Recovery? - I want cure!

I want to thank all of you that read my blog and send me private emails. The blog has proven to be helpful for me, and I am pleased also to others. I try to post to it at least twice a week and am currently working on an article related to the recent poll that was active on the blog.

I welcome all your emails and comments. I thank you all for your support. If you have any ideas or subjects you would like to run a poll on and have a running commentary about, please email me or post a comment directly to the blog.

It seems that we (meaning all of us NAMI advocates and members) are needed more than ever. Did you know there is a group that focuses on infants and mental health?
You can find their website at http://www.taimh.org/

Of course, we VFT teachers knew this need was growing. In our VFT classes, we have had parents with children as young as 2 being treated for bipolar disorder. Autism and Asperger Disorders are getting younger and younger diagnosis, with a higher success in a recovery plan, because of early diagnosis.

While I am happy to know that awareness is growing, part of me is sad to know that not even our babies are safe from these illnesses. If you visit the above mentioned website, you will see they have a conference coming up with loads of workshops that look interesting. So take a peak, why not?

We talk about successful recovery. I am ready to talk about prevention and finding cures, aren’t you? I know that is not something most of us are going to see in our lifetime, but can’t we start pushing for it now? Just today, the military announced the use of a more sophisticated brain scan to study brain injuries in our war vets. If biological components can be found that are related to PTS and anxiety and other kinds of symptoms, can a cure for some of the brain disorders be far behind?

I wish you all a Happy New Year that is blessed with health and recovery. My most recent blog discusses how relapses affect the entire family. So I am sincere when I wish ALL of us health and recovery.

My best to you all.

Reflections of the year, soon to be past

My husband and I were talking on a weekend retreat we just took. We try to do this once a year to rest and rejuvenate. I am sad to admit, it had been almost two years since we had done this and frankly, that was the topic of our discussion.

HOW had we managed to not take care of ourselves and our marriage by waiting so long to get away, especially since we knew how important these weekends are to us as individuals and as a couple?

I know it's not a good excuse, but it happens to us all. Life got in the way - really got in the way.
At first thought, it seemed that our year had been uneventful - we had a hard time saying any one thing was terrific enough or a beg enough crisis that it had taken over our lives. Then we started thinking back and we actually had to go back to the summer of 2006 to pick up all the pieces of how our lives had been controlling us, and not the other way around.

That is when our lives took on a personality of their own. We were able to identify that as it had happened before - 7 years earlier when Josh's disease had flared and raged and gone on the rampage. so you would think that with our experience, we would have seen it and recognized it and grabbed it by the throat and choked it to death. (This is a metaphor and not aimed to a real person, lest you misunderstand.)

But I have to tell you that while taking things one day at a time can get you through the bad things, it is also a way to let the bad things take control of your days.... one day at a time.

It started out with Caiti's disorder becoming unmanageable and she ran away. This lead to a stay in the hospital. Hospital stays are exhausting for the patient and they are exhausting for the parents. There is family counseling and individual counseling and coordinating with the hospital doctors and keeping the main treatment doctor involved and the blood work that needs to be done with the new meds and keeping the school informed and arranging for a new IEP and getting the school work if they are able to work and if not, arranging for a tutor to catch them up. And this is while they are in the hospital.

When they come home, there are usually three or more med adjustments when you are dealing with teens and working with the school and getting back into a routine with the doctor, the counselor, the schools and at home. These are just the basics.

Then you have the little nuances of what is your teens actual life, like phone, friends and socializing. This have to be put back into place, managed and looked after and often times, the friends are there ready to go and sometimes, they are not. When they are no longer around, this creates its own set of problems that have to be dealt with.

