Substandard Psychiatric help in Washington State

Posted by minneapolis123 @minneapolis123, Sep 27, 2019

I need help, my life depends on it. I'm battling suicidal depression right now and on top of that I have been informed by an Oncologist that It is likely I will develope Multiple Myeloma cancer in which there is no cure. The Hospitals in Seattle are third rate in dealing with serious depression and consistently rate at the bottom nationally. The Mayo Clinic prides itself in helping people from all over the world with Cancer but apparently I'm not welcome for inpatient help because of my location which is really ashame because it is going to cost me my life. I do not see but one way out. I'm so sorry for my family

@minneapolis123

I'm not sure if the people who were kind enough to respond to my original message have received any further messages from me or not. But thank you all it was helpful. I got a brief tutorial from my son on how to reply to messages here so hopefully they go through. I don't mind sharing my diagnosis from the Oncologist which is Smoldering Myeloma likely to develope into Multiple Myeloma. I'm 10 years younger than the average age for that disease.
What has got me so depressed/stressed is I'm not coping well with all these stressors at once:1) Health, 2) my oldest son is a homeless Heroin addict which absolutely breaks my heart– I did not see that one coming. I even had to do chest compressions in my home until Medics arrived after yet another OD, it is impossible to let go of that vision of him, 3) I have been working with an attorney trying to settle back taxes the last two years and still have a lien on my home, 4) My 82 year old mom is in failing health and I feel enormous guilt not being there for her enough because I can not get myself together.
5) This one is the most difficult of all– I'm seen at Seattle Cancer Care Alliance every 6 months for progression and when I explained how badly I struggle with anxiety to Dr Martin ( Oncologist) he referred me to behavioral health within SCCA. The Psychiatrists told me to take a year long DBT class that is ALL that they offered. They actually said No to a Social Worker, Psychologist and a Psychiatrist. Take a DBT class in downtown Seattle and I'm not even Borderline Personality. These are University Of Washington Behavioral Health Doctors and have really crossed a line when they denied me access to people who might be able to help and I fully intend to continue working with the Attorney and challenge them.
Before I end this letter I do want to mention that I ended up in the hospital 9/27–10/6 and was feeling somewhat better. Now I'm feeling very down again and am considering ECT which I had back in 2004 and promised myself a long time ago I would never do again because of memory loss. Antidepressants do not work for me.
My best chance I have to live out my life is to make an appointment at the Mayo Clinic in Rochester and see what they have to offer. I have lived in Seattle all my life and this place really has little to offer anymore.
Sincerly

John J

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@minneapolis123

Hi, John. When I began to spiral downward, I couldn't pinpoint any triggers. The doctors and therapists seem to think that I need to acknowledge them. But life was going well at the time. Of course, the more depressed I became, the more I was affected by the difficult things that, if I hadn't been depressed, I could have dealt with.

So I have a sense of how terribly difficult it is to deal with the things you wrote about when you're so far from well.

It seems unconscionable that the Seattle health community is failing to see, and acknowledge, and refer you to the people who could help you. I hope that you are finding a way to get around those roadblocks to access competent and compassionate care. It's unfortunate that you have to involve an attorney. That should not be.

Was the time in the hospital helpful? Are you able to see that your son's problems are his own, and not carry any guilt as a parent? I worked for a long time with therapists on sorting through my own guilt and shame, and doing so was vital to achieve any sort of recovery.

I'm glad that you've been able to figure out how to navigate the dialogue in this group.

Jim

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@minneapolis123 thank you so much for reaching out again and updating us. it really does mean a lot. i really hope you can get to the mayo clinic and get the help you are seeking. dont stop until you do. my thoughts are with you.

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@minneapolis123

I'm not sure if the people who were kind enough to respond to my original message have received any further messages from me or not. But thank you all it was helpful. I got a brief tutorial from my son on how to reply to messages here so hopefully they go through. I don't mind sharing my diagnosis from the Oncologist which is Smoldering Myeloma likely to develope into Multiple Myeloma. I'm 10 years younger than the average age for that disease.
What has got me so depressed/stressed is I'm not coping well with all these stressors at once:1) Health, 2) my oldest son is a homeless Heroin addict which absolutely breaks my heart– I did not see that one coming. I even had to do chest compressions in my home until Medics arrived after yet another OD, it is impossible to let go of that vision of him, 3) I have been working with an attorney trying to settle back taxes the last two years and still have a lien on my home, 4) My 82 year old mom is in failing health and I feel enormous guilt not being there for her enough because I can not get myself together.
5) This one is the most difficult of all– I'm seen at Seattle Cancer Care Alliance every 6 months for progression and when I explained how badly I struggle with anxiety to Dr Martin ( Oncologist) he referred me to behavioral health within SCCA. The Psychiatrists told me to take a year long DBT class that is ALL that they offered. They actually said No to a Social Worker, Psychologist and a Psychiatrist. Take a DBT class in downtown Seattle and I'm not even Borderline Personality. These are University Of Washington Behavioral Health Doctors and have really crossed a line when they denied me access to people who might be able to help and I fully intend to continue working with the Attorney and challenge them.
Before I end this letter I do want to mention that I ended up in the hospital 9/27–10/6 and was feeling somewhat better. Now I'm feeling very down again and am considering ECT which I had back in 2004 and promised myself a long time ago I would never do again because of memory loss. Antidepressants do not work for me.
My best chance I have to live out my life is to make an appointment at the Mayo Clinic in Rochester and see what they have to offer. I have lived in Seattle all my life and this place really has little to offer anymore.
Sincerly

