How does stigma affect you? Updated

The recent election has caused some concern for me, but not just for the fact that government is now under one political party.  Now this post is not going to be a rant on the recent president-elect.  I feel everyone is entitled to their political beliefs.  My concern is for an initiative that passed in my state that will take away my right, as person living with a mental illness, to own a gun.  Now, I have no desire to own a gun, but it’s just one more right that is being taken from me.  My problem with this initiative is that had it been written without specifically mentioning “people with mental illness”, I could have voted for it.  The idea behind the initiative was to prevent people who are of harm to themselves or others from obtaining guns, but then they specifically mentioned people with mental illness.  This is not only discriminatory, but extremely stigmatizing.

People with mental illness account for about 1% of the gun violence nationwide (US).  This bill directly targets those of us living with mental illness.  This may be a bit of paranoia speaking, but I feel it is opening the door for further legislation to take away more of our rights.  First, it was HR 2646 that was trying to take away our HIPPA rights…now this.  What’s next?  In either of these two cases, had the language of the legislation mentioned people of a specific nationality, physical illness, or race, they would not have flown under the radar as they have.  I feel as though we are second class citizens in our own country.  I have a strong feeling this is not isolated to just our country.  I could be wrong.  I still have more research to do.

Now to my question:  How does or has stigma affected you?  I’ve tried to explain why the passage of this initiative made  me so upset to others, including my own family.  People just don’t understand.  They care, but they can’t understand unless they are a target of stigma.  So, how would you explain it so that someone could begin to understand it even a little bit?  I would love to hear from you.

UPDATE: I just watched an interview onTF1 with someone that escaped the Batclan 1 year ago. He looked into the eyes of one of the terrorists. That horrible person spoke to this witness and laughed. It made me think back to this initiative. How will this initiative preventive religious and political fanatics from acquiring guns? It won’t.  It targeted the mentally unstable, not the fanatical.  Think about that.

Don’t Ever Give Up

Hello my friends!

I know it has been quite some time since I have written in this space.  I have been busy starting my art business, Zarit Glassworks (shameless plug, I know.) and trying to get my migraines under control.  I have also been hard at work with mental health advocacy.  I have never stopped that.  It has and always will be a passion of mine.  I may take a break from time to time as needed, but I always come back.

Well, today, I and a few others met with two of  Senator Murray’s staff members for two hours.  We were able to share our stories, our experiences, our concerns about mental health care reform, our concerns about current/future policies.  It was wonderful!  It was an incredible opportunity.  It was something I never thought would be possible on my own without the backing of a large organization.  I’ve never made it a secret that I parted ways with AFSP.  However, I harbor no ill feelings toward them at all.  We may have a difference of opinions, but without them I would not have the voice I have now nor the advocacy skills I possess.   In fact, I even advocated for their Centers of Excellence today because that is one of their lobbying points that I happen to agree with.  I still direct people to them for support and I even help people with fundraising for them.

Anyway, I’m not sure what the outcome will be of today’s meeting.  One thing I do know for sure, it felt great to have the ear of the highest ranking member of the senate.  Even if nothing comes of today’s meeting, I can rest easy now.  I know in my heart that I have truly done my best.  I can now get off my soap box about HR 2646.  I believe our HIPPA rights will be fine.  I know CIT for first responders is going to be alright.  I know Congress has been educated by people living with mental illness.  I know I have been heard.  What more could I ask for?

I can’t control what Congress will or won’t pass.  All I can do is try to educate people and hope it makes a difference.  For those of you that sent me your vignettes in the past, they made it to Congress.  They were read.  They would like more.  Please feel free to send me more.  I am happy to pass them along.  My email is bravelybipolar@gmail.com.  Just keep it to one page in length.

I will try to write more often.

Thank you for your support and thank you for reading.

Advocacy in Action

I blogged numerous times about my advocacy efforts.  I have complained about how hard it has been to go out on my own since leaving a national nonprofit.  Well, today I am here to tell you that it can be done!  One person can do it.  It takes a lot of time, patience (which I really do not have) and determination (I do have that).