So this took us from august to November. About this time, my stepfather's dementia was worsening, along with other issues due to diabetes and just general failing health. While my mother tended to his needs, I was forming a diligent watch to make sure her health was not failing, particularly her mind. She was home more, with no conversation. (He didn't talk - just watched old westerns on the TV, over and over)

I spent more time on the phone with her since she lived 300 miles away and threatened her with weekend visits to check up on her if she didn't give me a report of weekly activities that she occupied herself with. Of course, her life had begun to mimic the one I had been living of spending time at various doctors, counselors, etc. with her schedule revolving around which doctor was she taking my stepdad to, etc.

Continuing on my home front - the ups and downs of teenage depression that didn't' seem to respond to anything. Compound this by my spouse's growing depression, I found myself chuckling a bit maniacally I must say at times, that the irony of ME being the only one in my family NOT on medication to be some kind of universal crack joke. I had always been the one in the family that was considered odd and out there in my thinking and had lived a life that would be considered by most as unusual. The irony of life is never lost on me and I do believe God to be the greatest comic ever.

And I have to admit, strange as it may sound, I missed being the unusual one! I had never been considered the "stable, reliable" one before and that seemed like an odd cloak to be wearing all of a sudden. But I put it on and have found there are other ways to be unusual - like writing this blog. grin

This past summer, my stepdad died. And then there were all the things that death brings to our door that needed attention - insurance, Social Security benefits, transference of ownership, etc. And even though my mother had had the foresight to put things into a family trust, and they had prepaid their funerals, there was still a ton of paperwork and items that needed her attention for several months afterward.

Then Caiti's disorder crashed and burned when school started again. her anxiety soared and her anger burned everyone it touched. We were back on our own roller coaster ride.

The past four months have been taken up with medical visits, a hospital stay and nuemerous trips and emails to the school and her teachers.

And during all this, my husband and I are trying to run two businesses, have a life that is fulfilling of our own and maintain our marriage.

My way of coping has been to write a children's book and now I am compiling a book of poetry that the two kids and I have written over the years.

Our friends hang in there and wait patiently for when we have both the time and energy to be with them, thank goodness. That is true of the friends we have left. Many of them left us long ago, because they didn't understand or maybe they just didnt' care, (I can't be sure) what we were dealing with and what our kids were dealing with.

One friend even told me once, that I was bad mother, until she was here during a manic break that Josh had when he was 16. Later she broke down crying and told me she had no idea what my life had been like and begged my forgiveness. Moments like that make all the difference in the world, sadly enough. I don't see that friend anymore by her choice, not mine. But it still means a great deal to me that I know she understands and she can maybe share with others who don't.

How does the cliche' go - "Life is what happens when you are busy making other plans" It is also what happens when your loved ones are sick and when you are comforting them and figthing for them and suffering with them and for them. Life is what happens when you are loving your family and trying to do the best for them.

Life is right now.

Suspect Can be forcibly medicated

In the newspaper this weekend is an article about a woman who is being court ordered to take medication in Salt Lake City, Utah. Without them, she is not competent to stand trial for the 2002 kidnapping of a teenager. She aided her husband, according to charges, Brian David Mitchell in multiple felony charges.

Wanda Barzee, states that taking medication is against her religious convictions.

Let's talk about this? Should she be forced to take meds? When is it right to force anyone who is an adult to take medication and under what circumstances?

I want to hear your views.

NAMI - A source of help

With my previous blogs, I have talked about mental illness. Did you know if you have a mental illness or a loved one has a mental illness, you are not alone and there is help available?

NAMI – National Alliance on Mental Illness is a great organization for finding support and resources. NAMI is the nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families. Founded in 1979, NAMI has become the nation’s voice on mental illness, a national organization including NAMI organizations in every state and in over 1100 local communities across the country who join together to meet the NAMI mission through advocacy, research, support, and education.

I am affiliated with NAMI Texas. Their website is www.namitexas.org. NAMI provides support groups, educational programs, and a wealth of information to families and professionals about mental illness and the resources that are available.

If you need more information, contact your local NAMI or email me at info@celtwolfe.com.

