A risk worth taking; a list worth making

Back when I was first diagnosed my dad had what turned out to be a genius idea: to journal about my illness. Every day he wanted me to write down four things: the date, how I was feeling, what meds I took that day, and any side effects I was experiencing. He was determined to figure out what the heck was happening to his little girl, and this little idea was one of the only things he could get me to do which in the end would help in more ways than we knew when I started. After my most recent hospitalization (which was right after we found out I was pregnant with our second child) I had a very hard time bouncing back. It is true that I respond very well to Lithium, but at the time I was adamant about not going back onto Lithium until I was past the first trimester because of the risk of Ebstein's anomaly. In reality, my risk was only about 6% if I had used the Lithium during the first trimester, but I refused. And I am very stubborn. And determined. And I got my way.

But looking back I wish I would have just used the medication which I so desperately need flowing through my bloodstream each and every day. Lithium to me is like insulin is to a diabetic. I know this now.

So instead of using Lithium during the first trimester, my psychiatrist agreed to use Haldol to treat my mania. It is the drug that they inject into my backside when I am hospitalized because I reject all oral medications when I am manic. Lucky me. They would have to use three people to hold me down while the fourth administered the drug. It would start working within fifteen minutes - by that point I'd have been walked back to my room and tucked into bed to sleep and let it work its magic. Once I was discharged from the hospital, I had my oral prescription for Haldol filled and continued on it for a few weeks.

Those weeks were such a huge struggle for me. Mentally I felt as though I could not put my thoughts together in sentences. Simply speaking a basic sentence was so incredibly difficult. I barely went out in public for three weeks because I was so afraid of not being able to hold a basic conversation.

I also had a very hard time writing. I found it hard to journal then, mainly because it was so hard to think let alone use a pen to write down those thoughts on paper. My family blog which was normally filled with descriptive paragraphs of what I had been doing with our son each day, were now filled with just little video clips and some pictures here and there. I felt paralyzed to an extent. It was almost as if I could feel the neurons straining so fiercely to fire off some kind of signal. But the neurons were back-firing. Badly.

The chemicals in my brain were so completely off and I wanted more than anything else to just turn them back on.

My dad had another brilliant idea during this difficult time. He told me one morning when we were talking, to make a list of 10 things I wanted to accomplish that day. They could be as simple as unload the dishwasher, make the bed, fold the laundry, or bake cookies with my little man. This way, I could look back on my day and see all the things I was able to get done. This simple method of goal-setting worked like a charm for me.

I still use this tactic to this day. I love to sit down in the morning and jot down the things that I want to accomplish that day. The weeks that I do it, I feel like I get so much more done around the house. For my family and myself. It's such a great thing to build into your daily routine.

Around week 10 of my pregnancy, fed up from the daily struggle with my malfunctioning brain, I decided to do something about it. I distinctly remember the day I called my high-risk OB-GYN to ask him if I could just go back on the Lithium right then, instead of waiting until the end of week 13. I was pretty much in tears on the phone and he said that I needed to do what was right for me. And that it seemed like I needed it. It being the Lithium. I said yes, and felt an enormous weight lifted off my shoulders when I hung up the phone.

After about a week back on Lithium I began feeling like myself again.

It was a well-calculated risk and one that I was glad that I took. Having to choose between taking a medication while pregnant or struggling with a mental illness that causes you physical stress and trauma is one that I wish no woman would have to make. But sometimes we have to make hard decisions. I was very scared and felt an enormous amount of guilt for having to subject my unborn child to a potentially harmful substance while she was growing inside of me, but if I had to do it over I would do exactly the same thing.

I'm forever grateful that she was born healthy and today is a thriving toddler who pushes the limits every single day. And I'm thankful that I have such a supportive husband and parents who were right there with me every step of the way encouraging me to make the best decision for me at that moment.

Postpartum psychosis - how it happened to me (Part I)

I was online this afternoon and came across a story in our local online newspaper about a woman who had experienced postpartum psychosis after the birth of her second child. She stopped her car in the middle of DC afternoon rush hour traffic, took off all her clothes, and was running along the shoulder of the road towards a bridge over the Potomac River. She was convinced that she needed to be baptized in the water because the world was ending. The details of her story are eerily familiar to me. I feel for her that she had to go through something as embarrassing as stripping down naked in public. Could you imagine?

But at the same time I am so incredibly proud of her for standing up and telling her story - publicly. She is a brave woman and I truly respect her. She is not afraid of speaking out about this rare disorder that affects only one to two women out of 1,000. It doesn't sound like many at all, but when you do the math, that computes out to 4,100 to 8,200 women in a year based on the average number of annual births.

