Nickie's Nook

Links for 2008-08-06 [del.icio.us]

Thu, 07 Aug 2008 00:00:00 -0500

Writing to Ease Stress?

Links for 2008-08-04 [del.icio.us]

Tue, 05 Aug 2008 00:00:00 -0500

July Pain-Blog Carnival | How To Cope With Pain Blog

Links for 2008-08-03 [del.icio.us]

Mon, 04 Aug 2008 00:00:00 -0500

Awake patient reads aloud during brain surgery - CNN.com
Pretty incredible!

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Sun, 03 Aug 2008 00:00:00 -0500

Links for 2008-07-31 [del.icio.us]

Fri, 01 Aug 2008 00:00:00 -0500

A Chronic Dose: A Chronic Illness Blog: An Open Mind

A goal-check-in of sorts

Thu, 31 Jul 2008 20:30:55 GMT

I bet most of you have forgotten about these
goals and guidelines for 2008
As I've been working through my own personal hell of this flare which won't go away, I've strayed from blogging far too long. Depression and anxiety have helped me to create a world in which I see the world so darkly that it isn't worth trying to write. There are several lies this flare has gotten me to believe which have prevented me from blogging. But I'm back now, and I want to continue the healing, even as I still struggle with health issues and the fall-out they have caused. Please be gentle with me, I'm taking a tentative step out into the world, allowing others to read my thoughts and seeking the support my cognative thoughts tell me I don't deserve.

This flare has lasted longer, been more painful and taken away more of my joy in life than any other flare I've ever experienced in my five years of living with this disease. Every gain I made was a gain I could not easily keep. We fought to find the right combination of medications that would allow me to sleep at night, be moving around in the day, manage my pain effectively enough that I could function in therapy and not cause unbearable side effects. We've also started looking at new therapies to try which will hopefully give me more skills to take care of myself and, as a consequence, help to keep me more comfortable. Now that I'm starting to feel like writing again, I want to return to those goals and see which ones I can make progress on.

Physical

Drink more water, juice and healthy stuff: Okay, I admit to slipping up on this one. I still am trying to drink water and juice, but I admit that sodas and coffee still have a big hold on my drink quantity. I've started to try to encorporate water into my days when it makes sense. I'm currently experimenting with trying to drink a glass of water every time I get up to go use the rest room.

Increasing consumption of healthy snacks: I've been eating more granola bars than chips, but I still enjoy my chocolate and candy. I've also tried to branch out and eat things I didn't eat before. Fore example, when I go to a restauarant for breakkfast, I get a bowl of oatmeal and some fruit. Many people think that's weird, but I do notice that I have a lot less nausea than I would if I ordered a big breakfast.

Start an exercise plan or work with a physical therapist: I've started doing physical therapy in a special pool which has water that's about 92 degrees. It's absolutely wonderful! I think this is going to be a key point in recovery, especially in the areas of weight-bearing and sensitivity to touch. I've only had one session so far, but I already know that I love it!

Find new therapies which will decrease my pain: Without wanting to outline a lot of what I've been doing, I will tell you that I've gotten my medications adjusted, tried some more nerve blocks (with sedation this time), and added some other therapies I'll write about in other portions of this update. For the first time in a very long time, I can say that my pain is finally down in the 6-7 range of the pain scale for most of the day, and that my breakthrough pain is finally able to be managed. I don't know how permanent this will be, but I'm enjoying it while I've got it.

Emotional/psychological

Blogging about my emotional responses: I've been very bad about following up with this. I'm trying to start doing this more, though a lot of this is being done privately. I'm slowly starting to see my blog as a safe place to share again.

Seriously consider counseling: One thing I regret about this summer is that I don't have access to the counselor I worked with during the school year and I never made the effort to look for someone who I could work with on a temporary basis. I think that, in hindsight, that would've been very helpful.

Learn one new mindbody skill: I'm working with a wonderful biofeedback therapist right now, and I'd like to write more about this in a separate entry. It's a wonderful tool to use, and I'm really glad I'm able to do it.

Do at least 20 minutes of relaxation skills a day: This one is a bit challenging, but since I'm doing the biofeedback right now, I'm actually pretty good about racticing my various skills and improving my ability to use them.