Joshua Weighs in about His Book

It never occurred to me that Josh might NOT want a book written about his success in handling his disorder - bipolar. So I was surprised and amused by his comments when reviewing the book that is written about him and also for him. Below is review of my book - about him - Joshua Wears a Red Cape. I hope you enjoy reading his words, as much as I did.
Deb




I have to admit...at first i was skeptical about my mother writing a childrens book about my childhood. However, after reading this book and enjoying the story as well as the illustrations, I decided this book is great for people young and old. Very true to my childhood life, its almost kind of surreal looking back and trying to remember these things vividly. Despite how outlandish some of this story may seem, I will vouche for my mother (the author)...This story is 100% true and 100% enjoyable.

One out of Four - Can It make a Difference?

Recently I shared some thoughts I had about an exchange I had with my daughter. She will be 17 next week. Many people wrote me to tell me that they were unaware I had a daughter with bipolar disorder. Everyone who knows me or of me, knows I have a son with bipolar disorder. He, as an individual, and we, as a family, have been very outspoken about his illness and his road to recovery and he is the reason I and my family became involved with NAMI (National Alliance on Mental Illness).

I guess people not being as aware of my younger daughter’s illness supports two ideas –
1. She doesn’t get as much attention as her older brother.
2. We really don’t know how many people are affected by mental illness because many people aren’t talking about it.

Now, it’s not that we don’t talk about it in our family. I would say that first of all, I am more comfortable talking about my son and his illness as he is very active and has been from an early age, in participating in both his illness and his recovery. My daughter has not been pro-active in her illness or recovery which keeps me cycling in and out of anger and grief when dealing with her. Not much to talk about for me when I am in those fields of emotion. I am either pissed or I am sad.

However, being a proactive family for the most part, - (if we are not as forthcoming and sharing in regards to one member’s illness); it does give you something to ponder as to how others who are less educated in mental health, less advocacy minded; might deal with the issue of mental illness in a public arena.

With that said, I would like to challenge the statistic that is quoted on many, many websites, that one in four are affected by mental illness. (Some sites say one in five – I’m not inclined to quibble over one number) I challenge it, because I say WE ARE ALL AFFECTED BY MENTAL ILLNESS in some capacity.

Whoa – did that shock you? Are you ready to argue with me? Are you questioning my own mental capabilities, or possibly my intelligence?

Well let me tell you - you don’t have to have a mental illness to be affected by it. But, “ Of course”. you are saying to yourself. I am affected by paying taxes for the welfare system and the jail system and the donations I make to agencies, non profits and churches that support those that need help. And I say to you – “That is not what I am talking about.” While that is a true statement, we all are affected in some monetarily fashion when it comes to those who need help in many areas, I still say “We are all affected by mental illness – IN A VERY DEEP PERSONAL WAY.”

For example, last month, when my daughter was in the hospital, she was affected by her illness. And it would serve to reason, that her father and I were affected by her illness when we had to deal with her, the hospital, the nurses, the doctors, her counselors and attend family therapy daily while she was there. Also affected was her brother, as he was sad while empathizing with her and her condition and also while seeing for the first time, how we, as a family, must have suffered while dealing with his illness when he was a teen as well.

But there are more who are affected. Our family friends were affected. They grieved for us and with us. They grieved for themselves as they were denied our friendship and companionship as we were dealing with the issues of her crisis. Her grandparents were affected as well for the same reasons. They also grieved for they feel helpless, as they are not sure when to help, how to help and are frustrated for not being better at understanding what we all live with every day in our home.

But there are more who are affected. When I sat in her last ARD meeting at school, I was amazed to see the same look in several of her teacher’s eyes that I see in my eyes when I look in the mirror and in my husband’s eyes as well. I saw grief, sadness, frustration, anger and helplessness. There people really care about her and they don’t know how to make her see that she is more to them than a warm body in a chair they see a few hours a week. And you can see it makes them question their abilities in their careers as teachers.