If you will recall, I made several posts asking for you to send me your experiences living with mental illness so I share them with Congress.  I had a grand plan of having a round table discussion with a few members.  Well, the round table discussion did not happen.  What did happen was this.  I began calling each of my State members one by one for meetings.  I was only able to get one meeting, not even with my one Rep.  To be fair, that one was my fault.  I had already met with him personally and they wanted me to meet with a staffer.  I felt offended.  I have no idea why.  I’ll chalk that one up to Bipolar.  Any way, the one I met with really listened.  This has turned out to be a great working relationship with his local staffer. She has kept me informed on legislation and helped me get a meeting with one of my Senators…well the legislative aide.  And here is the rest of that story:

I had a meeting with my Senator’s legislative aide and it was absolutely wonderful. I told her of my concerns about Rep. Murphy’s bill (HR 2646). You know that fact that it will violate HIPAA laws and that of the 5 committees it forms, only one has a person with a mental illness on it. Oh, and that committee has NO power to do anything! Also, he’s getting rid of SAMSAH (I know the H is the wrong spot). I also talked to her about the partner bill in the senate (S.2680). The main problem with that one: HIPAA violations. She really didn’t think Sen. Murray would let anything pass with HIPAA violations. She also agreed with me that HIPAA violations would not prevent another Sandy Hook as Rep. Murphy is hoping. I felt so reassured. She actually agreed w/ me the correct statistic that people w/mental illness account for 1% of the violence nation-wide. Finally, someone who understands!

Anyway, as we left it, I will be asked to speak to committees and both of our Senators’ about living with mental illness. Now, will any of this change Murphy’s bill? I don’t know, but it might help change that senate bill. At least my voice, and others because I brought those stories I asked for months ago, were finally heard.

All in all, a good day. I even talked about the plight of Bullseye because art is a form of therapy. I gave her my letter that went to Oregon rep. as well. Not bad for being with a nation nonprofit anymore. I’m finally able to speak freely about what it is really important….preventing suicide and helping people like me, people living day in and day out with an illness of the brain

The moral of my story is this: Keep trying.  You will be heard.  My State senator is the highest ranking member of the senate and now our letters are firmly in her hands.  Our voices have been heard.  What will come of this?  I don’t know.  All I know is this:  I didn’t give up even when I so desperately wanted to.  So to all of you, please don’t give up either.  Keep writing your members of Congress.  I will help you if you need help. I will give you guidelines for writing an advocate letter, timeline for sending and re-sending letters and help with phone/in-person meetings.  Just don’t give up.  The more of us that do this, the louder our collective voice will be.

What will your mark on the world be?

 

To be one, to be united is a wonderful thing. But, to respect the right to be different and the rights of your fellow-man is even better.  We are here for a fleeting moment.  What will you do with your time?  For what do you want to be remembered?  What mark will you leave on the world?

I have always wanted to take on the world and help others when I could.  This has not always met with kindness.  Yet, I don’t give up.  Some have questioned my motives, thinking I do this to as a means to gain attention…not so; others think I do this for personal gain, not so.  I choose to help others because I want to.  Also, because when I was at my lowest point, someone was there for me to lend a hand.  Someone cared enough (without knowing who I was) to show me kindness, to tell me I was worth something and that I was somebody.  I know how that kindness feels and how that kindness can change a person.  I want others to feel that as well.   I see it as a gift I am allowed to give another human being.  It brings me great joy. I don’t see it as penance, for I have done nothing wrong.  I have a mental illness and I have those low times where I need help.

I don’t how much time I have left on this earth.  What I do know is that I want to make every moment count.  So I focus my time on my family and friends.  I also try to help as many people as I can.  The way I do that is through my art (stained and fused glass art).  As many of you know, it is my art that helps me control my Bipolar and Anxiety symptoms (yes, I do still take medications).  As many of you also know, sometimes medication isn’t enough.  My glass art has saved me so many times.

Now, the main supplier of my glass, Bullseye Glass (and the glass industry at large) is under attack (for lack of a better word).  I go to Bullseye for classes to learn new techniques and I absolutely love the employees there.  They are kind, knowledgeable and they put up with my craziness!  I remember the first time I went there for a class.  Oh my goodness!  I’m sure they had never met someone quite like me.  I just asked a ton of questions.  I think I was there for three hours and this was the day before the class!  I was picking out glass, asking questions about how to make projects,  questions about the sale in July, my goodness the questions from me seemed never to stop.  They were very kind to me.  Every time I call in, they seem to remember me.  I don’t know if they really do, but they play it off  well.  I’ll take it!  🙂  Anyway, I think you get my point.  They really care.  So, I won’t go into detail about what the State of Oregon is doing to them because I don’t have all of the facts and I don’t want to spread more rumors.  The one real fact is this:  Their business is threatened.  This effects not only Bullseye and it’s employees, but thousands of glass artists world-wide.

