Nickie's Nook

Bad Guide Dog handlers

Thu, 02 May 2013 19:51:07 GMT

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.

Why is it so hard to type a little blog post?

Tue, 30 Apr 2013 21:59:52 GMT

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

Building a life worth living: Why And is the new but in my life

Fri, 12 Apr 2013 20:40:41 GMT

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!

The good news!

Sat, 23 Feb 2013 22:55:27 GMT

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.

The news I never thought I'd hear

Sat, 23 Feb 2013 19:03:45 GMT

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.

Official first post from my MacBook Pro!

Fri, 01 Feb 2013 02:34:56 GMT

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!!

Mackbook Questions

Wed, 30 May 2012 14:44:27 GMT

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?

Help!!!

Mon, 21 May 2012 12:32:38 GMT

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!

My Road Less Traveled

Sun, 13 Nov 2011 12:45:59 GMT

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.

Reality distortion field: Or how Magical Thinking can get you Somewhere

Sun, 23 Oct 2011 23:58:43 GMT

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.

Independence Inquiries

Thu, 20 Oct 2011 01:32:37 GMT

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!

The Help Helped Me.

Wed, 05 Oct 2011 00:24:00 GMT

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.

The aspect I most enjoyed about the book is its excellent development of characters. As you read, in most cases, you really feel like you're actually sitting there, talking with and listening to the characters share their stories. I began to identify with each character and hope for the best for them.

Another aspect was the setting. The context of the book was well-developed, and things like the murder of Medgar Evers were not glossed over.

Toward the end, I really felt the tention increase after the book was published. In some cases, I'm happy, in some I'm sad, but mainly I feel sad that I've finished the book. Great job, Ms. Stockett!

The narration was also excellent! Each character had her own voice. That really added to the ambience of the book!

Celebrating Reading

Wed, 23 Mar 2011 02:06:42 GMT

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.

Sweet Relief

Tue, 25 Jan 2011 11:08:53 GMT

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.

SCS Journal: The pre-op period

Sat, 15 Jan 2011 13:14:40 GMT

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.

Surviving the Holidays

Sat, 01 Jan 2011 14:02:52 GMT

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.

Resolving

Tue, 21 Dec 2010 17:31:41 GMT

I'm overjoyed to say that my article about finding ways to balance my life and health more effectively was included in the latest
Eddition of Grand Rounds
hosted at one of my fave sites
Chronic Babe

Thanks for including me Editrix Jenni!

I survived a semester!

Tue, 21 Dec 2010 01:09:53 GMT

It feels amazing to say this, but I finished a semester! It may not have been picture perfect, but I did it. I came back to school and I'm glad to say I made it through. So how did I go from a girl who was struggling to get through a class to someone who successfully finished a semester?

It's really a concept called mindfulness that helped me. Mindfulness is about being in the here and now and that's what I did to get through the semester. I didn't worry about what was coming up later in the semester, instead, I dealt with issues in the here and now. I actually had a song that helped me. It's Johnny Cash's "One Piece at a Time". I wrote one sentence at a time when I had a hard or boring paper to write. I took each challenge one step at a time. I stayed in the here and now for the most part.

I think that's all one can do with a chronic illness; take it step by step. I know it worked for me.

I am Nickie and I have Health Issues, not the other way around

Sun, 19 Dec 2010 16:50:01 GMT

As the year comes to a close, I'm looking forward to 2011 with hope that this year will be better than the last as it says in a song from the 90s. I have all sorts of goals, hopes, plans and dreams for my health. I can't wait to see how I do with the permanent spinal chord stimulator, will I be able to walk more and feel more confident about long routes? I'd like to get the shakiness I've developed under control. And there is always the goal of looking after my mental health. In short, I want to feel better.

But as I've contemplated this, I realized that it's not so much these goals that really capture the essence of my resolution regarding health. No, what I really want and resolve to work toward is a day when my health needs are managed so well that they're in the background, affecting less of what I do.

