Tuesday, January 28, 2014

The Gift

Here’s to the Crazy Ones YouTube Video:
http://youtu.be/8rwsuXHA7RA

Over Christmas I came up with the idea of making a typographic poster for my oldest son of the “Here’s to the Crazy Ones” quote by Steve Jobs. I know my son loved the quote and is a big Steve Job’s fan, but I had no idea just how much he identified with it. Flash forward to Christmas morning when I casually handed my son the wrapped gift, telling him it was a little something I made for him. What happened next caught us all by surprise. I watched as he curiously tore away the paper, stopping just as the first few lines of the quote was revealed, then he slumped down and held his face as he started to sob.

For a moment we all were stunned, then we saw his smile through tears. He loved it. He really, really loved it. For whatever reason, this gift spoke to his heart. As he sobbed tears of joy, I grabbed him and hugged him with tears of my own, followed by my middle son who himself was overcome with tears.

Later Christmas morning, as he proudly carried his framed poster up to his room, he told me, “This is my favorite Christmas gift!”

I hope to never forget this precious moment.

* * *

Here is the famous quote:
“Here’s to the crazy ones. 
The misfits. The rebels. The troublemakers.
The round pegs in the square holes. 
The ones who see things differently.
They’re not fond of rules. And they have no respect for the status quo.
You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. 
Because they change things. They push the human race forward. 
And while some may see them as the crazy ones, we see genius.
Because the people who are crazy enough to think they can change the world, are the ones who do.”
—Steve Jobs
* * *

Check back soon for when I share a special adventure inspired by this gift…


Wednesday, January 22, 2014

Interviewing Mama Bear



Today I got an email asking me some good questions and I thought it would be a perfect post since many of you have started reading this blog long after I started writing it. I’ll answers the questions below and if you have more, leave them in the comment section below and I’ll try to answer them.

I know this is a long post, so if you’re short on time and you’re already familiar with my story, skip to the last question where I share a very positive update about my oldest son you won’t want to miss!

* * *

I’m new to your blog and I’ve been reading past entries to “catch up”. I now have a few questions:

1. When did you first start seeing symptoms (what age was your son)?
I specifically recall a dramatic difference in my oldest son’s behavior when he was 7 years old. Prior to that, I do recall that he was “strong willed”. He also had separation anxiety as a baby and as he got older he started to experience night terrors. I also remember that he didn’t like the children’s reading time at the library. I thought this was unusual since all the other kids were glued to the storyteller and my son seemed disinterested and didn’t want to participate. We saw the same thing at birthday parties, they made him miserable. Looking back, this may have been the early signs of anxiety and sensory issues—crowds and social situations were too much for him. He also was sensitive to sounds and food textures. I remember in kindergarten when he fought doing his homework. He also didn’t want to perform any of the school performances, instead of singing with the other kids he would just stand there refusing to participate. As the school year came to a close, I recall a strange incident at a friend’s house when it was time to pick up the toys. At one point my son was hiding under a table, screaming and I couldn’t get him to come out. He had an odd, impulsive energy about him. I remember thinking, “What is going on with him?”

By the time he was in first grade, the teacher started reporting that he was putting his head down in class, refusing to participate and covering his head with his hood. She said that during circle time he would isolate himself from the other kids. We also heard him saying things like, “this is the worst day ever”, “I have no friends” or “I should just cut my head off”. This may have been the first time we started to see depression. It was during this year that we started to see rages at home over homework for the first time. He would become explosive, irrational and very angry over the smallest things. I remember a moment when I looked around the house and saw furniture tipped over, and my son was on the countertops in my kitchen acting like a wild person after hitting and biting me during a 3 hour rage. I knew then that this was serious. I remember that the behavior seemed so out of line with my son’s previous behaviors that I even started to question if my son was being molested at school (he was going to a new school). It was the only place where he was out of my sight and what I was seeing was so dramatically different. My investigation lead to nothing, but the rages continued.

What I started to see was Dr. Jekyll and Mr. Hyde. At times we would see our loving, sweet boy who wanted to please his parents and at other times his smile disappeared, his personality twisted into one that was very mean, hurtful, destructive and violent. It got to the point where we could tell by the look on his face and the tone of his voice who we were dealing with. We were definitely walking on egg shells.