So, back to my original question: What mark do I want to leave on the world?  I’ve already established that I like helping others.  I know it goes beyond “like”.  I feel compelled to help others.  It’s become a part of who I am. Since this all happened with Bullseye, I’ve gone into full advocate mode sending out congressional contacts to concerned glass artists, working on a form letter (which must be cleared with Bullseye), fundraising mode to help them…  The mark I would like to leave on the world is this:  Whether I am remembered or not is immaterial.  What is important is the work I do.  If I have made the lives of people better, happier, easier, then I’ve made my mark.  The world doesn’t need to remember me, I will just feel better knowing that I’ve made some kind of difference.

I will leave will you with your own question and yes, I would really like to hear from you.

What mark would you like to leave on the world?

The President “Responds”!

Okay, now I support the President, but I’m not a fan of everything he has done over his two terms.  What President has done everything perfectly well throughout their term?  Anyway, he has done tremendous things for mental health.  For instance, he finally fully enacted Patrick Kennedy’s Mental Health Parity Act of 2008.  So, kudos.  I decided to write him and ask for a meeting. Yes, I know I had a snowball’s chance in hell of actually getting that meeting.  If I didn’t ask, then I would never get it.  I knew this meeting was never going to happen, but in that letter I also let him know what it was like for those us living with mental illness. What it’s like navigating the mental health care system.  The stigma we face in the workplace, home, hospital, school…   I thanked him for what he had done so far.  I urged him to continue to do more.  I did explain that I was also an advocate.  How I have actively helped pass laws locally and nationally.  How I’ve worked with soldiers on and off military bases.  How I work with students.  This was the response…

Dear Susan:

Thank you for writing.  I have heard from many Americans whose lives have been affected by mental health problems, and I appreciate your taking the time to share your thoughts.

As you may be aware, in any given year one in five adults experiences a mental illness such as depression, anxiety, bipolar disorder, schizophrenia, or post-traumatic stress, and many others are troubled by significant emotional and psychological distress—especially in times of hardship or difficulty.  They are our family members, friends, and neighbors, and I believe there are things we must all do to help.  As a Nation, we can strive to eliminate the barriers that still keep people from accessing life-changing treatments.  We can also make sure every person struggling with psychological and emotional pain knows that asking for help is not a sign of weakness—taking action is a sign of strength.

My Administration has worked hard to help increase mental health services and improve access to care.  We are working with community health centers to expand the availability of behavioral and mental health services across the country, including in rural areas.  And thanks to the Affordable Care Act, over 60 million Americans now have expanded mental health and substance use disorder benefits and parity protections.  This law also prohibits insurers from denying coverage because of pre-existing conditions like a diagnosis of mental illness, and it requires most insurance plans to cover recommended preventive services without copays.  Additionally, as part of the BRAIN initiative, we are supporting innovative research that aims to revolutionize our understanding of how the brain works and uncover new ways to address conditions like depression.

We continue to support our troops and veterans.  I signed the Clay Hunt Suicide Prevention for American Veterans Act on February 12, 2015, which authorized additional steps to address mental health and prevent suicide.  The year before, I announced 19 Executive actions that make it easier for members of our Armed Forces and veterans to access the care they need, when they need it—including a new policy that will ensure the continuity of medication for mental health problems as service members transition to care at the Department of Veterans Affairs (VA).  The VA has also worked to increase mental health staffing, enhance community partnerships, and expand the capacity of the Veterans Crisis Line.

To learn more about mental health assistance and health care reform, please visit www.MentalHealth.gov or www.HealthCare.gov.  Calling 1-800-662-HELP is also a free, confidential way to receive a treatment referral or further information. 

Again, thank you for writing.  Michelle and I—like so many Americans—have known people who have experienced mental health problems, and we understand the effects these illnesses have on their lives and on their families.  We must continue to work toward better prevention and treatment, and as caring individuals, we must do what we can to ensure those with mental health issues get the care and support they need and deserve.

