Surfacing After Silence

Life. After.

I Wish My Doctors Had Listened


I love facebook quizzes.  I have learned what my name should have been, what state I belong in, what state I am from, my element, my spirit type, and a whole lot of other things I have to believe because it’s on facebook, so it has to be true.  Yesterday, I learned that people call me a “sage” behind my back.  I think that is the polite way of saying that people call me a nerd.  This is not real news to me; I have always been a nerd, and I now claim that label with pride.

Nerds like to think.  I like to over-think.  (Does that make me a Super Nerd?)  Since July, I have been complaining about a cluster of physical symptoms, and every symptom is familiar to me.  “I feel this way when my ferritin levels start to drop,” I repeatedly told my doctors.  The only one not to suggest that it was “just stress” or “just depression” was my psychiatrist, who firmly believed there was something physical going on.  After all, over the past several months, my depression has lifted tremendously, my anxiety has decreased, and we’ve been able to stretch out my ECT treatments and go off of two of my psychiatric medications.  I said, “It doesn’t make sense that these symptoms are caused by depression if my depression is steadily improving.”  My medical doctors told me it was fine and that my ferritin levels were within normal range.

Technically, they were.  But when I dug up my labwork from the previous six years, I discovered that my current ferritin level was 2/3 below my usual norm.  One year ago, my numbers were usually around 80 (low for the average person, but normal for me since I was born iron deficient anemic).  Now they had dropped down to 16.  Off to the hematologist I went, and he was shocked my doctors had not treated this earlier, especially given my history.  “Dr. X actually told you it was probably just stress?” the hematologist asked.

I know my body.  Because of recovery.  I have learned to listen to my body and to respond appropriately.  When I practice yoga, it is no longer with the intention of “getting stronger.”  It is with the intention of listening to what my body has to tell me that day.  So sometimes I hold poses longer, sometimes I push deeper, and sometimes I skip poses completely.  Through my cardiac journey, I can “read” my heart accurately and can often tell you my pulse rate and my blood pressure without using measuring tools.

I can tell you when something is wrong with my body.  My doctors in MO knew to trust me in relaying symptoms.  My current doctors (aside from my psychiatrist) have not learned to trust me yet.  Instead, they (I sought out three separate family physicians because I never felt heard) repeatedly relied on depression and anxiety, even though I told them multiple times that “this is not what depression feels like.”

In seeing my psychiatric diagnosis on my chart, did they assume I was there for attention?  That I was merely pill-seeking?  That I couldn’t be trusted to know my own body?  I may have Bipolar Disorder and a history of Anorexia, but that doesn’t mean my doctors should disregard what I say.

Have you experienced something similar?  Could you please take my survey?  I am not a scientific statistician, and this is not an “academic level survey” that could be used in a peer-reviewed study.  You don’t have to supply your email, and you don’t have to answer every question.  If you would like to contact me, please message me with your email or send me an email at


May 3, 2015 Posted by | bipolar disorder, Communication, depression, Eating Disorders, ECT, recovery | , , , , , , , , , , , , , , , , , , , | Leave a comment

we’re allowed to be human?

Bad Day

I’ve gotten a couple of messages recently from people who are either fully recovered or have been almost fully recovered for some time or who have been doing extraordinarily well for sometimes . . . and the fact that they’ve been doing well has been no secret.  Friends congratulate them, offer encouragement to “keep moving forward” and the like.  And they think they’re through with the eating disorder.  They like their new, free life and have things to live for that they couldn’t have imagined before.

And then, out of the blue, a weekend comes along triggered by stress, memories, poor body image, fear, and a whole lot of other things.  And they find themselves engaging in old eating disordered behaviors.  And, in general, two things happen in each case (other things happen but aren’t as predictable) : A) they feel crappy about themselves, or ashamed, or afraid this means a total relapse; and B) someone else will say, “But you were doing so well.”

Let’s look at B first.  How do you think it feels to hear someone say, “But you were doing so well.”  Sure, it may be true, but what do those actual words imply?  A) That you should have continued so well; B) this is definitely not good; C) You’re certainly not doing well now; and D) All of that progress just went down the drain.  So what kind of feelings do these linguistic interpretations stir up?  A whole crapload of shame and embarrassment.  And the feeling of letting someone else down in the process.  A lot of us have this perfectionistic background and grew up with the need to please others no matter what, so hearing that we’ve let someone down, well, all the old issues just come roaring up to the service.