Then over the summer, while on a family vacation with relatives, my son went into a rage in front of everyone. At one point we had him in a room behind a closed door and he was screaming that he wanted to kill everyone. Everyone could hear the screams and violent bangs against the door. After the rage, I clearly remember my son staring out the window and quietly saying, “I’m God’s mistake, I wish I was dead, I should never have been born.” When I came out of the room with him, I remember my mother-in-law comforting me and giving us feedback that what she saw was not normal kid behavior and she encouraged us to take the first step in seeking professional help.

I thought at this point it would be helpful to share that my son also recognized these changes in himself. 

The night before I approached my son’s doctor about trying the recommended medicine, I had a heart-to-heart talk with my son about what he thought about the whole situation and what he wanted to do about it. This is what he said:

“I’m a tornado, destroying everything and you two (his parents) are two large mountains that I’m trying to break through.”

When I asked him what he wanted to do about it, he said:

“I want the doctor to give me medicine so I don’t do bad things and act out. I want them to make my ‘bad side’ go to sleep so my ‘good side’ wakes up first.”

Prior to this discussion I remember very clearly a moment when my son was watching a home video of himself when he was younger. He said that it made him sad to see the old home video since “I was so happy back then”, unlike now.

His little brother’s response to the video was “Ah, that was when my brother use to be nice”.

Then one day, after running out of the house when he was in a rage, I found him sitting in the middle of the street. When I asked what he was doing, my 8 year old son said “I’m waiting for a car to run me over so I can die”. As I brought my son in that day, I held him in my arms as he calmly cried out to me, saying that he didn’t feel right inside and that something was wrong with him and that he needed the doctor to fix him. He described himself as having two brains. He said that he had a good side and a bad side and that the bad side takes over and make him do bad stuff.


2. What is the longest period of time that a medication has “worked” for your son?
I’m thankful to share that we’re currently in that time. Ever since my son started Lithium in July 2011, we’ve all seen a dramatic improvement. Only 12 days in on the new medication my son said, “I feel born again.” He started smiling and talking more, even wanted to plan playdates (which was huge since he was isolating himself prior). He said that he was feeling happiness for the first time. After the start of Lithium he went 57 days straight without a rage. This was a record back then, with rages being almost daily, if not several a day. Looking back, I will say that when he does rage, it feels different now. There is a different quality about it, it’s better. Today rages are so rare. I have to go months back in my charts to find one. I also see that they are clearly triggered by stress and his inability to manage stress. Lately, our modification plan has put an end to his rages. Just this weekend, he shared that he wanted to throw something, but chose to go for a bike ride instead to release his anger in a better way. Looking back, I can see how his rages had became a habit, the body’s programmed response to anger and stress, scientifically it has to do with neural pathways in the brain. Retraining the brain takes time and thankfully we’re headed in the right direction. 

(This is why I’m an advocate for early intervention. The sooner the child becomes stable, the quicker the neural pathways are addressed. Thus minimizing habitual behaviors in the future—old habits are hard to break!)


3. How many different meds has he been on?
He started on Tenex. Once his rages increased and he was diagnosed with a mood disorder, they added Seroquel. It was a major failure, making him suicidal and very depressed. We quit after a month and then added Trileptal, a mood stabilizer. We saw success, but over time he needed more stability. The doctor then added Depakote, which he quit after one dose since he had an allergic reaction. We then tried Lamictal, but his arm would feel numb, so we quit after a week. Then the doctor tried Lithium. It was a success and continues to be. My son also takes Melatonin at night to help with the horrific nightmares. Currently he takes: Tenex (helps with his impulses), Trileptal (helps with his Anxiety), Lithium (mood stabilizer) and melatonin for sleep. I never imagined that my child would be on medication, but ask him if it makes a difference, his response is, “You’ll have to kill me to take away my Lithium!” 

Just reading through my old notes to make this post reminds me of how much better my son is thanks to medication. 
(Please don’t use as medical advice, seek professional direction from a Psychiatrist.)

4. What books or resources have been the most helpful for you?
Two resources that are a must read are Raise Winning Kids without a Fight by Dr. William Hughes (Behavior modification plan for difficult-to-raise kids. It’s made a huge difference in our home.) Also, Magic 1,2,3. I’m always reading, I can go on and on about resources, hmm… maybe a future post...

5. Is there a light at the end of the tunnel? I know you can’t cure this, but have you seen consistent improvement in your son’s symptoms?
YES!!!! That’s one of my favorite things about my blog. My post are getting boring, well, because things ARE getting so much better. I really feel that most days I’m out of the trenches. Not only have the medications made a tremendous difference, but we’ve learned so many skills, my son included, that we didn’t have in the beginning. Also, my son is maturing and this is helping. It doesn’t mean that he doesn’t have a bad day or that he’s not sensitive to the world, but rather he’s better able to manage his illness than when he was younger.

