Go looking……

Hi, everyone –

Today I am fortunate enough to have my writing posted on an amazing website called Black Box Warnings.  I hope you will look for me there.  Thank you!

http://blackboxwarnings.wordpress.com

My piece is titled:  Much Ado About Nothing

Have a wonderful day.

In Control

I like to feel sorry for myself.  I like hearing a “woe is me” story from a friend, knowing I can outdo her on any level of sadness.  No matter what bad thing has happened to someone else, should she choose to share it with me I can usually top it with some horror story from my past.  It’s a pretty selfish personality trait, one from which I derive almost no sympathy.  But it’s taken me years to realize I’m not doing it for the sympathy, or empathy of others.  I’m doing it because I like to believe my sorrowful past and present is a direct result of my bipolar disorder, and that gives me something on which to blame it all.

To shed some light on my past, I should give you a few examples of what I consider to be a life full of unfortunate happenings.  For starters, my sister died before I was born.  I never met her – I just like to tell people I lost a sister because it gives me an excuse to be sad.  Additionally, my older brother died in a plane crash when I was 23 and my father died of a heart attack on the floor of my children’s playroom while I stood and watched because I couldn’t remember how to do CPR.  My only surviving sibling doesn’t much like me or my disease and therefore doesn’t speak to me, my husband left me after 17 years of marriage, and I cannot find a full-time job to help pay my mounting pile of bills.  In addition, my non-smoking mom was just diagnosed with lung cancer and my 10-year old daughter has Oppositional Defiance Disorder and is likely also bipolar.

Yeah, yeah – I realize that my problems are trivial in comparison to what is going on in the world around me.  Wars and global warming and starving children.  I am aware of all that, and yet the selfish person who I am refuses to recognize that there is anything wrong with any part of the world that does not directly concern me.  It’s like I’m oblivious to anything or anyone other than myself and my problems.  Selfish?  You bet.  Incredibly, ridiculously selfish.  But it’s as if I can’t help myself.

I often refer to a great book called, “Loving Someone With Bipolar Disorder” by Julie A. Fast.  The book was intended for the spouse or partner of someone suffering from bipolar, but I don’t have a spouse or a partner anymore so I read it hoping to learn to love myself.  The book repeatedly references the selfishness of those suffering from bipolar disorder.  They can only think of themselves.  They think they are the only ones with real problems.  They believe their lives are worse than anyone’s around them.  I recognize that I am incredibly selfish, and it’s not a trait I’m proud of.  But as I mentioned earlier, I can’t seem to focus on any problems but mine.

In addition, bipolar people are often narcissists.  I believe there is a direct link between believing yourself to be better than everyone else and wanting everyone to feel sorry for you.  Part of being a narcissist is believing that you have control over the world and what happens in it.  For example, if only I had known CPR, perhaps my father would still be alive.  Control.  If only I had recognized my bipolar disorder earlier, then I could have sought treatment before my behavior became so intolerable that my husband could no longer remain with me.  Control.  If I had known that I was bipolar and that my future children had a 20% increased chance of becoming bipolar as a result of genetics, I could have prevented my young daughter from possibly developing the disorder by simply not having children.  Control.  Ridiculous and unrealistic expectations of control.

I also feel like my bad luck is contagious.  Don’t get too close, it might rub off on you.  Sometimes I believe my bad luck extends to the outcome of my son’s baseball game; I’ve had a rough day, so I shouldn’t attend or he will surely lose.  I probably shouldn’t go to the picnic or it might rain because of me.  Bad luck follows me around so be sure to keep your distance.  A pathetic state of mind, don’t you think?  My therapist thinks so.  Once, in the middle of a tirade about how I was directly or indirectly the cause of all bad things that had happened in my life or in the lives of those around me, she stopped me to declare, “My goodness.  I wish I had that kind of power.  Imagine what I could use it for.  The power to control people’s lives and the events of your own.  I would love being that powerful”

I felt like an idiot.

But she was right.  Who was I to think I had the kind of power to control whether or not someone dies, or someone’s team wins or loses, or whether my child develops bipolar or not?  My perception was that I was in control of all of these things, when the truth is that I am only in control of what happens to my own person on a day-to-day basis.  And what happens to me each day is largely dependent on my mood, which is largely dependent on the current state of my disorder.  I’m not really in control of my illness, even though my doctors assure me I should be.  Sure, I can do DBT and ECT and take medication to help control it, but the true reality is that it controls me.  My bipolar determines, indirectly, how I spend my days and whether I’m happy or sad.  It decides if I’m feeling up to going to the movies, or prefer to stay within the confines of my safe, warm bed all day.  It determines whether I yell at my kids or shower them with indulgences.  When it gets bad, it decides that I will undergo ECT with the hope that voluntary electrocution will set me straight, buying me a few more weeks of relative sanity.  My bipolar disorder defines me, because I let it.  Because it gives me an excuse to be pathetic.  Because it allows me to fall back on my stories of sorrow and woe.  My disorder allows me to be the “winner” of the “who has a more terrible life” competition.  At least I get to win at something.

