Wednesday, March 31, 2010

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. 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 - this is my story. Some parts are applicable to your situation. And this 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: 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: If you read it you will see me in it.

3. Attend a support group. I recommend Depression and Bipolar Support Alliance.

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. 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.

With much, much love,