I’m so incredibly proud of my son. He continues to work on his challenges and he always gets back up after going through a difficult episode. His resilience is mind blowing! Today he’s better at communicating, being social, having self control, controlling his anger, not raging, doing therapy techniques, maintaining boundaries that keep him healthy, knowing his limits, experiencing joy, love and fulfillment.

Before I finish, I wanted to share a small example that speaks volumes. If anyone has followed this blog for sometime, you’d know that we’ve had major battles in getting my son’s blood drawn. In one episode I recall where my husband was kicked in the head the entire time while driving my son to the hospital. He was seriously concerned that they were going to get into a car accident along the way. While at the hospital, my husband had to restrain my son while they drew his blood. By the time my husband came back, his arms were covered with bruises and scratches from my son viciously fighting back. Well this week, for the very first time, my son walked into the injection station, while I stayed in the waiting room and he had his blood drawn all by himself, at his own will!

Now that my friends, is miraculous improvement. 

And we’ve only just begun.

* * *

If you have more questions, leave them in the comment section below, you can also email me at mysonhas2brains@gmail.com

Sunday, January 19, 2014

Of Two Minds Documentary



Of Two Minds—The Film
(Sorry no link, visit my blog to watch the trailer.)

I’ve had my eye on this movie for some time, but hadn’t seen it yet when I discovered that the film is now available for streaming on NetFlix. So of course I immediately watched it.

This award winning film focuses on the lives of adults living with bipolar disorder. It gives an honest, emotional picture of what the experience is like and the impact the illness can have on the individual and those that love them. I highly recommend it for anyone wanting to understand bipolar disorder or for those who feel alone in their own expereince.

Official Website:
http://www.oftwomindsmovie.com




Wednesday, January 15, 2014

Meet Brenda—Mother of a Daughter with Bipolar Disorder

Today I’m sharing the second half of my daughter/mother interview. If you missed the first interview with San, a daughter living with bipolar disorder, please check it out first.

* * *

Welcome Brenda, please share a little about yourself:
I’m a 56 year old female. I work in the I.T. Dept. of a Horticultural business. I’ve been employed most of my life, taking 11 years off to raise my children. I enjoy crafts, renovating, creating things where I have an end product. I enjoy learning new things.

When did you find out about your daughter’s diagnosis?
Early teens—around 13 or 14 years of age

What was this experience like for you?
Frustrating—when you don’t fully understand what they are experiencing you become frustrated because you can’t seem to help them and yet you don’t understand why they do the things they do.

You mention “them” in your response. Are you close to anyone else who has a mental illness?
Yes, I’ve been around it a good majority of my life. It can be very difficult at times – it seems one person is having a good day and the other isn’t. At times you feel like it’s endless.

Is it harder loving more than one person with a mental illness or does it make it easier since you have expereince?
It’s not harder – both are individuals with different needs and different illnesses. Luckily my daughter was aware of the illness and sought help. That wasn’t the case with my husband. It was many years before he’d admit that he had a problem and seek help. I don’t think his problem was as severe but at times it was hard to handle. He did work at a good job his entire life and supported us – we never really wanted for anything. Just the mood swings at times. You learn not to argue. I would refuse to argue – I would leave the room or remain silent. I didn’t want to go through my life fighting and arguing. That seemed to change things over the years. Medication seems to keep him level so as long as he takes it, things run smoothly.

Did your daughter’s diagnosis surprise you?
Somewhat—I knew she was experiencing problems but not to the degree that the doctors diagnosed

What was your daughter like as a child?
Very demanding—she was born prematurely and required a lot of extra care and attention from day 1. I’m not sure if this had anything to do with the problems that she experiences today.

Did you see any symptoms when she was a child or teen?
I saw the problems as a teen—she required a lot of attention as a child but I didn’t see them as symptoms.

Did you see the illness develop as she grew into adulthood?
Yes, I was hoping that maturity would lessen the symptoms, but that isn’t the case.

What were the first symptoms you saw?
Depression, falling grades at school, becoming anti-social, changing the types of friends she hung around.

What are the symptoms you see today?
Unable to cope with stress and mood swings.

What is this experience like for you?
Frustrating—I don’t understand the illness maybe the way I should and I often times feel that she’s not trying as hard as she can to be functional.