Sincerely,

Barack Obama

I do realize that the President did not write this email to me.  I also realize that the person who did, obviously did not read a word of the letter I sent.  Yes, I snail mailed a letter…the old fashioned way.  Although I did expect this, I am a bit saddened by it.  As an advocate, I am well aware of all the stats.  I certainly don’t need to learn to go the .gov sites.  I didn’t expect the President to actually read the letter, but at least a staffer would have been nice.  I know I’m no one important.  I don’t have that much of an inflated ego.  It’s just interesting.  Imagine if we all wrote letters and sent them on the same day.  I wonder if we would all get the same response or if someone would actually take notice.  Hmmm.

*Please do not make any negative political comments.  I know not everyone is a fan of the President.

Murphy’s Rotten Bill

To give you some background, I was in the process of getting a phone meeting with Rep. Murphy.  His scheduler then decided he was fully booked…Really? Too busy for a 10-15 minute conversation?  So I’ve been passed off to his Senior Legislative Aide, not even his Chief of Staff that deals with policies.  This aide assures me that he will put what I write on Murphy’s desk. Murphy gets plenty put on his desk, do you really think he’s going to see this let alone respond to it.  If he is too much of a coward to speak with someone who has a mental illness in person, then why would he respond to my letter?  Oh, ya…I am also sending it to all 108 co-sponsors as well.  I told them that all I wanted to do was bring both sides to the table. Apparently this is a sticking point.  Below is a summary of the bill (the original is about 100 pages) and in bold are my ideas.  I’d love to get your opinion.

Helping Families in Mental Health Crisis Act of 2013 – Creates in the Department of Health and Human Services (HHS) an Assistant Secretary for Mental Health and Substance Use Disorders, who shall supervise and direct the Administrator of the Substance Abuse and Mental Health Services Administration (SAMHSA).

Why mess around with SAMHSA? It’s running fine on it’s own. By implementing your agenda, you are endangering wonderful programs such as The Trevor Project that rely on SAMHSA.

Directs the Assistant Secretary to establish a National Mental Health Policy Laboratory to: (1) identify and implement policy changes and other trends likely to have the most significant impact on mental health services; (2) collect information from grantees; and (3) evaluate and disseminate to such grantees evidence-based practices and services delivery models, using the best available science shown to reduce program expenditures while enhancing the quality of care furnished to individuals by other such grantees.

This National Mental Health Policy Laboratory is NOT necessary. What we need is accountability for those already working in the field. This will vastly increase the quality care that patients receive. We also need to provide access to residency positions for new psychiatrists. If we can do this, it would greatly improve the amount of psychiatrists available to treat people and it would force those already practicing to improve how they practice.

Amends the Public Health Service Act (PHSA) to require the Assistant Secretary to establish: (1) an Interagency Serious Mental Illness Coordinating Committee; and (2) a four-year pilot program to award up to 50 grants each year to counties, cities, mental health systems, mental health courts, and any other entities with authority under state law to implement, monitor, and oversee assisted outpatient treatment programs.

Who decides what is a “serious mental illness”? As a person with Bipolar Disorder and Anxiety Disorder, I would consider these to be serious mental illnesses. They are quite debilitating. Every mental illness has the potential to become extremely serious. The wording needs to be changed to just say “mental illness”. As a psychologist, you should know not to exclude anyone; this only adds to the stigma we are trying so hard to fight.

Directs the Assistant Secretary to establish a program of tele-psychiatry and primary care physician training grants to states to promote the use of qualified telehealth technology for the identification, diagnosis, mitigation, or treatment of a mental health disorder.

Tele-psychiatry is already in use.

Directs the HHS Secretary (Secretary), in coordination with the Assistant Secretary, to award planning grants to enable up to 10 states to carry out 5-year demonstration programs to improve the provision of behavioral health services by federally qualified community behavioral health clinics.

Why only 10 states when it is the entire nation that is in desperate need of a complete overhaul of the community mental health system Also, How are these states chosen? What happens after the 5 years? Are programs abandoned or are they then implemented throughout the US?

Requires the Assistant Secretary to certify federally qualified community behavioral health clinics that meet specified criteria.

This sounds good, but what are those criteria. For instance, my local county behavioral health clinic is in desperate need of intervention. They treat their clients like numbers. They don’t listen to them. You can hear staff talking about them. These are the experiences of friends and students that are forced to go there because they don’t have private insurance.

Requires the caregiver of an individual with a serious mental illness to be treated as the individual’s personal representative with respect to protected health information, even though the individual has not consented to disclosure of such information to the caregiver, when the individual’s service provider reasonably believes it is necessary for protected health information to be made available to the caregiver in order to protect the individual’s health, safety, or welfare or the safety of one or more other individuals.