Spiritual

Praying more: I'm starting to get better about prayer, and I've also been able to reconnect with the group I prayed with every Monday night during high school. They call me every Monday night and we pray. I'm glad to have the comfort of prayer back in my life again and the ability to talk to God is wonderful.

Read the Bible: I need to confess that I'm not as good about this as I'd like to be. I'm getting better, but haven't made it a daily commitment, which is where I'd like to be.

Start a grattitude journal: Well, I started it, but I've been horrible about trying to continue it. I think the key here will be to reward myself for any writing I do for this, and not try to scold myself for not doing it well enough. I've set myself up for failure by scolding myself for not writing enough, and now it's hard to want to do it at all. I think the key with this is that I need to want to do it, or at least feel like I can do it, not that I have to do it.

Read a spiritual book: I'm slowly making the move toward more spiritual literature again. I recently downloaded the first book in the Left Behind series, and read it. That's a slow step toward improvement in this area.

Blogging

Need I say more? I'm sorry!

Book

I haven't done much in this area either. I'd like to do better, since I'm within sixx books of reaching a relatively significant milestone.

Links for 2008-07-30 [del.icio.us]

Thu, 31 Jul 2008 00:00:00 -0500

Book Review: Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

Links for 2008-07-28 [del.icio.us]

Tue, 29 Jul 2008 00:00:00 -0500

OK, I've slipped. So here are 10 things I promise myself today. What's your promise?

Dog Day!

Mon, 28 Jul 2008 18:29:11 GMT

It was the greatest sense of excitement I'd ever felt. The hugest sense of hope and the most intense sense of expectation. As I walked down the hallway toward the instructor's office at
Guide Dogs for the Blind;'s
Oregon campus, I had so many thoughts running through my head. Will the dog like me? What will he feel like? Will I be able to see his coloring? Will he and I work well together? I'd already been told that his name was Julio, he was a boy and he was a yellow lab. With every step I took down the hall, the sense of anticipation grew. Finally, I reached the instructor's office. I sat on the couch and waited. I

I heard the click of doggy toe nails against the tile floor, thump of a tail wagging. Then I felt the furry head of a dog in my lap as the instructor clipped the end of my leash to Julio's collar. I immediately noticed that Julio was a happy dog, and that he wanted attention. After I'd patted him on the head, I realized that his nose was wiggling its way under my bottom, even as I was sitting on the couch. The next few minutes were a blurr, with lots of pictures being taken for my parents who couldn't be there and some information on his basic facts. Though I was initially disappointed that he wasn't a girl, I had already started to bond and connect with Julio. By the end of that day, I knew he was the right dog for me.

Four years later, I still love him. My sense of love for this dog only grows stronger. I think about what Julio and I have done together, what we've learned from each other and how much I love him. I look forward to many more years with Julio.

And we're off, thoughts on getting to convention

Sat, 05 Jul 2008 10:19:11 GMT

It's time once again for the anual
ACB
convention. We're here at the hotel, and I must say that thus far, I think this is the best hotel for getting internet at. I'm hoping that will allow me to keep a more frequent account of the goings on here. I make no promises, however.

It's a bittersweet time for me. I'm getting to see friends I've known for years, meet others I've known online and it's wonderful. But Thursday night my great aunt died, and so we may be going to a funeral then coming back. Or not, because I forgot a vital medication at home, and we have to figure out how to get it here. It's hard not to beat myself up and say I've ruined everything. Honestly, the emotional quicksand I've been stuck in for a while just won't give up its grip..

So for those who are at convention, I look forward to seeing you. To those who can't be here, we'll miss you. To everyone, I'll try to write more than I usually do at convention, but I make no promises.

Review

Wed, 25 Jun 2008 18:39:20 GMT

Many of you know how much I love the blog "How To Cope With Pain", because I learn so much, the posts cover many different modalities for relieving and living with pain and the author of the blog is very compassionate toward others. I was absolutely delighted when I was approached and asked if I would like to have my book reviewed on that blog. Now, I am pleased to be able to tell you that
the review is up!

I want to thank How to Cope with Pain for the gracious review, and encourage all of you to go read it. While you're there, go read other posts such as this month's
pain-blog carnival
because there is always something interesting there.

I can honestly say that I am very grateful for the blessings I have received through blogging, and getting to know bloggers like this one is truly a joy. Thank you How To Cope with Pain, for all that you do.

