THINGS I CHERISH AS A PERSON WITH A CHRONIC ILLNESS by May Enos

I believe every day should be filled with gratitude for blessings both big and small. Living with a chronic illness can be challenging, so I like to focus on the blessings. Here’s a list of things I cherish as a chronically ill young woman:

I cherish the relationships in my life that allow me to be whole and completely me. 

I cherish relationships where I am free to be open about my ideas, thoughts and feelings without fear of retribution. 

I cherish friends who let me to say “I have a heart murmur” just as openly and freely as “I passed my class!” I can say “I’m seeing my therapist” just as openly as “I’m seeing my cardiologist” or “I was denied disability” just as openly as “I love you.”

I cherish the moments in life where I feel completely safe, completely whole, perfectly me and confident. I know those moments are worthy of being cherished because it doesn’t always happen to me. Right now, I’m so confident and so happy. I know it is something worth cherishing because bipolar doesn’t always agree with those feelings. It will tear down my confidence and self-esteem until I’m scrambling in the dark for a little ray of light. It will make me feel worthless, helpless, hopeless, unlovable and so much more. It will make me hate myself so much that I can’t even look at myself in the mirror. So I cherish the moments when I feel completely safe, completely whole, perfectly me and confident because it doesn’t last forever.

I cherish the times I have with those I love. I may be young, but I have seen a lot of heartache in my life from the loss of loved ones. I know the pain all too well. I know the pain of wanting so badly to see someone, just to hear their voices and knowing that for an unidentified amount of time you have to learn to live without them. It’s pain and pure agony, no matter how much faith you have. So I cherish the moments, whether good or bad, I have with those I love and care about. 

I cherish my health. I live with a chronic illness. Every day my body is fighting a war it can’t win. After all, how can it win if it’s fighting against itself? So I cherish my health. 

I cherish the days my body fights an infection and wins.

I cherish the days when my body stops and actually attacks the virus instead of itself. 

I cherish my mental health and the fact that I have been able to fight for my health with such faith and sense of direction. 

I cherish my health and the fight that I am winning. 

May has a blog: Average Princess at http://averagelupieprincess.blogspot.com
May's post is also on The Mighty at https://themighty.com

Photo Credit: May Enos
May and her pets

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It's a beautiful day in the neighborhood...

Hope you have a good Thanksgiving week everybody!

EMPTY SHOES AND OUR CATCH 22 by Dede Ranahan

Hosting this blog is taking me on a journey I must navigate with humility and trustworthiness. Receiving, and sometimes editing your stories, is a responsibility I take seriously. I find myself in awe of your strength, courage and raw honesty. Some days my heart hurts after hearing of your struggles. I have to turn off my computer and go for long walks. Or call a friend. Or play with my cat. I have to pace myself so I'm not overwhelmed with sadness. So I don't give up hope that things can and will get better for my community -- the community of the seriously mentally ill.

As I say in my "Hello," my goal for this blog is to help move our stories of serious mental illness into mainstream discourse. More often than not, our stories don't get out to the broader public because of all the suffering that can bring.

When my son, Pat, was alive -- he died in 2014 on a hospital psych ward where I thought he was safe -- he never wanted me to talk about his illness. He was afraid, if people knew, he wouldn't be able to get a job, or a girlfriend, or decent housing. Sometimes he was in denial. He hated his illness and wanted, more than anything, to not have bipolar disorder. For the most part, I respected his wishes although, at times, reticence complicated our efforts to get help. Today, with my son's shoes empty and still, I've thrown the gags that muffled my advocacy work in the trash.  

Advocacy, however, is never simple. As I ask you to consider telling your stories, many of you face the dilemmas I faced. Sometimes you say, "Not now." "My daughter doesn't want me to say anything." "I'm afraid to reveal my illness." "I don't want to upset my family."

Believe me. I get this. At the same time I wonder, when we hide so much, how will we make the world fight for what should be a moral imperative: compassionate and competent mental health care? This is our Catch 22. By keeping our stories private, our trauma and tragedies stay secret too. We lose traction for getting public understanding and support.

I don't have answers. I don't give advice. When dealing with serious mental illness, you're fighting battles so confounding that, somedays, even God wouldn't know what to do. You're exhausted. But, when you can, please tell your stories. Our stories have power.

UPDATE: HAPPENING NOW - HIPAA IS KILLING OUR LOVED ONES by Linda Olivia

As you know, my daughter, Heather, was a missing person out of New York State. She'd stolen my car and my purse and was found in Ohio. Now she's at Strong Hospital (Northcoast Behavioral Healthcare).

I've been in Ohio and it's been nothing but a nightmare. The doctors haven't spoken to me so I can give informatIon to help in my daughter's care. I know about the HIPAA law (Health Insurance Portability and Accountability Act) and I'm not asking them to tell me anything. I've been put off and put off in trying to talk to anyone.

On Thursday, the hospital promised me a call and a meeting at one o'clock. Nobody called. I went there again yesterday and still no one would speak to me face to face.  When I told them I was going to call the judicial committee, they came down to talk to me. They accused me of threatening them and were very hostile. Finally, they've  agreed to meet with me today at 2:00 p.m. 

I'm praying things go all right but I'm afraid that they won't from the way I've been treated. I've called New York State to try to get Heather back into the AOT (Assisted OutPatient Treatment) program and they've not returned my call. I'm praying that someone can help me. I've talked to advocates in Ohio but nothing there either.

Please.  I am desperate.

