming on, or it can lead to mania. So I have to be careful.  I didn’t want another night of it.  I don’t want another night of it tonight.  I will take Benadryl to help me sleep, but it only lasts four hours so I don’t know how much it will help.

I put in a call to Dr. P.  She does not check her messages on weekends.  I had to have her paged.  I would have waited until tomorrow, but I felt that this couldn’t wait another night.  If I was going to start a new dose, I wanted to start it as soon as possible and pick it up from the pharmacy today.

Long story made short, and skip this paragraph if talk about medications and dosages bores you: Dr. P made two adjustments.  She raised my Abilify to make up for the lowered Risperdal.  Abilify and Risperdal are both antipsychotic medications.  My Abilify dose went from 20 to 25.  I told Dr. P that I thought I might be able to tolerate 25.  She also raised my Lamictal to stop the binge eating.  I binged today and two days ago, and I found the bingeing so horrible and so alarming that I felt that something had to be done about it immediately.  Dr. P to the rescue.  My Lamictal dose went from 500 to 600, but I was a little uncertain about this in Dr. P’s message, so I’ll have to get her to clarify tomorrow.

Yes, some people who binge eat can be helped with medication.  I am living proof of this.

In fact, if I had a choice between the following pills:

A pill to stop binge eating
A pill for depression
A pill to make me rich
A pill to keep my home clean
A pill for mania
A pill for anorexia
A pill to make me feel better about myself
A pill to keep me alive for 100 years

Yeah, I’d choose the pill for binge eating and throw away the rest.  Really.  Even if it meant dying at 75 instead of 100.  Because to me, a bingeing life is not a life worth living, so what would be the point of life till 100, anyway?  If I was in a fire and had to rush out of my house, and had only one med to grab, surely, I would take the Pill for Binge Eating.

This was the reason, back in 1981, that I started taking meds in the first place.  To stop the bingeing.  My first med.  Thorazine.  Thorazine, my friend.  It didn’t stop bingeing, but it did help me.  Still, I had read the research that Imiprimine helped people with binge eating.  This was brand new research and I wanted in on it.

Imiprimine didn’t do jack shit for me.  Imiprimine is an antidepressant and it made me worse.

And so on.  Pills and more pills.  But the original purpose–to stop the bingeing–was always in the forefront of my mind.  Please, please let there be a pill for this.  I knew this was chemical.  I knew rats could be chemically induced to binge.  And if this was the case, I thought to myself, bingeing could be started and stopped chemically.

This totally goes against all current theories of binge eating as “coping mechanism.”  Even my own therapist says my theories are crap.  But why, then, does medication work so well for me for binge eating, and therapy do absolutely nothing?  There’s got to be something to this.

At any rate, I feel like I’m being batted around in a batting cage right now.  This way and that.  Lowered this.  Raised that.  Not knowing what’s going to happen next, or how I’m going to feel, how much sleep I’m going to get,  or what’s going to happen with the dangerous side effect called Tardive Dyskinesia (see previous posts) which seems to have worsened today.

You could say I’m pretty discouraged.  Devastated by the binge eating I did Friday and today.  I don’t feel particularly guilty, but I do feel deeply ashamed.  I didn’t eat all day yesterday.  I don’t want to “trade” eating disorders, one for the other, and go from Anorexia Hell to Bulimia Hell.   You know, it’s just one easy step, when you think about it.

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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available  from Chipmunkapublishing–click here to access.  To read more about it at my home site, click here.

Not wanting to die: Day Five — news and ramblings

I went to see Dr. P on Thursday, and told her about my life.  She listened and believed me.  She didn’t even grill me on what I had eaten.  She’s happy for me.   I guess she can see the hope in me.  Or I hope she can see the hope in me.  I showed her a photo of myself at my lowest weight, and asked her to compare it to myself sitting there in her office, two pounds heavier.  Yes, it’s noticeable when you are this skinny.  She did that annoying thing that I hate: typing everything I say into her computer.  She started doing that when they started some sort of new computer system at the hospital.

We didn’t only talk about my eating disorder.  I have a wiggle in my right hand that has been getting more pronounced.  At first, it was imperceptible.  But when I traveled to Ohio, my dear friend noticed it several times, and now, Frank notices it over the webcam.  So I told Dr. P about it, and explained that it was worsening.  She asked me many questions about it.  Is it in just my right hand?  Is it a trembling?  Can I stop it at will?  Does it interfere with activities?

