I just wanted to thank some of you for understanding my frustration with society and the mental health system and how my daughter has been treated.
Alan, Your post gave me hope. Kelsey is home for the first time in five years. She was a danger to me (thought I sold her soul to the devil) and to herself. She ended up on the streets often. The point is, after five years of being locked up in hell holes, I believe she is fairly stable. She IS over medicated but we are waiting to get settled into a new place to try to take her off all meds to find out what is working and what is not. When she was locked up, they would just pile on more meds and not take her off any. She takes probably 35 pills a day with very nasty side effects. Alan, I am so happily surprised that your son is doing so well. My daughter was considered "gifted" and she is very intelligent but how to get her to focus is beyond me. She still has delusions with all the meds even though she has learned to act appropriately for the most part. It is like she lives in two different worlds. All I have to say is that she has not been given the care she deserves. I was a government employee when she was diagnosed with good insurance. I was amazed that I could not get her good doctors and care
I think people need to be reminded, those wandering, mumbling, homeless that you see on the streets everyday could have been your daughter or son. I would never have thought this could happen to me or my family.
Roxy, with her being gifted I'm sure she has some kind of creative outlet, whether she's found it yet or not. If she has, by god encourage it all you can, and if she hasn't, when you get the chance PLEASE don't waste any time trying to help her find it. It could mean so much to her. And to you and Brett. It could turn out to be the one thing to calm and stabalize her at times. It can be so many different things too. Don't limit your ideas to the typical painting, playing music, etc etc. If she gets a strange new interest, run with it! :) Just my thoughts. I'm glad she's home with you. That's the only place she should be! With her momma! :) Roxy, this is so sad and is happening nationally. Doc's just do not know how to try mental illnesses. And after all of these years I think it's time for them to pull their thumb out of their a-- and do something about it. Just remember this in the next election. I have discovered in my state that the women that have been elected are doing a marvelous job of representing problems of this nature.I am new here, but just wanted to offer my support
Some ppl seem to think that hiding things and medicating them makes them go away...well eventually it will raise its ugly head. I am very happy that your daughter has your support and love. So many times ppl misunderstand things and pass judgement....when all that is needed is love...understanding and patience...
Best wishes for you both
My son is off all medications now...he refuses to even take over the counter medications for a cold. It is still difficult for him at times, but he's learned to cope pretty well. It's extraordinarily stressing for parents and sometimes I wonder if the stress wasn't part of what triggered my RA. In our case, he had a good psychiatrist who tried to help but there's so much they don't know! In the end, it was his decision to leave home and try to manage his life on his own that made the difference. We have been supporting him financially, he's a full time college student now, and I talk to him almost every day, but he's far away and has to manage his own life. He's volunteering in a school now, reading to kids and helping the teacher. He spent part of last summer in the Philippines on a volunteer mission trip and has spent summers studying abroad in Rome and Jerusalem. Nothing is impossible, but it sure hasn't been easy. The future is always uncertain so I stay focused on the present. I'm praying for you and your daughter...it's not fair and I know the incredible pain and sorrow you have endured. No one who hasn't experienced it themselves can truly understand what it feels like.Hey Roxy. I guess I missed something. Was wondering what exactly is the nature of your daughters mental illness. My faince suffers from a few different mental and emotional problems (bipolar/manic depression, borderline personality disorder, post traumatic stress disorder, ADD and obsessive complulsive disorder). I don't know as much as she does about this subject. I DO know that finding the right combination of meds and good counseling is important. And it is also VERY important that she gets a correct diagnoses. If the doctors misdiagnose her, and put her on the wrong kinds of meds, it could definitely make matters worse. My fiance is actually on this board under the name NightStar. If you want, you could maybe try and send her a private message and she could maybe give you some good advice on the subject. I could also mention this post to her, and maybe she could get in touch with you.
Hope things are going well,
Jesse
My daughter's diagnosis is schizo-affective. That means she is both bipolar and schizophrenic. We know she is over medicated but from experience I know that if she is taken off all meds, it takes months to stabilize her. She has to have residential treatment to do that as she needs 24/7 supervision and her psychotic delusions makes her dangerous. She thought for two years I sold her soul to the devil and that is what caused her schizophrenia. One day I came home and she was taking all of my wordly possessions and putting them in the dumpster down the street - saying we were too materialistic and we needed our house more God like. She then got some grape juice and baby oil and anointed the house - all the door ways etc. These are only a few examples. So now what we are doing is trying to lower one med at a time very little at a time and see what effect it has on her. So far so good.
Arris, Kelsey is a wonderful writer. She writes poetry but she does not like to share much. We hope that she can take a poetry class once we move. Everything is on hold until we move. Even in this situation with her sleeping on the floor, she is more stable than she ever was "hospitalized".
Now and Then - Good for you. I am actually fascinated by my Kelsey's other world and love her to share with me.
Alan, I am so happy for you and your son. Kelsey is very med resistant and is so dangerously delusional without the meds, I could never take her off or let her go off. I ask myself many times if I should have done the shock therapy they wanted to do when she first got sick. I have heard positive things about it but at the time, I did not have it in me to say yes. Now she would have to say yes and no way. It is just the meds are such poison.
After saying all this, we are all doing well. Brett and her are great pals. She loves all the animals and her outings - we let her go out to the coffee houses for like an hour on her own and she loves it. I take her to gym with me, she does not focus well so bounces from one activity to the next all over the gym but everyone understands her condition. She also goes for dog walks with Brett and loves to grocery shop and help cooking.