What was it like for you when your daughter was hospitalized for the first time?
The first time was scary having to go into the “mental health” unit of the hospital not knowing what I’d encounter. Basically it was just a lot of people with similar problems. Sometimes she’d want us there, sometimes she didn’t. The doctors recommended that we not stay if she didn’t want to see us that day.

Were you involved in her being hospitalized?
On one occasion—not on all of them.

What did you do to help get her admitted?
We just pushed the doctors for a referral to a larger treatment center.

Why did you take this step? What did you see in your daughter that you thought required this treatment?
We felt that she needed to have the diagnosis re-evaluated and medication adjusted. She was extremely over medicated and didn’t know where she was half the time. It was time for a second opinion.

Did taking this step scare you?
No, it was almost a relief when we finally had her admitted–it was hope.

How did you cope during her stay?
I spoke to her as often as I could and we would go and visit a couple times a week. I was working full time and with the hospital being out of town, we couldn’t visit every day. I don’t think she wanted us there all the time anyways.

What did you think about this expereince after she was released?
It seemed to help for awhile—then the medication was slowly changed over time.

Your daughter shared with us that she had ECT. What was this experience like for you?
The thought of it was very scary. I made her call me as soon as she returned from the hospital. I think it was mainly from the fact that I didn’t know much about it and didn’t truly understand how it worked.

What did you think of the results?
It seems to have helped. There are still days with ups and downs, but overall things seem better.

What do you think helps your daughter stay stable?
She enjoys doing crafts—that helps relieve stress. Trying to keep stress levels low and being available when she needs you.

How has this illness affected your relationship with your daughter?
I feel we have a good relationship. I try to be a “friend” when she needs one and a “mother” when she needs a mother. I’m just sad to see that a lot of her dreams aren’t being fulfilled. I always hope that one day she will reach for the stars and give it all she’s got to fill some of those dreams—am I being unrealistic—I hope not.

How do you cope with everything?
Fortunately I’m not someone who gets stressed out easily. I cope by trying to help out when I can.

What scares you the most about your daughter's illness?
I worry about the day that I will no longer be capable of helping her out—I need to see that she can survive without me in her life.

Being that your child is an adult, in what ways are you able to support her and help her?
I try to be available if she needs to talk or needs a shoulder to cry on—I also help her out financially when she needs it.

What challenges do you face in helping your adult daughter?
I become frustrated sometimes thinking that she should be able to find a job, go to work, and have all the things she dreamed of when she was younger. I’ve tried the supportive role, the “tough love” role with no change in the end result.

Can you share any mistakes you may have made?
I should have laid down more ground rules right from the beginning. Made her be responsible for herself at a much younger age. Whether it would have helped or not, I’m not sure.

Can you share any victories?
She did graduate from college. She is also living independently.

What have you learned through this expereince?
Society needs to view mental illness differently and take it more seriously. The help for anyone with mental illness is hard to find. They need more programs to teach people with mental illness how to become productive in society and live a relatively normal life. The doctors also over prescribe medication. That seems to be their answer.

What advice would you give other parents who are facing the same journey with their own children?
Do what you can to find help for your child. Be supportive but also lay down ground rules. People with mental illness can be demanding and manipulative. You need to figure out the fine line between helping and being taken advantage of.

* * *

Thank you so much Brenda for sharing your experience with us. I appreciate your honesty and the wisdom you have to share with us.


Sunday, January 12, 2014

Meet San—Daughter with Bipolar Disorder

Today I’m really excited to share a special daughter/mother interview with you. The first interview will be with San, a daughter living with bipolar disorder and my second interview—posting later this week—will be with San’s mom. I thought this would present a unique perspective of one family’s journey, I hope you enjoy it.

* * *

Welcome San to my blog, please share with my readers a little about yourself:
Hi, my name is San. I'm a 29 year old female from Ontario, Canada and I've graduated (class of 2012!) with a degree in Computer Engineering, and I currently do web design and web programming work on contract, and also for fun.

For hobbies, I'm an avid horseback rider and I've been doing that since I was 11, competitively and for fun. I've had a few injuries along the way, so lately, it's just for fun. I ride English and do hunter and jumper. I “work” at the barn I ride at in exchange for riding and we have a blast. I advocate horse therapy and have volunteered with programs in the past, again, we always had a great time.

I also love crafts. I loom knit, sew (I recently learned quilting), cross stitch (not your grandma's cross stitch, either) but lately, as it's winter here, I've been mostly knitting. It's calming and it's enjoyable. I'm a big geek and I enjoy reading (non-fiction) and spend a lot of time on the computer.

