Hopeless and Drowning – We’ve made a very difficult decision tonight

I’m so incredibly overwhelmed by this whole thing with Lizze.  Trying to get her the help she needs has proven to be extremely difficult for a number of reasons. 

Right now the biggest obstacle is insurance. 

There is a DBT therapy group about 5 minutes from our house but they don’t take our insurance.  The next closest is 30-40 minutes away and then of course, there’s the Cleveland Clinic and that’s well over an hour drive, on good day.

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The only place we know for sure takes our insurance is the Cleveland Clinic.

I don’t know what to do and I feel like our options are limited.

To be completely honest with you,  I’ve spoken with her psychiatrist at the Cleveland Clinic and expressed my concerns.  He explained his approach and I get it, I really do. 

I know that he’s taking a sound medical approach however, that’s not the problem.  The problem is that we aren’t a typical family and are dealing with things that are relatively unique.  As such, his blanket approach to dealing with BDP is something that we would struggle with on the best of days. 

It’s not a matter of being unwilling to do the work or even travel.  We still don’t have a car, insurance is a major obstacle and we’re still dealing with life threatening health issues with Gavin.

We’re meeting with Lizze’s case manager in an effort to try and get this figured out and possibly find a way to overcome some of these obstacles. 

Unfortunately, her new psychiatrist doesn’t consider this to be complaint with treatment.  Before he will help her with her depression, she has to be in DBT therapy and he’s unwilling to sorta meet half way.

We have a very unusually complex family situation and we never, ever fit the mold for anything. 

Dr. Pattie tried to explain to him that Lizze is drowning and needs help now.  She explained that we are working very hard to get into this therapy but it’s just not practical at this point. 

I explored the option of self-pay and there is no way we can afford it.  We’re talking thousands of dollars and I’m not yet in a position where I can pull that off and I feel incredibly guilty for that.

It’s really difficult to help people we just met, get up to speed on the complexity of our lives.  Whenever we have to bring in a new professional, it takes a long time for them to come to grips with the reality that this stuff is really happening to one family.  This is why we really don’t like to add people to the mix.  It’s exhausting and very time consuming.

When I look at the approach this psychiatrist is dead set on taking with Lizze, again I understand why and to be honest it even makes sense. 

However, he’s removing Lizze from the context of her life, placing her in a vacuum and expecting her to be able to do all these things.  The reality is that she doesn’t live in a vacuum and we certainly can’t shed the context of her life.

We need someone that is able to look at the big picture and build a treatment plan that is possible.  No one is asking for easy but we need to have a fighting chance and at this point, we’re beating our heads into the wall and getting nowhere fast. 

Lizze is very quickly losing hope we can’t allow that to happen. 

For starters, I stand behind my wife in her decision to seek a second opinion.  We done some research and found some local doctors that with the help of her case manager, might become an option that we didn’t have before. 

As one of my readers so aptly put it, she needs a doctor that doesn’t see her as patient #346.

She needs someone that is willing to work with her.  Someone that can see how much she’s trying and help her gain the tools and skills necessary to overcome as much of this as possible and regain control over her life. 

Beginning tomorrow, we will reaching out and attempting to locate a better fit. 

This isn’t really even about the antidepressants that I’ve been focusing on recently.  It’s about someone being able to see Lizze and an individual and not just a diagnosis.

Lizze is feeling powerless right now and that kills me.  She hasn’t given up yet and I want to make sure we get her the support she needs to make sure she never reaches the point where she does……

If there’s a lesson to be learned here it’s this.  As a person or patient, you have the responsibility and right to question your medical care.  If something doesn’t feel right or you are uncomfortable with a  retain approach, you have the right to seek a second opinion.  If you feel that a doctor isn’t a good fit, you have the right to refuse their treatment and seek a new doctor.
This doesn’t mean that that doctor is bad or has done something wrong.  It simply means that they aren’t the right doctor for you. 

I’m quite sure that the psychiatrist at the Cleveland Clinic has and will continue to help a great many people.  Nothing about this is personal.  To be honest, aside from the fact that he’s never seen NCIS, I actually enjoyed talking to him.  He’s a cool guy.  He’s just not the right fit. 

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Kim Kennedy says:

    Your absolutely correct. So…the search starts and you will succeed. She hasn’t given up hope and you follow in her footsteps and you will be fine. Sometimes change is good. Good luck to you!

  • Lost and Tired says:

    Thanks Kim Kennedy

  • dotdash says:

    You are getting strong
    messages from the medical community that there is a serious problem.  Last
    year it was a similar situation, was it not?  The doctor wouldn’t treat
    her unless your wife went to the pain clinic?   These are not messages
    that doctors send lightly and you should think very hard before ignoring the
    advice. Especially given the caliber of the places you are getting that advice
    from.   Especially given what has happened in the year since you last got
    that advice.  (Are you better off than you were?)  And especially given the BPD diagnosis (BPD dx’ed people are notorious resistant to treatment).  That said, of course if you can’t swing it financially, you can’t swing it, and no wonder you are tortured by this.  Without real treatment, lifetime debilitation is a real possibility — and what would that do to your kids, your marriage, your lives?  You are at a crossroads, for sure.  I feel so bad for you all.

