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
my guest book

Please remember that this is a personal blog, and what works for me may not work for you. So make decisions wisely based on that information.

If you'd like to read some of the best posts in this blog, please go to LuLu and take a look at
Nickie's Nook: Sharing the Journey


Want to never miss a post?
Subscribe to my Blog's Amazing RSS Feed

Enter your email address:

Delivered by FeedBurner

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.

I'm sure discussions of this nature have happened more than once and in more than one place, but I thought I'd poll my friends. In less than a week or so, I'll be making a move toward greater independence. What I want to know is, what tools, tactics and tricks have you learned that you think I should know?

To put it another way, what is the most valuable advice you would give a person trying to increase independence, especially around the hous? Please comment freely, have discussions, invite your friends to this post, email me or tweet me your best thoughts. No thought is stupid or wrong. If it doesn't work for me, I'll learn that soon enough.

Thanks, loyal friends for your help!

I just finished reading the book The Help by Kathryn Stockett as recorded byNLS
and to put this review in a few words, the book and narration were excellent. I will try, in this review, to discuss the book separate from the narration. I'll put this behind a cut so the spoilers are hidden.
( Review under here )

About two months ago, I received a call I didn't expect. That's nothing new, but this one came just when I needed it. I was in the hospital with an uncontrollable migraine. I'd only had the spinal cord stimulator for about ten days, and was feeling a deep sense of despair. The call was from someone at the
National Library Service for the Blind and Physically Handicapped
assking if I would be interested in speaking at the 80th birthday celebration of the program.

Needless to say, I was thrilled. I was excited and ready to speak. I wanted to share my story, it was an opportunity I could not pass up. It was the encouragement I needed to keep going through the un-relenting pain of the migraine. Anyway, I said yes, and on March 3rd, I found myself at the Library of Congress, speaking about my experience and even what it's like to hear a book, your
book
recorded and the impact this has had on my life.

I wasn't able to record the proceedings, but I do have a copy of my speech in text format. I'd love to share it with you readers:

As a recipient of Talking Books for over 20 years, I'm pleased to be here for this historic milestone! I'd like to discuss some of my favorite books, which range from mysteries, to romance to non-fiction accounts of healing and hope, and share a more compelling story; the story of how the Talking Book program changed my life.

My favorite mysteries are written by Tess Geritsen, the program has several of her books and it would be difficult to choose a favorite. In the romance category, I enjoy books by Dannielle Steele including Honor Thyself, Accident and Amazing Grace. It is wonderful to be able to discuss these popular books with friends. In the non-fiction realm, I focus on books which inspire me, many of which talk about healing or living well with illness or disability. Some favorites include: The Anatomy of Hope by Jerome Groopman, Life Disrupted: Getting Real About Chronic Illness in your 20's and 30's, by Laurie Edwards, Miracles Happen by Brooke and Jean Ellison and I am the Central Park Jogger: A Story of Hope and Possibility by Trisha Meili.

I am an active member of the American Council of the Blind, and through that organization, I gain advocacy skills and meet wonderful people. One of them is Mr. Cylke; through his help, my book was produced in Talking Book and Braille formats. This allowed me to reach many readers who would not otherwise be able to access it. My book, Nickie's Nook: Sharing the Journey is about my journey as a person who is blind, a college student and a person with chronic pain. I describe the challenges I face when my blindness and chronic illness combine.

I will never forget the day I first read my own book in Talking Book format. While I had enjoyed the feel of the print book in my hand, it did not seem real to me until I heard it read by a Talking Book narrator. I nearly wept for joy.

In my book, I mentioned fear of a surgical procedure which could possibly relieve my pain, but which I was not certain would be safe or accessible for me or my Guide Dog Julio. In essence, the surgery implants a device called a spinal cord stimulator near the spinal cord to replace the pain with a tingling sensation. I feared I would be unable to operate the device without sight and that the tingling would interfere with my ability to feel the ground, an important task for someone with a Guide Dog.

Through the Talking Book program, a man with my same nerve condition, experience with a Guide Dog and a spinal cord stimulator read my book and contacted me by email. He alleviated my fears regarding the stimulator and we became friends. After eight years of treatment, my doctor told me my only option for pain relief was the stimulator. I would never have had the courage to undergo the procedure without the help of the Talking Book program.

