Thanks for stopping by Nickie's Nook, my place to write what I'm thinking, feeling, experiencing or anything else I want to write. It's also a place I want others to enjoy. If there is something here that you want to respond to, pleas do. A nook is no fun with no one to share it with. One way to talk back is to comment. Another is to visit and sign
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Nickie's Nook: Sharing the Journey


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You might get the idea that I'm working on the issue of shame as part of my DBT. If you have that idea, you'd be right. Shame is a nasty issue. It's not the same as guilt. Guilt says "I did something bad". Shame says "I am bad". It's also the fear of rejection. Guilt is more about doing something that goes against your moral values. Shame might be good because it helps us function in society and helps us to stay safe in society (that's not the best way of explaining it, but I'm still working on it).

Anyway, as I've been reading more of Brene Brown's work surrounding shame, I realized that shame is extremely problematic in the blindness community and the Guide Dog using community in particular. Or is it just me?

Here's a scenario: I'm walking through church. There's a table of food. Julio snags a cracker with cheese. Everyone thinks it's cute, but I'm mortified. My first thought is that I'm a terrible handler.

Here's another one: Two Guide Dog handlers walk into a building (no, this isn't the start of a joke). They encounter each other and both dogs get excited. The question comes up of whose dog got distracted first?

Now I'm not saying that it's okay and acceptable to allow our dogs to run the world and behave badly. Or not take responsibility for our dogs and their behavior. But why do we assign so much blame and shame to a simple situation where the dog behaves badly? We need to figure out ways of learning better handling skills and control over our dogs' behaviors without causing undue shame.

It's so easy to say that someone's a horrible handler when the dog miss-behaves, but what's really going on is that the person, and dog, need to improve their skills. One mistake does not a horrible handler make. And, let's face it, dogs will be dogs. We correct them, reinforce and reward good behavior and do the best we can. Even so, stuff happens, we make mistakes, but we aren't mistakes, or horrible. Maybe our skills and actions are horrible, but we are not.

So here's to all of us, when we make mistakes, let's remember that we're not horrible handlers, we're not horrible period. And let's remember to leave judgments somewhere else.

Okay, so why is it that I used to blog so much and now don't? It's still something I'm working through, but I've come to the conclusion that I'm afraid to write something imperfect, wrong, incomplete and just plain all around crappy. So I sit here with ideas, thoughts and don't write them down. I can't tell you how many times I've thought the words "that's not something I should write about. It's not happy enough. No one wants to hear about that." Well, I'm going to try to write anyway. You may not have those feelings about writing, but I bet you do about something. Here's a great talk by a social worker that addresses
Listening to shame

I'm guessing that many writers have noticed my interesting (possibly annoying if you don't know why I'm doing it), practice of using the word "and" where you'd expect to see "but". Here's why I"m doing that, and why it makes such a difference in my life.

I haven't made it a huge secret that my pain has drastically affected my mental health. I won't get into it too much, but let's just say that I've suffered a lot. Anyway, I've also been fortunate to have some great professionals and friends who've come alongside me and helped me get through the tough times. Now, I'm learning more skills to deal more effectively with life and "building a life worth living".

I've been led to a therapy called
dialectical Behavior Therapy

A dialect is basically when you have more than one thing that is true. For example I might say "I want to write this blog post and the words won't come out the way I want them to." If I let the and be but, I might never write this post. Instead, I convince myself that both are true and I write the post anyway.

DBT is based on the idea of "Wise Mind" the idea that you have your reasonable mind (based on facts, tangibles etc) and your emotional mind (your emotions). Often we get stuck in emotion mind which can get out of control and cause misery. Wise mind is that and, which does't say that only one can be true when both are actually true.

Anyway, if you read the Wikipedia article I linked to, you'll get a more thorough background of the therapy. I just want you to have that background so you'll understand what I'm talking about.

I've been in DBT for a bit over a year now, working with an individual counselor since January of last year and starting skills training group last April. I just graduated the training group on Monday. I decided it's time to share more of what impact it's had on my life. I'm not done by any means, I have a long way to go. However, I have come a long way. If I had to sum up DBT's impact on my life in one word, I'd say awesome!!!

DBT has a slogan of "building a life worth living". Through skills and hard work, I've been doing just that. I've been reducing behaviors that are unhealthy and increasing so many good things. That's not to say that I've escaped my life, or that DBT is a magic wand that removed my pain, depression, anxiety or PTSD. It hasn't completely changed my circumstances or anything. It's fair to say, though, that DBT has changed my life.

I have resources I never had before. I understand myself better. I can tolerate a whole lot of awful stuff that I can't fix, and fix the things I can (well, not always). If I'm feeling strong emotions, I know what they are, how to check the facts, how I can "regulate" them, what's making it hard to manage them and how to make myself less vulnerable to the negative ones in the future. It's really quite life changing!

I do think that this does help build a life worth living. Yet, I've also come to see that my life was already worth living, it's just even better now!

About a week ago, I got some news that feels so long over-do. My special major in Social Welfare has been approved!! A special major is a major which doesn't actually exist. It's one which a student creates because they need a combo of courses that meets their needs in a way that no typical major does. In my case, the internships required in a social work major weren't feasible. I chose to take the option of creating a major with really sounded better anyway.