What is your diagnosis?
Bipolar disorder type 1 with rapid cycling and psychosis. Schizotypal personality disorder. ADHD, inattentive type. I'm considered treatment resistant. Some say I have the “schizotypal” but not the “personality disorder”. I think that's a compliment? Personality disorder patients are often treated poorly. It's sad.

What are your symptoms?
Severe depression (at times), severe mania (at times), so your typical bipolar high's and low's. Severe anxiety. Psychosis including auditory and visual hallucinations and paranoid delusions. Inability to concentrate. Anger outbursts. Severe reactions to stress, putting me into mixed episodes, which consist of the racing thoughts of mania, but the negativity of depression. This is, of course, without the right meds, or any at all. Controlled with medications, the symptoms are less, or none. All the time, though, I'm a bit paranoid in social situations, anxious in social situations, but I was bullied as a child.

At what age were you diagnosed?
At 14, I was first medicated for depression, and diagnosed with depression, at 17 I was diagnosed by a psychiatrist with bipolar disorder and later borderline personality disorder because of an overdose suicide attempt. I was diagnosed with bipolar disorder by every psychiatrist I've seen.

What age did symptoms first appear and what were those early symptoms?
Early in life. I've always been low on the pecking list, and was bullied as a child. I remember in grade 4, when I was 10, they did an IQ test, and wanted to skip me a grade, but didn't, because they didn't want to “screw me up anymore socially”. I don't know how that would be possible! I always had anger problems, I was always anxious and moody. The paranoia was built in, automatic reflex from kids making fun and beating me up daily, the school doing nothing about it, even when my parents complained.

Do you take medication to treat your disorder?
Yes, I take Topamax (150mg, still going up, as a primary mood stabilizer), Haldol (5mg, for psychosis), Artane (5mg, for Haldol side effects), clonazepam (1.5mg total daily, for anxiety), Lexapro (known as Cipralex in Canada, 40mg daily for obsessive thoughts and depression) and Ritalin (20mg daily, for inattention)

Do your meds work?
It's taken a LONG time to get to this combo, but knock on wood, yes. My psychiatrist pushes that meds aren't the only part to treatment, that involvement in the community is essential, and groups, therapy, etc, are important. I have a YMCA membership, I'm involved with horses, and I do my web design work. At the moment, he doesn't want me working an actual job.

Do you experience side effects from the meds?
Fortunately, not as severely as from some others. I have tingling in my hands and feet once in a while from the Topamax, a lot of weight loss from the Topamax, decreased appetite and pop (soda) and chocolate taste funny (Topamax again) more sedation from the Haldol, decreased sex drive (oh well) from the Lexapro, sometimes anxiety from the Ritalin. Most of the side effects are from the Topamax: But it works.

What symptoms are the most difficult to treat?
Mixed episodes, where you experience mania AND depression together. Hell on earth! Lithium helped it, but I can't take it, it screws up my kidneys. 1/100,000 person thing called “diabetes insipidus”, even though my levels were fine and I kept hydrated. It went away. Psychosis. Atypical antipsychotics, like Geodon, Seroquel, Abilify, their side effects are awful, and they don't control the psychosis, when a relatively low dose of Haldol does. Anxiety can be difficult because you grow tolerant to the benzos, like clonazepam, Xanax, valium, etc.

Have you experienced psychosis? 
Yup.

Could you tell that you were experiencing psychosis during an episode, or only in retrospect
Now I can, but in the past, I wasn't able to.

Does the psychosis scare you?
Yes, because it's something you can't control or think rationally through, like with a negative thought. I had an episode in 2006 I have massive memory loss from. My mom can tell you about it: I can't. It was horrible. I scared everyone. I still feel awful about it. I know the “warning signs” now so I get myself to my psychiatrist before it gets full blown. But when you have thoughts and hear things telling you people are after you, you caused this person to die, you caused this persons sickness.. it is scary

Can you share with us what psychosis is like for you?
Sometimes I see things in my peripheral vision, like people that aren't there. That isn't too terribly bad, and if I'm wearing glasses, it's easy to distinguish. Other times its bugs in my main vision, which is kind of scary. Those are visual hallucinations. For auditory, I'll hear people talking about me, whispering my name, if I'm out, and there's even one person around. “She did this, and that, and look at her, she's so ugly, what the hell is wrong with her?”

