More medication changes?

I saw my psychiatrist today and I obviously had to update her on the latest developments about my health. So from there we started talking about what this all means in terms of my mood and sleep. I haven’t been sleeping well since those steroid infusions, but I’m confident my sleep will be back to usual patterns as soon as the steroids wear off, which, according to my neurologist (and my weird nights) hasn’t happened yet. So for now I’m going to keep taking trazodone at night.

Now for my morning pill. I’ve been taking escitalopram for some time and I’m quite happy with it. In fact, about a year ago, when I felt better and more stable and suggested my psychiatrist should take me off of it and see what happens, what happened was I stopped sleeping again. Escitalopram, being an antidepressant designed to treat anxiety as well, has been doing wonders for my insomnia, which has a lot to do with anxiety.

However, I haven’t been feeling anxious lately. At all. Instead, I’ve been dealing with everything by hiding from the rest of the world, feeling demotivated and generally more sad. So she thinks it might be a good idea to try something more uplifting, as in fluoxetine. That is, Prozac. Oh dear. 😦

Instances health care professionals were less than professional – and less than caring

September 2012

Having struggled with anxiety all my life, in September of 2012 I started suffering from what seemed like mild panic attacks. I had been diagnosed with MS nine months before and found out that Avonex not only wasn’t doing anything to prevent disease progression but it was also messing up my liver and thyroid. Plus, due to bureaucracies I had to wait before being able to move to another drug. My chest had begun to hurt, right where my heart is supposed to be, and when it hurt really bad I had trouble breathing. It even got to the point I wondered if I had heart problems. So I went to see my psychiatrist.

Now, I’m fairly open to taking suggestions and trying new things if that means there’s hope my symptoms will improve. But my psychiatrist just went: “I’m not going to prescribe you anything. You see, what you learn from a disease like MS is that you don’t really control anything in your life, so you shouldn’t worry so much.”

So I just spent 70 euros on “expert” advice that I could have heard from my mom, dad, boyfriend and closest friends… for free? Thanks, doc. What’s next? Telling me to smoke some weed?

I never saw him again. Found myself a new psychiatrist who listens and cares. She prescribed me Escitalopram and my chest never hurt again.

November 2012

My mother suggested I saw an acupuncturist so off I went. I kept telling him about my fatigue, blurred vision and trouble sleeping but he didn’t seem to listen because all he wanted to treat was my legs, despite the fact that I stressed I had never had mobility issues. But that wasn’t the worst. One day, as I was telling him about my symptoms and some of my fears, he said there were a lot more complicated situations out there, and went on talking about the work he did with children with cancer.

Dear Mr Acupuncturist,

I’m not a total moron and I’m perfectly aware there is a lot of misery and suffering out there, and things that just don’t make sense and are just not fair. But since I hired you to see if there was anything you could do for me, can you at least for these sixty minutes focus on me? Then we can both go on worrying about people who are suffering more than me. I can even buy a “suffering meter” to see who qualifies.

And as if this wasn’t enough, I noticed my mother somehow knew about things I had never told her but had mentioned to him. Have you ever heard of confidentiality, Mr Acupuncturist? Privacy, maybe? Trust? I can’t even…

April 2013

I went to see another neurologist to hear yet another opinion about all MS drugs available, their risks and benefits. As we were discussing second-line treatments, which heavily suppress many functions of your immune system, he said something as unbelievable as, “You needn’t worry about catching something like, let’s say, AIDS, ’cause you’re not gay.”

Dear universe, did I travel back in time and I’m in the 80s again? Am I speaking to a doctor or a religious fundamentalist? Should this person be practicing medicine? I’m puzzled.

September 2013

I found out I have endometriosis. My gynecologist said, “We’re gonna need to operate as soon as possible. I’m going to schedule all the pre-op exams.”

I wasn’t happy about undergoing surgery, so I went for a second opinion. Doctor said “I’m not going to operate a 30 year-old who’s never had children and who has another condition like MS without at least trying some medication first.”

Bless you, doctor. Medication is working, my cyst is almost invisible now and my ovaries are still intact. You’ll always be my gynecologist.

April 2014

I have a new primary care physician. I went to see her, tell her about my conditions and what generally life is like for me. That’s when she says, “A lot of people with MS are able to do pretty much everything in their lives, why can’t you?”

If ignorance were music, you’d be the national orchestra, doc.

Depression is a disease of loneliness

I already shared this article on Twitter but I thought I’d share it here too.