John J

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@minneapolis123 That is a lot to have on your plate all at once. It can be overwhelming and make you feel you cannot get your head above water to breathe. @jimhd mentioned about your son's issues not being yours, and I agree, but as a parent that is a difficult stand to take in your mind, isn't it? Are there any resources to help you with your mother, perhaps other family nearby to share the heavy responsibility that you describe?
Will your insurance let you self-refer to a therapist for assistance, rather than the behavioral health at SCCA? Or perhaps your oncologist knows a therapist to refer to you, outside of the BH team.
I hope we continue to be a place for you to come for venting and suggestions.
Ginger

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@jimhd

@minneapolis123

Hi, John. When I began to spiral downward, I couldn't pinpoint any triggers. The doctors and therapists seem to think that I need to acknowledge them. But life was going well at the time. Of course, the more depressed I became, the more I was affected by the difficult things that, if I hadn't been depressed, I could have dealt with.

So I have a sense of how terribly difficult it is to deal with the things you wrote about when you're so far from well.

It seems unconscionable that the Seattle health community is failing to see, and acknowledge, and refer you to the people who could help you. I hope that you are finding a way to get around those roadblocks to access competent and compassionate care. It's unfortunate that you have to involve an attorney. That should not be.

Was the time in the hospital helpful? Are you able to see that your son's problems are his own, and not carry any guilt as a parent? I worked for a long time with therapists on sorting through my own guilt and shame, and doing so was vital to achieve any sort of recovery.

I'm glad that you've been able to figure out how to navigate the dialogue in this group.

Jim

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Hello
I believe the hospital stay was helpful at the time, however the medication that was started there has not starting working yet. But worst of all that particular medication has a very high copay $478.21 per month. I will be contacting my Insurance carrier and see if they will make an exception so I can give the Med a try for a few months.

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@minneapolis123

Hello
I believe the hospital stay was helpful at the time, however the medication that was started there has not starting working yet. But worst of all that particular medication has a very high copay $478.21 per month. I will be contacting my Insurance carrier and see if they will make an exception so I can give the Med a try for a few months.

Jump to this post

@minneapolis123

Ouch! That's one expensive medication! My lidocaine cream had a more than $100 copay, but now Medicare doesn't cover it, so I guess it's a moot point. I called the manufacturer, and they gave me a couple of numbers to see if they would help with the cost. But, since it's not on their formulary, I haven't called anyone. Maybe you could find if your medication would qualify for assistance. If you want the numbers they gave me I'll pass them along.

Do suicidal thoughts come and go, or are they there all the time? Do you have a plan for how you will commit suicide? Do you have a plan list of things you can do, or people you can call when you don't feel safe? Of course, we are always available to support you.

Jim

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@georgette12

@minneapolis123 i just read your post from an hour ago. ECT has changed since you had it in 2004. I had it in 2015. I didn't notice side effects but everyone is different of course. I had acupuncture and every other non-medical method that ever appeared on the mental health care scene. Meds often don't work alone and I find that a combination of chemical and non-chemical plus A GOOD THERAPIST WHICH IS HARD TO FIND IN SOME AREAS OF THE COUNTRY…can work well together. I'm thinking that visiting the mayo clinic is the next best step cause they have excellent practitioners and doctors who can look at your entire body and mind and spirit. I hear you about your son. I am there with you. I see the awful visions of his suicide daily. So keep connecting with all of us who understand and keep us informed as we do tend to get concerned if we don't hear from each other. Blessings.

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I completely agree with you that visiting the Mayo Clinic is the next step I need to do. I will bring the results of my medical tests or have them sent there for a complete review by an Oncologist and I need to find out what is available in terms of counseling especially for bad anxiety and recurrent major depression that may or maybe not available at Mayo. The more information I can gather the better. Thank you for your post.

