I’m back….. (and I’m a little upset)

Hi, everyone –

My friend called me a few weeks ago asking why I hadn’t posted anything to my blog in a while.  I gave her the usual excuses:  no time, writer’s block, I didn’t think anyone was reading me, etc.  Well, I realize that none of that really is true.  In fact, I think the only reason I haven’t written in so many months is simply because I’m feeling slumpy (is that even a word?).  I’m not depressed, clinically, and I’m not manic.  I’m just feeling blah.  I’ve been spending the last six months running kids to their activities, cleaning the house, working and trying to be better about volunteering and being an asset to my community.  And by the end of the day, I never wanted to write and share my feelings with the public.  I just wanted to crash in front of “Game of Thrones” and be drawn away by a fantasy life that is nothing like my own.  Again, not depressed.  Just not anything.  What I needed was a kick in the bottom to get me writing again.

Then, last week, someone who is very, very dear to me posted a link on Facebook that talked about all of the recent school violence that had occurred over the years.  The article discussed how each of the shooters had been on some kind of prescription medication.  And the title of the article read, “Facts Don’t Lie”.  I suddenly woke up.  I was hurt and amazed that the writer of this article could so easily place blame on medication as the reason that these young men went on shooting rampages in their own schools and in others.  I was also hurt to learn that this person who shared the link seemed to agree with its content.  It was hurtful because he knows my situation and that of my daughter.  We are both on a lot of medication to treat our variety of mental issues, including bipolar disorder, anxiety, ADHD and ODD.  These medications have been absolute lifesavers for us, and allow us to function like “normal” people in society.

I read through the article, and its basis was that all of these young men must have been spurned to violence because of the cocktail of prescribed medication in their bodies, something each “boy” had in common.  What about the other things they had in common?  They all had easy access to weapons, they were all caucasian, they all came from middle- to upper-middle class families.  Perhaps they all loved the color blue, or maybe they were all right-handed?  Do any of those shared traits and lifestyles point to violence?  Of course not.   Then why blame the medication?  Isn’t it possible that the kids weren’t taking enough medication, or the correct medication and that’s why they went on their shooting sprees?  I’m guessing the article’s author doesn’t have anyone in his family who suffers – truly suffers – from mental illness, and takes medication to keep them sane.  I’m going out on a limb here and will assume that this writer has never watched his child suffer in school, unable to function in public, unable to sleep, crying incessantly.  He has never seen his little girl throw uncontrollable tantrums over how a tag itches the back of her neck, or how her brain “talks to her at night” and keeps her from being able to sleep.  He probably has never had a wife who tried to kill herself because she was in such despair over the mental pain she was suffering.  He, himself, has probably never been unhappy and miserable for no reason, and unable to get out of bed for days at a time and unable to concentrate or focus on anything in his life, distraught over a mental illness that is not his fault.  How dare he blame the murders of so many innocent people on medication?

True, medication is not for everyone.  I live in Boulder County, Colorado, where a lot of illnesses are treated herbally or holistically.  There are hundreds of families who do not vaccinate their children, or give them cough syrup or even a Tylenol.  Do you have any idea how much I wish I could be those people, who don’t rely on prescription medication to keep them happy and healthy?  Sadly, I’m not one of them.  I tried the “no-meds” route for years, and it simply didn’t work for me.  If it were not for medication, my daughter probably would not be allowed to attend public school, and she’d be unable to function as part of her softball team.  She would not have any friends, and she wouldn’t be able to sleep.  She would cry incessantly over nothing, then sob in the corner of her room, rocking and asking us, “Why am I like this?  I hate myself!”  I am so thankful for the availability of certain prescription medications because they have helped to save my family.  But of course I agree that they are not suitable for all people.  Some people have been blessed with perfect mental health.  I’m just not one of them.

In addition, who’s to say that medication for diabetes or cancer or Alzheimer’s won’t have dangerous long-term effects?  Everyone seems to be so concerned with the medications prescribed to children and adults for mental illnesses because we don’t know how they will play out years from now.  There is not enough research or history to know exactly how these medications will effect us later in life.  But that is a chance I am willing to take to live my life with health and happiness in this moment.  Bipolar disorder is a debilitating, life-threatening disease much like diabetes or cancer of Alzheimer’s.  None of those diseases can be cured.  We are stuck with them forever.  And medication can provide longevity and mental and physical security to those who truly need it.

