21-day stay at a Dual Diagnosis Center - progress

[qcarolr]

He is still clean and sober (almost 5 months now!), and he isn't in any trouble with it, but he is still leery of going out in the "cold, cruel world" because of all the triggers and his fears of relapse. He's a good guy, and is the most verbal, creative, thoughtful and helpful than he's been in years, but is still cautious and lacks self-esteem. His NF Therapist knows all this and is doing what she can to help him with all of that. He's a lucky guy... .  

Rapt Reader - is there a plan or possibility for your DS to find support in a peer group to help build his confidence and to have support in stepping out into the world. Kind of like access the 'therapeutic friends' or a mentor relationship?

My DD and I have talked about this. Her lonliness, which often shows up as boredome, is a strong factor in her getting back with toxic friends that destablilize her. This is really really evident to me with her recent jail stay. She was in a dorm style pod with required class participation. It is a transistion group mostly from what I can gather. And DD has shared how feels better about herself - that she can make friends - the others in the living skills classes are also wanting to make their lives better. She is talking about the community programs that are similar that she has available to her. Before the recent week in jail she did the intake at a mental health recovery program. THey can offer her similar classes. I can see motivation - if she can get connected right away.

qcr

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Rapt Reader]

Thank you, qcarolr, for your insights... . After reading it, I contacted his Therapists and we are starting to work on it. I'd love for him to be involved with a DBT Group, but there may not be one locally available, and if it is, it may be hard for his Mecicaid/Insurance to cover it (something having to do with his Psych being someone not a part of the Group in town that is/was available). We're all working on it... .  

We had another little insight on Saturday after his Neurofeedback session. Now that he's doing the upgraded Cignet Program, he felt really good after the first one, but started with some sort of agitation following the 2nd (2 Saturdays ago). He seemed "out of sorts" that weekend, and told me "for some reason I feel angry, and I've been separating myself from you and Dad so as not to cause an argument... . " when I asked him if he was depressed or something (since we really hadn't talked to him much over that time).

He had another session last Wednesday, and we talked to his Neurofeedback Therapist about it all that day; she told him if that ever happened again that he should call her for a free "tune-up" since right now the new system has her using a different frequency than before (she'd continued with the one he thought had worked well, and when the same frequency had caused him agitation after the next session she wouldn't have known since we never contacted her). So she adjusted the frequency (higher, I think) and he felt better after last Wednesday and this past Saturday, and is doing really well now.

On Saturday she reminded me that though he'd had a little "setback" with the agitation that past weekend, we had to look at it also as a step forward: He noticed the anger/agitation, and instead of just impulsively arguing all weekend with his Dad and me, he processed the emotion and figured out that detaching himself from the emotion and us would be in his and our best interests. TLCs: Tiny Little Changes that I had missed myself, but now realize mean a lot... .  

[Rapt Reader]

About 3.5 years ago my son, like many people who are/were heroin addicts, was diagnosed with Hepatitis C (without Hepatic Coma NOS... . but I don't exactly know what that means). A very insidious affliction that needs specialized treatment. When he was first diagnosed he had to go to a Gastroenterologist every so many months for a course of immunizations against the Hepatitis B infection, and after 1 year (I think) he was finished with those courses. Then, the next step was that he had to stay free of opiates for 6 months so that he could start more courses of treatment with Interferon. I'm not sure how that is administered (injections?), but running in the circles of users that my son was involved with, he heard horror stories about those treatments--apparently they are similar to chemotherapy with similar side effects.

He was scared to death of that next Interferon step, and I noticed a pattern for the last 3 years or so: every time my son, whether on his own or with the help of a rehab program, was clean and sober for 3 months or so, he relapsed. He never made it anywhere near the 6 months he needed in order to go on to the Gastroenterologist for the next phase of treatment with Interferon. At first I attributed it to the fact that he was an addict, and recovering from that was hard and he just couldn't do it. Which is why he ended up in a second (normal) rehab, and now just this past March-April 2013 in the Dual Diagnosis Program that changed everything for him. Lately we've talked about it, and he has admitted to me that one of the reasons he would relapse before the 6 month mark in the last 3 years was because it was a way to put off getting the Interferon treatments. His Dr., OP T & Psych were not happy with him when this happened, but never put 2 and 2 together to figure out that his relapsing had anything (in whatever small or large a way) to do with his fear of Interferon.