Do I hope that someday I will be in completely in control of my bipolar disorder, instead of it being in control of me?  You betcha.  I’m just not there yet.

I’m in Trouble…..

I was browsing this morning through selections at my local bookstore and I came across a new book by author Annalee Newitz. As I stared at the title, all I could think was,

“I’m in trouble. Serious trouble”.

The book is about “How humans will survive a mass extinction”. But there is a word in the title that will prohibit me from surviving any such thing, because the title alludes that I will have to rely on my memory to do so. For those of you who have also gone through ECT, you’ll know why:

The name of the book is,
“Scatter, Adapt and REMEMBER”.

I’m so screwed.

Post-ECT (or, “A Post about ECT”)

Among the things I hate to admit is the fact that I truly believe ECT is helping me.  How can something so uncomfortable and dreaded have such a positive result?

I had ECT yesterday.  I make myself physically ill with the anticipation leading up to it, and I know I have to totally clear my calendar for that day because I will be useless when I get home.  For starters, I can’t eat anything for 12 hours prior to the appointment because otherwise I tend to throw up and it’s not pretty.  Upon arriving for my session, I take a cognitive response test to make sure I’m “with it” enough to go through with the therapy.  I take a shot of oral meds to help increase the level of my seizures, and then another to keep my stomach acids from roiling.  Then I take a pill that falls in the same category as Dramamine to keep me from tossing up the rest of the meds.

After I’m plugged into the IV, I’m rolled on a stretcher into the “electricity room” (my name, not theirs…..) and get hooked up to be zapped.  I am put under general anesthesia every time (47 times now, but who’s counting!).  But none of that is the part that I consider uncomfortable.  It’s how I feel when I wake up.

I’ve not seen myself in a mirror following ECT, but I have a fairly good idea of how I look.  Frazzled, drugged, unable to comprehend.  But I know how I feel, and it’s not pretty.  I feel dizzy and nauseous, and I typically have a terrible headache.  The 7-mile ride home in the car is almost too long, because I feel so nauseous and cannot hold up my head.  Yesterday I actually fell out of the car when I opened the door.  I need assistance getting in and out of the vehicle, and the only reason I brave the stairs to get to my bed is because I don’t want my children to see me post-ECT.  It’s scary and ugly and sad.  So I receive help getting up that staircase and collapse in my bed unconscious for at least another 4-5 hours.  If I don’t sleep through the night, I might get up to find something to eat.  But I typically don’t have much of an appetite and it’s tough to move around once I’m up.  I eat simply because I need the nutrition and hydration; otherwise, I’d stay in bed.

Halfway through the night following ECT, I often wake up feeling like I’ve been hit by a truck, because every muscle in my body aches.  I’ve been told that’s because of the seizures.  And when I wake the following morning, sometimes my head feels a little thick.

But surprisingly, that’s it.  Most often, I wake up and feel great.  I feel positive and alert.  And when I consider what I’d gone through the previous day, I’m always surprised at how great I really do feel.  The nausea and extreme fatigue are gone, the anxiety and darkness leading up to knowing I needed to return to ECT is gone.  I feel really good.  It’s amazing how many things in life start off badly, only to be good for you somewhere farther down the line.  I find myself doing this a lot lately:  trying something hard and distasteful, hoping for a good result.  And ECT is a good example of this.  I hate it.  I truly hate the anticipation and anxiety leading up to it, and all of the nasty discomfort and pain that follows for about a day.  And then I’m good for 5-6 weeks before I am the one to decide it’s time to go back.  The good feeling is addicting.  And I’m willing to go through the bad to get to that feeling.  I’m willing to do that in all aspects of my life.

Latuda and its Happy Side Effect

I want to share with you the success I’ve had with a new medication.  I know a lot of you are frustrated with your meds and their inability to treat multiple symptoms without uncomfortable or dangerous side effects.

Most of you with bipolar are aware that there are only two medications that are FDA-approved specifically for treatment of bipolar disorder:  Seroquel and Lithium.  And many of you may have tried those two meds, with little or no success.  I fall into that category, and for several years I have bounced around between various prescriptions, trying a combination of this and that, hoping for some success.  I was looking for a medication that I could take singularly, without having to take a separate pill for each of my symptoms.