I think it's about time that PPP gets a voice. There is so much information out there about postpartum depression, but if you ask anyone if they know anything about postpartum psychosis, I would venture to bet that they'd bring up Andrea Yates, the Texas mother who killed her five young children by drowning them in the bathtub in June of 2001. But only five percent of women with postpartum psychosis commit suicide and only four percent commit infanticide.

Those numbers could be so much lower, if the general public were aware of the signs and symptoms of postpartum psychosis so that they could intervene before a tragedy could occur. When a woman finds out she is pregnant and begins reading the various pregnancy books out there, there is always a chapter on postpartum depression. I wish those authors would cover the other side of the spectrum too. There are lives at stake.

It happened to me after the birth of our first child in September of 2008. He was a healthy 6 pounds, 12 ounces, delivered via emergency C-section. (He wasn't tolerating the contractions since his heart rate was taking a nosedive with each one, and I wasn't dialating past 5 inches, so the decision was made and at that point I was so exhausted I just couldn't wait for him to be out.) I was absolutely determined to breastfeed him, yet had no clue what I was doing. I just felt all of this outside pressure to make breastfeeding work - all of my friends had breastfeed their children, the books and magazines you read all say that "breast is best" and of course all the literature at the doctor's office was the same. Even the formula company's marketing materials pushed breastfeeding. So of course I put a ton of pressure on myself to make it work. It made those first few days and weeks with baby boy so grueling, draining, and sad. Due to the C-section, and the added stress I was putting on myself to be successful at nursing, my milk took almost a full week to come in. I was breaking out in hives up and down my legs every night because I was so stressed out. Instead of enjoy my baby, I was feeling like I was failing as a mother because I couldn't feed him. The pediatrician had us start supplementing with formula at his 2-day check-up because he had lost too much weight. I was barely sleeping at all. That is how the mania started to spiral me into psychosis.

The days and nights started to mush together as I started to live life in 2-hour increments. The baby would nurse for 45-minutes, then we'd do a diaper change, then he'd nap, but in the hour that he napped I felt as though I had a million things to do so I never napped myself. And it wasn't as if I didn't have help with me. My parents stayed for a week after the baby was born and my husband was off from work for two weeks. So I did have times when I could hand over the baby, but yet, things still had to get done.

It was about seven days after he was born that I remember breaking down in tears in front of my mom with the phone in my hand, outstretched to her, pleading, "Please call my OB and ask her what med I can take that will help me sleep! I can't sleep!"  My mom called and they said I could use Tylenol PM while nursing, and so I did that afternoon and slept four hours straight, the longest stretch of sleep I had gotten since having the baby. The next day my mom changed her flight so that she could stay a few extra days to help out.

I remember feeling as though my mind was starting to race uncontrollably at times during those first four weeks after my son's birth, but somehow I was able to hide it from my husband and my parents. I wanted to be able to breastfeed my son and I knew I couldn't do that while taking medication. So I continued to fight the racing thoughts, but they quickly caught up with me in a big way.

We had our son baptized when he was four weeks and two days old. My parents flew back into town for the ceremony, and stayed with us for that weekend. I drove them and my brother and sister-in-law to the airport on Monday morning. On Tuesday morning I had become manic to the point of psychotic, and had to be hospitalized because I refused to take medication.

I spent a week in a psychiatric facility where the doctors stabilized me using a combination of anti-psychotics, sleep medications, and the mood-stabilizer Lithium. I could not believe that I had missed out on my son's fifth week of life. Completely.

The insomnia was the first and most prominent symptom for me. The delusions and hallucinations are a close second. I refused to eat at times. Each and every sound I hear is amplified one hundred percent. These are the symptoms that I experienced every time I had been hospitalized. Which up until that point had been twice.

The common theme that I experience when I become manic to the point of psychotic is the feeling that the world is ending. Let me tell you - it has got to be the scariest feeling in the world when you are absolutely convinced that it is happening. The time I lost touch with reality after our son was born, I remember that I had been sleeping upstairs since my husband said he would take care of the baby so that I could get some rest. I woke up at some point in the middle of the night and went downstairs to find him asleep on the couch, the gas fireplace blazing, with our son snoozing peacefully on his chest. For a split-second I thought about grabbing my camera to take a picture, but I had no idea where it was or else it seemed like too much of an effort to find it, so I didn't bother. I just woke my husband up and we went upstairs to bed, putting the baby down in the bassinet by our bedside.

A few hours later I couldn't sleep because I kept thinking I heard the baby crying. But he wasn't. My husband kept telling me to go back to sleep. But I couldn't. When he woke up an hour or so later to get ready for work, he knew right away that I wasn't right and he needed to call for help.

(To be continued...)

 

A "deficiency" or mental illness?