Tribute to a Friend

Fri, 20 Jun 2008 00:10:47 GMT

There are some posts I hope never to write. One of those types of posts has to be written today. It's never easy to say goodbye to a friend whether it be for a brief separation or a longer one. It's never easy. And even though I belong to a faith which believes in heaven, the earthly separation of death is still hard. Consequently, I'm really sad to have to write a goodbye to
Clarence Whaley
who died of cancer last Saturday.

Some would say I didn't know him well, and in some sense, I didn't. I've been a Window-Eyes user for only about a year and a half, and didn't really get a chance to talk with Clarence until CSUN of 2007. We bantered back and forth, laughed and he showed me some cool tech stuff. It was nice to find someone who had a sense of humor, a humble kind spirit and a ton of knowledge. Of course, there are many wonderful people in the technology industry, but that doesn't make it easier to lose one of them.

Anyone who's been around the various tech or blindness conferences for a few years knows how exciting it is to see people you know and like. Clarence was always a friendly person to be around and shoot the breeze with. He made me smile, and I always felt at ease when talking with him. Conventions can get tricky, and there can be a lot of subtle and not-so-subtle judgment going on, but I never got that feeling from Clarence.

One other thing, he was great at presentations. I went to a Window-Eyes presentation he did and noticed that there was something for everyone. A beginner could follow his explanations, but even a somewhat more advanced user who likes to explore on her own could learn a neat trick or a new way of conceptualizing certain tech skills.

Even as I look forward to going to convention this year, I feel sad knowing Clarence won't be there. Clarence, yoou were a wonderful man and we will miss you greatly, but your contributions will live on. Thank you for who you were and what you did.

To My Dad

Mon, 16 Jun 2008 01:09:26 GMT

Hey Dad,

I know I said I wouldn't single you out on my blog, but I hope you'll forgive me for doing it anyway. With all that's been going on, and the fact that half the time when I get out of the house it's with you, I couldn't get you a nice father's day gift on time this year. As much crap as I give you publicly, I wanted to say I love you and thank you for being my father.

Your love, support, humor and general fatherly characteristics are directly related to much of the success I enjoy today. I know that you have had to make choices that most parents never have to contemplate. You've had to go to more doctor's appointments, pharmacy pick-ups, random ThermaCare finding outings and coffee shops to help me try to remain more comfortable. And in a world where being involved in a child's life can be challenging with work schedules and responsibilities, you've always made the sacrifices necessary to be there for me.

Even as I give you a hard time, I am looking forward to having you around for many more years of my life. Here's to more random annonymous comments, random short emails, links and grammatical corrections.

I love you,

Nickie

Hard to believe

Sun, 15 Jun 2008 03:10:19 GMT

Would you believe it's been a year since
I first published Nickie's Nook: Sharing the Journey?
Please forgive the navel gazing while I do some reflecting, I don't know who will be interested in these observations, but I do think that it's a good thing to reflect back on a milestone like this.

Writing a book is one of those things which people tend to say "I'd like to do that some day", but many times, they don't actually do it. I think we're seeing an improvement in the availability of publishing with services like
Lulu
which make publishing possible for those of us who, for whatever reason, weren't comfortable with the traditional model of publishing. I've enjoyed the journey of writing, publishing and marketing
Nickie's Nook: Sharing the Journey
and I think it's a journey everyone should get to take if they want to. The written word is a powerful tool, and it's good to see others pick up the pen and paper, slate and stylus, BrailleNote, laptop, tape recorder or cell phone and write.

I think one of the hardest things about being published is the marketing aspect of trying to get the book into as many hands as possible. There are lots of reasons why I want the book to be read widely. For one thing, I worked hard on the book, because I had a message I wanted to share, well, to be honest, several messages. When you care deeply enough about a cause, a message or a story to go through the extensive writing, editing and publishing process, it shows that the topic is incredibly important. I want to spread awareness, provide encouragement, make people laugh and generally share my perspective. There is also the desire to contribute more to charities and causes which help people who are blind or people who are in pain. Both causes are near and dear to my heart and I want to support them. And, if I'm completely honest, the vein part of me wants to be a successful author.