I think I’ve probably tried just about everything on the market, or combinations of those meds.  The aforementioned Seroquel and Lithium, along with Abilify, Tegretol, Prozac, Zoloft, Celexa, Cymbalta, Lexapro and Topomax all had their positive attributes.  Most of them treated one of more of my symptoms, but one alone was never enough.  I needed something for the depression, anxiety, sleeplessness and mania.  None of these seemed to be effective on its own, so I was always taking more than one pill at a time.

More frustrating than having to take several pills a day were the side effects.  I lost weight and gained weight, my hair fell out in clumps and my vision blurred.  I woke up several times during the night, or couldn’t wake myself in the morning without severe grogginess the rest of the day.  I had dry-mouth and night sweats, headaches and swollen hands and feet.  I had the shakes and increased  anxiety, short temper and extreme fatigue.  Some of the medications decreased my mania, but increased my depression.  The commercials for anti-depressants that said, “some people taking this medication may experience increased feelings of depression or thoughts of suicide……”?  Those disclaimers were meant for me.  It was incredibly frustrating.  I couldn’t believe scientists could put a man on the moon, but they couldn’t come up with a singular treatment for manic depression without the horrific side effects.

Eighteen months ago, I finally settled on a combination of ECT, Tegretol and Ativan.  The ECT treated my mania very effectively, and I continue still with those procedures because it is the only treatment I have found that stops my mania in its tracks.  The Tegretol made me fairly sleepy at night, but I still needed the Ativan to keep me asleep until morning.  However, after about a year of the Tegretol, I started experiencing chronic aches and pains every time I laid down.  Sleeping (if you can call it that) became very difficult.  I woke several times during the night with what the doctors initially thought was “restless leg syndrome”.  I saw a rheumatologist thinking it might be arthritis, and was then referred to a neurologist only to learn that he believed it was drug-induced lupus.  The only way he could be sure was for me to discontinue use of the Tegretol.  After taking nothing but the Ativan for about 6 weeks, I did start to feel better, but felt slightly depressed because I knew I couldn’t go back to the drug that seemed to work best for me.  I was then put on Abilify, which I found to be very effective at quickly treating depression.  Within a week, I felt my spirits lift a bit, but unfortunately I gained quite a bit of weight in a short amount of time and had constant muscle twitching in my hands.

That’s when a medication called “Latuda” was suggested.  Latuda is a fairly new drug with no generic that is being used “off-label” to treat bipolar disorder.  It’s actually a medication used to treat schizophrenia, but has shown significant benefits for bipolar patients.  My doctor told me that the FDA has not yet approved it for manic depression, but he thinks that might be right around the corner because of its success in treating the combination of depression and mania.

What side effects have I experienced from Latuda?  Well, it doesn’t make me groggy and the first couple of nights I took it I felt light nausea, but that went away quickly.  I have to take it with protein or it won’t work as effectively, but other than that I’ve noticed few negative side effects.  I have felt much less anxious, and I have not yet experienced that heavy weight of aggression, anger and anxiety that builds up and inevitably leads to a manic episode.  It is those symptoms that send me to ECT, and I’m hoping that if the Latuda remains truly effective, I might be able to limit or even eliminate ECT from my treatment plan.

More importantly is the positive side effect:  I feel happy.   Yeah, you heard me right.  HAPPY.  I’ve only been taking this medication for about two months, but so far I have felt better on it than on any other prescription or drug combination.

I’ll keep you posted on my progress while taking Latuda, but I wanted to throw the name out there in case any of you are as frustrated with your treatment plan as I have been.  Maybe ask your doctors about it?  It’s the first medication I’ve found to be truly effective in treating nearly all of my symptoms of bipolar disorder and just knowing that I may have found “the one” makes me feel better already.

Match This (take 2……)

Note to readers:  I originally published this post last month, but I felt it bears repeating as yet another friend has suggested I start dating……  So here it is, again:

I’ve been separated from my husband for nearly one year. Some of my friends have been encouraging me to look into dating. Meet someone nice, they tell me. Go on a date, they tell me. Let someone treat you to dinner or a movie, they tell me.

True, I’m desperately lonely. But I’ve sworn to myself that I will never date. The thought is appalling to me. Besides – how would someone like me find anyone to go out with? How on earth would I meet anyone?

A dating website, I am told.

Seriously? And what would my ad look like? Here is my attempt at my online dating profile:

“Tall, blonde, bipolar mother of three in her early 40’s seeking the companionship of a man who enjoys long walks through the halls of the ECT department, unexpected violent outbursts and lengthy bouts of depression. She has a terrible memory as a result of electricity-induced seizures. She hates loud, repetitive noises and traffic. She loves speaking rapidly and interrupting often. He should know that the applicant’s first marriage ended indirectly as a result of her disorder, and must be willing to tolerate what could be indiscretions of various kinds should the applicant lapse into mania. He should also know that she is still hopelessly in love with her husband.”