Yes, it’s only in my right hand.  No, I’m not trembling.  It only happens some of the time, and it doesn’t increase under pressure or when I’m emotional.  It seems to happen when I’m not paying attention to it, or when I’m more relaxed.  Like when I’m talking to someone I know, or when I’m casually waiting for a bus.  And as soon as I’m aware of it, I can stop it.  It doesn’t interfere with typing or handwriting (I’m right handed).  Or at least not yet.

Dr. P said the Dr. P equivalent of a swear word.  I think the word was “cricket.”  She said it not once, but five times.  “This is Tardive Dyskinesia again,” she said.  “And you’re right–it’s from the Risperdal.  We have to lower it.”

Tardive Dyskinesia.  This is the same debilitating condition you see in people on buses and on the streets, people with facial tics, tongue movements, torso movements, movements of their limbs or jaw.  This condition comes from antipsychotics, whether these are the “traditional” antipsychotic medications or the “atypicals.”  Both can give you Tardive Dyskinesia.  And it’s permanent.  Once you get it, you’ve got it.  It doesn’t go away, even after you stop the drug.

I began to get Tardive Dyskinesia in my tongue a while back.  We decided that it was most likely from the drug Thorazine.  We stopped the Thorazine.  It seemed like a snap to taper off of it at first.  It must have taken me about six weeks altogether, but I got off of it.  My tongue was vibrating a little bit, and I feared that it would turn into an out-of-the-mouth horrific tongue movement that would handicap me for life.  Getting off Thorazine, thankfully, stopped the tongue vibrations before they could turn into anything worse.  My last Thorazine pill, 1/4 pill, was June 10.

In July, I had a reaction.  It was pretty bad.  I had rapid-cycling mood swings, and if a mood swing was particularly dramatic, it would cause an eating binge.  The bipolar ups and downs were so bad that I would swing into 45 minutes of full-blown mania, then within 12 hours I would be so depressed that I had trouble even moving around and walking.  Add to that a periodic binge-fast cycle, which I kept secret, and I was in for disaster.

Dr. P to the rescue: As soon as Dr. P became aware that I was cycling, she knew that the cause was the Thorazine discontinuation.  She tried raising my Risperdal,an antipsychotic, from 4 mgs a day to 6.  This didn’t quite do the trick.  We raised my Lamictal, a mood stabilizer, from 375 to 450.  Dr. P said this wasn’t likely to help, but it did.  She then raised it to 500–and kept it there.  We lowered my Risperdal to 5 when I noticed excessive thirst.  Then, it seemed as though my medications were finally okay, and I was stabilized.

With this news of Tardive Dyskinesia, it looks like Risperdal, the medication I’ve long relied on to keep my moods stable, will have to be discontinued.  What will this mean?  What next?  Will I be okay without it?

Thursday was the first day of lowered Risperdal; yesterday was the second.  And last night, sure enough, I binged.  I slept a few hours, and then woke up at 4am, sobbing.  I haven’t eaten all day today.  I’m not hungry or tired, just numb right now, exhausted emotionally from the ups and downs I experienced earlier today.

Frank, I feel like I’ve failed you today.  I’m in such turmoil over my eating right now, over my body, over the weight I’ve gained, the new flesh on my face and all over my body (though a lot of this is probably my imagination).  My clothes feel tight and I hate it.  But at the same time, I simply don’t want to be wicked skinny anymore.  I’ve had it with “the A word”–Anorexia.  I need to get my periods back.  I need to get warm this winter.  I need my clothes to fit.  And most of all, I need for you, Frank, to eat.

And who am I, starving, to tell you to eat?  Who am I to talk?  What right do I have to tell you to eat more, when I haven’t had a bite to eat all day?  Aren’t I being the same cheater that I hated so much in the past?  Aren’t I the same cheater that ate and drank six pounds’ worth of crap to get the scale to read a number that would keep me out of the hospital?  Aren’t I cheating the same now as I did when I lied to my T at every session I went to?

Probably not.  Because as they say, “This too shall pass.”  As they say, “Tomorrow is another day.”  Maybe tomorrow my attitude will straighten out, and I’ll feel better about my body and about eating.  Maybe tomorrow I’ll dare to put food into my mouth.  I am still growing.  We are still growing.  Let’s leave last night and today and just go on.

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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available  from Chipmunkapublishing–click here to access.  To read more about it at my home site, click here.