But there are more who are affected. I know our family is on the prayer list of four churches. These are the ones I know of. And because I believe that prayer affects us all, I know that each time a person in one of these churches prays for my daughter and my family, they are affected as well. Probably in a very good way, since they are talking to God, which is a powerful and mostly positive thing. But at the same time, it could be it brings them face to face with their own fears or even possibly real life circumstances. But which ever it is, they are still affected in some way.

And this in only the tip of the iceberg. My list could go on and on. But I think you get my point. Just because you don’t have a mental illness or have a close, loved one with a mental illness, does not mean you are not affected by a mental illness.

It is time for mental illness to come out of the rabbit hole and take its place in the real world. I sat in the hospital waiting room, listening to a couple discuss the fact that they were angry with their insurance company because it would only pay for the mid range wheelchair for a family member, while they wanted the deluxe model that was “sportier”. I can not express my rage upon hearing them complain. Hours have been spent on the phone, arguing with insurance companies, trying to get them to even pay PARTIALLY for medication for both of my children. And the irony of that statement is that is part of our GOOD times, because being self employed, there were many years, we had no insurance and just had to pay for everything out of pocket.

So I apologize for being silent at times. I will always respect both of my children’s right to privacy and never discuss their issues with out their permission. But at the same time, I will strive to continue to speak and share and educate in what manner is available to me and remember that when times are sad or bad, that is my motivation for speaking out more, speaking out longer and speaking out purposefully. I know we all get tired. But as long as we make sure that one of us is speaking out at all times, even when the rest of us are tired, we can still be supportive and we can still do our small parts. And when we get one out of four in agreement with us, things will have to get better, right?

Featured Again - Josh's Story on Real Solutions Press

Josh's vignette, featured in the Chicken Soup books is getting more press on Real Solutions Press.

Go to their website and see how you can get your stories featured and read about Josh if you haven't already.

http://www.realsolutionspress.com/samplestory_st.htm
Click on the Smartest Thing I Ever Did For My Family by Deborah Rose,
under Sample Stories.

New Yahoo Group - Never Underestimate The Spirit

Subscribe:
n-u-t-s-subscribe@yahoogroups.com

Join our new group for sharing, caring and networking.

Never Underestimate The SpiritMental Illness is not a death sentence of the mind, body or the spirit.

We are here to let people know that.We are hear to talk about recovery. We are here to talk about advocacy and stigma busting. We are here to talk about how to build a recovery treatment plan and how to get the support you need. We are hear to talk about friends, acceptance and having a successful life, even when it's not the life you or your loved ones imagined it to be. We are hear to talk about having all the love and happiness and acceptance that is the natural wants and needs of us all.

Never underestimate the spirit in building a successful person, when the tools are provided to them. Join us and let's share and build.

How I Became NAMI Member

NOTE: This is a short article I wrote earlier this year for the NAMI newsletter but I don't think it was published.

NAMI members are like everyone else. We have our good days and our bad days. I don’t think we have more bad days than others, but I do think that our bad days may be more intense on average than most.

By Deborah Rose, Director of Educational Development

Coping with “bad days” has become an art form for me. Used to, coping for me was to get in the car and drive for hours aimlessly. The quiet of the drive relaxed me and I would fantasize about driving to exotic places and meeting interesting people and getting just any kind of job that would let me rent a room with a kitchenette.

And that worked for while. Then the day came that I came home from a quick trip to the store to find three police cars at my house. My son had blown a hole in the floor of the closet and called the police. He was twelve. The guns had been locked up and the ammunition had been hidden. My days of driving were ended and it was time for me to find a more practical solution.

I don’t know how this happened, but I did not find NAMI. NAMI found me. Shortly after the “hole ‘n the flo’” as we refer to that time in our house, I received a call from a woman and I had no idea who she was. She couldn’t tell me how she got my number. She only knew I had a child with a mental illness. I politely informed her I had a child with bipolar disorder, he was not mentally ill. (“Was I really that uneducated?”) She invited me to a group and my husband and I went. This was my introduction to “Visions for Tomorrow” in 1999.