The surgery worked and for the first time in eight years, I have excellent pain control. Thanks to the Talking Book program, I can now focus on living like any other 24 year old and I can read some wonderful books. The program enhanced my life.

I realize I've been remiss in writing about the stimulator surgery and how it's changed my life. That's right, I did saychanged my life. So here's the deal:

First, the surgery wasn't bad at all. I had a Braille consent form, a warm gown and warm blankets. I was well sedated and only vaguely remember them waking me up in the middle to find out if the stimulator was hitting all the the right places. Then I was lulled back 2zzz land. Next thing I know, I'm wake, my back hurts and they're washing me up. The recovery wasn't bad. My family and Julio were with me, and I was frequently assessed for pain control and nausea. I was reminded how to use the device and my family was shown how to use it as well. Once the medical team was confident that I was stabel enough to go home, I did just that.

The next two days were spent resting at various times, beading at others. Then I went to the<br<a href="http://www.acb.org/minnesota>ACBM</a><br>convention. I will admit that convention so soon aftersurgery wasn't smart in various ways, but it kept me distracted from one of the nasty trade-offs of this surgery, the temporary back pain. I sold some jewelry, laughed with old friends and new, learned a lot and thoroughly enjoyed myself. It was so nice to enjoy convention without the leg pain and with control if and when I felt it.

I've finally got a surgery date! After quite a bit of waiting for the insurance company to decide that they'd approve my spinal chord stimulator, the date is set for January 20. I feel excited and nervous, kind of like I did before Guide Dog school.

I know this device could greatly enhance my life, but I'm not sure how much. I've had the "Juno walk" of sorts, meaning the trial, and yet I remember that the Juno walk didn't hold a candle to the real thing; my loveable adorable Julio. What changes will I notice? How will the surgery go? How much pain will I be in after?

I also feel a great sense of peace about this. I greatly like and trust my surgeon. He actually had the components of the system for me to touch so I understand what's going to be done on Thursday. That's pretty darn amazing in my book. He seemed very knowledgeable and reassuring. I felt that we clicked.

Anyway, that's what's going on from here.

Many of you on
Twitter
know that I'm not having an easy time this season.

First I sprained my ankle two days before Thanksgiving. As if that weren't bad enough, it's been slow to heal. Then I resprained it on Thursday, two days before Christmas. Anyone noticing the pattern here? Then I started to feel let down after my trial stimulator was taken out. It's extremely hard to go from 90% pain relief to 100% pain. And finally there's the rushing around, feverishly workingon beaded creations to give as gifts.

And for some reason, I felt very isolated. At many gatherings, the topics being discussed are ones I can't relate too. Then there's the anxiety of what people will think of the gifts I gave them. And finally I haven't really seen my friends much and that makes it hard. In short, I was frazzled,depressed, lonely and anxious. Not very much of a Christmas spirit.

So what did I do to turn that around and find time to cope with my pain and other symptoms? I found several things helpful.

Quiet Time

When my pain got to high from my foot dangling down, I went to rest. I used whatever distress tolerance skills during the laying down part and other times, but we'll talk about that later. If it all got to be too much I excused myself. I was fortunate enough to be with family and friends and on Christmas Eve and some of Christmas day, I just took that time out. It helped me a lot!

Using Distress tolerance skills and mindfulness

There are things in life that you can't control. For me at Christmas, spraining my ankle certainly didn't add to cheerful excitement. And, as I mentioned previously, i was in a lot of pain. I also had to deal with stress surrounding my handmaid presents. I couldn't change those things, so I had to use what are known as distress tolerance skills. Basically they're things that will make youfeel better when you're uncomfortable or emotionally uncomfortable.

I used many skills, mostly distraction and relaxation, to help myself tolerate the distress of any situation. My goal was to find comforting escapes which were healthy.

Social Butterfly?

While resting was important, talking to friends proved to be hugely helpful. It kept me from getting too antsy.

Mindfulness

I found that keeping my mind in the here and now makes a difference.

Knowing where your Tools Are

Finally, it was important to know where my comforting tools were. In other words, what was in my toolbox.