30 October 2017
Assemblyman Anthony Brindisi
New York State Assembly
Albany, NY 12248
Dear Mr. Assemblyman:
While we all wait for the new hospital to come to fruition, there are other health issues in our area that require our attention. While developments in our community are about to help us fight Oneida County’s addiction problem, there are other parts of the health system which are working against us.
If you end up as our Congressperson, you could have a role in fixing one of those problems and creating positive change for the entire county. Last time I checked, Congresspeople were supposed to do that.
Before I get into that particular conversation, there are two things I must apologize for in advance. First, some are going to find this letter to be too graphic and too personal. After what I just went through, where my life stands now, and where my life may be headed, I just do not give a damn any longer. The only path to reducing stigma requires talking openly about uncomfortable topics. Instead of normalizing bigotry and racism, we should be spending our time normalizing mental health achievement.
The second thing I must apologize for is some of the politics contained herein. However, when someone decides that people like me should just give up and die, my reaction to that shall be direct. In fact, it not only extends to me but their family members who statistically could be put in a similar situation to mine.
As you may have heard, my Bi-Polar disease morphed back in late September. In order to regain control, and keep from again getting close to suicide via my disease, I had to go to the hospital. The stigma of asking for help with a metal health issue is difficult enough to bear. The stigma related to the Psych Ward, even if it is the safest and healthiest place for you to be, is off the charts. Unfortunately, when your disease changes and your medications have to change in response, I was taking Invega as a PRN, this is the only way to do it.
First of all, you have to go where the psychiatrists are. Secondly, since you probably have to adjust your meds, you do not want to be walking the streets via that process. What you want to do is find a safe p[lace to hide and make sure the new drug combination does not cause you to think weird things or have weird experiences with reality. Anti-depressants and psychotics both can produce those effects.
Even without the stigma, the Psych Ward is no picnic. It can be loud and often is. It can be uncomfortable, and often is. It can be “messy” in a uniquely human way and often is. 60% of people like me who suffer from mental illness never seek help. Many who seek help originally never get help when they need it, even I waited 7 days before seeking it, due to the mental photo collage created by stigma plus Psych Ward realities.
Fortunately, I got the help I needed. After just a couple of chats, the hospital’s psychiatrist suggested Bupropion (Wellbutrin) and Paliperidone (Invega) on a daily basis with breakfast. However, all that came with a direct and insightful warning. As he was discussing the new regimen with me, the psychiatrist looked right into my eyes and said, “Bobby, please don’t do what many people like you do. I can already tell that you love mania. You take the Invega as a PRN so you can maintain a certain level before it gets out of hand. If you take the Wellbutrin without the Invega, you might go into a mania you may not come back from.”
Amazing after just a few conversations of over a couple of days he knew me that well. Mania is often a good time. Usually when you get finished, especially as a Bi-Polar 1 person, you need a cleanup crew and a lawyer, but still a really good time. I used to try and maintain, on a scale of 1-100, +20 each day because it presented so many advantages. At that level, all the other noises in my head, and the voices, sounded like a party.
Like a good little patient, I started the regimen. A new world was opened to me. My mind was quiet. No noise, no voices, no moments when my semi-photographic memory seemed to go off on its own and show me things I really did not want to look at again. I had mental peace for the first time ever in 50 years on the planet.
Now just because it works the first day does not mean it is going to work every day. I hung around another 7 days with pretty much the same result. It looked like I was all set.
In case you are wondering, since the inception of the Affordable Care Act, I went through the same dance each year. Because I am relatively more healthy, and definitely not in pain, than the average person my age, I never bothered to get insurance as required by the law. Instead, I would pay out of pocket and use time share expenses, there are nothing but expenses in the timeshare industry, to lessen the penalty. Thanks to Donald Trump, the one thing I can say he did for me, I did not even have to go through that charade this year.
All of a sudden, I had to pay for meds. Time to do the self-employment turns into Medicaid route so I can get those meds. It is not that hard to pull off legally when your mental illness has made it so you have not made any cash in months. Funny, you can walk around for a long time, help people, creative positive change, and through the whole thing, you have been living off savings and not noticing it.
No, it is not my intention to live off off SSDI, which I recently had to apply for, and Medicaid. My life is now going to take one of three paths. In path A, this is just a bump in the road. I will soon be producing like I used to. Depression like I went through in September might return another 6 years from now and all of this will just be a footnote. This scenario has about a 5% chance of happening.
In scenario B, I will be on SSDI for a year or two. I will adjust to the new meds over time and life will go on. 24 months from now, I will be better and able to create tax revenue like I used to. I had the conversation with myself where I put greed away before coming back here the second time in 2013. I would like to take greed out to play again. This scenario has about a 20% chance of coming true.
In scenario C, depression, and therefore anti-depressants, are forever company now. I will never hold a job, or be able to work for myself, without losing days each week. Most employers will not tolerate that and in the self-employment world, the math does not work. This period will be followed by early onset dementia and then death. This is the most likely scenario for someone like me. At least I will die sober should that be my Higher Power’s will.