John J

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@lisalucier

Thanks for the update, @minneapolis123. Glad to know the hospital took care of you during the 9/27–10/6 time period. That is unfortunate you were not referred to the resources you'd hoped for for help.

A conversation that comes very much to mind with what you shared about smoldering myeloma is this Connect discussion, which started back in 2011 and continues into 2019 https://connect.mayoclinic.org/discussion/multiple-myeloma-i-have-smoldering-myeloma-does-anyone-have-this-diagnosis.

Alternatively, you might check out the group in which the above discussion appears, the Blood Cancers & Disorders group https://connect.mayoclinic.org/group/blood-cancers-disorders/ and start a brand new discussion on smoldering myeloma.

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I will check into the Blood Cancers & Disorders group that is a very good idea. Hopefully I can find people who are in a similar situation as me who have achieved ACCEPTANCE of the disease and can explain to me how they got to that point.
Thanks,

John J

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@minneapolis123

I'm not sure if the people who were kind enough to respond to my original message have received any further messages from me or not. But thank you all it was helpful. I got a brief tutorial from my son on how to reply to messages here so hopefully they go through. I don't mind sharing my diagnosis from the Oncologist which is Smoldering Myeloma likely to develope into Multiple Myeloma. I'm 10 years younger than the average age for that disease.
What has got me so depressed/stressed is I'm not coping well with all these stressors at once:1) Health, 2) my oldest son is a homeless Heroin addict which absolutely breaks my heart– I did not see that one coming. I even had to do chest compressions in my home until Medics arrived after yet another OD, it is impossible to let go of that vision of him, 3) I have been working with an attorney trying to settle back taxes the last two years and still have a lien on my home, 4) My 82 year old mom is in failing health and I feel enormous guilt not being there for her enough because I can not get myself together.
5) This one is the most difficult of all– I'm seen at Seattle Cancer Care Alliance every 6 months for progression and when I explained how badly I struggle with anxiety to Dr Martin ( Oncologist) he referred me to behavioral health within SCCA. The Psychiatrists told me to take a year long DBT class that is ALL that they offered. They actually said No to a Social Worker, Psychologist and a Psychiatrist. Take a DBT class in downtown Seattle and I'm not even Borderline Personality. These are University Of Washington Behavioral Health Doctors and have really crossed a line when they denied me access to people who might be able to help and I fully intend to continue working with the Attorney and challenge them.
Before I end this letter I do want to mention that I ended up in the hospital 9/27–10/6 and was feeling somewhat better. Now I'm feeling very down again and am considering ECT which I had back in 2004 and promised myself a long time ago I would never do again because of memory loss. Antidepressants do not work for me.
My best chance I have to live out my life is to make an appointment at the Mayo Clinic in Rochester and see what they have to offer. I have lived in Seattle all my life and this place really has little to offer anymore.
Sincerly

John J

Jump to this post

@minneapolis123

How many antidepressants have you tried? I tried 6 or 8 of them before I found one that worked for me. It was a really long process, taking one for 6 weeks, then taking another one for 6 weeks, and so on down the list. It took nearly two years. I finally found one that I thought would work, Wellbutrin. I started on it the first of 2006, and when I was feeling increasingly depressed a couple of years ago, the psychiatrist had me try a few meds that could enhance the Wellbutrin. Again, it was a six week trial period of several meds until I found that Mirtazapine did the trick. Finding the right medication can be a tedious and frustrating process, but when you finally get going on the right medication, it's worth the effort.

I hear and read all the time that the most effective treatment for depression et al is the combination of medication and therapy. I can attest to the fact that it really is true. I know, the challenge is to keep mucking on through the mire, when all you want to do is stay in bed or worse. I have to be honest with you, even after all these years of therapy and medications, I still sometimes feel myself sliding down into the dark hole and want to check out. Major depression is the hardest thing I've ever faced. I've been a survivor thanks to God and the people around me who have walked with me and given me support and encouragement. In spite of myself!

Jim

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@jimhd

@minneapolis123

Ouch! That's one expensive medication! My lidocaine cream had a more than $100 copay, but now Medicare doesn't cover it, so I guess it's a moot point. I called the manufacturer, and they gave me a couple of numbers to see if they would help with the cost. But, since it's not on their formulary, I haven't called anyone. Maybe you could find if your medication would qualify for assistance. If you want the numbers they gave me I'll pass them along.

Do suicidal thoughts come and go, or are they there all the time? Do you have a plan for how you will commit suicide? Do you have a plan list of things you can do, or people you can call when you don't feel safe? Of course, we are always available to support you.