Sometimes I think people can read my mind, they know everything about me just by looking me in the eye. I can't look people in the eye, even when not psychotic. I have delusions where I feel like I've infected people, like I caused the brain tumour my roommate (ex boyfriend) has and I'll cry that I deserve it, not him, that I poisoned him. That I killed my grandpa by failing a college course and not graduating in 2011. A lot of it is extreme guilt for things I have no control over.

I'll believe people are out to get me, to “take everything I have” (not entirely sure what that means), sort of like a witch hunt. A lot of it is persecution. Very paranoid.

What triggers your psychosis?
Stress, sometimes. Sometimes nothing. Being out in large groups for too long. Being really tired.

What can you do to prevent psychosis?
Med compliance, know when I've had too much, get proper sleep, eat properly be 100% honest with my care team (psychiatrist). I log my moods and episodes and everything.

Have you ever been hospitalized for your illness?
Yes, starting in 2002, and my last hospitalization was October 2013. Fortunately now I have a very kind and patient psychiatrist who has never been angry with me, raised his voice, and he is really good. I like him a lot.

What caused your hospitalization?
Depends on the hospitalization. Generally depression, a suicide attempt earlier on, psychosis once or twice, sometimes I'd voluntarily admit myself before it got to bad, a need for a med change.

The first time it was because I was suicidal and had self injured. My last time, Oct 7-24th, 2013, I was under extreme stress and needed my meds redone. Sort of an oil change. In 2008, it was long term (6 months) for a med change, assessment, and ECT. I've been hospitalized about 15 times, once for 24 hours, once for as long as 6 months.

What was hospitalization like for you?
Scary at first, I've met some good friends, interesting people, and got some good therapy. Sometimes it was useless, sometimes it was traumatic, but for the most part, it helped. My two most recent, October 2013, and 2008, were most helpful. We had groups, and the ECT in 2008 helped a LOT.

Are you glad you were hospitalized?
Yes and no. I wish my illness never got that bad that I needed hospitalization and ECT. I'm glad I was able to get that help. I'm glad I had the support to get stable, get out. After ECT, within a month, I had a job, went back to school, moved out, got a new job, etc. This time I'm taking it easy, as per my psychiatrists suggestions. He saw me at a breaking point when he hospitalized me (it was a two-way agreement, I was doing badly, stressed from a full time job that was supposed to be part time) and he really helped. The hospital had been redone, there were groups, and even a relaxation room with a ball pit!

Have you ever used ECT (electroconvulsive therapy)?
Yes. I did ECT because I was in such a rut no meds helped my depression, the episode wouldn't end. I was 4 hours from home at college, trying MAOI's, everything, nothing worked. I went inpatient, got transferred to a better hospital (I called it a “hotel-pital”) where I gained weight on my own, nobody had to force me (I was anorexic), and started ECT.

What was your experience with ECT?
I had some memory loss, times around it are fuzzy. It was simple, safe. I woke up with a headache, tylenol got rid of it, I was allowed to skip group and sleep all day. My roommates would even bring me snacks and meals! I did 6 sessions: 1 bilateral (both sides of the head), 1 unilateral. The procedure was done under general anaesthetic, so you don't know what happens, there's no pain. Worst part: the IV, and that's not even bad at all. They'd cover you in warm blankets, the nurses would be around to talk, they'd knock you out, you'd wake up, go back to the psychiatric hospital (it was done at the general hospital) and sleep, or relax. I had no pain, very little memory loss, no permanent loss, no loss of long term memory or any memory I had, and huge improvement. Before my first treatment I wrote all my passwords down, but I didn't forget any of them!

Were you scared to try it?
Yes, but I was desperate. In Canada, you cannot be forced into it, 2 psychiatrists had brought it up, a 3rd evaluated me, said I was a good candidate. You can't take benzos (they lower seizure threshold, the point is to have a seizure, muscle relaxants stop the body from seizing, but the brain must) so there is anxiety before the procedure, but the staff was VERY good and it really wasn't bad. Anticipation was the worst part. And there was no pain. I'd rather do that than go to the dentist, and I really like my dentist!

I think my mom was more scared of it than I was: She grew up with One Flew Over the Cuckoo's Nest, when it was dangerous, controversial (it still is), and used as punishment. It is NOT anymore, it's a relatively simple procedure, done with a trained psychiatrist, an anesthesiologist, nurses and the patient is never left alone. You do wake up disoriented, but I could answer the questions: “Where are you, do you know what just happened? Etc..”

Are you happy with the results?
Yes, my highs aren't as high, I haven't had a true depressive episode that wasn't circumstantial since the ECT. It really worked. If I ever got that low again for that long, in a heartbeat, I would do ECT again. I would request it.