For those of you who were told you would never recover from anorexia

For those of you who were told you would never recover from anorexia nervosa, that you would suffer from some sort of eating disorder for the rest of your life, this message is for you:

I was once inhabited by an Evil Being named The Thing.  The Thing ran my life.  This was some sort of psychotic phenomena that no one seemed to understand–including me.  The Thing lived in my head and caused me such misery that I could barely tie my shoes in the morning, or shower, brush my teeth, or wash my hair.  Sometimes, my parents had to care for my dog, Tiger, because I could not safely take care of her.  Much of the time, I could not leave my apartment, and I could not be left alone.  I was so confused that I would throw out valuables and burn things on the stove.  Sometimes, The Thing affected my balance and coordination, and it also caused memory lapses due to the fact that it was always interfering with my thinking process.  Mostly, it “scrambled” my thoughts, jumbling them up so that I could make no sense of them.  The Thing also was not without its human qualities.  It was a sadist, torturing me daily.  Sometimes, it told me to do things I did not want to do.  Sometimes, it told me to kill myself, with step-by-step instructions.

I suffered with The Thing for two solid years, daily.  After the first year of struggle, after constant battling with some of the doctors, who said I was “faking” The Thing, that is, complaining of something that didn’t exist just to get attention, I was exhausted, completely hopeless, and ready to give up.  There were no answers, none at all.

Finally, a brilliant medical student, a man I truly respected, trusted, and liked more than the doctors at that point, took me aside, and we had a talk.  I think his name was Tarik.

“Julie,” he said, “I know you have suffered a long time with The Thing.  I know The Thing lives in your head and I know The Thing is real.  The truth is that The Thing isn’t improving.  We have tried everything.  You have the best doctors here, and we’ve tried the best medications.  You have mentioned before that you suspect you’ve had The Thing for longer than just this past year, is this true?”

“Yes,” I said, “I believe I’ve had some form of it for my entire life.”

“Well, then, what does that tell you?  Think about it.”

“Huh?”

“What do you think?  Look at your history.”

“That I’ll have it for the rest of my life?”

“Yes.  That is what I believe.  I know this is hard for you to hear, Julie.  I can only tell you the truth as I see it.  I know I am only a medical student, but I have observed you very closely, I’ve been in meetings with you, and I have discussed your case with the doctors.  I am telling you that it is now our goal to help you cope with The Thing, to learn to live with it from day to day.  Do you understand what I am saying?”

I began to weep, but did not hesitate to respond.  “I understand,” I said, “that knowing this, this information, which, by the way, does not surprise me, I need to make a switch.”

“Right.  Go on.”

I sobbed, “I don’t have to fight anymore!  I’m free!”

Over the course of the next year, we worked to help me cope with The Thing.  It was tough.  I got worse and worse.  I became despondent.  I could not live with The Thing, and The Thing was making increasing demands on me.  I began engaging in cutting behavior, and became severely suicidal.  For insurance reasons and complications, I was not hospitalized, but put in a “residence” on McLean Hospital grounds, a completely inappropriate setting for me at that time.

How does all this relate to anorexia, you’re wondering?  I’m getting to it.  Be patient.

Finally, when my suicidality became unmanageable at the residence, I was hospitalized for three weeks at a community hospital, and sent to a respite home.  There, I was finally given the individualized care and attention I needed to deal with my multitude of mental problems.  There were maybe three or four staff on during the day, and maybe four patients total living there.  I am not kidding you.  You could sit right in their staff office and talk to them.  I lived there for three weeks and then was sent home, and they cared for me at home for a total of 90 days.  In December, 1997, I still had The Thing and it was just as bad, but I was less suicidal, and that was the goal of the respite program, to help me live on my own again safely.  I was truly grateful to the program and the staff.

Later that month, I bought a computer that had Internet capability.  Remember dial-up?  I got used to that sound, and my phone was tied up for much of the day from then on.  No, I never became an Internet addict, but yes–I did make friends!  Through e-mail correspondence, I learned that I was capable of relating to other people in spite of The Thing.  I learned to make friends.  I learned to share.  I learned closeness.  I learned give and take.  I learned that I was capable of helping and supporting others.  And I allowed others to help me.

On my 40th birthday, January 8, 1998, The Thing left me, suddenly and unexpectedly, and never returned.

