OCD YEAR ... an Update, Is my OCD Center regulated?

[Tikirob]

After losing my job, my apartment, my love life, my regular doctor, half my 401K, my mother who just passed, most of my sense of smell (put peroxid in my nose as a compulsion) and time, oh yes time, it has been 3 years since the diagnosis of OCD, and the hill is still steep, but - yes there is a but - thank God I am no longer, the Rob that cannot say no, the guy who does every little think based on guilt, the guy who allowed people to bully him, afraid to be open about his mental health disorder, the person who just hoped God would take care of the world around him, and thank God for being able to write and share this with you. Yet if you check my title there is a little quip about an OCD center, unfortunately I cannot be as thankful to the current state of Mental Health treatment in the USA. I am in my third year of trying to get treatment for a mental health disorder that has been diagnosed by multiple clinics, that one percent of the population apparently has. Yet after turning every leaf, hundreds of phone calls, the reexplaining to multiple health agencies, goverment officials, etc. there is no where in NY to get help for severe OCD. The richest city in America and I, a college graduate, a person who worked for City of New York for 14 years, who is able bodied, whose maybe only gifted skillset is the ability to comminicate well, cannot get adequate mental health treatment. I paid into social security into the thousands, I have contacted the Commissioner of Mental Health, The Board of Mental Health Lawyers for NY (who advised me to "Try google" to make the problem go away) and have been to 4 OCD prestigous OCD centers, and still nothing.

My last hurah has gone like this. Call OCD center speak to a doctor for an hour about getting into the OCD center who advises me to call or Go to OCD center to make an appointment to be admitted. I go there in person was told that I cannot initiate the process in person and that I must Call a telephone nuumber given by the OCD Center to an office a few doors down from admissions desk at the OCD center to book a phone appointment to see if I can come to the OCD center for an evaluation. This increases my anxiety. I Leave a message because no one answers and there is no message saying whose voicemail it is. I do not trust the number so I also leave a personal note to be delivered to that persons mailbox.Do not get a call within 48 hours as was told so I call back the number again. I receive a call the next day, a psychologist calls me, and then just says to me, "What do I want?" even though I left him a discriptive message in writing and on the phone and already spoke to two of his colleagues. I reexplain myself, anxiety increases, and he tells me I have to make an appointment with him to do a phone screening. He calls I do the screening and then hes says he will call me back in a week. He does not. I call back and he tells me that the director needs to talk to me and will calll me in 48 hours. He does not. I call back the original doctor and plead with him to give me feedback on my case and magically the director calls the next day. He tells me I have too much OCD to come to the program something I heard from two other OCD Centers! I ask him to put it in writing telling him I am desperate for treatment and am in need of it because my life is in dissaray, he says he won't but upon hearing my friend in the background is listening changes his tune, says I have been to the center before and he is not sure I can come again (I went to the center while I was working and my boss refused to let me come in an hour early for treatment so I had to quit) but then after speaking to my freind agreed to write me a letter saying I was too severe to treat. I asked him to please let me get some sort of assistance for getting help for my disorder and he directed me to a Crisis center in the hospital. My mom passes away. I go back to the hospital, get the letter, wait 2 hours at the Crisis center, and tell them what the doctor said and show them the letter. They do not really understand why he would send me there so they tell me they need a week to talk to the director. I mention to the Psychiatrist that when my Mom died my OCD took a little bit of a sidestep because I was so focused on the grief. I was told I would be called in a week. No one calls. I call back and was told I need to come back in to speak to the director with the crisis center manager (WHY?? Anxiety is maxing). I am given an appointment date to meet with them, they do not call me at the time and are half hour late to come out to get me for the appointment. They come out laughing and joyful with no tact and kind of fake friendlyness. I sit down and the director looks at me and goes, "So what can we do for you?", seriously, I go "Outside of everything I have spoken to your office about???" 'Well' he says, 'How can we help you?' to which I said I have OCD and need treatment. "Well how does OCD effect you?" to which I go through the symptoms of OCD in laymens terms, anxiety and sadness are playing hide and go seek. I will not bore you with the horrible groveling I had to do just to possibly get group treatment for OCD, how the director said "Well you said your symptoms were getting better" to which I said, "I told the doctor that some of my symptoms took a step back when my mother died", "Well we cannot help you with the other stuff if that what you are expecting" he said repeatedly insinuating there was some other omen involved with me to which I figured out he meant greiving which is not a mental illness but a natural emotion. They insinuated that because I breifly stated that when my mother died my OCD symptoms changed a bit as the impetus for the meeting we were having. I was told that I would get a call from the social worker. She called and told me that I would have to make another appointment for an assesment before I could receive treatment for my OCD through the Crisis center via the OCD center at the OCD center. This is where my mental health stands.