In case anyone asks, while I am not looking forward to death, I cannot complain about my circumstances. Lord knows I have traveled and experienced more than most people. Lord also knows that between addiction, alcoholism, and mania, I have wasted more money than most people make in decades. My Higher Power has been rather good to me regarding the adventure and hedonism categories.
So there I am facing these scenarios about to get out of the hospital. On release day, my prescriptions are called in and I check in with my support system. Everything is all set. My first stop, ok it was like my 10th stop after some friends and the mall, is the pharmacist. That is where the fun begins.
At the pharmacist, I am told that Medicaid needs pre-approval for Invega. Ok, no problem. Call the hospital, call the doctor, call the nurses’ station. My job is to make sure the paperwork is done. Everyone says it is.
By the way, I understand Medicaid not paying for Invega. Not only is Invega great, it is expensive. Well, I should get Invega soon, right?? Pre-approval has to be on the way, right?? 4 days go by, no Invega. That also means no Wellbutrin. Depression could return as mind clutter already had.
There was only one thing to do. Go back to the hospital and get some answers. Once they knew I was there, through that lovely Emergency Room again, the Psych Ward sent a representative down. After pleasantries, we came up with a substitute plan.
Risperidone (Risperdal) is Invega’s grandfather. It is a harsher drug but it gets the job done. Part of your body will not work but you do not put on the weight that you gain with Invega. I experienced back in 2011 when I had a mania run that some doctors almost diagnosed as Schizophrenia. Risperdal put me back on track rather quickly.
Our plan was I would start all over again. Asked to be examined, get a prescription for Risperdal, since it is much less expensive, and then take that with the Wellbutrin. So, we executed our plan. Although I had to change into the hospital one piece open in the back pajamas, “johnnie” just doesn’t cut it anymore, I skipped the EKG and a number of blood tests. I had my prescription in under an hour.
Only one hurdle, Medicaid now would not pay for Risperdal. I ended up asking for a cash price, the generic discount is one whole penny per pill, and buying a couple to get me through the week. Risperdal and Wellbutrin every other day twice a week beat nothing at all. One small problem, my savings are almost nil. Thank God for my support system.
Now I started making daily phone calls because I wanted my Invega. I wanted the clarity and the feeling that went with it. Every day the calls were in vain. I even called your Office. Please thank Sarah for the help she provided in my direction.
It would take 3 weeks. A Nurse practitioner finally hooked me up with Invega samples. Our thinking is that on November 1st, my Medicaid changes from straight Medicaid to a name brand type. At that moment, they should cover the Invega. If scenario A is true, I will be covering it for myself not long after that.
However, here is the rub: what if I was not me?? For a regular person, I am somewhat resourceful, decently intelligent, a pretty good communicator, and can advocate for myself. Now stack me up to most of my mentally ill brothers and sisters. Many of them cannot advocate for themselves that well. Some are not even cognizant of what they are supposed to do in such a situation.
What would happen to many of them?? They might have taken the Wellbutrin solely and ran into a hell of a jackpot. They also may have taken nothing, had the depression re-catch them and commit suicide. It is on their behalf I write this letter today. You need to commit to making sure that if Medicaid denies one Psych Med that the replacement is immediately available through an arrangement made ahead of time.
This is where life gets political. Yes, it is the right thing to do but you need an issue. Donald Trump’s approval rating is at 33 but the Southern Strategy never took hold here. The “15.9” rule exists but the Compare Politics Model precludes it. You are a better candidate than your opponent but you are also an Italian Democrat from Utica running in a much larger District. It should be noted that Italian folks are getting a raw deal here. The progress I have seen in Compare Politics Model types intersecting with Globalist, that means we are fiscally conservative, social Liberals like me over the last 4 years has been awe inspiring.
What happens in the Family Court race will be instructive. The Democratic candidate has all your problems. She also has the problem of hiring Town Square Media which has driven many of us social progressives into the other camp. I refuse to vote for anyone who hires people who reach out to the people who threaten me daily. We will see if the Trump effect cancels out all her other challenges.
My guess is that you still need an issue. Based on your opponent’s voting record and life conditions, this is perfect for you. She, like every Trump supporter, tried to take our health care away. She, like every Trump supporter, tried to make it impossible for those of us with pre-existing conditions, especially those of us who are mentally ill, to get any help at all. The clear impression is that she would rather have us die.
This might be the most interesting cross-section. Her son, as I served, is serving in our military. Do I have to tell her how often I have had to help vets with their addiction issues?? Do we have to show her the stats of how many vets leave active service with various mental illnesses?? It is almost as if she did it to her own kid.
My hope is that you and I can talk about these issues with the person who is helping you pick your health care, mental illness, and addiction positions for your campaign. Again, not only is it the right thing to do, but it creates miles of divide between you and your opponent. That might be the exact issue you need to make up for your other challenges.
I hope to hear from you soon. Please remember this is not so much about me at this point but is really about my mentally ill brothers and sisters. I am not sure how many of them vote, but if you ever want to meet a few on our streets, please let me know.
Thank you for your time and consideration.
Robert T. Oliveira