I cannot say enough about what a mistake this would be to allow this to remain in the bill. I understand why it’s there, but our privacy in our sessions is sometimes all we have. Please do NOT give away our right to privacy. This will cause people to either leave treatment or not go in the first place. If they choose to remain in treatment, they will not be as forth coming with information and this will severely hinder their treatment and thus any hope of recovery. We’re not treated very well in ER’s. We face stigma on a daily basis, sometimes from our own family. Even in treatment centers, we’re not treated as human beings. So, our private conversations in our sessions are sometimes all we have.

Amends the General Education Provisions Act to allow an educational agency or institution to disclose to such a caregiver the individual’s education record in certain related circumstances.

Same as I just stated above.

Amends the Omnibus Crime Control and Safe Streets Act of 1968 to make available: (1) Edward Byrne Memorial Justice Assistance Grants for mental health programs and operations by law enforcement or corrections officers, and (2) public safety and community policing grants to provide specialized training to law enforcement officers to recognize and intervene properly with individuals who have mental illness.

This is excellent. We have CIT training in my town and it has greatly reduced the number of deaths by suicide. It’s nice to have an officer meet with someone with a mental illness and they “pick each others brains” so to say. They can let each other know what will and won’t work in mental health situations. This is what I’m trying to do with you.

Reauthorizes and revises requirements for the Mentally Ill Offender Treatment and Crime Reduction Act of 2004.

I would just like some clarification on what they are.

Authorizes the Attorney General to award grants to: (1) establish or expand veterans treatment court programs; and (2) enhance the capabilities of a correctional facility to identify, screen, and treat inmates with a mental illness, as well as develop and implement post-release transition plans for them.

This seems good to me.

Requires any data prepared by or submitted to the Attorney General or the Director of the Federal Bureau of Investigation (FBI) with respect to homicides, law enforcement officers killed and assaulted, or individuals killed by law enforcement officers to include data about the involvement of mental illness in such incidences, if any.

I’m not too sure about this one. This paints us in a very violent light and we really aren’t that. We are more likely to be the victim of a crime than a perpetrator. We only account for about 1% of all the violent deaths nationwide. To more accurately get a picture, we need NVDRS in every state. That would give you the information you’re looking for.

Directs the Comptroller General (GAO) to detail the cost of federal. state, or local imprisonment for persons who have serious mental illness.

Amends title XIX (Medicaid) of the Social Security Act (SSA) to prohibit a state medical assistance plan from prohibiting payment for a same-day qualifying mental health service or primary care service furnished to an individual at a federally qualified community behavioral health center or a federally qualified health center on the same day as the other kind of service.

Allows states the option to provide medical assistance for inpatient psychiatric hospital services and psychiatric residential treatment facility services for individuals age 21-65.

Amends both SSA titles XIX and XVIII (Medicare) to cover prescription drugs used to treat mental health disorders.

Amends the PHSA to increase funding for the brain initiative at the National Institute of Mental Health.

Transfers responsibility for the administration of community mental health block grants to the Assistant Secretary from the Director of the Center for Mental Health Services (CMHS).

Revises requirements for the funding agreement under a formula block grant to a state for community mental health services to prescribe the general standard under state law for court ordered inpatient or outpatient mental health treatment as well as assisted outpatient treatment.

This is another sticking point for me. Forced treatment rarely, if ever, has a lasting effect. The decision to be treated has to made by the patient. I know this was put in for family members of adult children with mental illness, but I’ve spoken with so many people across this country that agree with me. They’ve forced their loved ones into treatment only to have them relapse very soon after release. That decision for treatment is tough because we (those with mental illness) know that it is something we must do for life. The meds are for life. The therapy is for life. The constant use of coping skills is for life…. The list goes on. These are life long illnesses and we have to have some control, some say in it because we have no control over the illness itself.

Requires the Assistant Secretary to evaluate the combined paperwork burden of certain community mental health centers as well as of certified federally qualified community mental health clinics.

Directs the Secretary of Education, along with the Assistant Secretary, to organize a national awareness campaign to assist secondary school students and postsecondary students in: (1) reducing the stigma associated with serious mental illness; (2) understanding how to assist an individual demonstrating signs of a serious mental illness; and (3) understanding the importance of seeking treatment from a physician, clinical psychologist, or licensed mental health professional when a student believes the student may be suffering from a serious mental illness or behavioral health disorder.