Maybe there will still be the pills to take and I might have to change a stimulator setting or two, but mostly I resolve to be a woman first, to let the health care stuff have its place but not let it overwhelm my life.

I'm not saying that I won't give my health the attention it needs, but I do want to get smarter about what my health needs are and anticipate them so that they can remain in the background. I have one more semester, and I can think of several situations which are going to be easier if I don't have to watch my health like a hawk every second. Mainly, how great it would be to not have to worry about flare ups which come out of no where. With better control of my health, that would be less of an issue. It will allow me to work more reliably on assignments, plan to go do things with friends without worrying about a surprise flare and generally feel safer.

How can I achieve this? You ask. It's simple. Though it is definitely not easy. I will need to keep a balance of concern for my health and have specific times and places where I deal with my health issues. This blog and my doctor's office are two examples. Then I will have addressed my health needs. The next step is continuing the work I've done teaching myself to feel like a regular woman when it is not one of the times I use for caring for my health. Lastly, I will make sure to have the tools I need so that I can care for myself and stay comfortable, I will not neglect an issue hoping it will go away. I will be Nickie first and let the health stuff be something I have.

Stimulator Trial Journal

Wed, 15 Dec 2010 16:37:57 GMT

I have been struggling with what to write about the Spinal Chord Stimulator, or as these like to say here Neurostimulator. It is not because I don't know what to say, I loved it! What I don't know how to explain to my satisfaction is how wonderful this tool could be. So I'll start in a car, the one carrying me toward implantation of trial stimulator leads.

This is from a journal which started to try to document the experiment but didn't have time to write in like 1'D hoped.

December 6, 2010

Day #1

8:58 am

Here I sit in the family van, being carried closer and closer to a fate which seems less and less certain. Today they put in the trial leads so I can see how the stimulator works and whether it will relieve my pain.

I don't have reservations about the choice to do the trial, but I'm still very nervous. It is hard to think only of the here and now when my brain wants to rush ahead to all of the details of the procedure which I cannot picture.

I am also deeply excited about this procedure because it could really be the first step toward controlling my pain! That hope is almost too wonderful to contemplate, but it's a lot healthier than what-ifs and how-wills.

Ways I know I'm nervous:

1. Butterflies in the stomach.

2. Crazy dreams last night

3. being afraid to reach out to my friends.

4. Huge migraine yesterday.

5. Inability to contract Braille correctly.

9:48 am

Now I wait for my doctor and the Medtronics representative. It's hard because I am alone in a doctor's room and am scared. "Just get it over with," I feel like screaming, but I don't because I try to be a good patient.

I've brought my BrailleNote to take notes and, when possible, write in this journal.

3:40 pm

The leads are in. I have pain relief. It's going to take a while to get used to this sensation; my pain has been replaced by this tingly sensation. It does feel quite weird.

Those were my as you get them impressions. I'll try to fill in a bit more now.

The first friendly voice I heard entering the room was the Medtronics rep. She really knew her trade, a nurse by profession, her job was to make the machine work and cover my pain comfortably, teach me about the unit and also provide support before, during and after the procedure. She explained how the device works, just like rubbing a sore spot to make it feel better, but since this is CRPS, the extra stimulation is in the spine to block pain signals.

We spent the time waiting for the doctor talking about the stimulator controls or the patient programmer... I was surprised at how tactile the buttons were, no Braille or other tactile markings were necessary. The representative was patient and helped me greatly.

A nurse hooked me up to an IV and I was given a dose of antibiotics. My doctor went over the benefits and risks of the procedure and I was taken into the procedure room.

I was definitely scared about the procedure, and eventually was given some sedation as well as pain medication to help with the pain of inserting the leads and calm me down. The nurse was wonderful and we talked about various topics to help me stay distracted.