So, getting back to “Facts Don’t Lie”.  The “facts” are probably yes, those boys had mental issues that needed help.  But don’t blame the medications.  Perhaps the blame is on the doctors for not prescribing the correct medications.  Maybe the boys were prescribed drugs, but didn’t take them as directed.  Maybe they were not taking advantage of medication’s essential partner, which is therapy.  Anyone taking prescription medication for mental illness should also be in some sort of therapy and seeing his or her psychiatrist regularly.  Can we blame the parents for looking the other way?  Probably not.  I know from experience that there are times when you have done so much to help your child and nothing works, and it is easy to turn away and hope the problem resolves itself.  Hopefully they believed they were doing everything they could for their children.  Can we blame society and the media?  Absolutely.  Violent video games and movies?  Possibly.  Lenient gun laws and easy access to weapons?  Sure.  These boys were all bullied at school, treated badly for being “weird” or “geeky”.  Their crimes were all sensationalized on television, practically encouraging that if they’re going to go out, they should go “big” so they can have their legacy live on with TV, magazines and big-selling biographies.  But I emphatically do not believe that we can solely blame the prescription medications.  These drugs are meant to help people with mental illnesses.  And if the boys had been diagnosed correctly, prescribed the correct medications, were monitored by their doctors and encouraged to attend therapy, then I do not think it’s fair to blame the drugs.  Just like it’s unfair to blame the lack of security at the schools or the parents for leaving gun cabinets unlocked.  It was a tragedy.  And we can blame the shooters.  But there are simply too many factors and too much is unknown about these boys to simply blame the meds exclusively for their actions.

My dear friend who shared the article with me, and who appeared to be in agreement with its content, said in a later post that there is simply too much not known about the long-term effects of these medications.  But these shooters, these children themselves, could not have possibly been on medication long enough to suffer yet any “long-term” effects.  They were teenagers.  Babies, really.  In my opinion, “long-term effects” pertains to what these drugs might do to us twenty or thirty or forty years down the road.  And we don’t have those answers.  But in my situation, I would much rather have happiness and sanity right now, when I’m raising my children and trying to contribute to society, and suffer side-effects later.  If they kill me dead after thirty years of taking them, at least I know I had those thirty happy years.

 

On a separate note:  one of my recent readers commented that “this blog does seem like a drug company website”.  I can assure you, it is not.  Blogs are a way for people to express their opinions and share their thoughts and feelings.  I have had success with certain medications and I share those successes with my readers because I want them to know what else is available to them.  Many of you haven’t heard of certain medications, or combinations of medications, that have proved helpful.  I myself learned of my current drug combination from someone’s personal website and asked my doctor about it, tried it and found it was the right mixture for me.  I am, in no way, promoting medications on behalf of any drug company, and never will.  I do this simply because I want to share my positive experience with anyone willing to read about them.  Thank you.

Hello. My name is……

The Associated Press released an article today regarding President Obama’s desire to “end the stigma of mental illness”.  Yes!!!!  Obama made public his intentions at a conference that was actually organized to discuss the Sandy Hook Elementary School shootings.  Attending the conference was actor Bradley Cooper, who recently portrayed to high acclaim a man suffering with bipolar disorder.  Also in attendance was Glenn Close, who has recently been seen with her bipolar sister in television commercials promoting awareness of mental illness.  The National Association of Broadcasters has announced its new campaign to promote positive awareness of mental illness through a series of TV commercials, radio ads and other social media outlets.  On a personal level, Ms. Close helped to start an organization called “Bring Change 2 Mind”.  This non-profit group produces public service announcements designed to reduce the stigma associated with mental illness.

President Obama is quoted as saying his goal in hosting the conference is to “bring mental illness out of the shadows”.  He commented that, “We whisper about mental health issues and avoid asking too many questions…..  There should be no shame in discussing or seeking help for treatable illnesses that affect too many people that we love.  We’ve got to get rid of that embarrassment.  We’ve got to get rid of that stigma”.  I have previously quoted author Terri Cheney in several past posts, loving what she says about how “disease thrives on shame, and shame thrives on silence”.  Obama gets that.  He recognizes that in order to reduce the stigma and discrimination associated with mental illness, we have to open up.  We have to promote awareness.  We have to talk about our disorders.  We have to show the public that there should be no shame in mental illness, and to do that we must not remain silent.