Basically, the major focuses on disability, illness, some social work, advocacy, and psychology. It's a balance I like. I am sad that I won't get the cool BSW title after my name and won't have a license to do some things, and I can also get a masters of social work MSW later, which I'd need to do some things I'd like to do anyway. I think this is a good option for now.

I'll graduate on May 25, 2013! I can't wait, but will have to… It's a great way to balance out the sadness I wrote about in my previous post.

You know how you read news stories of horror, and you think I hope that never happens to me!e Well, for me, there's been a special type of that kind of story that hits close to home.

It's hard to get even remotely involved with the RSD community without hearing about people who have systemic or full-body RSD. I think it's a special type of hell, but it has nothing to do with whether you accept the grace of Jesus' sacrifice or not. It's the hell of burning pain, wherever it is on your body, accept with systemic RSD, it's all over your body. I won't go into the horror stories I've read. I hate to even tell this story because I don't want to discourage those with RSD, but I need to tell my story.

Back in November, I went to see a well-respected RSD specialist at a teaching hospital. First off, I'd never been to a teaching hospital before. The thing is that appointments are quick and there are a ton of residents and students in the room. I felt like I didn't really matter, like I was just exhibit A in a long list of patients. The rsd case in room 8. I felt like I wasn't in the room.

The first comment made by the doctor to his students was "as you can see, she has systemic RSD". He then went on to list many of the nasty things that come along with this. If you want to find out about them, there are plenty of horror stories on the internet, I don't wish to flood my blog with them, what I'm writing is hard enough.

Without discussing any other treatment options, asking me about what I've tried or suggesting anything less drastic, he examined me and said "the only hope of getting your life back is to go into a Ketamine coma for five days."

You can't imagine how that made me feel. I did push and found a few options I was sort of aware of. One, which seems most effective and least drastic, is a five day conscious infusion, obviously you sleep at night. This is what I will go with, if all of the pre-tests go well. There is a waiting list, and I won't be near home for the treatment, but at least it is less drastic and has a chance of helping me get some relief. I've gone through the blocks, biofeedback, counseling, medication, physical therapy, acupuncture and pool therapy. We've done what we can.

Emotionally, it's hard, hearing the words "the only hope you have of getting your life back" and then a drastic, dangerous and uncertain option really doesn't help your mental health. The truth is, I do feel like I've lost so much to RSD. I've lost many physical abilities, my ability to dance, my spunk, many dreams feel unreachable in my current state, my ease of being and my ability to act like a typical twenty-something. It's hard to use what's called my "wise mind" and look at the other part of it. But here it is.

I haven't lost my life. I haven't lost my friends. I haven't lost my writing. I haven't lost my faith. I have gained empathy. I have gained a greater understanding of who God is in the middle of a storm. I have gained new hobbies like beading. I have gained some friends I wouldn't have met.

I still feel hopeless much of the time, and I know that there has to be some plan for my life. I'll write more about the other side of the dialectic in the next post, and hopefully in the post after that, I'll explain more about dialectics.

Did you wonder if I was alive? There are days when I feel so sick I wonder that too. But rest assured that I am alive and happy to be there!

I've finally grown comfortable enough with the MacBook Pro that I'm able to write a LiveJournal again. So…

Nickie's Nook is back!!

As I'm getting used to the Macbook Pro, I'm starting yto like it. I do have questions, however.

Is there a good, accessible LJ Client?
Which is better, Safari or Firefox?

I once had a professor who based a speech on the phraise "what the hell were you thinking?" Well, folks, that's what I'm feeling right now about the new MacBook Pro. It's been over a week now and I still don't know what I'm doing or even what to ask. It's not like I hate the Macbook, it's just that I'm confused. I'm still stuck doing most, if not all of my stuff on the windows netbook. Help!

I've just staarted using the app 365 challenges. Today's assignment was to read the poem by Robert Frost
Stopping by the Woods on a snowy morning
The "mission" is to read the poem and share with someone your journey on the road less traveled. This fits what I'm thinking about writing in this blog soon. But here's a general starter for you to read.

I think the road less traveled started when I first got RSD/CRPS. I have since met someone else who experiences blindness and RSD, but it is the road less traveled. Then, I got depressed and didn't write much. The exception here was putting together my book which is still offered.

I deal with many health conditions and psychiatric challenges. I'm not the only one to experience this these either. But when you put it all together, you end up with one heck of a mixture! For me, the road less traveled is that of healing and growing every day. (One of my affirmations). The road less traveled is a zigging zagging filled with moutaines, vallies and holes waiting to suck me in if I let them.

We can cope with our challenges, we can even heal from some and manage the rest. I will go into the road less traveled soon, we'll tThere is recovery. If I leave you with anything, I hope it will behope that you can indure, you can cope, you can grow and take it one step at a time.

I was watching the sixty minutes interview around Steve Jobs. It was fascinating! I keep thinking about what people called his
Reality distortion field
Beyond the fact that he pushed people further than was sometimes possible to you and I. I believe arguments were held with many bleeped out words. That said, when used on ourselves, I could see it being beneficial.

As part of a group I've been participating in, we've been working with affirmations. Basically, I frame things I want to be true as though they are already occurring. That's not how everyone does it. And some of these things are things friends have said are true about me but I haven't been able to learn. I'm counting on that idea of reality distortion or believing things are true even when I don't always feel them to be my reality. I also had A very very very close friend record them to help me absorb them. I can already tell they are helpful, even after just one week of continuous practice.