A lifetime of experience - how can I help you?

I recently after being completely vulnerable in a group found out someone needed me. Her niece was diagnosed bipolar and unwilling to get treatment. I have written her a long email to reach out and help her. I would like to share that here.

First off remember this when she says hurtful things when she has horrible behavior you did not cause it and she cannot control it. My husband has known me for 15 years. He still does not sometimes get this. It is a hard concept to logically understand. She will continue to hurt you emotionally, but she doesn't mean to. And when she is better she will be sorry for her actions. This is a physical disease this is not just a psychological problem. I sometimes to this day feel like I am too weak of a person, I am not smart enough, I am not strong enough, I caused this. I know logically that I did not do these things to myself. I didn't choose to be bipolar. It just is. It is what it is. I can only move forward - I can help myself and others. (Sorry to sound preachy this is the most important thing for you to learn and is based on a lifetime of experience!)

OK. Let me share that I totally relate to so many things in this story.

I first attempted suicide at 16. Since then I have at various levels actually attempted at least 3 times. One with pills, once with a gun (thank god I it misfired (didn't go off) and that I didn't try again. I am blessed that my husband loves me. At 16 he saved my life - I was actually about 1 hours away from death. I was in a coma. He was 20 and heard something in my voice and drove about 100 miles an hour to get to my house from Orlando to Melbourne. I did not call anyone and say I was going to kill myself and I did not leave a note. I had carefully planned and research how I would do this for at least two years. I was hospitalized for 3 days by the Baker Act (Florida law that you are a danger to yourself or others and get locked up in a psych ward). Long term I got PTSD from that experience got better and then got worse.

I suffered from this so much that everyday of my life since I was about 13 or 14 I wanted to die. And I am not exaggerating every day at least once to this day I think about it. I plan how I could do it and succeed. Some days it is worse than others. When I come to those calls at a zero I am probably thinking about it multiple times. I seriously can spend an entire week in bed.

I was misdiagnosed for over 10 years. That misdiagnosis made me get worse. The disease progressed for longer and I have gone through so much turmoil. There is what is called the kindling effect the more times it happens and the more often it happens the more likely it is to happen in the future and the more it will happen. You have to break the cycle. I have broken the cycle many times. I was once told by my current doctor that I would never last more than a year without a relapse. I lasted 5 years. I was once told by my current doctor that I should never have children cause I can't handle it and it would be detrimental to a child. Years later he supported me and I actually went off all medication during part of my pregnancy. I tell you this because although there is NO cure for this condition ever. There is recovery. It's like a cancer remission. In her lifetime it will get bad again and it will get good. The goal is less bad than good in quantity and severity.

Unfortunately from these descriptions she sound like bipolar I. And perhaps with rapid cycling. This is serious. Bipolar disorder is a spectrum. The diagnosis changes over time. I was once bipolar II (less severe) and am now bipolar I, I was once not a rapid cycler and passed to no cycling passed to ultra ultra cycling, bake to ultra cycling. The goal of course is to first get out of ultra cycling, return to rapid cycling, return to no cycling. What I do know is that I will never pass back to Bipolar II. Not really possible for me. And I accept that. I know the facts and statistics and know that I have the power to make it better but need to accept that in this lifetime it will not go away.

I do believe that one day there will be a cure. They are researching genetic DNA issues to find a cure or a test. For 10 years scientists worked on identifying the genetic mutation and specific disease that causes Huntington's disease. It is a severe genetic brain disorder that leads to death. It is very bad. It is worse than Alzheimer's disease. I currently have a 1 in 4 chance of having this. I have debated for years getting my genes tested. Unfortunately getting the test would reveal my mom's status and since she currently is not symptomatic she doesn't want to know. It does not skip a generations.

I tell you this because the 1993 breakthrough of identifying that specific gene has helped the current research on the bipolar gene. They have been researching the bipolar gene since 1988. http://www.bipolargenes.org/ Because of you -- I signed up for the study this evening. I will be undergoing blood tests through John Hopkins university. Once they can identify the gene they can more quickly develop treatment and eventually know how to reverse the gene. So there is tremendous hope.