No regrets. It is so good to have her home. I could not do it without Brett. I hated having her locked up all of those years in such horrible conditions but it took that for her to quit running away and living on the streets. Now the biggest problem is she is lonely. When we move we are going to get her in a peer program. They take them fishing and camping. Kelsey wants to be around normal people and not mentally ill but our experience is that "normal" people always end up hurting her feelings and start a downward spiral.
I am sorry for dumping all of this on a RA website. Alan, I also showed my first RA symptoms when Kelsey got sick (skeleton feet) but I ignored it, I was too caught up in legal fights trying to get her help. I spent two years in court sueing the county I live in. I won the suit, no money but better treatment and a lot of money to my attorney. For obvious reasons, when she turned 18, the county alienated me from Kelsey's treatment.
I was misdiagnosed with depression and put on Prozac, that set off my first manic experience. I found that I was not accountable on my finances, found that I had a temper and was careless with my life. I also had a strong sex drive that was uncheck during that period.
I have trouble with racing thoughts and often in my own world day dreaming and such, I often avoid contact with others since I just get my feelings hurt easily. Normal people are critical, and often I had people tell their kids not to befriend me since I was different.
I can understand hallucinations, suffer sleep paralysis myself and that is a pretty scary situation. It feels real, like you are awake, and some reason your body didn't make the connection, and I would feel pure evil, a presence which could not be seen. I found out years ago that it was sleep depervation that set off my paralysis so I keep a strict rule on getting a good amount of sleep nightly.
Just this last week I had an experience where I was dreaming that I was in a fight to kill another person, when I woke up I realized I was on top of my boyfriend and shaken that I had pounced on him in my sleep. It just seemed so real, the hate and fury I felt. In the dream I wanted the lady dead, and it was my full intent to complete that task, then to find out that I accidently attacked my boyfriend. I told the doctor and they recently increase my Geodone from 120mg to 160mg so far so good. Have not had any repeats of that incident.
Here are some other boards for you to check out. www.bipolarworld.net and www.addforums.com the second one has sub forums for other disorders, I have found some help there.
If you ever like to talk more, you are free to e-mail me, or if you like to talk in person you can e-mail me for my phone number.
Take care,
Nightstar, You are so articulate. I will pm you and check out those boards. You sound very responsible for your condition and you have RA tooNo I am not a RA sufferer, I am here to support Liquid Skin, he is my other half. :)
I can say one thing about being bipolar, I have held 28 different jobs in my short life of 34 years, I LOVE learning, and teaching. Taking in everything. That might be the same with your daughter.
Roxy, you and I have talked at great length about the mental illnesses of our daughters and the terrible heartbreak it brings for both us and them. There is nothing worse than watching your beautiful child's mind change the way it works. Things that my daughter could do as a child, she cannot seem to do as an adult.
My girl, Julie, is bipolar, has an anxiety disorder with panic attacks and has borderline personality disorder. On top of that she has severe endometriosis, FM, and a bulging disc in her back. So, she is also on a lot of pain killers.
Julie has also been treated terribly by the system. They claim to only want to deal with her mental problems and not her physical ones. It is like Solomon wanting to cut the baby in half. You just can't do that. You have to look at the whole person. Julie is much more stable now on her meds than a year ago. At that time, she was very suicidal and had problems taking her meds correctly. I had to put her in a residential home because I could no longer control her care. It was a heart wrenching decision.
And, the place they put her in was awful and they didn't do their jobs properly. They continuously put Julie down and acted like she was not cooperating when she was truly doing the best that she could do. I feel that they failed her in many ways.
But Julie has gained something now that I had prayed for her and that is she is once more in touch with her own inner strength. She's grown up a lot. On her meds, now more balanced, she is a delight to be around most of the time. I've seen her off her meds and then back on them and the transformation is amazing. I know that mental illness is not by desire or character flaw. When you see this type of transformation happen right before your eyes, you know that it is a physical condition.
Taking care of her has definitely contributed and continues to contribute to my RA. Her bad days exhaust me. Her really bad days cause flares.
But I would't trade for her. I know that my life has given her the desire to live her life, to reach for something more. She has told me that I am the reason she never followed through with her plans to hurt herself.
She is my heart's trouble, but she is also a great joy to my heart. I do wish others could understand and that this country did not have policies which treat the mentally ill so bad.
The attitude is pervasive though. It is fed by media that writes terrible stories about crimes, etc. It is also fed by religious beliefs that would claim that it's demons or awful sins that cause it.
It has to be remembered it is an illness, just like RA or diabetes. When you know it is an illness, then you can treat it and deal with the problems that develop from it.
I love my daughter as she is. I hope for her happiness and that she finds her path to living well with all of this. But her, right now, is who I love.
Deanna, Thank you for your story. I wish we could share our story on the front page of the newspaper every day. People need to understand that mental illness is NOT a character flaw but in fact a devastating diagnosis that seems to happen to the best and the brightest. They are deserted by society, the mental health system and many times their families. I hope people will read this and feel compassion when they come across some poor soul that has ended up on the streets due to negligence and this terrible disease they have no control over. Your brain is very powerful and my daughter has gone through so many nightmares that her brain created. They are her reality as much as our reality is real to us. Also, mentally ill people have such a unique perspective, I think it is a privilege to get to know someone who is mentally ill and open our minds.
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