[Naliegha]

I am so sorry you are going throjvh this rob! Keep persisting u are stronger than this. Ur doing great, in the meantime try mindfulness it helps with the anxiety and the panic attcks. Keep fighting for yourself, there are so many others going through this struggle of back and forth too!

[Tikirob in reply to Naliegha]

I read my post and realize like my other posts there is a lot of venting needyness on my part. There is so much tragedy in the world it’s been easy to be woe is me lately but in reality I’m alive, fed and at least today have a roof. I am just wondering if I should give up on psychology and put all my efforts into alternative medicine and self care. Thanks for your support and feedback, the encouragement is really helpful.

[Miniwheats]

Wow. I am speechless. The way you have been treated by the system is appalling. I wish there was something I could do for you but alas I am not a person in high places.. Honestly if I were you, and because you are so well spoken, I would contact my ? congressman (in Canada our local elected government officials are called MPs, I don't know what they're called in the States). It may or may not do you any good but at least you will have known that you tried. Good luck to you, I hope you get the treatment you need and deserve soon.

[Tikirob in reply to Miniwheats]

I contacted my congressperson when I was first pushed out of my job looking for treatment and never got a call back. NYC is actually one of the most toxic places to live because all services are over administrated and lots of grant agencies exist but have no weight in determining services so you will find 10 places that advertise "Need help with mental health, we can help for free!" and what they are is some placement center that just googles and gives you the numbers of places or its not free and its a fishing net to get you to pay or its just run by checked out people and provides services only to addicts, its crazy. Thanks for your reply. I have thought about applying for refugee status in the Netherlands to get into the Bergen program. How is Canada overall with Mental Health?

[Miniwheats in reply to Tikirob]

Well I can't say what it's like in Canada... I'm not really in the know regarding mental health services but I suppose it also depends on the urban center in which you find yourself. For me I just went to a psychologist and used work benefits to pay. Inpatient programs for whatever type of rehab always look at severity of illness here, otherwise it's outpatient clinics or community support. But just the way you've been bounced around between different people and offices and nobody calling you back - that doesn't generally happen here and that's what shocked me most about your post ☹️

[Tikirob in reply to Miniwheats]

I had good insurance when I first was diagnosed I was working and went in medical leave but still was only able to get help via teaching hospitals that had OCD programs but since they let externs do the work (doctoral students) they set the criteria to young adults and people with mild OCD and defer severe patients out of state to expensive residencies that cost 40,000. With insurance I could not get my program paid for and couldn’t afford it. I was told by two prestigious OCD programs I had too much OCD to be treated there and could not imagine going to a Detmatologist and he/she saying that I had too much acne to be treated. I have OCD and yet I have not been treated directly by one fully licensed psychologist because they offer you externs twice a week or if you pay 175 dollars a session out of pocket like I did I still only got a Post doctoral student meaning they passed the ex but have yet to be licensed. It’s so unbelievable to me. The future people will look back on us dinosaurs and gasp at how mental health was implemented.

[Miniwheats in reply to Tikirob]

What!?? So you are deemed TOO severe to be treated?? That's f'd up! You need to get the heck out of that country and get to one that has public healthcare which I know your government likes to paint as archaic and substandard...Ugh! Such propaganda!! Nothing could be further from the truth! 😤

[gemfire]

I also live in NY but in another city. I went through similar experiences as you and after many weeks of trying to get help, I finally found it in an area of treatment that I dismissed early on. A Clinical Social Worker. Look for them in your area online. There will be these letters next to their name LCSW-R. (make sure they have the -R) I had no idea the wealth of information and programs that they have immediate access to with a simple phone call. They will advocate for you until you get the help you need. Insurance covers the visits too.