That being said I would recommend the following course of action for you, her family and your niece. This is based on my experience of knowing how to treat someone, how I need to be treated, etc. This is going to be a long-term hard work thing. You have to be prepared to take it one step at a time and understand that you can't fix it overnight or ever. You can however help her tremendously.

Numerous studies have proven that family support is actually more important that medication compliance. This is fantastic for you because even if she is unwilling to get help now you can this very moment be part of the solution.

Here are your immediate action steps:
1. Education. Please read the following blog - http://www.mybipolarpregnancy.com/search/label/bipolar%20in%20the%20news this is my story. Some parts are applicable to your situation. And this http://www.mybipolarpregnancy.com/2007/02/why-i-started-this-this-blog.html As you can see I started this almost 3 years ago. I started it before I got pregnant partially because I felt alone I searched and searched for information and I couldn't find what I needed. I have always been all about the research. It gives me hope and I want to share that hope with as many people as possible.

2. Recommended reading: http://www.mybipolarpregnancy.com/search/label/recommended%20reading Some is about pregnancy, some is about bipolar as a whole. This book: Taming Bipolar Disorder is great one of the best I've ever read: http://www.amazon.com/gp/product/1592572855?ie=UTF8&tag=mybipopreg-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1592572855 If you read it you will see me in it.

3. Attend a support group. There are more than 30 groups all across Broward county.

Start here - http://www.goldcoastdbsa.com/ This is the local chapter that I ran 3 support groups from. (I actually originally started that website. Although it looks much different now than it did when I was running it) This is the family & friends group that I ran
Family & Friends - 1 to 2:30 pm
North Broward Medical Center
Classroom # 3
201 East Sample Road
Pompano, Fl 33064

A friend of mine who used to run groups at Gold Coast DBSA started a new group. They were unhappy with the management of the groups from Chuck. I have not attended any of their groups, but I know that Lew is fantastic. He can be reached at lew@sfdbsa.com, http://www.sfdbsa.com/

The guy who runs it Chuck is maddening. When I last saw him he was pretty much crazy. And is always at some point nutty. In the 3 years that I've known him he is always in a state of hypomania or mania. He doesn't always do what he needs to do to help his illness. However he has tried a lot has a ton of experience with this and is truly dedicated to helping others. I say this because every support group is different. Each group is different based on the facilitator and the people who show up that week. It is peer run - meaning all groups are run by people or family members who are affected by the illness. You will learn so much by going to even one group. All groups are different the first group might not be the one for you. Keep trying. It will work. I have reached out to my contacts within DBSA to see who recommends what group.

This is the national parent organization: http://www.dbsalliance.org

4. Think about therapy for yourself. This may be a hard step for you. It is a serious commitment of time and energy. In the long term it will help you and her. In this process you will learn how to deal with not only your situation and how it makes you feel as well as how to help her.

The goal of all this is to get her to take the following steps:
1. Hit rock bottom. This may sound horrible but if you hit rock bottom you get better. You understand the magnitude of the situation and you will get treatment. Everyone's rock bottom is different.

2. Education. The only way she will break through the denial is through a true understanding of her disease. She must accept the diagnosis and be willing to move forward. You taking the steps above will help her get to the point that she is willing to seek treatment.

3. Psychiatry & Medication - The only true course of action currently is heavy drugs. She needs to get on an anti-psychotic, she needs a mood stabilizer. She may need hospitalization. There are tremendous downsides to medication - side effects ranging from weight gain to temporary or permanent hand tremors to PTSD. All of these side effects can be managed and fixed. The outcome is better than the short-term side effects. And every person reacts to every drug differently. Please call my doctor Dr. Feldman see if he is taking on new patients. He is the best doctor I have ever seen.

4. Disability. Bipolar is a severe mental disorder and disability is possible. And I know she would qualify on the disability. Her financial situation will determine the amount and the length of time she is eligible. If she has too many personal assets there are strategies to move money to make this a resource that works. I can give you the name of people I know who have done this.