What’s wrong with saying, “Sorry you had a rough weekend, but I know you can get back on track like you did last time.”?  What’s wrong with saying, “Is there anything you want to talk about?”?  What’s wrong with “I’m here if you need anything.”?  Knowing someone is there, beside you, willing to sit with you, is tremendously better than hearing that, “But you were doing so well” and all of that statement’s implication.

Now let’s look at A.  Is this a reason to feel shame?  No.  We expect people new in recovery to have lapses and bad days.  Well, guess what?  Years of self-harming behavior don’t disappear in a month.  Those tendencies may be at the back of your head for some time.  And what’s important is not the two days you slipped back into old habits but afterwards when you realize what’s going on and work on turning things back around and getting back on track.  That’s what the comments should be about: the strength and determination it takes not to let one off weekend pull you back into the eating disorder.

I keep this blog. I encourage people through snail mail and through facebook.  I’ve lobbied for the Eating Disorders Coalition.  I’ve given talks during NEDA Awareness Week.  I’ve helped friends find treatment.

I’m supposed to be better, right?  I mean, I call myself recovered.  Fully recovered.  And yet, this past month has been difficult.  Change and loss have always difficult for me, and when my life seems to be made up of changes and loss?  And I’m still struggling with depression and receiving ECT each week, soon to be every-other week.  And I’ve found this fully recovered self struggling with restricting.  I’m still not over my desire to disappear when things in my life well, to put it plainly, suck.  (And yes, I know I can’t disappear.)

Here’s what’s making this not a relapse: I started talking to my therapist after I noticed I wasn’t eating as much after only four days.  There is no hiding it from my treatment team; they all know.  There is no trying to get away with something.  There is no desire to keep going, only a desire to get back on solid ground rather than stay in this muddy terrain.  And there have been steps taken to get back to that purely solid ground.  And there has been pride for everyone one of those steps taken.  I won’t let myself get to a dangerous point, but I don’t even want to be below an ideal point.

What does this make me?  Human. I’m not perfect.  My recovery was never perfect.  I’m not perfect.  I never will be.  But just because I’m having a hard time does not mean I’m no longer in recovery.  I care too much about the life I gained to give that up.  But it will take some work on my part to get back to that fully recovered self again.

I am not ashamed of where I am.  I am damn fucking proud of myself for bringing it up with my therapist before he noticed anything.  I never would have been able to do that in the past.  There’s a lot of things I’m doing now that I never would have been able to do in the past.  And that’s what I’m choosing to focus on.  As i said in a recent post: The past is in the past.  The future has yet to happen.  But I live in the now.  What I choose to do now, not what I chose to do last week, is what is important.

April 27, 2011 Posted by | Body Image, coping, depression, Eating Disorders, feelings, recovery, therapy | , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment


Tea Posy

I realized yesterday that I hadn’t blogged in awhile, so I decided to remedy that today.  We’re in the middle of Snowpocolypse 2011 here, and aside from spending two hours shoveling my car out this morning, I’ve been confined to my apartment all week.  It’s given me some time to catch up on course reading for both the courses I’m taking and the courses I’m teaching and get ahead a teeney little bit in my course prep for the two classes I’m teaching.  Mainly, I’ve had a blast watching my one cat repeatedly run smack into the floor-length window in a vain attempt to catch the snowflakes on the other side.

Probably the reason that I haven’t written is that I haven’t been feeling that great and could think of nothing to say that would be the least bit inspiring or encouraging to anyone.  Physically I am fine, for the most part, save one heart episode on Monday, but the depression . . . well, it’s been a bitch and a half lately.  The fact that I went to all my classes last week absolutely amazes me.  The fact that my campus is shut down this week due to the blizzard thrills me beyond belief.  I am dreading having to step back on that campus and well, be a functioning, responsible, and social  adult again.  My bed is much more enticing.  I was supposed to have ECT again yesterday, but the blizzard kind of prevented that from taking place. I keep telling myself that things will start turning around, that I haven’t done enough ECT sessions to notice a change yet.  I keep reminding myself that ECT always helps and that I trust this psychiatrist more than any other psychiatrist I have ever worked with.  Ever.  And that says a lot since I have a general distrust for that profession.  (long story)