This week has been another turning point for my son. On Monday he had his OP appointment, and the Therapist worked with him to start preparing for taking the Interferon treatment. On Tuesday he had an appointment with his Psych, who also worked with him about it. His Psych gave him instructions on which additional testing he wanted done (some kind of viral count?) later on that afternoon when he saw his Dr. for his monthly check-up and blood testing. His Dr. then worked on preparing him for the Interferon treatment, and had my son agree for her to call the Gastroenterologist for the first appointment for these treatments. Since my son has now been clean and sober for 5.5 months, and the appointment takes about 2 weeks lead time to set up, he will be the required 6 months sober by the time he will go. He told me all about this after his Dr. appointment... . He was nervous about it, but kept a stiff upper lip about it.

Today, after his Neurofeedback sessions, we had a chance to chat. He was pretty upbeat (I'm sure the NF T is also working with him to get him prepared for this new treatment), and told me that he is happy he will be continuing the NF sessions while undergoing the Interferon treatments. I said to him: "It must make you proud that you've made it this far... . You have really made a breakthrough, here; it must feel really good!" He sorta grinned and said: "Yeah... . I am proud of myself... . "

I'd remembered that when validating him, I had to keep myself out of it. But, when I didn't get any pushback from saying that (in the past even saying that he must be proud of himself, when it had to do with his sobriety, would result in him rolling his eyes, or even just ignoring me), I said: "I wanted to say that I am proud of you accomplishing this, but I didn't because you don't like that" and I smiled.

He replied: "You're right... . but it's not because I don't want to know that you are proud of me; it just makes me nervous that I will disappoint you in the end." And he was smiling and calm, and I could tell that he wasn't afraid of that right now... . It has been a very good week so far, and even he admits he's had a breakthrough... .

[vivekananda]

so, so good to hear that story   I am proud of you RR 

I am very familiar with Hep C. I am also familiar with the old interferon treatment. I also know what can go wrong if it doesn't work. My dh has Hep C and a liver transplant and we are so lucky.

In some ways it is good that your ds has avoided the treatment, she says wryly smiling... . in recent years there have been big improvements in the treatment. It used to be just interferon injected daily and the effects weren't great - but not as bad as the horror stories you ds has obviously heard. Now it is probably interferon with pegolated ribovarin or a version of that. I think the number of times it needs to be injected has also improved. The side effects have been reduced, the effectiveness of the treatment is significantly improved.

I expect your ds had built up this image that wouldn't fit the reality today. Tell him for me, if appropriate, that there's a woman on the other side of the world holding his hand for him throughout the process. He can skip through this 

cheers,

Vivek  

[Rapt Reader]

Thanks for the encouragement, Vivek   

I have read that the treatment has gotten better and a bit easier, but he's never really believed me (the stories he's heard were apparently graphic and horrifying to him). I've mentioned that we can research it, if he wants to, and that's something he may be interested in doing. I'm so very proud of how he is dealing with this... . He may not have a job, a car, any money, a girl, etc. But, he's here with us, almost-happily living his life again--a part of the family, helping out, watching a TV movie here or there with us, eating meals with us (and sometimes even helping me cook it or cooking it himself), and starting to do "normal" life things that don't in any way involve anything harmful to himself or others.

Like Valerie Porr says in her book "Overcoming Borderline Personality Disorder": Don't expect things to be like you expected them to be; accept them as they are and be happy for all the tiny little changes... . Of course, that's paraphrased, but that is what I got from it, and that is what I hold on to. The life I expected and wanted for him is just not there; if he ever gets that far: Who knows? For now, he's taking it one step at a time and doing no harm. What more, really, can I expect from him? After all he's been through... .

Thanks for your knowledge; I'll pass it on~~he knows about Vivek  from the other side of the world, and is rooting for you and your daughter... . I'm sure he'd be happy to grab that hand of yours for support... .