It’s by Andrew Solomon, whose TED Talk swept me away some months ago, and I must confess I feel a little guilty because I haven’t yet started reading his book on depression, The Noonday Demon. I was delighted to find his new article on The Guardian though. As with his TED Talk, the words are vivid, fluid and meaningful, and he addresses many of my feelings, concerns and thoughts about depression.

Here are few:

“In an era in which Facebook has made “friend” into a verb, we often confuse the ambient intimacy of websites with the authentic intimacy that comes with sharing your life’s challenges with someone who cares – who will be sad because you are sad, happy because you feel joy, worried if you are unwell, reassuring if you are hopeless.”

“[…] but not treating the depressed is ultimately more expensive than treating them. People who cannot function end up on the dole; parents may not be able to take care of their children; men and women too depressed to sustain their physical health could develop serious conditions that cost the NHS a great deal.”

“Depression is a disease of loneliness. Many untreated depressives lack friends because it saps the vitality that friendship requires and immures its victims in an impenetrable sheath, making it hard for them to speak or hear words of comfort. […] Love – both expressed and received – is helpful, not because it ameliorates the symptoms of depression (it does not), but because it gives people evidence that life may be worth living if they can only get better. It gives them a place to admit to their illness, and admitting it is the first step toward resolving it.”

“Many people, however, are desperate for love, but don’t know how to go about finding it, disabled by depression’s tidal pull toward seclusion. Loneliness will not be fixed by medication, though pills may instigate the stability to open up to friendship’s liabilities: potential rejection, exhausting demands, the need for self-sacrifice.”

Full article here:

What the Therapist Thinks About You

Have you ever wondered what your doctor or your therapist writes about you? And would you want to read it? I certainly have thought about it, though I’m not sure I would want to know. Probably my low self-esteem, my insecurities, and my lack of trust fear that my therapist is writing nasty things about me while telling me the opposite. Or maybe knowing my behavior patterns have names, some of them weird and scary, carries with it a sense of stigma I surely don’t want to feel. Besides, names make things sound definite, like you won’t be able to change them. On the other hand, maybe reading my therapist’s notes could give me a sense of progress, more structure, and possibly even a boost to my self-esteem. I don’t know.

Last night I saw on Twitter this New York Times article that debates the pros and cons of sharing physicians and therapists notes with patients. There are some very interesting points made there. For instance, one woman with multiple sclerosis “finds that her medical and mental health notes complement each other.” I also found interesting how some therapists are increasingly using the internet to connect and help their patients. Makes it look like a true team effort, and not like we’re people who cease to exist as soon as we leave the office.

What about you? Would you want to know?

Are you gonna kill me in my sleep?

Mental illness runs in the family. My grandmother had schizophrenia and so did one of my uncles. I have another uncle who is an alcoholic and has also been diagnosed with bipolar disorder. My older uncle has suffered from depression and my mother is chronically depressed, one of the reasons being she was the one who took care of all the people mentioned, while no one really took care of her. She remembers quite nasty stuff from her early years, including being kicked out of the house by my grandmother, who failed to recognize her and called her all kinds of names for everyone to hear, and picking up my bipolar uncle from jail whenever alcohol and mania got him into trouble. As for my schizophrenic uncle, he died young and he’s kind of the taboo in the family. When he was called to go to war in Africa in the 1960s, everyone begged my grandfather, who held a relatively high position in the military, to manipulate things in order to have him doing some clerk work instead of going to the battle front, because they knew he was mentally ill. But no, my grandfather’s sons had to be real men and fight the war. That obviously didn’t turn out very well. My uncle came back in a catatonic state and died shortly after. My grandfather passed away at 88 and all those years he lived he was never forgiven by my mother and surviving uncles.

As for the new generation… well, let’s say I take after the neurotic side of the family, and my sister takes after the psychotic one. We’ve been estranged for more than a decade now, ever since she snapped/lost it/whatever and held a knife against my chest when I was 20 (she was 24). My parents pretended nothing happened because… well, just because, and I decided I didn’t want someone like her near me. Two years later, on an occasion we were both with my mother, my mother said something about me, and my sister yelled she wanted to see me dead (words that my brain was kind enough to remind me of when my neurologist uttered the words “multiple sclerosis” – and before I knew no one dies of multiple sclerosis, but still).

I understand, I’m the bad guy. I was born and a couple of months later my grandmother passed away and two years later my parents got divorced. For my sister’s 5-year-old brain, not only did I take from her all the protagonism, but I also drove daddy away. So I was bad news and someone to hate for as long as she lives. You can imagine therefore how I’ve been feeling about her wanting to take me on summer holidays with her.