I was discussing my blog with my father over the weekend because I was still torn over the issue of whether or not to disclose my true identity in my writing. He and I both agree on the point that there is an incredible amount of stigma still attached to the label of bipolar in our society, and then he said something that really made me think. He told me that he doesn't consider me to have a mental illness, per say, he feels that I simply have a "deficiency in my brain chemistry" which causes me to become psychologically impaired during times when I am unmedicated. Humph. Good point Dad. Especially because all three of my hospitalizations prior to the first where we had no clue that I was Bipolar, happened when I was not on my medications.

But are you saying this simply so that you do not have to be constantly reminded that your child has a psychiatric condition? I guess "deficiency" just makes it feel better.

I mean, I see your reasoning. And it does make sense. It is true that I really only require a small amount of Lithium to function at a completely normal level. So, as long as I take my meds (which I do religiously - my past has taught me some very valuable lessons, let me tell you) I'm normal. Balanced. Sane.

Not mentally ill.

 

History has proven for me that within a week of going off my medication, I'm spinning out of control and am clinically psychotic. It takes a couple of weeks on anti-psychotics to bring me back to the middle.

So yeah, I guess you could say that my brain is deficient. It's so weird to me that all it takes to keep me normal is a small amount of a naturally occurring salt. When I looked up Lithium Carbonate on Wikipedia, I wasn't surprised to read this:

Upon ingestion, lithium becomes widely distributed in the central nervous system and interacts with a number of neurotransmitters and receptors, decreasing norepinephrine release and increasing serotonin synthesis.

After my most recent hospitalization, I was released to the care of my regular psychiatrist who had been helping me try to stay off Lithium during the pregnancy since I wanted to be medication-free for the first trimester to give the heart time to form without being exposed to Lithium. At my first appointment with her post-hospital, she and I agreed to continue using the anti-psychotic, but to try to stay away from the Lithium as long as possible. That next month was really hard. I literally had trouble putting words together to form sentences. I couldn't talk right. I jumbled my speech. I couldn't write with a pen and paper. I avoided my friends because I didn't want them to see me that way. I remember telling my psychiatrist, months later once I was stabilized again on Lithium, that at the time it felt like the neurons in my brain were broken, they weren't firing the way they should have been so that I could think and make sense of things. It was awful. I needed Lithium in my blood.

I specifically remember the morning that I called my high-risk OB-GYN to tell him I had recently come home from a hospitalization. I told him I wanted to stay off the Lithium for the first trimester, but he said it sounded like I needed it. That was when I made the decision to go back on it. It was a good decision. The benefits outweighed the risks.

But back to my original topic - deficiency or mental illness? I don't know. I'm still torn on this. Bipolar Disorder is a mental illness which people live with their entire lives. Just like heart disease, once diagnosed, is a condition that a person lives with the rest of their life. Sure, there is a deficiency in my brain chemistry that when treated allows me to function at a normal level. But that doesn't mean that I don't live with this diagnosis for the rest of my life. I still think about it about twenty times a day, on an average day. And if I don't take my meds, or they suddenly stop working for me, then yes, I will become mentally ill.

 

It's just that 99.8% of my life has been spent not feeling mentally ill. And I'd like it to stay that way.

What's your take?

National Pregnancy Registry

My daughter turned 8 months old yesterday. About two weeks ago she started crawling and just yesterday she started babbling non-stop. I am continuously amazed at how quickly she is growing and changing. And I am intensely grateful that she is a happy, healthy baby. I was hospitalized for bipolar mania when I was just five weeks pregnant. My husband and I had been trying to conceive our second child for seven months and it had finally happened, only to cause me such excitement that I couldn't sleep which lead to my mind racing beyond belief forcing him to sign me into a psych ward for four days. I had been working closely with my psychiatrist to come off the Lithium for the first trimester once I found out I was pregnant and then once the mania took over from the excitement of finally becoming pregnant, I continued to refuse medication because I thought I was doing what was best for the baby growing inside me.

Looking back now I know how very wrong I was.

The main risk that the baby faced if I stayed on Lithium was Ebstein's anomaly, a heart defect. The general population has about a 3% chance of this particular congenital heart condition, and the risk increases to around 6% for a person taking Lithium during pregnancy.

In my case the benefit of staying on medication greatly outweighed the risks of me becoming manic and needing hospitaliztion, and I definitely knew this having done a ton of research beginning back before I became pregnant with my son. But with his pregnancy I was able to somehow stay medication-free throughout those nine months and one month after his birth. And I think I was feeling some mommy-guilt in wanting to give this second baby the same drug-free environment in which to grow and thrive. It only seemed fair.