TO THOSE OF YOU WHO WERE TOLD YOU WOULD NEVER RECOVER FROM ANOREXIA NERVOSA:

It is 2010 and most clinicians believe that full recovery is possible for ANYONE.  Many who recover do not recover fully, this is true.  But this does not mean that anorexia is life in prison.

Anorexia is an addiction to starvation.  The theory of addiction is that you have it for life.  But look at it this way: I quit smoking cigarettes.  I don’t smoke.  Period.  It’s a simple as that.  I don’t suffer from being a non-smoker.  As a matter of fact, I enjoy not smoking.  I can walk fast without getting out of breath.  My lungs feel great.  I don’t stink of smoke.  My coffee table doesn’t have ashes all over it.  I’m not shelling out all kinds of bucks for packs of smokes.  And I’m going to live a lot, lot longer because I’m a non-smoker.  No, I don’t suffer from being an ex-smoker.  But am I “recovered” from the addiction?  What do YOU think?

IF YOU WERE TOLD YOU WOULD NEVER RECOVER FROM ANOREXIA NERVOSA, think again.  I was told I would never recover from The Thing.  It was a relief to me to hear this because I knew I no longer had to fight.  Have you quit fighting because of what you were told?  Have you been allowing yourself to slide deeper into your disease because you were told you would never recover?  Have you given up?

Yes, I was told that I would always have symptoms of eating disorders.  I was told that I would never fully recover.  Do I believe them?  You bet.  It is absolutely necessary that I believe them.  Believing that I will never recover gives me a sense of security. I can stop fighting.  I can get comfortable.  I can relax into Anorexia Heaven.

I believed that I would always want to die of starvation.  I believed that that part of my anorexia would never go away.  I believed that if I wanted death, then I would die–soon.  But you know something?  It suddenly went away.  I suddenly stopped wanting to starve myself and suddenly didn’t want to die anymore.

I have hope in my heart.

IF YOU WERE TOLD YOU WOULD NEVER RECOVER FROM ANOREXIA, MAYBE, JUST MAYBE, THEY WERE WRONG.

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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available  from Chipmunkapublishing–click here to access.  To read more about it at my home site, click here.

Not wanting to die: Day two

I went grocery shopping today, mainly to get cheese to go on the pizza Frank and I will be sharing tonight.  Actually, we’ll be skyping pizza, but I’d like to think that we’re eating in the same room, across from each other, even though we’ll be miles and miles apart.  And on the way to the grocery store, I thought: what now?  What is it that I should do?  What do I want from life?

I have not “wanted something” from life in so long.  Why should I have?  I wanted nothing but for it to end.  Now, things have changed.  I have time on my hands, future time, time spent not wanting to die, time spent not assuming my life will end.  I can now believe that there will be a tomorrow, and the next day, and the next, and I can actually make plans.

One obsession I hadn’t let go of, though, was National Novel Writing Month.  I was determined that I would do it even if I was “at death’s door.”  Now, I can do National Novel Writing Month alive and whole.  And I will have enough nourishment to be able to concentrate, write, and see the  project to completion.

When I made a sudden recovery at age 40, and the Evil Being that haunted me for so long suddenly disappeared, I almost immediately decided to take an adult ed writing class.  Soon after, I went back to college.  This was a radical shift from the old Julie, who could barely care for herself, could barely shower or brush her teeth, and rarely left the house.

So now, I have time.  Time to explore and experiment.  Time to live and enjoy.  Time to want to explore, experiment, live, and enjoy.  What do I want?  I hardly know.

I hardly know what I like or who I am.  All this has been hidden from me under the layers of my eating disorder.  I was told by so many people that I am so much more than my ED, but I did not see this.

Who was I?  I do not know the answer to this.  I felt as though I was my eating disorder and nothing else.  Now, I feel as though I am a blank slate ready to be written upon.  And I am the writer, the creator.

I don’t mean to imply that my anorexia has flown out the window.  Hardly.  I am still anorexic and I am still just as sick–mentally, physically, and spiritually–as I was before.  I am still obsessed about calories.  I still want to lose weight–deep down inside.  I still crave that starved feeling.   I still worry that everything I put in my mouth will make me fat.  I still want to eat as little as I possibly can.  It is just that there has been this tiny, tiny shift that has made all the difference.

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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available  from Chipmunkapublishing–click here to access.  To read more about it at my home site, click here.

Regarding a special friend

I have been friends with Frank for a month now.  Last night we made a pact.  We are going to eat.