Now, don’t be fooled. She isn’t trying to make things up. She has been dumped by her boyfriend (you can imagine she is a difficult person to live with), so she’s feeling lonely and doesn’t know what to do with her free time. She has been calling and e-mailing me, asking me if I know where I want to stay, and my anxiety levels have been soaring. Not only I’m the kind of person who finds it hard to say no to people, but she can also be very persuasive and manipulative (which she got from my father’s side of the family).

But really, the only thing I can think of is whether she’s actually planning to kill me in my sleep.

Stigma is a product of judgment

From the website:

How To Touch A Hot Stove is a short documentary, narrated by actor John Turturro (Transformers, The Big Lebowski), which seeks to alter the way that people think about mental health. The film is a short documentary that considers the complex variations in human experience and differences in thinking, feeling, and perception. It identifies the new civil rights movement that has emerged to combat the marginalization of those with “mental disorders,” explores why that movement is more complex than other civil rights movements, and reveals the often disparate perspectives held both by professionals and those with lived experience — as it challenges audiences to go “beyond the movement” and make a difference.

Featuring Appearances by: Temple Grandin, Patch Adams, Dr. Oliver Sacks, Nobel Prize Laureate Dr. Eric Kandel, former First Lady Rosalynn Carter, Susanna Kaysen (Girl, Interrupted), Joanne Greenburg (I Never Promised You a Rose Garden), and others provide key insight. The collaboration of Dr. Anne Harrington, Professor of the History of Science at Harvard University, provides a compelling backdrop of the history of stigma.

Created by Lois Oppenheim, Ph.D., Alice Maher, M.D.
Directed by Sheryll Franko
Produced by Hot Stove Productions in association with Falling Awake Productions

Aggression turned inward

As someone who comes from a family with a history of mental illnesses and who has suffered from depression as well, I have read a lot of books, articles, and testimonies, not only in the first person but also from doctors and therapists. However, none had me nodding from beginning to end as this TED Talk by Andrew Solomon. The first ten minutes are particularly so accurate in giving us a panoramic view of all the different aspects of depression. I resonated with what he said about finding there were people who seemed on the surface to have what sounded like relatively mild depression who were nonetheless utterly disabled by it.” And he echoed as well many interrogations I’ve been struggling with: “if I have to take medication, is that medication making me more fully myself, or is it making me someone else? And how do I feel about it if it’s making me someone else?”

I didn’t know who Andrew Solomon was before watching this TED Talk by chance, but I did a little research and found out that the book he wrote on depression, called The Noonday Demon: An Atlas of Depression, won several awards, including the Books for a Better Life Award from the National Multiple Sclerosis Society. I haven’t read it yet but I already have it here with me. I hope it’s as poetic and insightful as this talk.

Naming things

Yesterday I met my new therapist. My old one is moving to another country, so she trusted my files with someone whose work she’s known for a long time.

We started talking, and for the first time I heard the story of my life being given specific and scary names. She said I had a lot of symptoms of post-traumatic stress, and that a lot of events in my life could be considered traumatic. I always thought post-traumatic stress was something only people who had survived war, natural disasters, physical or sexual abuse would experience. Turns out the definition of trauma is anything that threatens one’s survival, and that can include for instance the loss of a close relative in the early years of a young child, especially if the child doesn’t have a secure attachment to the parents and doesn’t have the emotional language to cope with it. That being said, my life has a series of minor traumas and at least three events that, if not considered major, are at least traumas written in bold. The fact that I’m a hypervigilant and have had trouble sleeping since my teenage years is nothing but a consequence.

Then I learned that I had at least two dissociative episodes in my life. One when I was 5 and had to be hospitalized because my legs went numb and I couldn’t feel them or move them, and the other after I turned 20 and suffered an episode of transient global amnesia and failed to remember stressful events in my then recent past. Even my recent state of daydreaming (see previous post) is a form, though mild, of dissociation. To me, “dissociation” and “dissociative” are scary words, so I felt apprehensive when I heard her saying that.

I also felt that returning to therapy after a little hiatus brought back all the resentment, anger, and fear I carry with me and that have been anesthetized through daydreaming and being on a break from therapy.

Overall, I feel like a car when you step on the accelerator with the hand brake pulled up. The engine roars and the rotations in the rev counter go up — and that’s my survival instinct, all ready to go and fight and scream… But the car isn’t really going anywhere, is it?