Jim

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I received a call from my insurance company to check on how I'm doing since getting out of the hospital and explained that the new medication I was put on is out of reach financially and surprisingly she said that they will make an exception for this one medication and my copay should be under $100.00 per month so that is good news.
As far as SI those thoughts come and go but are so intense at times I barely can control it and as far as a plan, yes. When I left the hospital I completed a crisis coping plan but again around Seattle resource are too limited when it come to behavioral health so I have a Nurse Prescriber but have not been able to connect with a counselor yet.

John J

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@jimhd

@minneapolis123

How many antidepressants have you tried? I tried 6 or 8 of them before I found one that worked for me. It was a really long process, taking one for 6 weeks, then taking another one for 6 weeks, and so on down the list. It took nearly two years. I finally found one that I thought would work, Wellbutrin. I started on it the first of 2006, and when I was feeling increasingly depressed a couple of years ago, the psychiatrist had me try a few meds that could enhance the Wellbutrin. Again, it was a six week trial period of several meds until I found that Mirtazapine did the trick. Finding the right medication can be a tedious and frustrating process, but when you finally get going on the right medication, it's worth the effort.

I hear and read all the time that the most effective treatment for depression et al is the combination of medication and therapy. I can attest to the fact that it really is true. I know, the challenge is to keep mucking on through the mire, when all you want to do is stay in bed or worse. I have to be honest with you, even after all these years of therapy and medications, I still sometimes feel myself sliding down into the dark hole and want to check out. Major depression is the hardest thing I've ever faced. I've been a survivor thanks to God and the people around me who have walked with me and given me support and encouragement. In spite of myself!

Jim

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Over the last 22 years I have lost track of how many Medications I have tried but it is in the teens. None were helpful except Abilify and that only lasted three weeks even after varying the dose. So I will be trying something new for me, Latuda for a good couple of months and if I fall into that deep dark depression before that med has a chance to work I will have no choice but to consider ECT again.
I'm glad you are a survivor, and have good people around you and now because you are here, you are helping others by posting.

John J

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@minneapolis123

Over the last 22 years I have lost track of how many Medications I have tried but it is in the teens. None were helpful except Abilify and that only lasted three weeks even after varying the dose. So I will be trying something new for me, Latuda for a good couple of months and if I fall into that deep dark depression before that med has a chance to work I will have no choice but to consider ECT again.
I'm glad you are a survivor, and have good people around you and now because you are here, you are helping others by posting.

John J

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@minneapolis123

Have you started on the Latuda? That's one I've never tried.

Was ECT helpful? I was all cleared to do it, but my wife was against it. It would have meant driving to Portland every Monday and driving 150 miles back home on Friday. We have to drive over a pass in the Cascades, and my wife, who doesn't like to drive, would have to be the driver. I was working with the OHSU social worker on finding accessable housing and transportation. Before I could get all the details worked out, I had to drop it because it was too overwhelming for me. Feeling overwhelmed is one of the symptoms of my depression. My psychiatrist and other doctors were encouraging me to do it, and would probably still approve it. Then, the only doctor who did the treatments in Oregon moved away. By now there are a couple of doctors in Oregon who could do it. I'm not up to starting the process over again, and my wife isn't able to drive because of severe hip, leg and shoulder pain. If the hospital here in central Oregon were to get set up to do the therapy, I might seriously consider doing it.

I can only take life as it is dealt to me. ECT doesn't seem to be in the cards for me. If you decide to go that route, keep us posted.

Jim

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I had 18 sessions of ECT in December of 2003 and January 2004. The Doctor wanted to do more but I had to stop because of significant memory impairment and overall confusion, but did it help for really bad depression? I always say to people who ask, that for me, that many mostly bilateral treatments left me mostly unable to remember what the heck I was that depressed about, honestly. It took months for these side effects to subside. That is the experience I had and I realize that everyone responds differently and even though I told myself I would never do ECT again life got tough enough that I tried it again two years ago but I could not control my fear and anxiety just minutes before the session and stopped the treatments after just two. I think that it is really important to say that other patients have told me ECT saved there lives and the memory and confusion problems were not as bad as what I experienced.
I am now in the process of trying to sets up Esketamine nasal spray treatments and hopefully I can try that before too long it looks so promising on youtube to possibly start feeling better after just a few treatments. I do not know how much it will cost yet but I look forward to hopefully trying this newly approved procedure.
I can't say I feel a much improvement on the Latuda I started taking about 3 weeks ago but it may take longer to start working. if at all. Also I have tried TMS Therapy with the magnets and again for me that particular treatment completely failed there was no benefit for me at all
I will keep you updated on what happens next.

John J

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