I remember being fascinated that there were other parents who had stories that were identical to the ones we had. The information was about things I had never heard of and I remember thinking how simple this all seemed. Something the doctors had left me feeling that once was overwhelming and scary, now seemed to make sense and there was hope and treatment and my son would not grow up to be homeless and he could have a wonderful life.

Before these classes, I had been hopeless and desperate. After the first class I was hopeful, empowered and felt that the future could be promising again for my son and for our family.

A little education goes a long way to take away the darkness and Vision for Tomorrow classes have given me not a candle but a huge spotlight to show me the way.

NAMI provides a wealth of information and support and is many things to different people. My first experience with NAMI was about education. Knowledge is power. That is the motto for my own business. Through Visions for Tomorrow and education courses designed for all kinds of people, NAMI continues to empower individuals so that they can help themselves and help their loved ones.

NAMI education programs are free to families and individuals and there is a reason for that. How do you put a price tag on something so valuable? Bad days – yes I still have them. But I also have the knowledge on how to deal with them. It started when I learned about mental illness and how to help my loved ones. And I also learned how to help myself and it only took 12 little workshops. Visions for Tomorrow is aptly named as I have an idea of what the future can hold for me and my family.

NAMI Members Get Published

http://www.behlerpublications.com/titles-mclaughlin.shtml

Mommy I'm Still In Here: One family's journey with biopolar disorderby Kate McLaughlin

I reviewed the book by Kate McLaulghlin and highly recommend it. (See previous blog)
She is still in pre-production but I found that my review is in GREAT company and she has comments on her site from Rosie O’Donnell, Tipper Gore and Maria Shriver.

If anyone has a professional or well respected person they know personally that they could introduce my book to, I am looking for someone who could do an intro to my book for a second publication. This is something a publishing company would facilitate and one of the downsides of self publishing. But I am determined to plug along and am learning about all the ins and outs as I go.

Please order Kate’s book (she is a NAMI member from Arizona just as I am a NAMI member in Texas) and please order mine (lulu.com/celtwolfe) as a way of getting the word out and being a stigma buster for our families. Thank you all for your support and your courage.

Deb Rose

Isolation is the Enemy - As Featured on Steve Blow's Blog - 4/9/2007

The biggest enemy for our loved ones with mental illness is isolation. I have a 22 year old son with a diagnosis of bipolar disorder, who lives with a room mate. Even though he does not live alone, everyone in our family makes a point to talk to him three to four times a week, to take his “pulse”, so to speak.
Others around him just do not know what to look for and do not recognize the warning signs of when his behavior may be sliding down hill. He works, he goes to groups meetings, he takes his medication. But it still takes the “one on one” family care to help him stay on track and stay level.
When I read about people such as your woman by the fountain and then again about Cho Seung-Hui, I despair for them, knowing they have been lost for a long, long time. Isolation works against the sanest of people. What has happened in these two people’s lives that they have no “safety net” of family or friends?
We’ll never know. However, with journalist such as yourself, maybe others will not fall through the cracks and families will wake up and realize that no matter how tired or frustrated they are with their loved ones, that they have to keep trying to stay connected to them, for them.

Where Do WE need To Focus?

I have a son and a daughter who have bipolar disorder. Most people over 30 would know this illness as manic depression. Brain disorders are the new politically correct term for what most people term mental illness. Most mental illnesses are caused by chemical imbalances in the brain. Until about 15 years ago, it was usually assumed that mental illness was only found in adults.