[vivekananda]

that is soo sweet. Pls tell your dds I really appreciate his kind thoughts. Darned if I don't feel them across the ether either!

One of the most insidious effects of Hep C is fatigue. It's not the same for everyone, but nonetheless Hep C is a debilitating condition. He may be surprised at how good he feels when the treatment is successful. It may just give him a whole new burst of energy... . goodness knows where that could lead 

Little steps, baby steps, two steps forward and one back ... . even giant leaps from time to time.

[qcarolr]

RR I so appreciate the hopefulness your story gives me. DD27 continues to be able to manage beinging in our home, relating in positive ways with gd8, and we are able to talk about the why's of her neediness for my involvment with her. This helps me with finding what is supportive vs. what is enabling. She actually asked today what she should do next. She wants to get a job at a thrift store. She loves gathering stuff - nick nacks and clothing etc. She started this dumpster diving when homeless, then continuing this and filling my home with so much stuff. I am realizing that instead of veiwing this a chaos and clutter, I need to respect what this gives her. A REAL GOAL THAT IS REACHABLE.

I am moving more of this story to my other thread, to not hijack yours. I am rooting for your ds to keep on this path of recovery. He is lucky to have you there to encourge him.

qcr

[Rapt Reader]

Thanks, qcarolr~~I'm really glad you are starting to feel hope, and happy to help with that 

I think you might be on to something about your daughter's motivations while hoarding; that's a good insight, and at least helps you to tolerate her actions better. And, the fact that she is not causing strife at home, and is doing well with her own daughter... . You know, that's even bigger than a "tiny little change" for her; it's a GREAT change and helps the whole family! Let's hope and pray she keeps taking those baby (and sometimes BIG!) steps forward... . It's the best we all as parents of pwBPD can hope for, and sometimes it's enough, right? They do teach us to be more appreciative of the little things, don't they?

Good luck and Godspeed to you and your whole family... .

Thanks to you, too, Vivek ~~I told my son what you said about the fatigue (which he does have almost every day) getting better after treatment... . He was surprised by that, and was glad to hear it. He's still scared, though, about the future treatment plan; I'm trying to keep him optimistic and open-minded to its not being as bad as he fears. He doesn't believe me so much as he's willing to believe you    Good luck and Godspeed to you and your whole family, also... .

[peaceplease]

raptreader,

Your post is so inspiring.  I am happy for you that your ds is progressing forward.  Your post gives us hope.  Thanks for sharing!

peaceplease

[peaceplease]

I wish that we had a provider that used neurofeedback therapy that was covered by insurance.  I see that we have one in neighboring state that is 57 miles from us.  I would be willing to travel that distance, but I am quite certain that my dd's insurance would not cover in another state.  I wouldn't even mind trying it.  I highly suspect that I have adult ADD, but am not willing to take any of the meds.  Heck, my whole family could benefit from it.  My dh, and ds are addicts as well as my dd.

Hopefully, more clinicians will be using this therapy.  It sounds promising!

[Rapt Reader]

Hi, peaceplease  

I agree that Insurance should cover it (it doesn't, and my son goes 15 minutes down the road to see the NF T!), and I wish that there was more research on it... . I myself went for 7 sessions for my TMJ (for grinding my teeth at night and clenching my jaw during the day), and now I don't have to go anymore. I've stopped the grinding at night, and in the daytime every now and then--and not often--I will notice that I will begin to clench, but right away I notice it (I never did before) and stop. My jaw hasn't been this pain-free for so many years that I don't even remember the last time it felt this good.

I can't vouch for anyone else, but for myself and my son, we've been satisfied with the results. I know other people who have experience with it being used for just ADD/ADHD (my niece, my friend's son, my sister) who are satisfied, and another niece who found relief for Anxiety and 2 friends who were happy with the results for migraines. All anecdotal, I know... . My son's DXs are so varied and so many; I'm not sure what the total outcome will be. Will he ever live a normal life like the other people I know above, who are doing just that? I don't know... . But he's better than he's ever been in the past and for now I'll be happy with that.

Thanks for stopping by; it was nice to see you  

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[Rapt Reader]

I have a couple updates... .