Amends the PHSA to include as health care providers any behavioral and mental health professionals, substance abuse professionals, psychiatric hospitals, certain community mental health centers (including one operated by a county behavioral health agency), and residential or outpatient mental health or substance abuse treatment facilities.

Amends SSA title XVIII (Medicare), with respect to incentives for meaningful use of certified electronic health records (EHR) technology under the pay schedule for physician’s services, to include as additional eligible professionals clinical psychologists providing qualified psychologist services and clinical social workers. Subjects any additional eligible professionals, including those under a MedicareAdvantage (MA) plan, to reductions in incentive payments after a certain date for failure to be a meaningful EHR user.

Amends SSA title XIX (Medicaid) to treat as Medicaid providers the following additional Medicaid providers: (1) public and certain private hospitals that are principally psychiatric hospitals, (2) certain community mental health centers, and (3) certain residential or outpatient mental health or substance abuse treatment facilities.

Just an FYI here: Medicaid will pay for an ambulance if you are involuntarily committed. If you are seeking help and want to voluntarily commit yourself, they won’t cover the ambulance ride. I think this needs to be changed.

Makes eligible Medicaid professionals certain clinical psychologists providing qualified psychologist services and certain clinical social workers.

Amends the PHSA to accord health care professional volunteers at community mental health centers and federally qualified community behavioral health clinics the liability protections of Public Health Service employees.

Requires the Assistant Secretary to transfer all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory.

Revises the duties of the CMHS Director.

Reauthorizes the Secretary’s authority to address priority mental health needs of regional and national significance.

Amends the PHSA to reauthorize and revise requirements for a youth interagency research, training, and technical assistance center to prevent suicides (the Suicide Prevention Technical Assistance Center). Expands the program’s focus from youth suicides to suicides among all ages, particularly among groups that are at high risk for suicide. Repeals authority for grants to establish research, training, and technical assistance centers related to mental health, substance abuse and the justice system.

Reauthorizes a program of grants for the development of state or tribal youth suicide early intervention and prevention strategies.

Reauthorizes and revises a grant program to enhance services for students with mental health or substance use disorders at institutions of higher education. Requires the Secretary (who currently is merely authorized), acting through the CMHS Director, to award grants to enhance such services and to develop best practices for the delivery of such services. Permits grant funds to be used for the provision of such services to students and to employ appropriately trained staff. Requires the Secretary to give special consideration to applications for grants that describe programs that demonstrate the greatest need for new or additional mental and substance use disorder services and the greatest potential for replication.

Requires the Assistant Secretary, before making a grant to a public entity for comprehensive community mental health services to children with a serious emotional disturbance, to consult with the Director of the National Institutes of Health (NIH) to ensure that the grant recipient will use evidence-based practices. Reauthorizes funding for such grants.

Repeals current authority of the Secretary to carry out directly or through grants, contracts or cooperative agreements with public entities a program to assist local communities in developing ways to assist children in dealing with violence.

Reauthorizes the National Child Traumatic Stress Network. Amends the Protection and Advocacy for Individuals with Mental Illness Act to reduce corresponding funding for protection and advocacy systems for mentally ill individuals.

Prohibits lobbying by any such systems accepting federal funds to protect and advocate the rights of individuals with mental illness.

Does this mean Congress will do the same for all other organizations whose lobbyists receive federal funding? I think you ought to take a look at that.

Prohibits the SAMHSA Administrator from hosting or sponsoring any conference that will not be primarily administered by SAMHSA without giving at least 90 days prior notice to specified congressional committees.

Prohibits the SAMHSA Administrator also from establishing (and the Secretary from delegating to the Administrator responsibility for) any program or project not explicitly authorized or required by statute. Terminates by the end of FY2014 any SAMHSA program or project not so explicitly authorized or required.

Another Sleepless Night

My pdoc has given me enough medication that I should be sleeping soundly through the night.  Well, instead I start to fall asleep about 6pm (before I take my bedtime meds).  As per usual, last night I fell asleep around 6pm until about 8pm.  I got up  and took my bedtime meds.  I had a bit of a second wind…well until my husband gently shook me and told me to head up to bed.  I had such hopes of sleep.