The challenge with these desires is that I am not good at saying "Look what I did! Come buy it!" Frequently. It's hard for me to market. It's hard for me to be able to acknowledge that I can do good things and that (gasp) I might even have skills. I tend to just let myself fade into the background. So I probably don't even see or take advantage of the opportunities which are right in front of me. This is something I'm working on, it ties in with my anxiety challenges, but I note it here because it has been a large part of my experience. I'm not sure how to solve this problem. Maybe if someone ever figures out how to cure anxiety it won't be a problem, but I think that until then, self-awareness is the first step to solving the problem. Now I just need to figure out how to take the next step.

There have been a lot of positive aspects of being published too. The book has really helped me to help others understand how I see the world, and it's a great tool for advocacy. And even though I'm a writer, I don't know how to describe the wonderful high I get from hearing that someone enjoyed the book.

Finally, I have to admit that I have used the fact that I've written a book to help myself feel more confident in situations. When a task seems to be impossible, when I feel like I'll never amount to anything and when I question my own knowledge in a certain area, I can sometimes lean on the "I wrote a book about this" thought to give me a little bit more confidence.

Moving on to a more professional perspective, this year has also caused me to think about my practice as a social worker and how I might fit writing into that practice. I feel that my writing can be a tool at all levels of the integrative model. On an indevidual level, writing helps me contemplate theories, values, methods and challenging situations which might come up in practice. I use writing to help me be more aware of how my own life experience might be affecting how I view a client's situation, for example. As I 've said before, writing is a powerful tool. Another way in which I use writing on an individual level is in self-care. Finally, I can use writing to create resources for others or other individuals, for example, I could create a guide to chronic pain management, with a specific focus on social work values and goals to help people in pain understand their options. These interventions can have a powerful impact.

On a mezzo, or group level, writing could be used to develop resources for health care professionals to address challenges. Writing can persuade others to make neeeded changes to better serve my clients,. In treatment groups, I could use writing to help my clients express their feelings and perspectives.

Finally, on a macro level, the persuasive power of writing can shine through. Letters to representatives, letters to the editor, essays, blog posts and articles can sometimes help to make needed changes on a large scale.

In other words, writing is going to be vital to my work as a social worker, and there will be many skills and lessons which transfer from the book to the briefcase.

I hope this gives you an idea of what I'm thinking about with the book. It's been a great year, and I sincerely hope it will continue to be a great experience. If you haven't already joined in the journey, please consider it. Also, don't forget that if you review the book on your blog, and your blog is resonably ethical and not just spam, I will link to you in the sidebar. If you know of a link I'm missing, let me know.

LJ Idol Friending Frenzy

Fri, 13 Jun 2008 15:32:48 GMT

Many of you will remember the fun I had in writing for the LJ Idol competition. Even though I didn't stay as long as I would have preferred, I really enjoyed myself, learned about myself and others and made some new friends. I will always treasure the memories from this season. It made some huge impacts on my life. And, if I'm really honest, I know now that being eliminated then was probably for the best as my pain and illness have really made writing almost impossible of late.

Anyway, I'm writing this entry to let everyone know that there's a
friending frenzy
going on. If you took the time to read any LJ Idol writing, now is a great time to make sure you keep those you want to read around by adding them to your friends list so you can read what they write now that season 4 is over. To everyone who was a part of this, I want to say thank you. It was truly an honor to get to know you this season and I learned a lot.

No, my name isn't Dorthy, sorry

Sun, 25 May 2008 23:47:10 GMT

The dream was an odd one. I dreamed that my pain was horrible, responding to light and absolutely raging out of control. I'm told I was screaming. I was on a train and had somehow found some doctor who was trying to treat me, but the pain caused by the movement of the train and the brightness of the sun was horrible. I woke up to my mom, touching my arme, trying to wake me up.

Once I woke up, I heard the thunder. Then, I heard the rain. Then, I heard the hail. The hail was very intense. Dad brought back a piece for me to feel, it was the size of a large ice cube. We turned on the TV and found that we were in a tornado warning. The sky was dark, so we went down into the basement. Dad, ever the daredevil, watched the storm. We had some wind, but no trees down in the driveway. Dad says the hail only got bigger. As we sat in the basement, I could feel my foot inflate. The swelling got bigger, the pain got higher. I felt electrical shocks throughout my foot and leg and sometimes other places in my body, probably because the nervous system was going crazy. The reaction was intense, quite a sight to behold.