What has helped you manage your illness?
Medications, therapy (group and one to one), the Canadian Mental Health Association (CMHA), ECT, my psychiatrists over the years, psychiatrist nurses in the hospital of course.

My mom, she's helped me a lot, when no one else would. She's gone to bat when no one else would, risked her job to help me. I've had friends support me, but not like her.

Reading a lot, people online, the websites patientslikeme.com allows me to track everything.

Without a support system, I'd be nowhere. My mom pushed me to finish college, even though I had failed one class, I went back and got an A+ in it, and just missed graduating with honours by a point of a percentage. I had a great therapist in college, students with disabilities were assigned therapists by last name and I got Gilles (pronounced “Jhille”, with a French accent). He was a hard-ass, wouldn't let me get away with anything, sort of like my mom, but very kind, like my mom, and he helped a lot. We're still in contact. I wish he had a private practice. He helped me with self esteem and anxiety, and pushed when I needed it.

What has your experience been with mental health doctors?
I've had good and bad psychiatrists. My first was reluctant to take me because I was under 18, I was 6 months from my 18th birthday. He fired me after I overdosed. I had been hospitalized by him for the first time in my grade 11 year. (At that time, in Canada, we went up to OAC: Grade 13, to get college credits, but that was abolished later) He was a jerk, and later lost his license. He literally told me to “keep eating pills and drinking charcoal, just don't have me as part of it.” He refused to see me at the hospital the day of the overdose. Made me wait a month before he'd see me, to kick me out.

Next I had Dr. M, an older man. He put up with me until he retired, same with Dr. A. Dr. A. Was kind of a jerk, too. It's hard to switch psychiatrists in Canada. He retired and left me with no one. My GP, who is fantastic, found me my current psychiatrist, Dr. N, who is fantastic. Dr. N is younger, has newer ideas, listens, but will override me, takes me in in crisis, and a lot of people say “he favours you”. Good, if he does! I don't think he does. I feel comfortable with him. He doesn't make decisions without me agreeing. Even when I was hospitalized.

Funny story from my last hospitalization before I stop rambling. I was on a Form. Technically Dr N admitted me, but there were no beds on his unit, so he sent me through the ER, and they put me in as involuntary against his wishes to “speed things up”. He was not impressed, and as soon as he saw me, he gave me privileges and stopped the involuntary order. But the night before, a nurse tried to give me Ritalin at 10pm! I refused it, and she gave me hell! I tried to explain Ritalin is a stimulant, you don't take it before bed!

I signed the AMA (against medical advice), she told me that my doctor would be “very upset”. The next morning I saw Dr. N and he said, “I see you refused a medication last night.” I said “Yes, Ritalin, at 10pm”. He BURST OUT LAUGHING. He said, “Good thing that you caught that!” (I have trouble sleeping as it is!) and wrote orders for them to never give me Ritalin after 2pm. He didn't yell at the nurses, he wasn't that type, the staff wasn't afraid of him, but I never got my Ritalin after 2pm after that!

How has your disorder affected your life?
I was always told growing up I was “going to go somewhere” and I feel like that never happened. I feel like I've disappointed a lot of people and I'll never be anything. I spent my teenage years miserable and never got to be a teen, never got to have a lot of fun college students had – coz I was in the hospital. I learned a lot and grew up fast, but I am pretty immature. I learned a lot about people, too, good and bad.

How has your disorder enhanced your life?
I can write a lot.. I'm more creative. People say meds take their creativity. I don't think that at all. I've got the connection with my mom. I know a lot about bipolar and meds. I don't know if it has...

What advice can you share with parents who are currently raising kids who have a mental illness?
Just stay by them. Don't give up. Ever. They may need you longer and more frequently than a non-mentally ill child, but they're your child, don't give up on them.

* * *

Thank you so much San for sharing your story with us. Check out my next post when San’s mom shares her experience in Part 2 of my daughter/mother interview.

You can visit San's blog here:
http://abnormalbabble.com/brainsick

Wednesday, January 8, 2014

Putting the Pieces Together

Tonight was a little rough, but nothing like the challenges we’ve seen before. I’m pleased to share that our new plan of removing our oldest son’s bed—along with the electronics and front seat for a week—for any threatening or hurtful behavior has been very effective in keeping our son on track.

