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.

Sanity Break

I haven’t written in quite some time.  I took an unintentional break from blogging.  I won’t go into a ton of detail as it is private, but not bad.  So here goes…

I titled this post “Sanity Break”, but I did not lose my sanity.  I will admit…I was under a tremendous amount of stress.  I decided that I needed to get away for awhile by myself.  I needed to sort through some of my thoughts, emotions, behaviors, just everything.  So, I went to Ireland.  Isn’t that what everybody does?  (insert sarcasm)  I needed to reconnect with a very dear friend I made back when I did charity work for Chernobyl Children’s Project (now Chernobyl Children’s International).  I was there for a week and it was wonderful!  I saw parts of Ireland that tourists don’t see.  I have been before and seen the touristy bits.  I just wanted to explore, work on my book, and think.  Well, I explored.  I didn’t write.  I didn’t do much thinking and that was okay.

This trip was just what I needed.  For an entire week, my mind was devoid of racing thoughts, actually any thoughts at all.  All of my anxiety was gone (expect the usual anxiety before a plane ride).  So, except just before each plane ride, I did not take any anxiety medication at all on this trip…none!  This never happens.  It was wonderful!  What it taught me was a peaceful mind is achievable.  I’m not saying you have to go to Ireland to get it.  I do think a get away by yourself is a wonderful idea, even if it’s just the next city over or a few blocks away.

I do understand that finances can be an issue.  Camping is a great option and can be relatively inexpensive.  You can always stay with a friend.  The important thing is to remove yourself from your environment that is causing the stress.  If an overnight is not possible, try getting away for a few hours.  Plan a nice picnic for yourself with a good book.    Your get-away doesn’t have cost you a fortune.  It just has to get you away.   I do think the longer the get-away, the more beneficial it will be.  However, you have work within your means and your comfort level.

Since I’ve been back, stressful situations have come up.  I have caught myself falling back into my old ways of getting anxious and irritable which leads to arguments and that’s just not good for anyone involved.  Now, I stop myself.  I actively say to myself, “Wait a minute.  You had a week of no anxiety, no anger, no racing thoughts, no jitteriness. Why are you letting this situation get the better of you?”  Okay, so I may not say exactly that, but something like that.  The gist of it is I recall that period of calmness and use it.  I know I can achieve it because I did.  It’s possible.  So I keep using it and I don’t give into the anxiety and anger.  Now that I’ve known that kind of peace, I don’t want to give it up.

The moral of this post, take time for yourself.  It is not only good for you, but the ones around you as well.  My household is a much happier household now that I took a little time for me.  It may seem selfish to someone on the outside, but it’s not.  It’s survival.

Embrace Bipolar

I’ve been writing this blog from the perspective of the positive side of Bipolar Disorder, at least that was my intention.  There were some times that it was difficult to do.  I feel I have grown  in the past year and a half since the start of this blog.  It hasn’t always been easy to see the advantage of having Bipolar Disorder especially when I’m in the middle of an episode.  I can assure you, though, there is…at least from my perspective, a definite advantage.

Let me start with a poem that my doctor read to me during our last session.  It’s called “The Guest House” by Rumi

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
Because each has been sent
as a guide from beyond.

I found this poem so profound.  It really helped me put together all the work I’ve been doing to try to understand the different levels of mania and depression and how to function within them.  I have been working so hard to not only accept these states, but welcome them.  Now, let me explain that last part.  By welcoming the states, I am able to see the value and advantage in each state.  For instance, I’ll start with mania (that’s usually the easiest one).  When I’m in a manic state, but still in control (and not just in my head, others around can see the controlled state) I am able to be quite productive in work, house work, advocacy work, volunteer work, etc.  I, however, don’t stay in this state too long.  I am an ultra rapid cycler and if I don’t watch it, I can cycle out of control rather quickly.  When I’m in a depressive state, I tend to have more empathy for people.  I may not always be nice depending on the degree of depression, but this is when I tend to do more service oriented tasks.  By helping others, it helps to take my mind off of the depression.  This is when I will start more volunteer projects and usually just on my own…not with organizations.

I’m not saying these things to advocate that you should actively stay in either of your states.  I can just appreciate what I learn from each one.  I do learn something each time.  This goes right along with my “Live life with no regrets” motto.  If I learn from each state, how can I regret having been through it?  The advice my doctor gave me for the next time I’m in either mania or depression is to simply say “hello”.  Actually address it and welcome it.  By doing so, I take its power away and empower myself.  I like that.  The whole idea of the online course I’ve been taking (at least for me) is to empower myself.  To not live in fear of my illness.  To not be at the mercy of my illness.  I have by no means perfected the skills yet, but I practice every day. By practicing every day, I grow stronger every day.

This strength I gain means the world to me.  It spills over into other aspects of my life.  Once you can see the value and advantage in something that was once so scary and stigmatizing, it’s no longer stigmatizing to you.  Does that make sense?  For me, that is very empowering.

Medication, Reflection & Bipolar

I have written a few posts about what I call the “medication rollercoaster”.  For me, it has never been a question of whether to take medications or not.  It has been whether the medications are going to work and for how long.  I wouldn’t say I’m med resistant just yet, but I’m down to about 4 meds that I haven’t tried. It has just been extremely difficult and I know I’m not alone.

I had grown accustomed to a certain quality of care from my previous doctor.  When he retired, I went on a search for a new provider that took well over a year.  I quickly learned just how lucky I was to have the doctor I did have.  Dr. P. would take late night calls if I was in crisis.  He always made time for me if I needed a medication change or a quick therapy visit in between scheduled visits.  That is not the case now.  I don’t say this to complain about my current care.  I have a wonderful care team in place…now.  It took time and few bumps in the road, but it’s not quite the same.  It’s not bad.  It’s just different.

Now, I write all that because the new medication provider I have now seems to be quite good.  I’ve been with her a short time, but she understands my situation well. I’m finally back on a medication regime and, for the time being, it is working.  With caution, I have hope for the medication.  The doctor I see for therapy is just awesome and someone I can trust.  I really think I have a good team in place now.  It’s nice to be able to write that.  For once, I’m not writing about firing my med provider! Hahaha!

With my care in order, I’m able to think clearly and reflect back on this year.  I realize this is usually done at the end of December, but I’m gear up to check off a life goal from list.  It’s seems appropriate for me to do now.  I’ve always said that I live my life with no regrets.   Good or bad, whatever I’ve done, it’s all me.  There are some things I will do differently.  For instance, I think with this blog I might try to more of a conscious effort to improve it.  I think I let more of bad days creep in here than I would have liked.  I’d like to tone down trying to save the world.  Perhaps I’ll just take baby steps.  I’ll take on smaller projects and build up to the larger ones.

Question for the day:  If you were to write a book about your life, what would the title be?

~ Mine?  “If I Only Had A Brain”

Don’t get me wrong, I am quite smart.  I can just be so scatterbrained sometimes.  The title fits me.  🙂

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.