Frank has been a special friend to me.  We met on an anorexia board.  He posted there and then maybe a couple of weeks after the discussion (that he initiated) ended, I contacted him and asked him how he was doing.  To my surprise, he wrote back.  We have been corresponding, and subsequently Skyping (Skype is videoconferencing) for several hours a day ever since.

I have never been so close to another person with anorexia before.  I have only known other anorexics from a distance, in ED groups.  Nor have I ever known a man with anorexia before.  Nor have I had a male friend for a long, long, long time.  It has been years, in fact.

I wrote: I just realized this last night, very suddenly: I am now restricting less.  It is not happening every day, but it is an overall tendency.  I have stopped losing weight as of the first week of September.  You know, I think it has to do with knowing Frank and being close to him.

I wrote: This was not conscious or deliberate.  It just happened.  I told my friend last night.  It was 9pm and she had just arrived home from some coffee shop with her husband.  She was skeptical and wondered how long my good fortune would last.

I wrote: Frank and I are having pizza together tomorrow night, via skype.  He is having one of those microwave single-serve pizzas and I am going to make pizza for myself.  It is kind of a deal we made.

I wrote: Would I make the trade?  I have gained one pound.  It was worth gaining one pound just for him.  I can give up that much.  Just for gaining the reward of being close to him and having him for a friend.  That’s how I see it.

We’re in this together.  We’re taking the plunge.  And I don’t want to die anymore.

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My wonderful new book, This Hunger Is Secret: My Journeys Through Mental Illness and Wellness is now available  from Chipmunkapublishing–click here to access.  To read more about it at my home site, click here.

I cannot fool them anymore

My doctor’s onto me and I cannot fool them anymore.  Next week, I won’t cheat.  I promise.  Next week, I won’t water-load.  Next week, they will know what I really weigh and I will take the consequences, whatever they may be.

I know, I know, I keep saying I’ll do this–next week.  But really, today, my doctor asked me, “Why is it that you weigh exactly the same each week?”  So she suspects something’s up.  She knows. She knows I water-load, that I plan and scheme and cheat the scale.  She must know that I weigh a lot less.  She looks at me, week after week, after all.

Today I saw a photo of myself taken in April, when I got my hair cut.  I look a lot different–younger, you could say.  More flesh on my face. Jeez.  It’s kinda shocking to me.  So I don’t even look like my Facebook photo anymore, taken a day later.  I’ve lost 90 pounds since my passport photo was taken, and still I zoom through security.  Do those guys even look at the photos?

So my primary care doctor suspects that something is up.  I can zoom through security and they don’t notice weight loss, but I can’t fool her another week.   I just can’t.

Tonight or tomorrow, I will write some things for my therapist: more about “Why I should not be sent to the hospital,” for one thing, and “Why I don’t tell you things,” explaining that I don’t tell her things because I’m afraid if I tell her I will be sent to the hospital.  And so on.  And then I will ask her if she knows already what I am going to tell her.  She probably does.  She probably already knows I’m cheating the scale big time.  You can’t fool her.  She sees me twice a week and she’s noticed things.  I can’t escape now.

I guess that it was bound to come to this.  I know I need help, and I am worried about the medical consequences of what I am doing to myself.  Like my eyes (I’m getting this checked out tomorrow) and my periods stopping.  I know I can’t continue to lose weight or eventually–well, this whole scene isn’t good.  It just isn’t.

So tomorrow I will tell my T that I plan to stop water-loading and let them weigh me correctly.  I have not scheduled my next weigh-in yet.  I will do this after my T appointment.  Not that I’m eager to go.

Apologies

I’m sorry I don’t have time for much of a post today.  I was in New Hampshire for most of the day, and have been busy tonight.  I have thoughts as I approach tomorrow’s weigh-in that I’d like to share with you but I don’t know how much energy I have to do so, as it is getting late here on the East Coast of the US.

I have lied and cheated my doctor’s scale. It is time to put an end to this.  I am only cheating myself.  I am only hurting myself.  My weight is low, way, way lower than they think.  Who knows what kind of danger I’m in.  I might as well give in and tell them the truth.  Maybe tomorrow, if I dare.  Or maybe next week, after my appointment with Dr. P.  I have to decide.

I know what you’re going to say.  Do it.  Do it tomorrow.  Tell them.  Tell them the truth.  Just do it.

Well, let’s see if I dare.  Just do it and take the consequences, whatever they may be.