I've written about how I try to handle storms before, but this definitely isn't a post where I'll tell you how I used my own formula to stay calm. Between the dyer predictions from the weatherman and the fact that I'd dreamed about being on a train, I was just waiting for a Twister-like scene, complete with losing my dad and my dog (Julio was downstairs with me, feeling scared, but Baxter, ever the helper, was upstairs with Dad).

Obviously, the storm didn't kill us. We don't have damage, just rain. Things are fine here. But the reaction to the storm is something I will never forget. OIt highlights again the need to be prepared in case of disaster. The only thing I did right for my pain was to take my medication before heading for the basement. I didn't use my relaxation skills. I didn't think happy thoughts. I didn't even think to grab a blanket and stay warm. Instead, I screamed from the fear and the pain and uddered a four letter word that starts with F but which isn't fear toward my mother when she suggested that I practice my deep breathing. Survival skills? What're those?

I'd also like to note that I do not benefit from the maps with pink highlighting and all that fancy stuff. The weather people did a decent job of saying the county's affected, but they didn't mention our small city, even though they mentioned all of the cities surrounding that location. Pain issues, blindness issues and politics oh my! I don't think I'm in Kansas anymore.

Five years

Sat, 10 May 2008 04:32:43 GMT

Five years ago today, I opened this LJ account. My friend (who I'm not sure wants to be linked so I won't link them for now), had given me an invite code. For a while, this was the place for me to dump my random entries, my "I ate a muffin today" posts and my "I hate the world and my foot hurts" posts.

I don't think any of us could've predicted that this blog would have lead to me writing a book and provided so much support, thought and help to my spirit.

Here's to many more sets of five years.

Blogging from Facebook

Thu, 01 May 2008 04:14:33 GMT

So even though I have multiple wonderful ways to keep my friends up-to-date with what's going on, I'm always excited to see which new toys are out there for me to use. Now, there's an application for Facebook that lets you blog, right from facebook.

I must say, this is probably one of the more useful ones I have had. Others were just for my profile, but this actually allows me to take my facebook stuff to my blog, when usually I'm stuck with bringing the blog to Facebook.

Anyway, I thought it was neat. Maybe you will too.

Move Along

Wed, 30 Apr 2008 02:21:25 GMT

Nothing to see here. Some how a bunch of mobile posts got into my blog. I'll be deleting them, and figuring out what I need to do so that this doesn't happen again. Sorry for the clutter in RSS feeds and in friends pages.

Where I am

Mon, 28 Apr 2008 02:45:18 GMT

I'm sorry that I haven't been good about blogging or writing lately. Basically, this flare that started back in early March refuses to break. It is all I can do to get out of bed most days, and school is about all I can try to manage. So that's where I am. I am sorry that I haven't been available, but I will try to be here as soon as the flare breaks.

Hold your dog!

Sat, 26 Apr 2008 00:37:15 GMT

I recently took a cab ride, and realized that as an advocate, I've missed an important aspect to the cab debates. I've written here before about work I've been a part of (an interview for a news story and observing others who are advocating for equal access). The discussion has always been about getting the dogs and handlers into the cab and to our destination. But one thing that I hadn't looked at, until recently, was the challenge that people with multiple health concerns may have even after convincing the hesitant driver to take them where they want to go.

We always made sure to emphasize the importance of equal access, that it is our right and that the dogs are well groomed, friendly and that they are vital partners in allowing us to function at the highest level possible. I think at some point, it is considered a victory when we are able to have productive dialogues with leaders, and we can see that more people with service and guide dogs are getting into cabs and ultimately where they need to go. But, there's one more issue I'm experiencing. Even if the driver who has religious beliefs about service dogs which do not match my own allows me and Julio into the cab, we still run into the problem of being asked to do things which, because of my RSD, are vary painful and can even cause a flare up, or at least a worsening of symptoms. Consider this recent experience:

Once the driver arrived, he repeatedly asked if my dog was safe. I reassured him, that Julio is well trained, friendly and would not hurt him. Then, when we got in the cab, the driver asked me to hold Julio in a way which caused him to sit on my foot, and when we got out, Julio could not safely back out of the car and I had to lower him to the ground. I didn't realize that Julio could not back up safely until we got out, and I didn't expect the ride to be long, so I didn't say anything. But the driver wasn't familiar with my college, and the ride took a long time. The driver insisted on keeping the windows rolled down, even though it was below 40DG outside. I've since learned that this might be a practice used when someone is riding in a cab and something about them is considered unclean in the Muslim religion.