Photo Credit: Onandaga County Sheriff's Office
Heather Olivia

HAPPENING NOW: HIPAA IS KILLING OUR LOVED ONES by Linda Olivia

After taking my car, my missing daughter was found in Ohio at a gas station. According to the authorities, she was in the middle of the road, disoriented, and extremely hostile.

Heather was taken to Trumbull Memorial Hospital where she was held from 11:00 pm on 11/08/2016 until yesterday, 11/10/16, at 10:00 pm. Then she was transferred to Strong Hospital (Northcoast Behavioral Healthcare) because she is an out-of-state resident and this is required by law. I was instructed that I wouldn't be able to talk to anyone regarding my daughter's care or even visit her due to HIPAA (Health Insurance Portability and Accountability Act).

I called the hospital to find out when Heather would be seen by a psychologist. I was told I couldn't get information about her medical care until my daughter signs a release. I was also told I couldn't relate anything about her previous mental health history. Is there anyone out there who knows Ohio's mental health laws and how I would be able to bring my daughter back to New York State (near me) where I can try to get her the help she so truly deserves.

This HIPAA law across our nation is killing our loved ones and our families.  We're the only hope in getting the seriously mentally ill the help they've deserved for so long.

Please help me in my efforts on this serious matter of our broken mental health system.

Photo Credit: Onandaga County Sheriff's Office
Heather Olivia

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Good Morning! So nice to see you!

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MY BRAIN IS ON FIRE by Lynne Warberg

Since my son's birth, I lovingly photographed him every day to create family memories.  Looking back, these images have become an extensive archive representing a mother and son's unique view of over 15 years of heartbreak, hope, sadness and terror and reveal how a family deals with their child's rapid cycling mood episodes. By sharing my story I hope parents who may be experiencing similar incidents, can detect the symptoms and get help, so that an early diagnosis can be achieved. 

"My Brain is on Fire" is a fifteen year personal project about my son, who was diagnosed with Pediatric Bipolar Disorder or Juvenile Onset Bipolar Disorder, a form of bipolar disorder that occurs in children. Although, he exhibited symptoms at a very young age, he was not properly diagnosed until the age of eleven. My son showed symptoms of extreme behavior and mood changes for many years prior to being diagnosed. As a parent I sought every possible cause; parenting, nutrition, seizures, vision problems? Consistently I was told by almost every mental health practitioner, "We know very little about the brain," and no one was willing or able to diagnose him sooner because childhood mental illness is a very controversial issue.

The controversy lies in the "official" diagnosis and how a child psychiatrist interprets the child's symptoms and behaviors. Even though, my son developed rages lasting over an hour within any given day, and at the young age of 5 told us that he wanted to die, he was diagnosed with ADHD, Oppositional Defiant Disorder and agitated depression. These are the disorders listed for children in the DSM and doctors prescribe adult psychiatric medication according to the diagnosis. My son's first psychiatric medication was an antidepressant. His mania worsened. Next amphetamines were prescribed. I refused. His brain was on fire. Six years was spent in this vicious circle of try another drug with severe side effects never tested on children to see if it works. When he was finally diagnosed with Pediatric Bipolar Disorder by a psychiatrist we trusted he followed a treatment plan; medication and therapy, and was mainstreamed back into classes with "normal" kids. His life opened up for him, school was easier, he made friends, we had hope.

My son lost his childhood to mental illness. Now Sam is 25 and two years ago was also diagnosed with schizophrenia. He lives at home with me. My heart aches for all of us dealing with severe brain disease and especially for those who have lost their child. 

To read more of Lynne's and Sam's story and to see her photos.
Go to http://visura.co/user/vitabrevisphoto/view/she-needs-to-beat-that-child

Photo Credit: Lynne Warberg

FIND ANY REASON by Deborah Fabos

Sometimes it can be difficult to remember that our loved ones suffer with a chronic illness. The symptoms can ebb and flow of their own accord often bringing irritability and what seems to be a harshness toward those who love them.

Living with a chronic illness myself, I can attest to the great difficulty of the most simple of tasks that normally pose no challenge at all.

The stress of the symptoms - economic hardships, isolation, and strained personal relationships -exacerbate the suffering for everyone. Staying mindful of our loved ones suffering along with attempting to maintain a healthy balance for all can be exhausting.

Try to be kind. Try to encourage. Find any reason to let them know that they are loved.

Help them find a reason to maintain the struggle.

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Photo Credit: Marisa Farnsworth

Hope you have a good weekend everybody!

HOPE IS CRITICAL - by Craig Willers

My name is Craig and I'm 53 years old. I was diagnosed with paranoid schizophrenia at 18 and later other illnesses. So, 35 years down the road, and miraculously, I'm still here.

My journey's unique and starts in my early years. I worked from the age of 17 and haven't stopped yet. I rarely call in sick for my mental illnesses except for my hospitalization at 23 (a month and a half). My hospitalization was a critical turning point in my life as I discovered (slowly) that I did feel a difference on my meds and counseling was breaking through my psychotic shell. I learned the voices aren't real and that the medications can bring my psychosis way down. I'm still sick but hope to go into remission someday.

I'm married and we'll celebrate our 25th year next August. My wife's been crucial in my support system and just happens to be a nurse (Hospice). I plan to retire from my grocery store job in early 2018 (32 years) and go into Peer Counseling if possible. I want to reach back and show others there is hope out there.

Meds and counseling definitely help but my spiritual path (Christianity) has also been a huge motivator in my life. I believe hope is critical as my life has lead me through some truly dark places and I'm still here. If you're reading this, there is hope! I don't believe I'm a special case, just unorthodox in my approach to living with mental illness.

Wishing you all the best and Aloha.

Photo Credit: Craig Willers
Craig as DJ at his most recent gig.