My therapist is a DBT therapist.  And one of our goals is, of course, to “create a life worth living.”  Right now that involves using a set of DBT skills that have always been particularly difficult for me: Self-Soothe.  It has always been much easier to deny myself, punish myself, and push myself.  But with this depression and the anxiety that seems to tag along with it, I’ve been creating a list of self-soothing activities.  For those of you unfamiliar with this concept, Self-Soothe is the set of skills where you use each of the five senses to–yup, you guessed it–soothe yourself.  This is something a lot of us with eating disorder histories never really practiced all that much, for a lot of reasons.  But I challenge you to start your own list.  A list with lots of options since we aren’t always in a physical position to use certain skills  (as much as hot chocolate is a very soothing drink, I cannot get up in the middle of a three-hour class to go get some if I start to feel anxious during class.  nor would my professor appreciate it if I took out my iPod and started listening to my favorite relaxing music).

Here are some of my favorites:

Taste – tea (and I like the whole process of making tea in a tea pot and smelling it and holding the warm mug), chocolate (specifically a heath bar), coffee, grapefruit

Smell– lilacs, lavendar, vanilla, incense, candles, coffee

Hearing– Gemma Hayes, Haley Bonar, Beth Orton, A Fine Frenzy, Brandi Carlile, Chopin, Elgar, Jacqueline DuPre,

Touch– petting my cats, holding my stuffed bear, wrapping up in one of my soft blankets, a hot bath, body lotion, massaging sore muscles, brushing my hair, knitting or crocheting

Sight– I have this book of ballet photos, I love the Griffin & Sabine books, re-reading letters from friends, looking at pictures of my niece and nephew and friends

These are just some of the things on my list.  I know taste may be difficult for some people, and if you find it triggering, don’t push it.  But also remember that you should not feel guilty if something makes you feel better.  If the only thing you have that comforts you is food, then there’s a problem, and you should talk to someone about emotional eating.  And if you binge as a way of comfort, that is also dangerous.  It took me a good couple years of recovery to let myself enjoy food and use it appropriately in times of distress.  I no longer feel guilty when I curl up with a blanket, my cats, a movie, and a dish of ice cream after a long week of classes.  But it took time to get there.  Do not push yourself in that direction.  You will know when you are ready.


But all those other senses–learn what works for you. Everyone is different.  Know yourself, and know that you have the ability to help yourself.

February 2, 2011 Posted by | coping, depression, Eating Disorders, feelings | , , , , , , , , , , , , , , , , , , , , , , , , , , | 8 Comments

ECT (Electroconvulsive Therapy) aka “eat more broccoli”

So this picture has absolutely nothing to do with the topic of my post.  But if you type in “ECT” into google images, this one will appear.  As will a bunch of cartoon line drawings of a little girl smelling flowers and playing soccer.

ECT.  Electroconvulsive Therapy.  Also known as Shock Treatment or Electroconvulsive Shock Therapy.  Yup.  One Flew Over the Cuckoo’s Nest.  The Bell Jar. That ECT.

Except it’s not “that ECT” anymore.  When that movie and novel came out, they both represented ECT fairly accurately.  Patients did go into full blown seizures and needed to be restrained and it was painful and sometimes patients got injuries–broken bones, pulled muscles, bruises.  And there was significant memory loss and confusion and sometimes the patients came back subdued and not really themselves.

I’ve had ECT.  *gasp*  Three separate times.  *triple gasp*  I had it back in 1998, then we tried it in November of 2009 (I pulled out of it early because the anxiety that resulted from going off my mood stabilizer (a necessity for ECT) was too much) and then in April/May/June of 2010 (we changed my meds around to avoid the anxiety issue).  There were vast improvements from the ECT in the 60s to the ECT performed in 1998.  And there were improvements between the ECT I went through in 1998 and the ECT of today.

Some myths that need to be dispelled:

You will have a full blown seizure.