This is about the third night in a row that I’ve woken up around 2am or 3am.  This is not a good sign. This could be a pre curser to mania.  I’m usually waking up because my mind is racing (I’m taking so much Clonazapam that this shouldn’t happen) or I’m waking up with migraines.  Again, this shouldn’t be happening either.  Oh ya and I’ve gained 10 pounds since I started taking all of these medications despite watching what I eat and using Myfitnesspal.com.  This is the point I usually just want to give it all up…give up the meds because they just don’t seem to be working right and the side effects are just brutal.

I’ve done this dance with pdocs for so many years.  I’m just so tired of it all.  I feel as tough I’m just existing right now…what kind of life is that?  I know nothing is perfect, but after all the years I’ve been trying to achieve some sort of semblance of “normal” and it I’m still no closer to it.  I apologize to my children constantly that I’m not that “normal” mom; that I’m the mom that has to get ECT; that I’m the mom that has to have so many appointments and still things aren’t as I feel they should be.  They just smile and say “I love you”.  I know they do, but I just feel so bad.  I feel like my disorders have robbed them of so much.  Apparently, I’m getting louder and louder in public when something happens that I don’t agree with…I don’t even know it’s happening.  My children just take in stride.  They are awesome.

Some people would say well why don’t you just make your mind up to be well and you will be.  Those people I just want to smack across the face.  Don’t you think I would if I could?  I can no more choose what happens with my disorders than I can choose the color of my eyes.  My disorders (while they don’t define me) are a part of me.  They have opened doors and shut others, but they’ve opened more than they’ve shut.  I know that sounds strange.  It’s helped me realize who my true friends are and that’s been very valuable.  It’s also allowed me to help others.  I guess I just need to help myself now.

How Many Tattoos Do You Have?

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As of today, I have five.  Do I regret any of them?  No!  I’m fairly certain that I was in a manic state for most, if not all of them.  Somehow, I was able to find good tattoo artists and create tattoos that had meaning for me.  My latest one (in the picture), probably has the most meaning for me.  Well, besides the one I have with the names of my children.  That one is very special to me.  The one I posted here represents my journey/battles (I hate to use the word struggle.) with Bipolar Disorder.  The Phoenix represents the disorder pulling me in one direction.  The anchor wrapped around a cracking heart represents my family being a grounding force for me.  The cracking heart is me.  Being pulled in so many directions on a constant basis has me cracking at the seams, but NOT breaking.  This is also my first visible tattoo.  So, it is a conversation starter and that was intentional.  Whenever people see a tattoo, they want to know the meaning behind it.  I’m more than happy to tell them.  Hey, once you’ve shared your story with a couple thousand people, one or two is no big deal.  So far, the responses have been fairly positive.  Like, “I have that too”, “I have depression”, “I lost someone to suicide”.  I know an unfavorable will occur at some point.  I need to prepare myself for that.  Maybe I’ll just chalk it up to ignorance and use it as learning experience for that person.  Who knows?

I do have a funny story about my first tattoo.  It sort of sounds like a joke… It’s starts off with seven drunk housewives walk into a tattoo parlor…  I kid you not!  Some friends I’ve had for many, many years and I were having some drinks before we went in to see a movie.  Well, we got to talking and the subject of getting a tatto came up.  I pretty sure I brought it up.  So, we went.  Don’t worry, the sober housewife drove.  Up to that point, it was one of the craziest, most impulsive things I had ever done.  (Unfortunately, other shenanigans have followed throughout the years.)  It was also the most amazingly fun time we had together.  It was a great bonding experience that we still talk about to this day over a decade later.

So, my questions to you are:  If you have any tattoos, did you get them in a manic state?  Do you regret any of them?  Would you be willing to share your experience, picture of the tattoo, etc?  I would love to hear from you.

“Be Brave with your Life”

Okay, I can’t take credit for the title of this blog.  It’s an anonymous quote I found on Pinterest.  That being said, it just spoke to me.  “Be Brave with your Life”!  Imagine if we all took that to heart, just imagine the things we could accomplish.  So many people when they first receive their diagnosis of Bipolar, Major Depression, Schizophrenia, whatever it is tend to go straight to the “Why me?” stage and immediately start to play the victim.  Now I’m not saying that’s everyone, so please don’t think that.

