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.

CALL TO ACTION

This is a modified letter I’m sending to all of Oregon’s congressional leaders and State leaders.  I would urge you to do something similar if any of you are glass artists or have a glass producer in your home state.  It’s too late for WA, but not for the others.  I won’t give up.  I’m doing everything I can and so are others to save an industry.  I hope you’ll join me.

I am the owner of Mind and Soul Art.  I am not an official business.  I create art for the sole purpose of raising funds for nonprofits. You see, I live with Bipolar Disorder and Anxiety Disorder.  Glass art is a way for me to manage my ongoing symptoms of my illnesses.  Sometimes it is the only way as modern medicine has not always worked for me.  Suicide rates continue to rise across the nation and I refuse to become another one of those statistics.  I am down to three medicines left that might work for me.  The only thing that has consistently worked is my glass art.

This is why I travel over 4 hours from Port Angeles, WA to Portland, OR for the classes that Bullseye provides.  I soak up their knowledge like a sponge.  While in Portland, I stay in a local hotel for several nights.  I eat in local restaurants.  I purchase from local shops.  I spend money in your state as do other people who come from out of State for Bullseye’s educational art classes.  Bullseye is not an island unto itself.  It is a vital part of Oregon.  It is also a vital part of my life.  Without their glass, their classes, their very kind and understanding employees, I wouldn’t be able to create.  If I can’t create, I wouldn’t have an outlet for the constant battles of a Bipolar mind.

Spectrum Glass will be closing its doors after 40 years because they simply can’t bear the unknown costs of what’s to come with the new EPA regulations.  Kokomo Glass is in trouble, as well, but they have the support of their local government.  Bullseye wants to do the right thing. and has done so voluntarily. Yet, unlike the government of Indiana, the government of Oregon seems to be making it very difficult for Bullseye to comply with the DEQ, by ordering Cease & Desist orders not once but twice.  This is not an accusatory statement against Oregon; this is a factual statement.

All I ask is for your help.  Please help Bullseye have a fair chance to do their part to comply with the standards that have been set forth.  Allow them to have a fair amount of time to fix the problem areas that need to be fixed.  I urge you to step in and do something to correct this situation because it is not only good for Bullseye as a local, small business, but it’s good for the Oregon economy as well.

It is not only Bullseye that stands to lose their business, but the thousands of others that rely on their products for their own small businesses. I believe, not long ago, the auto industry and the banking industry needed the government’s help and it was given to them.  Please consider helping Bullseye by giving them a fair and equal chance.

Thank you for your time. I know I can count on your support.

 

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.

What is a Mental Health Advocate?

Well, by definition the word advocate is a verb…an action word.  It means “to speak or write in favor of; support or urge by  argument; recommend publicly”.  It goes on further to describe a person who says they are an advocate.  It says “a person who speaks or writes in support or defense of a person, cause, etc”.  Yes, I realize my teacher side just came out, but it had to.  When you call yourself an advocate of a cause, like mental illness and suicide prevention, you can’t just sit back and regurgitate some pre-written email or letter that an organization wants you send to your representatives.  It needs to come from you.  It needs to come from the heart.  It needs to be original.

I’m not condemning anyone who chooses this route.  I did it myself, but I also used it as a learning experience for when I stepped out on my own.  Some of you may have read my last blog about HR3717.  It has some good points in it, but it is very detrimental to the mental health community.  I’ve seen many people speaking out against it on some of the boards I belong to.  Yet, when I ask for help, you could hear a pin drop.  So that brings up the question of “What is a Mental Health Advocate?”.

Is it someone who blogs about it?  Well, some might argue yes.  I would say maybe.  It depends on who that blog is reaching and how effective it is at raising awareness and advocate support.  My blog? I would say not really advocacy.  I try sometimes, but people don’t want to read those.  Why am I posing this question now?  Because I’m fed up!  I’m fed up about hearing people complain about the system and then not striking when they are given the chance to do something about it.  It’s like complaining about the president when you didn’t vote in the election.

Is it someone who shares their story?  Well, that depends as well.  I’ve shared my story within the mental health and suicide prevention community to thousands of people.  I wouldn’t call this advocacy.  I’d call it more giving insight and (hopefully) giving hope.  I’ve shared my story with over 100 members of Congress.  I call this advocacy.  This is putting a real face to a real illness for legislators that previously had no clue.  It’s opening eyes.  Will it do any good?  I don’t know, but I have to try.