My son's blood work and abdominal ultrasound have been done, and his appointment for his first visit with the Gastroenterologist is set for almost 2 weeks away. He talked to that office himself, made the appointment, and is dealing with it so well that I'm really surprised. He's OK, and this is going to happen after more than 3 years of trying to get to this point! A real milestone... .

Also, I've told you that he is an artist: draws, paints, writes lyrics, composes music on a guitar. He also is a gifted writer, and I've been encouraging him to write something ever since he's been back from the DD Center in the beginning of April. His self-esteem and self-confidence has been such that he wouldn't even start something art/writing related; he was afraid it wouldn't be "perfect" or that he would never finish. Sadly, that is his Modus Operandi, and he couldn't get to the point of entry, art-wise.

For the last month or so I've been talking about this with his Neurofeedback T and she's been working with him on it. For at least the last month of treatments every Wednesday and Saturday, she's been putting this as a priority, along with all of his other needs relating to all of his DXs, behaviors, symptoms. We knew it would be a long slog, but I've always felt that if he could just get into his "artist mode" his feelings about himself would improve, thus improving his recovery process.

Well, today he was talking to my Mom on the phone (another little hurdle jumped), and she must've asked him about his artwork, and he chatted with her for about 5 minutes. He told her that he's been drawing here and there, and that he's working on a story. He's been writing off and on, sometimes through the night, for the last few days. It's a great story, and if he ever finishes it (he's still realistic!), it will be the best thing he's ever written~~he thinks it could be important... .

I'm pretty psyched, but I can't let him know; he gave me the phone when he was done and just grinned. I am thrilled beyond belief, but have to be cool about it. I know from experience that if I overreact (which means just reacting happily, in his world), he will freeze up with fear of failure and then stop writing and drawing. I just smiled and nodded my head in approval as I took the phone, and chatted with my Mom. That's all the validation he can handle at this time... . And it's OK with me. 

[vivekananda]

I long for the day when I can express my emotions freely and with gusto, without repercussions ... . the positive ones that is 

Good to hear he is returning to what is important to him eh? Nice to be able to 'chat' with granma for 5 mins too 

Very good to hear the Gastro appts are in hand. Have you asked him if he wants you to come to the session where he gets 'kitted up'? He may appreciate company for that one... . just a little moral support... .

I was thinking of him last week and was this is what I was thinking. If you can see the stars at night where you are (ie not in a very big city), then could you go out into the night sky, look up and see all those stars. Then instead of looking up, can you imagine being up there looking down into your own backyard where you are? Do you get a sense of the different perspective? Two things I would want for your ds to learn from this. 1) we are but specks in the universe and these problems that take on such immensity in our minds are rather tiny really. 2) if you cast your star eyes over the whole earth, you can imagine me, there too, looking up ... . and all the positive energy from all over the earth sending out their own little vibrations - just people doing good things for each other, loving each other. It's a good world. And that positive energy is for us to tap into anytime.

We're nearly out of time for this thread now RR... . time for the next phase perhaps?

best,

Vivek      

[Rapt Reader]

Yes... . It will be nice to someday be able to express my happiness and excitement with his progress, when I see the TLCs that show him putting one foot in front of the other, without worrying about it causing him to put the brakes on. I so know what you mean.

And I will be going with him to his first appointment, and probably the rest, too. It's about 45 minutes away, in a "big city" and we'll make a day of it each time. We are both looking forward to it, as a way of taking lemons and making lemonade... .

We live in the country~~big sky everywhere and lots of stars when there are no clouds... . We all like to lay out under the stars on a warm summer night, on the cool grass. I'll remember to think of it the opposite way; what wonderful poetry you've written! I'll be sure to share it with my son; we'll look at the stars and think of you and your good wishes from the other side of the world.

And, yes... . I know that the limit is pretty much up. I actually knew it when I posted today, and wanted to end this thread on a very happy note, and when I heard my son talking to my Mom about his artistic endeavors, I thought "Yes... . this is good... . "

I'll continue his story on another thread... . Thanks to you, and everyone else who has been reading it 

[Suzn]

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