Yep, I’m a real catch.

Goodbye, Sandi

Three weeks ago, I was notified that a friend of mine had overdosed on a combination of pain killers and antidepressants.  I was told that she was on life-support at the hospital and was brain-dead and not expected to make it.

I have to admit that I was, for a moment, envious.  How many times have I wished that for myself?  Simply to end the misery that is my life?  I want desperately to believe in heaven and I think what better things might await me there.  I could see my brother and sister and father again, there would be cotton candy and Junior Mints in excess, I wouldn’t gain weight and I could listen to any music I want.  And no house cleaning!  It just seems like such an easy solution, doesn’t it?

When I go to ECT, there is a multiple choice test I have to take to get something called a “Beck Score”.  The score helps determine my mental “well-being”, which in turn helps determine how often I have to be voluntarily electrocuted.  I always sort of smile when I answer these questions:  do I feel less attractive?  do I have more or less energy than usual?  do I feel productive?  do I get along with others?  But one of the final questions on the test is in regards to suicide.  I have to choose the option that best suits my mood at that particular time:

a)  I think about committing suicide all the time.

b)  I think about suicide all the time, but would never carry it out.

c)  I rarely think about committing suicide.

d)  I would never consider suicide.

Sadly, I find myself hovering pretty close to option “b” on most days.  Yes, I think about suicide all the time.  All.  The.  Time.  But because I am a coward and also because I have a conscience, I could never actually carry it out.  What if I didn’t do it right?  What if I didn’t complete the act and the “life” I was left with was even more horrible than it is now?  And then I think about my precious children.  I look at my three kids and wonder who would do my daughter’s hair for prom, who would iron my son’s shirts and teach him stripes and plaids don’t mix, who would drive them to piano lessons and gymnastics?  Who would tell them how to respond to the class bully, or how to make the family traditional holiday cookies?  But most of all, who would love them like I do?

It’s not that I think my kids would miss me that much.  We are in that difficult part of our relationships during which, as my husband and I have been separated for a year, my children have found the “preferred parent”.  Their dad is simply cooler.  He’s more playful and agreeing.  He is the coddler, I’m the enforcer.  And there are definitely times when I feel like they could do without me.  Like when my daughter asks, “When is it Daddy’s night to be with us?”, a question I answer every night of the week.  I don’t believe that my kids would be devastated to be without me.  At least, not right now.

But I think they would miss me later.  I want to believe that they would miss me later.  I need to believe that they would miss me later.

Sandi has left behind three children, pretty close in age to mine.  Did she have them in her thoughts just before she opened that last prescription bottle?  Did she consider the pros and cons of having children grow up without a mother?  Was her esteem so low that she really believed they’d be better off without her?  Or was her pain just so deep that she couldn’t bear another moment on this earth?  Did she consider the consequences and decide that this was her only option?  Did she hurt so badly that she simply couldn’t go another day?

I used to think that suicide was a coward’s way out.   That it was for selfish people.  Who doesn’t think about what’s being left behind when a suicide is committed?  Who doesn’t wonder, “who will find my body?  will it be my 7-year old son?  do I leave a note, or keep them guessing?”  Do the people who go through with it really put that much thought into it to begin with?  Or is it a spontaneous response to a really bad day?  Is it one of those things where they don’t really want to carry it out all the way through, but the attention of an “attempt” would be a good way to test whether your loved ones really are feeling the love?  Is it a call for help?  Do people attempt suicide hoping that the act is never actually fully carried out?  Or are they really out to do themselves in?  And since suicide is considered a sin, do suicide victims get to go to heaven?  Is it really better on “the other side”?  Are there really unlimited supplies of Junior Mints?  Will we really see our previously lost loved ones again?

Or, do people who commit suicide end up in hell?   And if they do, is hell worse than their lives here on earth?  Or might life here be so awful that hell looks pretty good?

Sadly, we can’t exactly ask a suicide victim.

I want to believe that Sandi accidentally took all of that medication.  That she was hoping the pills would temporarily fix what was hurting.  That she could sleep through the day and wake up the next feeling refreshed.  I don’t want to believe that “the next day” was not in her plans.

For now, her children are being told that their mom died of respiratory failure.  But if I know the truth, then dozens out there also likely know the truth.  And eventually, her children will know, as well.

Wherever you are, Sandi, I hope you’re happier there than you were here.  I miss you.  I know your children miss you.  And I look forward to seeing you again in the future.  Just hopefully not in the near future, if I can help it.