Is it someone who’s goes into their community and tries to educate?  I would say yes, that is advocating.  This ties into the previous description.  Sharing your story and being open about mental illness with people who don’t know is HUGE.  It’s scary sometimes, but can be so rewarding.

I’m no expert and I figure I’ll probably lose a few (if not more) readers over this, but we can’t sit back and let Congress make and pass laws about mental illness when they are truly not informed.  We are the only ones that can do that.  If HR3717 passes, I  will be very worried for the state of mental health care in our country.  It’s not that I’m trying to defeat it.  I just want to help them change it so that it doesn’t alienate us so much.  So this is my last plea.  If you would like to join with me and help, please let me know.  I have the bill summary (as the original is about 100 pages long) and a list of emails.  It’s time to make a stand and make a difference.

Thank you for reading…I hope you will continue to do so.  🙂

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.

Just One Question

What is the best experience you’ve have had since you’ve been diagnosed with a mental illness?

We always hear about the negative side of mental illness.  What went wrong in our lives.  What bad things we did.  I want to focus on the good.  There is a good side to these illnesses.  As much as can go wrong, so much good can be gained from them.  So, yes, even I will start with the bad, but only emphasize the good the has happened.

For me, I would have to say my good experience has been finding my courage and my voice.  For some reason, after my diagnosis I really started to see, unfortunately first hand, how those of us with a mental illness can be so mistreated and feared.  I lost friends of my children because the parents didn’t understand.  I lost out on jobs.  I was treated just appallingly in ER’s when I would try to seek help.  I almost lost my family due to lack of education and understanding of my illness. 

It did take a few years of hiding (and I was very good at hiding), but I finally found my strength.  I finally started to see that having Bipolar Disorder was not necessarily the end of me.  It didn’t have to be that way.  I could change that.  I thought, if I could change my view of the illness, well then why couldn’t I help other people change theirs?  So, I began to share my story.  This was one of the most nerve racking experiences of my life.  I had no idea how it would be received.  I was surprised to find the amount of support that I did.  Yes, there were the occasional ignorant comments, but I learned to just ignore those.  There more positive reactions to my story than I ever thought possible.  I had people come up to me that had lost someone to suicide and thank me for sharing.  They said my story helped them gain a glimpse into what their loved one may have been going through.  It gave them a little bit of understanding and said it would help them in their healing process.  That was HUGE for me.  I had no idea my story could do that for someone.  The more people came up to me, the more I knew that what I was doing was making a difference.  I remember sharing my story at a military base.  For some reason, I was just more nervous than usual that day.  After I was done, a soldier pulled me aside and told me that he had been feeling suicidal.  He hadn’t said anything to anyone because he didn’t think they’d understand and he thought he was alone in this.  After hearing me speak, he realized that he wasn’t alone and wanted to get help.  We talked for a bit.  I gave him my number in case he ever found himself in that place again and needed to talk to someone who had been there.  I also gave him some resources he could go to off base.  I saw him at another event later in the year and he told me that he was getting help and really felt like he was going to make it.  Again, the power of sharing your story is amazing.  I was almost so nervous that day that I didn’t get up and speak.  I am so thankful that I did.

So, it’s not just through sharing my story that I have found confidence, I have also found confidence and a voice in working with my legislators, both local and national.  I feel as though Congress is just now starting to understand the severity of the mental health care situation.  They just lack the first hand knowledge of it to really know if any of the bills they are proposing will work in the real world.  So, I am more than happy to meet with them, share my story, my experiences, those experiences of others (with permission) to inform them, to help shape legislation.  If you would have told me about 10 years ago that I’d get such a high because I had a personal meeting with a congressional member, I would have said “You must be smoking wacky weed”.  I never really had much interest or faith in politics, but I’ve seen first hand what the power of a story and a voice can do.  It is possible to make a difference on a legislative level.  Sure, you’ll run into the ones that are only out to make a name for themselves and really don’t care about the subject, but there are those gems that do care.  They may still be out to make a name for themselves, but in the end as long as the right legislation is passed…well it doesn’t matter who gets the credit.

I would really like to hear from you on this post.  I want to start a positive chain of events for mental illness.  People need to see and hear about the good that is being achieved by through those of us with mental illness.  Let’s stop dwelling on the negative and start focusing on the positive and what we can do.

Thank you!