  • person2 says:

    Your stand on some prescribing her anit-depressants is convenient one. If a doc from cleaveland clinic is taking this stand, he is not doing it for his personal reason, and what is absolute best for her. She has been taking anti- depressants for a long time, did that fix her health? what makes you think, it will fix it now. In fact taking medications that alter your brain chemistry can cause long term issues, that are purely from using the drugs. Taking a shorter route will only will make this worse, if that is even possible. From here, only way to go is, get this thing fixed. It sure will not be easy. I have a mantra that I use for MYSELF: “If you let time/situation take over your life’s outcome, and not do the difficult things to that are needed at a time (eg. such as going to college when you graduate from high school), life will handout results that it thinks are in accordance with our actions/efforts, and we simply will have no option, but to take them. Those results are often not good, on the way, one losses/affects the most critical things on the way”. Therefore, it is best to act, before life time/life takes over the outcome.
    I read from you blog, that Dr. Patti could also do the DBT Therapy ( If I did not mis-read), why not let do that. I know there may be reasons for now doing it, but those reasons may not be greater than her health. There are times, when you can drag/find alternatives etc. This is not one of those times. It is just like some one has a terrible illness/cancer, and just taking the pain killers will fix the problem. Since this is mental illness, it is not very visible, but equally fetal, is not treated with proper treatment.

  • person2  I think you are misunderstanding what’s happening. There is nothing about convenience being factored in here. As a patient, it’s your responsibility to understand, research and question any treatments being offered or provided to you by medical professionals. 
    In this case, the doctor at the Cleveland Clinic is a resident and saw Lizze twice, for a total of about 90 minutes. That’s it. He made a decision on how to proceed forward based on that 90 minutes and is unwilling to modify things to meet her individual needs until she gets into therapy that we can’t get into yet and not for lack of trying. 
    Do we let one resident who’s known her for 90 minutes change the course of her care, especially when it’s got the other professionals in her life concerned about the approach being taken. 
    Doctors are not perfect and sometimes you need to get a second opinion if your’re not comfortable with what’s going on. Also, for the record, this doctor didn’t want Dr. Pattie doing the DBT therapy because he wanted her to deal with everything else and DBT be done by someone new. So having her do the therapy wouldn’t have worked for him either.

  • Tammymcgann says:

    Would Lizze agree to be admitted to a psych unit for a few days in the Cleveland Clinic or a place that the Cleveland Clinic refers to?  See how long your insurance will cover in-patient treatment and what criteria needs to be met.  I have absolutely no doubt that any of her doctors would be willing to sign off on it.  This could possibly give her a jumpstart on the treatment she needs.  Plus, she’d be admitted so there would be no driving back-and-forth several times a day every day.  Maybe this could buy you a little extra time to find a more suitable physician and program for her.  Really grasping here, but it seems like you’ve run out of ideas and this could be a possibility???

  • Meaghan1985 says:

    person2  “She has been taking anti- depressants for a long time, did that fix her health? what makes you think, it will fix it now.”
    Because not all anti-depressants are the same. If Lizze’s current anti-depressants don’t work, there’s a very good chance that any one of the dozens of others available will work for her. I had to try several anti-depressants myself before I could find one that helped.

  • Peggy says:

    It’s time to move on. If he won’t budge even with Dr. Pattie talking to him, and Lizzie does not feel comfortable with him then this is not the doctor for her. If you don’t have insurance to cover the services for most mental health practitioners or assurance that they will be paid you don’t get beyond the office staff. This doctor should know that full well. Unless you have family that could help with travel and child care, or she qualifies for some medical transport through Medicaid, it’s just not possible with no vehicle. Since she is obviously committed with Dr. Pattie I don’t see this as a compliance issue. Good luck finding a new doctor.

  • raynette jones says:

    i am all about dumping this dr and getting another one. we are in america and we get to decide where to go for help. i have a love/hate relationship with insurance lol. it drive me crazy but i couldn’t afford anything without it. I am not at yall’s house or anything but Lizzie wants to get better and is compliant and i am tired of waiting on this dr to understand life is happening along with lizzies illness.. i don’t recommend the in patient route (but of course do that if you think it is right) because i don’t think she is that kind of “crazy” i think they are more for acute problems not chronic health issues. i am sorry you all are having to go thru this. tell lizzie to hang in there from one great mom to another

  • Abs says:

    Will your insurance pay for her receive treatment at Cleveland Clinic? If so, there are many churches in your community who continually use Cleveland Clinic. Why not reach out to those communities for assistance? I’m part of the Mennonite group in your area, but recently relocated. They are there to help. They don’t expect you attend their church, they won’t witness to you, and they don’t expect repayment.
    What about Lizzie taking a bus up there? It sounds like you’ve exhausted the “easy” options. But there are ways to make things happen. I have two special needs boys, so I understand the difficulty. But your wife’s health is important.
    What message is she sending to your children? That when it’s too hard you give up? You just don’t try to do what the doctor ask to get better? what kind of example is that for your children who have to work harder at everything? Next time the therapist says they have to do task A before they can get to reward B they’ll say, well task A is just too hard, oh well. She needs to do this for her children and herself.