I know for me, when I heard the words Bipolar and GAD, I was a bit relieved. I finally knew what was going on with me, however, I was not ready to shout it from the roof tops.  I knew the diagnoses as did my husband, but I was NOT ready to admit them to anyone else.  This is a bit of the victim part I was writing about. I was afraid of what others would say or do, how they would treat me, would they still want to be around me and be my friends?  It took a few years for me to be open with friends and family.  I found that once I discovered my courage and was “Brave with my Life”, that a whole new world opened up to me.  A world where I willingly told my story to others and it actually helped them.  A world where I found others like me and we have become life long friends.  A world where my voice can make and has made a difference.

I feel like I’m babbling a bit in this post, but I just want people to make the most of their lives. So we have a mental illness, it can be an incredible strength for good if you let it. There is so much more that we can do than we can’t. I say focus on what you can do, want to do and do it well. Don’t let the “stigma” be a deterrent. Use it as a driving force to show the world how great we are. When you see bad portrayals of people with mental illness played out in the media, write them and educate them. When you hear about a bill that you feel will do more harm than good, write your Congressional leaders. Let them know. When you hear someone making a joke about mental illness, correct them. Let them know that it’s not okay. Even if the person making the joke has a mental illness, it’s still not okay.

Okay, I feel like I’ve been on my soapbox long enough. Just be brave with your life. You can accomplish so much!

“To have Bipolar Disorder or to be Bipolar”

The 1st night of my support group, that I had to drive over 60 miles to get to (that was the closest one), I was amazed by how many people that were there.  There had to be at least 20.  So the facilitator, who has become a good friend of mine (we’ll call her “R”), started off the group by having us go around the room and introduce ourselves, say what disorder we had, and how our week went.  (It was a weekly meeting.)  

She finally gets to me and I have heard many people say “I have bipolar, I have depression, I have schizophrenia…”, but it didn’t really register with me.  So, I begin by saying that I’m Susan and I’m Bipolar. My week…  Before I could finish, “R” has interrupted me (and to this day I am so very grateful for this) and says to me, “You HAVE Bipolar Disorder.  You are not your illness.  It is a part of you.  It is something you have.  It does not define you.”  I may be paraphrasing (it was quite a long time ago), but the main idea is the same.   I am not defined by my mental illness.  This has stuck with me for many years and is something I pass on to others whenever I hear someone say “I am Bipolar”.  NO, you have Bipolar Disorder.  “I’m depressed.” NO, you have depression.

By saying we are our mental illness, we let it define who we are.  At that point, the illness takes over and for me that just isn’t an option.  Our mental illness is just one of the many things that makes us who we are.  Whether we are proud of it or want to hide from it, it is a part of us.  Once we accept this, we can truly begin to explore all the possibilities it has to offer.  

Yes, you read that right…possibilities.  I look at my mental illness as an opportunity to educate people that we are just regular people and not to be feared simply because we are “mentally ill”.  Because we all know how the media loves to portray us.  It’s an opportunity to educate legislators (state and national) on what policies would actually work in the world of mental health care and suicide prevention.  It’s an opportunity to reach out  to people who have lost someone to suicide and give them a glimpse of what their loved one may have been feeling.  To help them in the grieving process.  It’s an opportunity to speak to someone who is newly diagnosed or maybe not even diagnosed yet and assure them they are not alone.  There are so many opportunities available to us.  We just have to reach for them and start achieving them.

Now, I know having a mental illness is not all sunshine and roses.  That’s not at all what I’m trying to say.  I’ve known those deep, dark days where it never seems like any light can penetrate it.  I’ve been to the abyss and almost not made it back.  There is a real danger to mental illness.  My point is that acceptance and perception can go a long way to improving those dark days.  By accepting what we have and realizing we are not our illness, being willing to be our own advocate and an advocate for others, our perception of the illness can begin to change.

I keep very busy with advocacy and suicide prevention work.  I still have my dark days, but I push on (as I know we all do).  The whole point of this is that “the being bipolar” tends to pigeonhole us into a label which can victimize us.  I don’t know about you, but I’m certainly no victim and others I know are not as well.  By saying “I have bipolar”, this allows us to take ownership of the illness.  To relegate it to just being a part of us and not the whole of us.

I’ll leave you with a couple quotes:

“I HAVE Bipolar Disorder.  I am NOT Bipolar.  I am NOT my illness.  My illness is PART of me.” – Anonymous

“I’m more than you know
I’m more than you see here
I’m more than you let me be
I’m more than you know
A body in a soul
You don’t see me but you will
I am not invisible
I am here”

-U2