Tonight he was becoming stressed over homework and in a rare moment, he went for a bike ride to let off his steam so he could remain under control—all his own doing! If you recall weeks ago, I had to lock him outside as he raged after a failed attempt to get him to “go for a walk”. I was so proud of him for using these coping skills.

After the bike ride he was able to go back to his assignment. As the evening progressed, and the homework overwhelmed him, his stress increased. By dinner he was acting strange, refusing to eat (because he hates most foods we prepare), sitting with his shirt pulled over his head and doing repetitive gestures with his hands, my husband described it as stemming. At one point he disappeared under the table and was essentially hiding from us. Which seemed odd for a 13 year old. Soon after, he declared he wasn’t going to eat so he went to bed early.

And just like that, he went to bed, only scolded once for trying to mess with his brothers. There was no rage, no threatening behavior. He was able to maintain control, though acting odd, he had self control. I imagine it’s similar to the behavior the teachers see in class when he tries to “keep it together” when under stress at school. I have to say, I’m impressed—this is huge progress!

What’s interesting is that over the years we’ve implemented big consequences and they weren’t effective. I don’t think I’ll ever forget the time where after warnings, I threw out a new birthday gift because he was repetitively messing with his brother’s stuff. I remember it have absolutely no impact on his behavior, all it did was make me feel crummy. When he was younger, I tried spanking. It was an epic fail when he responded by spitting in my face and telling me to “Do it again!”

Raising a child with a mood disorder is like trying to put a puzzle together without having all the pieces. For years I followed the advice of parents in my playgroups or in my church and what seemed to work for them was a joke in our home. Our pieces never seemed to fit together. I’m sure that some people may think... “maybe it’s the parents, they’re not consistent, or they don’t follow through.” Though I can assure you that we aren’t perfect, I can say with confidence that we’ve done a lot of things right. I know we’re good parents and this isn’t our fault.

I can recall a profound moment with one of my son’s therapists, when after a year of trying to coach me on how to manage my son’s violent episodes he admitted, “Your son is not my worst case, but he’s on my top 10 list of most difficult children to help—and I’ve been doing this for over thirty years and I even worked in the hospital.” We soon left this therapist after he told us that he was out of ideas to help us.

So after all this time, why now is my son responding to the threat of losing his bed? I think it’s interesting to note that when we introduced the new plan he specifically pointed out the bed, giving no attention to the electronics at stake. He said, “You found my weak spot! I love my bed and I don’t want to lose it!”

So we hit a nerve with the bed, but I believe it’s more than that. I wish I could prescribe whatever this is to other parents so that they could help their own children. But I think it’s a unique combination of the right medication, the right modification plan and the right consequences with a dash of maturity to top it off. Unfortunately what’s right for one child isn’t for another. 

I also realize that we don’t have this figured out just yet. I know from experience that what’s working today, may not work tomorrow. It’s those darn puzzle pieces—so hard to put together.

But with all that in mind. I see some major progress in my son and I know that for the time being, while everything is in sync, he’s learning self control, he’s practicing his coping skills and most importantly, he’s gaining confidence in his own ability to live well with mental illness.

It’s through this realization that I can stop holding my breath and exhale slowly, knowing that we’re going to figure this out. My son can do this. I have faith in him. I have hope for his future.

Sunday, January 5, 2014

A Mama Retreat for You!

It’s the eve before the first day back to school. Tomorrow everything changes, back to school lunches and homework, two things I dread helping with. But the upside is a quiet home while the boys are away at school, anyone else looking forward to this?

I have to admit, I don’t have much to complain about, besides the ordinary fight between brothers and my little one having a problem with screaming, things have been going so good lately, I love it!

Tonight I got an invite to a Mommy Retreat for moms like us, I wanted to share the details in case things haven’t been so sweet in your home and you need a break in the horizon. I hear it’s an amazing conference, check it out!

Here are the details:
The 2014 Happy Mama Conference & Retreat will be held the weekend of July 25 – July 27. We’re giving you what you wanted: beautiful surroundings, delicious food, fun, relaxing activities, more social outlets, and luxury! We found it at the historic, classic Washington Duke Inn in Durham, North Carolina.

2014 Happy Mama Conference and Retreat early bird rates are $185 (through March 15), $200 (through May 15), and then $215 after May 15.The retreat fee includes the entire conference schedule, beverages, lunch and dinner Saturday, and the opportunity to relax, rejuvenate, learn new ways of coping, and hang out with a bunch of moms as over-worked and misunderstood as you.


If you’ve attended this conference before, please share in the comments below!

Wishing you all a smooth transition back to school.