[Tikirob]

Thanks I agree social workers are actually more helpful than psychologists at time because they can weigh how your overall life is and help you initiate changes. I have been to a couple and with my situation they are not really able to work outside of the paid hours so having a person for an hour and a half a week just is not enough but I appreciate their effort and I appreciate your response...if you don't mind me asking do you have OCD?

[gemfire in reply to Tikirob]

Yes, but not too bad. I have OCD along with GAD and occasional panic attacks.

[Tikirob in reply to gemfire]

Oh okay sorry to hear that - that’s a rough combo, I have OCD and bad health anxiety. Been taking passionflower extract and 5htp and it has helped a bit. I was on Luvox and also before that Prozac with Koladapin, the side effects were so bad on those.

[gemfire in reply to Tikirob]

Same here with the health anxiety. I also had problems with the side effects from Prozac. Eventually ended up with a combo that worked really well. Paxil and Klonopin. About 10 years ago I was able to stop the Paxil and just have the Klonopin left. What's 5htp?

[Tikirob in reply to gemfire]

That’s great I would love to be able to have just the Klonopin for sleep but my doctor was worried I would abuse it so it got yoked. 5htp is tryptophan the stuff in turkey that makes you sleepy. It’s legal and sold in health food store but may not mix with the Klon. It doesn’t really hit you like that but it has helped me relax at night.

[cortisolqueen in reply to Tikirob]

Hey Tikirob, If you don't mind me asking, what is the OCD focusing on? I have had OCD since my teens. Back in those days, no one know much about it and I certainly didn't know what in the world was happening to me. Mine focuses mostly on germs, counting and checking. Actually, I lived a somewhat happy life. Had my only child at 30 and things got better and better. I never even realized that OCD was anxiety. I knew my thoughts and obsessions were not normal but never confided them to anyone because I knew they would think I was crazy. Fast forward to 3 years ago, I started having some health problems and then the panic attacks started. Once you have a panic attack all bets are off. I went to the ER 10 times that first year, each time I was convinced I was dying. Things have settles some, I have not been to the ER in 2 years. Some days are better than others. Like you I found there is not much help for mental illness. I truly know what you are going though and I know just how awful this illness is. We know that there is nothing rational about the OCD but sometimes we are just helpless to do any thing about it. Hang in there my friend. I am now 60 years old and I haven't died or went crazy yet so I am pretty sure we will be OK.

[Tikirob in reply to cortisolqueen]

Hi!!! My ocd focuses on germs too. But it also focused on weird things like if I watch a movie I have to see the credits and look for the last actors name in it and repeat the name to myself or else I get bad anxiety. I wore surgical gloves because I washed my hands till they bled. I checked for lumps so hard I broke the skin on my body. I have a compulsive itch where I have lost skin tone. I put bleach on the bottom of a bag of snacks to clean it off not realizing if it soaked through I could have gotten really sick, put rubbing alchohol in my nose because I picked it...not to mention I fear everything poop related, animal related! But anxiety and a fear of getting really sick permeates it all. I am so glad you a child, you are brave, and you are giving me hope with your earned optimism. I feel a comfort hearing from other anxiety sufferers. Two things I don’t fear, socializing and driving. Maybe I should be an Uber driver, but the minute someone sneezes, yikes!

[cortisolqueen in reply to Tikirob]

Sounds like we have a lot of the same phobias. I can remember just all of a sudden thinking that my hands were dirty and I would have to wash them over and over, yes until they were raw. I also would have to pray a certain prayer a certain amount of times or I thought something bad would happen to my older sister. Just writing this sounds so irrational but in my mind I had to do it. I am so sorry you are dealing with this! I would not wish it on my worst enemy. You are strong and you can lead a happy life, I am living proof of that. Although I have been struggling the past 3 years, I am still here and getting better every day. Hang in there!

[Tikirob in reply to cortisolqueen]

Thanks for the support. I have good days now and then, you give me hope that things can get better, thanks.

[kenster1 in reply to Tikirob]

glad to hear that your managing to have some good days after a tough period.long may it last you deserve a good turn.

[Tikirob in reply to kenster1]

Thanks! Meet with the assessment team on Monday. I initiated this process in December it’s now 2 months later. It’s hard not to complain to them I will have to seal my lips when I am there.