Some of the illnesses that fall in this category are:
Anorexia nervosa
Anxiety disorder
ADHD
Autism/Asperger's
Bipolar disorder
Borderline personality disorder
Bulimia nervosa
Depression
Dissociative disorders
Eating disorders
Substance abuse
Obsessive compulsive disorde
rPanic disorder
Personality disorders
Post-traumatic stress disorder
Seasonal affective disorder
Schizophrenia
Sleep disorders
Suicide
Tourette syndrome

Some of you may be surprised to see some items that maybe a family member or even yourself is being treated for or has been treated for in the past. Mental illness does not just apply to those who require hospitalization and mental illness is not synonymous with insanity. Mental illness is a brain disorder. And many times it is genetic.

Many comments made about some of the kids involved in the shootings occurring in our schools would lean heavily in pointing that these children possibly have brain disorders. While I never rule out the possibility of evil in this world, most people who are normal do not want to stay in trouble or cause trouble. So if you have a child who is troubled, why aren't more people asking WHY is that kid troubled?

And the point that most people get picked on is an excellent one. If you have control of your faculties, you get mad, your feelings get hurt, but you don't run off and shoot up the world. So why aren't these kids being seen as having a problem and being helped?

Today, doctors are even behind on what brain disorders are, what the symptoms can be and MOST are very slow if they don't actually refuse to diagnose these symptoms in teens and young children. However, children are showing symptoms of brain disorders as early as one year old which sounds unbelievable until you actually get to sit and work and talk with the child.

Many factors can bring these illnesses to a peak at an earlier age - hormones in food, allergies, stress or a combination of things.

Due to the stigma that still attaches mental illness, many people refuse to address the possibility of this problem in their own child. Many people are ignorant as to what brain disorders are and what to look for. This is directly related to stigma and people not talking about their illnesses, etc.

Most great authors studied in school today suffered from bipolar disorder:
Poe
Emerson
Hemingway
Keats
Fitzgerald
Shakespeare.. the list goes on I

t is thought that both Churchill AND Hitler had brain disorders.

Many of today's actors and athletes have some type of brain disorder, one even being on the Dallas Cowboys ( I forget his name) Patty Duke, Robert Downey, Jr. Ned Beatty, Dick Cavett, Jonathan Winters, Linda Hamilton are just a few of the celebrities that have bipolar disorder.

And in case you did not know - the trendy disease of the day - clinical depression - is a brain disorder. So many of you may have a history of brain disorders in your family and did not know it.

Before you take the high road, blaming the parents for not seeing these kids have a problem and asking why they aren't getting help, let me share two points with you.
1) It took me almost 10 years to get an accurate diagnosis for my son. I was told things like, there was nothing wrong, I worried too much, to I have created stress in my child through divorce and the death of my husband, to he was just high strung, to there is nothing wrong with your son, just take him home and encourage him, he's a genius. (He does have a high IQ... that does not explain him trying to shoot a hole in the floor)

2) Schools and teachers are legally obligated to suggest that any child who shows any type of social or learning problems be tested for learning disabilities, ADD, etc and the school district, run by our tax money is supposed to pay it. However, many schools do not educate their staff about this law or if they do, discourage that testing be done as they need the funds for other things.

So while I hate agreeing with the person who said this, I do agree, that on many levels, it does take a village to raise a child.

I am very committed to the education of the public and to the helping of the kids, so much so that I have started a non profit group and I facilitate support groups in the Dallas area for the KIDS. I found plenty of support for the parents when we started this walk, but none for my son. So, not being anything but a mother who loved her son and a person who could read, I plunged in head first.

What I found is that most of the kids have the same problems discussed in the paper about the kids that do the shootings- they are social outcasts, they are angry and no one knows why. They aren't really in a lot of Trouble, but then again their lives don't seem all that right either.

I hope this helps someone who reads this to have a better understanding and if you see a child in your family or group of friends that you think may have a problem, please help them to find the help they need.

The guns and the cars and everything else will take care of themselves if we can help the children get the medical treatment they need, and then teach them life skills and how to be active in their own medical recovery.

Thank you for allowing me to share this with you.