Once the leads were placed, it was time to confirm that the stimulation covered my painful areas. It did, with a bit of adjusting, and then it was time to tape me up so the leads wouldn’t move. Once that was done I was gently guided off the table and into wheeling recliner. The Medtronics representative met with me again and refined the stimulation so it was comfortable. I remember how exciting it was that she could touch my leg without causing me pain. That was truly cool!

Mom came back to the recovery room and we went over the controls again and then it was the moment of truth. Could I really walk with Julio and have the stimulator on? Amazingly, I could, and did. I almost cried at the feeling of not having pain in my feet and leg.

On Tuesday, I had class. I didn’t take my crutch, but I didn’t need it. This was the first time, since 2006 that I could work Julio without a walking aid of some sort. People noticed a huge change in my demeanor, I seemed less anxious and upset. I felt great, with good control of my pain I felt ready to take on the world.

I was so sad to give the unit up. It was really hard to go back to the pain again. I meet with the surgeon who will put the permanent unit in on January 3 so I don’t have a surgery date yet.

After the trial

Sat, 11 Dec 2010 03:39:12 GMT

I've finished my trial of the spinal chord stimulator and I am so glad I did it! I got 90% pain relief from the stimulator. Now it's on to the surgical piece, though I don't know when that will take place.

It's so freeing to have that control of pain. I never have that with meds. I can't wait to have it permanently!

We can't wait to stimulate

Thu, 02 Dec 2010 20:14:56 GMT

I finally have a date for my spinal chord stimulator trial. It's starting Monday. My professors were sent the following information:
"The spinal chord stimulator is like a pace-maker for pain. It uses mild a electrical current to interrupt pain signals. There are two phases of the process, the trial and the full implantation. For the week of December 6-10, I will be undergoing the trial. I will attend classes, but may be distracted by the sensation of the stimulation or need sighted assistance as I will not be too familiar with the controls. I will have restrictions on lifting, bending and stretching, which may require me to ask for extra assistance from professors and peers. I am carrying out the trial during school to test it in my normal environment."
"For more information on the stimulator, visit www.tamethepain.com
I sincerely appreciate your understanding and support during the trial."
My hopes are up, I don't mind admitting that. But I know the risks, infection, bleeding and such. I'm nervous about the unexpected or new aspects of the process, I've had my questions answered but still feel that feeling. And we all know how my body likes to do the unexpected.

The Ankle

Sat, 27 Nov 2010 16:45:24 GMT

It sounds so simple, a sprained ankle. I never realized how bad they could be. I can't tolerate ice well and I'm already trying to compress but that's like trying to stop an avalanch with a snow shovel. The pain is horrible, it doesn't matter if I have the brace on or not. I have to use the brace for "walking" which is painful even when trying to avoid use of the leg. In short RSD sucks.

I'm noticing that the burning is more painful than it had been before the injury. It's hard to be positive right now. I worked for months to get strong on that crutch and I'm back to the walker again. Heal ankle, please heal.

Thanks and such

Wed, 24 Nov 2010 03:26:39 GMT

First, I want to thank you all for your suggestions for what to take to the Mindfulness Workshop. I ended up using a passage from my book, which one reader suggested I do. It went over very well.

The bad news is that I fell and sprained my ankle really badly. It looks like I'm going to be in pain for my golden Birthday tomorrow.

That's the news from here.

Help wanted!

Sun, 21 Nov 2010 22:25:16 GMT

For the last several weeks, I've been participating in a mindfulness based stress reduction workshop. Our last meeting is Tuesday and we're supposed to bring something which has to do with mindfulness, meditation or something that feeds our souls. I'm having a hard time figuring out what to bring with me.

I'm not sure why I'm struggling with this so much, but I am. So I open this up to you dear readers, what short thing might I share. You know me from all of the writing I've poured out over the years, what strikes you as something I'd share. It could be something I wrote, or it could be a poem or song lyrics or very short story.

Thank you for your help!