Since my nervous system doesn't handle cold well, and my RSD causes me severe pain if anything even touches my skin, the combination of Julio on my foot and the wind and cold from the open windows made for a very painful cab ride. And while I want to respect others' religious beliefs, I have a huge quandry. Usually, if I'm taking a cab, it's because I am in enough pain, or have enough distance to travel that riding the bus would not be an option. I need to know that when I take a cab, I won't be in worse pain than I started with.

The reason I worry about this is not just because of my personal pain levels, but also because as I think about it, I wonder about people with other physical health challenges. Not everyone has the strength to consistently and gently lower a 70 pound labrador (who's scared, squirming and doesn't want to get dropped), down to the ground. I wonder if there is some way we can better educate drivers to understand that while we respect their concerns, we can't always meet them because of our disabilities. I also wonder if leaders of various religions could help everyone understand this concept.

I write this not as a criticism, but as a point for further discussion. I applaud the efforts of many who have advocated so that we have better access to the cabs than we did. I would just love to see it taken further.

The experiences I've had have led me to wonder what other difficulties I, as a person who is blind, may not anticipate, but which are normal challenges for someone with a different disability. I also wonder how we as a community of people with disabilities can better support each other as we advocate for our own needs. And finally, I sincerely hope that the relationships which were built by my friends who have worked so tirelessly to advocate foe access to cabs for people with service dogs will allow us to work out ways to make cab rides more pleasant, safe and helpful for both the drivers and the passengers.

Save a Life... Or Many

Sun, 13 Apr 2008 23:46:58 GMT

Many of you know that I'm a huge fan of BlogHer, a community of women who blog, and who, together, do amazing things which change the world. So it shouldn't surprise you to know that I'm really excited to support their latest efforts in the BlogHers Act initiative. Together, we are
donating to save the lives of women everywhere

There are some really cool causes. Educating women who have HIV/AIDS and helping them to take care of themselves and live longer. Supporting girls who are in school and making sure they get a meal at noon. Helping women deliver babies safely. Providing healthcare to displaced refugees. And providing care to mothers and children.

All of these causes are important. All of them can make a huge difference. And at least one of them could be affordable for you. I contributed. Will you?

We can use the power of our blogs to make a difference. And that's a good reason to blog. I, for one, am excited about this opportunity. The opportunity to use the privilages and rights I have to help someone who, only because she was born in a different country, needs my help.

2008 Social Work Day at the Capitol

Sun, 13 Apr 2008 21:54:19 GMT

What's the first thing that comes to your mind when you think about social workers? A person who does psychotherapy? The person who made plans when your grandma was discharged from the hospital after she broke her hip? Someone who works with you when you can't pay your bills to the hospital, can't afford food or need to go on welfare? Someone who checked on the people who everyone thought were abusing kids? If you think about any of these things when you think about social workers, you are thinking about many of the roles social workers hold. But you aren't thinking about everything we do. In fact, you're only thinking of a few roles of social workers, not the actual values and goals of social workers.

According to the National Association of Social Workers Code of Ethics

The primary mission of the social work profession is to enhance
human well-being and help meet the basic human needs of all people,
with particular attention to the needs and empowerment
of people who are
vulnerable, oppressed, and living in poverty. A historic and
defining feature of social work is the profession's focus on
individual well-being in a social context and the well-being
of society.

Source

Basically, this means that social workers have a goal of helping to make lives better in multiple different ways. We try to mean the basic needs of all people, and to give people the resources to empower themselves. Sometimes, that means that we discharge someone from the hospital with plans of how they will continue to get better (going to a nursing home), meet basic needs (getting meals on wheels set up) and dealing with the stresses of illness (setting them u with relaxation exercises to manage pain and giving them the phone number to a clinic which provides services on a sliding scale structure of payment). It might mean that we teach parents about responsible parenting, or if we absolutely have to, it might mean that we remove children from an unsafe home. So yes, many of these typical expectations of what social workers do are true. But they aren't the whole story.

Last Monday, I got to be a part of another aspect of the social work profession. I got to work on a mezzo and a macro level of social work practice. I got to work on a community and society level of social work. As part of my groupwork class, we've been preparing (in groups), to spend a day at the capitol. On Monday, we did just that. To be fair, the morning was spent at a nearby site, where we learned about issues important to social workers. For me, and many others in my group, the issue of the day was healthcare.