Part of President Obama’s health care initiative includes improvements to mental health coverage.  In fact, next year there will be a ban on denying coverage to people suffering with mental illness.  Public spending on services to aid the mentally ill has been greatly reduced in recent years, leading to closures of psychiatric hospitals and a reduction in care available to patients who need it the most.  It is commonly believed that until community services intended to help the mentally ill can be funded by the government, the stigma will remain.  Vice President Biden was quoted as saying, “Think of the irony here if through your great efforts, we encourage people to come forward and they find out there’s no one there to help them or they have to wait a long time”.  It reminds me of the line from the movie, “Field of Dreams”:  “If you build it, they will come”.  If the government provides federally funded assistance to patients suffering with mental illness, they will step forward.  They will emerge out of “the shadows”.  And perhaps they will do so shamelessly, as they should.

Bringing someone like Bradley Cooper on board is a great move.  He may not be directly affected himself by bipolar disorder or another mental illness as was his character in “Silver Linings Playbook”, but for those of us who are shallow (as I am) and easily influenced by a handsome man in a well-tailored suit, he could by a great spokesmodel.  He’s been actively promoting awareness of mental illness for several months and is publicly acknowledging that it had been part of his life without realizing it.  He says he has friends who have suffered silently for years who finally worked up the courage to come forward following his Oscar-nominated portrayal of a bipolar man re-emerging into society following a short stint at a psychiatric hospital.

But even Bradley, Glenn and Barack can’t do this without some public support.  And that’s where we come in.  We need to start speaking up.  How many of our friends don’t know that we suffer?  How many of us are silent?  How many of us don’t publicly admit that we have a mental illness?  Silence breeds shame.  We need to not worry what our neighbors would think if they knew we have mental diseases.  We have to stop living in the shadows of the stigma, and step forward and admit that we are ill and need public resources to help us to get better.

I’ll go first:

Hello.  My name is Cecily, and I am bipolar.

There.  That wasn’t so bad.  Your turn.

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.

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.

“Chaos to Cured”

I’ve just finished reading an interesting book written by an acquaintance of mine, Kirk Miller, describing his life with Bipolar 1, his body’s resistance to most conventional bipolar meds, and how he stumbled upon a medication that he believes to have cured his mental illness.

I urge you to read his memoir, because some of his highs and lows are so familiar to me, as well as so many of the side effects he truly suffered from while taking the “typical” meds. I do not believe he tried ECT so for those of you adverse to the thought of electric shock as therapy for bipolar, perhaps this book is worth a look.

It’s a fast read, and inexpensive. You can download it onto a Kindle for less than $4. And best of all? All of his net profits from sales of these books will be donated to the “Healing Unique Minds Foundation”, which provides research and aid to bipolar patients. You can even check him out at http//:www.luneraresearch.com

If nothing else has worked for you, read Kirk’s book and talk to your doc. See where things take you from there.

Thanks.

#chaostocured

Just like Mom!

My 10-year old daughter and I have been prescribed the same medication by our respective doctors. Different doses, of course, but the same drug. She thinks it’s cool, because it has to be taken with food and we’ve instituted a new bedtime snack/pill popping routine. We can remind each other when to take it, and we are even experiencing some of the same initial side effects together. How fun! Kind of like back in the ’80s when moms and daughters wore matching Laura Ashley outfits!

Yeah, not really……

DBT, anyone?

I’m being “required” by both my ECT doc and my psychiatrist to try something called “DBT” (Dialectical Behavior Therapy). They even wrote it out on a prescription pad and handed the “Rx” to me with a warning that if I didn’t try the 10-week program, they would no longer be willing to treat me. I don’t think that’s actually true – I think they were trying to force my hand because they believe this will really work for me.

It had its desired effect.

My teenage daughter saw the “prescription” and because it was written in typical illegible doctor handwriting (no offense, Ted Danson….), she thought it said, “DiaBOLICAL Behavior Therapy”. I suppose that wouldn’t be much of a reach, considering a lot of my past behavior.

So, I’m now 3 weeks into the program. And I’m curious: have any of you done this? Your thoughts? Has it worked? I’d love some opinions and maybe some personal insight into DBT.

And if it was diabolical, well, I guess I’d be interested in hearing that, too.

Thanks in advance.