After spending four nights and five days in a psychiatric facility near our house, I was finally released to the care of my regular psychiatrist after being stabilized on Haldol via injections because I was very resistant to oral medications at the beginning of my hospital stay. They also used Zyprexa since historically I responded so well to it. Of course I was scared to death about how these medications were affecting the baby's development, especially because there is so little research out there on the use of a-typical antipsychotics during pregnancy.

This is what lead me to find the National Pregnancy Registry via an online search. They are collecting information from women who have taken certain antipsychotics during pregnancy and after childbirth to hopefully shed more light on the safety of these medications during pregnancy. They also need women who are currently pregnant and NOT taking these medications, to serve as the control. If you know someone who is willing to participate in this on-going study, please direct them to the site to sign up to join.

It is easy to participate - just a series of brief phone interviews and some completed paperwork releasing medical records is all it takes. They do a baseline interview during the beginning of the pregnancy, a 7-month interview, and a postpartum interview. Simple. Once you finish it will give you a good feeling knowing that you are doing something to help improve the quality of healthcare for pregnant women in the future.

A little history - the first half

In writing my blog posts, I'm not planning on going in chronological order, because that would be kind of boring, don'tcha think? The first half is about my first two hospitalizations which occurred within two weeks of each other and were before it was determined that I was Bipolar. The second half details my second two hospitalizations which occurred after the birth of my first child and during the first trimester of my second pregnancy.

However, I do think that it would be helpful to give a quick little summary in order to kick-off the launch of my blog, so here goes. Back at the end of 2005 I suffered my first mental break when I became manic beyond belief and had to be taken via ambulance, screaming and strapped down to a stretcher I might add, to the hospital because my poor husband had no clue whatsoever as to what was happening to me. I had barely slept a wink that entire week and it all came to a head on Sunday night. Two nights in the psych ward, a week off from work to recoup, my first visit to a shrink who attributed the entire episode to sleep deprivation and told me I could discontinue the Risperdal I was taking, and yes folks, believe it or not, I was back at work the following week.

Two weeks later when I relapsed and suffered another manic episode, it was clear that something really was wrong with me and it wasn't just sleep deprivation. But with no real history of mental illness in our family, we didn't know where to start to begin seeking answers. My parents spoke with some close friends of theirs who were able to find a recommendation for a psychiatrist in Florida and got me an appointment while I was there with my husband visiting over Christmas. Spending Christmas Day and the two days after in another psych ward was not my idea of a holiday. In fact, that Christmas was probably one of the worst days, if not the worst, day of my life.

After emerging from that second hospitalization, and sitting down for just an hour with the psychiatrist we were referred to, he was able to determine that there was a very strong likelihood that I was suffering from Bipolar Disorder and that I needed to start taking an anti-psychotic medication immediately to bring me down from the mania that I was still apparently experiencing. That evening I began taking Zyprexa.

Once back in Virginia and back at work, I started having anxiety attacks on an almost daily basis. The feeling of waves of panic coming over my body were so intense that it became impossible for me to be effective at work. I was forced to resign from my job as a successful employment agency recruiter and in turn felt like I had lost part of my identity. Crying spells then became part of my daily routine, in combination with the anxiety, and I remember wondering if I were going to be feeling that way for the rest of my life. It was a scary time for me. I don't ever want to go back to that. Ever.

I remember back in the fall of 2006 when I was incredibly against going on Lithium, but yet, at my wits end with the way I was feeling I was ready to give in and try anything with the even the slightest probability of helping me feel like my old self again. For pretty much the entire year I had been depressed and anxious and thus I had reached a turning point. My psychiatrist at the time had been suggesting Lithium for a few months, but it just seemed so final, so imperative. But who was I kidding? It was obvious to the three different shrinks I had seen, one being a renowned specialist in the field, that I was bipolar and that a mood stabilizer was what I ultimately needed to function at a normal level.

So fine. I caved into going on a Lithium regimen the day after my husband and I had a consultation with the specialist. He didn't even see patients any longer, only did continuing research in the field. So when my dad's friend was able to get us an appointment as a favor, we jumped at the chance. At the time I was on Prozac and Zyprexa, along with Ativan for anxiety and Ambien for sleep. Nice cocktail of meds, right? The Prozac caused some suicidal thoughts, though nothing I ever remotely was going to act on. So my doctor had cut that dose back quite a bit. After seeing the specialist I started on Lithium and my regular doctor began to wean me off the Prozac and Zyprexa one at a time until I was eventually just on Lithium.

Within a matter of four months I found myself feeling like the old me again. I was ready for a fresh start and finally felt more confident. It was what I needed in order to launch a job search and in a few short weeks I landed a job as a corporate recruiter for a Fortune-500 company and I couldn't wait to get started.