5. Exercise, Nutrition, Supplements. These are long term key to her recovery. But they are not an immediate fix. We can discuss this further. But basically the food she eats and the environment we are living in both culturally and physically is poisoning us. I sincerely mean that based on the research. Bipolar disorder and the severity is getting worse every year. It is worse here than in third-world countries, however we have better treatments. We have the possibility to have lasting change.

6. Suicide line. I've called before. They are really helpful. It is confidential. They can talk you down.

7. Hospitalization. You can get her committed right now. You are a family member. All you have to do is call submit a form. http://www.dcf.state.fl.us/programs/mentalhealth/laws/ This at some point may be your only option if she doesn't get help soon. This may be the best thing to do today. Only you and the family can decide that. She will be hospitalized for 72 hours. In that time she will be forced to be medicated. She will attend support groups and one on one therapy. Be prepared that she may hate you for this in the short term. In the long term she will be grateful that you cared enough about her to take drastic steps.

Let me leave you with the following ... you have the power to change this for her. It will be hard for you. It will be harder for her. But she will get better ... and your help makes all the difference.

She is so lucky to have you in her life. I guarantee you that you through some action you have kept her alive this long. Your willingness to let her live with you probably has saved her life already. And I want to be part of your solution. I have touched hundreds of people. I have helped friends and family, I have helped people in support groups, I have helped people online through my blog and I have helped people through participating in clinical research studies which potentially can affect million. I am currently trying to get into 3 different programs. I am willing to help you in whatever manner can support you. I don't have all the answers but I am committed to helping you find them through my advice, through my willingness to let you vent, scream or cry, through my willingness to research drugs and new therapy options. Tell me what you need I will do everything I can to help you. And I sincerely mean that. Do not hesitate to call on me.

Even though this sucks on so many levels. I sometimes think this is a blessing. It is my calling to help people. I have a very powerful gift and one day I will figure out the right combination of how I can help more people.

I could share a million more things this is it for now .. I need to go back to sleep.

I am available tomorrow after the big fish call. I'm sure you have a lot of questions the above may address all of them. If tomorrow isn't good for you or you aren't ready to talk, let me know when is a good time.

I am so glad we met. I know we are going to be friends for a very long time. We are going to help each other more than we currently realize is possible.

With much, much love,
Rachael

Share Your Story

This is an open letter to all the women who have emailed me or commented on either blog in the last two weeks. Thank you so much for sharing your story. I am so sorry I didn't respond sooner. It has been a crazy two weeks for me. I was good until the 12 and then the waves of depression crashed down on me again.

I struggle daily with thoughts that I'm a bad mom because I chose to bring a child into the world knowing the severity of my illness. For me, I have been suicidal and hospitalized numerous times starting at the age of 12-14. At 12 I had "moody issues" by 14 I was seeing a psychiatrist for major depression and anxiety disorder. At 24, I was finally diagnosed by my current and wonderful doctor. I love my doctor because he tries really hard and although his treatment plans don't also work -- he is willing to stick with me and try things I suggest. Many of his top suggestions are all natural.

1. Daily exercise - 7 days a week of something.

2. Daily 30 minutes full sun, no sunscreen. If cloudy at least 30 minutes of a blue light like this: Philips goLite Blu

3. Multi vitamin, additional vitamin D, additional folic acid - about 1-3mg which is more than an average prenatal vitamin (even when non pregnant)

4. Prescription grade Omega 3 (fish oil) I use

5. I've been on as many as 6 daily medicines till my current 1 daily prescription of Lamictal

6. I'm on lower meds that I get on when experiencing rapid swings because I don't like to be sedated and numb on anti-psychotics and that's how I feel. Abilify, Zoloft, paxil, depakote, Zyprexa and Haldol all made me feel numb inside - to the tune of not being happy when happy things happen. And not being sad when sad things happen. Numb. The mood swings may stop. But I'm numb. And I've decided at this point I'd rather be a rapid cycler than numb. One day that decision may change again - but not now.