Technically, this is true, but not in the way we have come to think of seizure.  They induce a seizure in your brain by passing electricity through it.  They measure the length and severity of the seizure using an EEG, not by how much you are thrashing about on the gurney. They give you a muscle relaxer which prevents the body from going into a grand mal seizure.  They do put a blood pressure cuff around one ankle and prevent that muscle relaxer from reaching your foot so they can observe any adverse negative reactions.  No, your foot is not sore afterward.  No, you do not need to be restrained.  No, you will not get a broken bone–unless in wheeling you back to your room they tip the gurney over and you tumble to the floor.  But that would be unrelated to the ECT.

You are awake and experience Hell.

You are not awake.  They give you this wonderful medicine that puts you to sleep right before the seizure (otherwise known as anesthesia.  I like to call it “happy drug.”).  I like attempting to stay awake as long as possible and talking while they give me the anesthesia until it’s impossible to do anything but drift away.  I think I’m a little weird that way.  And there was no hell.  I went to sleep.  They did their thing.  I woke up back in post-op with a nurse asking me if I wanted pepsi or sprite.  I remember nothing in the interim.  There was one time my doctor told me that I had had a larger seizure than normal for some reason that day, so I might have a headache, but I don’t remember anything being different that day.  I don’t have nightmares about machines with weird faces being wheeled toward me like I did after I saw Return to Oz the first time and didn’t know Dorothy was about to have ECT before she escapes the hospital and runs into the woods.  (Does anyone remember that movie but me?  It was terrifying.)

You will not remember who you are afterward.

So there may be some residual memory loss or confusion.  You will not forget your name.  Unless something went wrong or you have a particularly bad reaction to ECT.  You will still remember how to lift a fork from the plate in front of you into your mouth.  I even remembered Latin, the date, the day, where I was, how to drive a car, what I had for dinner the previous night, and how to get dressed.  Apparently, my friend and I went to IHOP once afterward, which I have no recollection of.  My memory loss is weird like that.  Random events that I don’t remember, events that I wouldn’t probably recall unless someone else was talking about them around me.

You will have a new personality afterward.

Your personality will not change.  Nor will you gain an additional personality to carry along with you throughout the day.  Hopefully, you will begin to experience less depression and that will affect your overall mood and, for a lot of us with depression, how you relate to other people.  If you didn’t like rock music before hand, you most likely will not like rock music after.  Although I’m sure Oliver Sacks has some obscure example that will prove me wrong, but keep in mind that most of his tales are just that–obscure.  That’s why he writes about them and not the 99.99% of us who have ECT and come out of it the same exact person as we were before, just less depressed.

Your hair does not stand up on end.  You will not shock people who touch you.  You will where a hospital gown, and they will stick monitors all over you and they will monitor your blood pressure and heartrate the entire time.  You will have an IV for a sedative, muscle relaxer and anesthesia and pain medication.  You may have a headache (I only did after the first few sessions).

ECT is now a standard treatment method for depression.  There are different types of ECT (unilateral, bilateral, bifrontal) and each have varying degrees of side-effects and efficacy and are better suited for different populations.  It is the only thing that works for me when the depression reaches a certain point, and it is the only thing that has ever been able to pull me out of a suicidal depression.  It is not a cure all.  You will still have the normal ups and downs you always have, and you will most likely still have some depression.  The ECT will hopefully get you to a point where the medication is able to start working again.  It pulls you out of the worst–hell–and gets you to a better but still bad place–purgatory.  And there’s always a chance for redemption when you’re in purgatory.  Not so much when you’re in hell.

Would I have it again? Absolutely.  In fact, because I am bipolar, type I, I am not looking at something that will take away my Bipolar disorder.  It’s there.  It’s sticking.  Much like peanut butter on the roof of your mouth.  I will get depressed again.  Hopefully, we’ll be able to catch things in time for the medication to work.  That may not happen.  I may hit another hellish depressive episode at some point and will need something to reach down and wrap around me and drag me back up.  That thing will most likely be ECT.

Of course, they may come up with another treatment.  Doctors like to do this thing called research, which is why when I had ECT I didn’t thrash around and break any bones and suddenly decide broccoli is evil.  Broccoli is cute and tastes good and your body likes it.  Eat more broccoli.

August 21, 2010 Posted by | bipolar disorder, depression, health, therapy | , , , , , , , , , , , , | 7 Comments