Feel free to email me at bipolarpregnancy@gmail.com

Staying Healthy for My Daughter

Being a mom has made me more aware of my mental health status. I think being a mom is one of the hardest things I've ever done. And it is also the most rewarding.

I've talked about my struggles with bipolar disorder on my other blog, My Bipolar Pregnancy so I won't rehash everything here, but will share some of my story.

I have had mental health problems for the majority of my life. I first started seeing a psychiatrist when I was 14. At the time I was being treated for major depression and anxiety disorders. Looking back it amazes me that I wasn't properly diagnosed. In fact, I lived with the wrong diagnosis for 10 years. Ten years is actually the average amount of time that someone who develops the disorder in their teens gets treated for the wrong disorder.

I also have spent the majority of my life dealing with suicidal ideation, which means I have spent a significant part of my life fantasizing about taking my own life. It is a horrible way to live. I have been fortunate that in the last few years I think about it less and less. I have attempted suicide 3 or 4 times. And I came very, very close to dying when I was 17. Luckily my boyfriend at the time (who is now my husband) found me in a coma and saved my life. Years later I once again attempted to overdose when I was in college. And then when I was 24 I tried to shoot myself, but the gun didn't go off because I was using the wrong ammunition. These were not the only times I attempted, but they were the most serious. I worry that one day I may try it again and succeed. I know the statistics, in my lifetime I have a 25-50% chance of succeeding in a suicide attempt. It is distressing to thing that I may die at my own hand. I share these things with you all because I want you to know if you too have been suicidal you are not all. These are things I am not proud of, but they are the facts of life for me.

Currently, I am diagnosed with Bipolar 1 Disorder with Psychosis and am a ultra cycler (meaning I have many, many mood shifts during the year - as many as 3 a week when things are really bad. I sometimes worry that my daughter will inherit this. And while that will be horrible, I also think that I will be able to help her.

I have long believed that their is an upside to being bipolar. I know many people with this condition do not think there is any personal benefit. But here's what I know - I'm very smart (I fall into the genius category on IQ tests), very creative (I'm a graphic designer and marketer) and very successful in life by other people's standards. I think the same problem in my brain that leads to bipolar disorder also leads to these traits.

My daughter, although only two years old, is already displaying many of these traits. I'm sure this sounds like I am a bragging mom, but she is ahead of her peers in many ways. She has a larger vocabulary, loves to do art projects and has a very active imagination. My parents say she is a lot like me. I take great pride in that.

Back to the point of this post. I stay well for my daughter. I also stay well for me. And it hasn't been easy. Back in November I decided to reduce my meds, and my family was a good reason taht I did this. I found that I was getting worse not better (you can read more about that here) and I felt like a zombie. I wasn't able to have joyous moments, I wasn't able to think. However I was able to be depressed and suicidal.

Reducing my meds has been very hard. When I got off Abilify and Zoloft I became manic. And for me mania is personally destructive. I had problems with my husband and I spent mroe money than I should have. Although the upside to the mania was I was very good at getting work done, which is a good side effect for me of hypomania.

Currently, I only take one medication and a number of vitamins and supplements to help keep me well. I also exercise daily, get sun every day and use a Philips goLITE BLU Light Therapy Device. These things have done an amazing job for me. I am doing better than I have in the last three years.

I highly recommend that anyone living with bipolar disorder try a daily regimen of exercise, sun exposure, bluelight and vitamins including Omega 3 fatty acids (fish or flaxseed oil).

As moms, it is important that we focus on staying well for our families. I hope that my daughter won't look back at her life and think - boy did I have a crazy mom. I hope that she will think that I have a mom who is strong, who overcomes challenges and leads a good example of leading a healthy lifestyle.

In the coming months I will be creating a community where we can all share our thoughts and feelings on being bipolar. I hope that when it is ready you will join in.

Please, leave comments or send me an email. I would love to connect with you all.