We learned not only how we could improve healthcare, and make it more accessible to all, but also how others are working to make our communities more healthy. We discussed the legislation available. And we shared stories about our own experiences in healthcare. This issue is a very important one for me. And I'm truly hoping that we can, as social workers, improve the access to healthcare. One point which was made is that we're always talking about how we want choice in healthcare. I've said it. I still want it. But those of us who have access to health care forget that others can't even choose to get healthcare. They have no choice. At best, they have a choice between getting their medications or eating.

As a group, we met with a senator for a short amount of time. I felt like it was somewhat productive, but very short.

There's so much I could write. It really was a great experience. But in another entry, I will write about the negative aspect of the day, which I feel still needs to be voiced.

Words...

Wed, 09 Apr 2008 03:13:51 GMT

You definitely should go read this entry from my friend, who also deals with RSDS/CRPS
Words and CRPS
addresses the issue of CRPS and language very beautifully. Please go read!

Stress Management Goal for the Week

Tue, 08 Apr 2008 03:36:46 GMT

As part of the pain management class being done on the
How To Cope with Pain Blog
I've been assigned to do a quick planning exercise on one thing I'll do to help manage my stress. Originally, I had thought that asking for help would be my exercise, but Based on the level of pain I am still in (things are maybe getting better?), I feel that it is important to work on relaxation and making it a priority. So here's what I wrote.

1. The one idea I’ll do is to schedule in relaxation and meditation.
2. one thing I see getting in the way of this is my unpredictable schedule.
3. I’ll deal with this by planning the relaxation time based on when I see myself being able to do the relaxation the night before. For example, on Monday night, I am planning to do relaxation right after lunch, since I know I have time then.
4. specific goal is to schedule at least 15 minutes of relaxation each day, by planning my relaxation time the evening before.

Accessibility Issue

Tue, 01 Apr 2008 22:24:42 GMT

So have you ever noticed that pregnancy tests aren't very accessible? I mean, they make you either tell the difference between blue or pink, or know whether there are one or two lines. I'm not sure that a scanner would tell you about the quantity of lines, or that a color detector could tell the difference. Anyway, I hope that the rumors are true, and that pregnancy truly causes an RSD remission.

At least it's a
Memorable Day

And if you haven't figured out what I'm saying, go read Wikipedia. It's the only time I'll cite Wikipedia.

What does my pain need?

Tue, 01 Apr 2008 04:04:23 GMT

I came across this wonderful blog, called Writing and Healing. There is an article as a guest contributor to another favorite blog
Imagery and Writing for Natural Pain Relief
then a follow-up post on the
Writing and Healing Blog

One of the exercises is to write with a prompt of "What does my pain need." Here's what I came up with. Forgive me as I'm freewriting it, not paying the most attention to style, clean readable pros or organized content. But I think that this is something which should be developed.

First, it's easy to say what my pain needs from the biological/medical arena. It needs relief aimed at blocking or slowing pain or other nerve signals, quelling inflammation, topical relief, and some forms of the typical pain medications. It needs my body to be healthy. It needs heat and physical therapy so I can be stronger. If there is ever a cure for RSD/CrPS, I want to have my body in good shape when it comes.

My pain needs feelings of safety and softness, and a healthy dose of self-respect and self-care. Yes, I do feel angry about my pain, but so is the rest of my body. I am not finding that pain responds well to my anger toward it. I must be soft toward my pain, give it room and warmth. My pain needs compassion toward it, even as I try to do what I can to feel better. Finally, my pain needs me to manage my anxiety to help it feel that I am in a safe place. When that happens, the pain's alarm system can slow down a little sometimes.

My pain needs relaxation. My pain needs me to be able to take some amount of time to care for myself to alter my consciousness some, where I can accept healing suggestions (such as my affirmations), more easily. My pain needs that time on the beach, even if it's imagined. My pain needs to be breathed into, softened around, vacationed from and have real, healing images.

My pain needs soft clothing, warmth, soft blankets, strategically placed pillows. It needs scents, aromatherapy which lifts the mood and calms the spirit or relieves pain, it needs warm baths, gentle hands, sitting in silence when the burden is too much to bare.

It needs empathy toward our struggle. My pain needs an outlet, but it needs some boundaries.

Most of all, my pain needs to back away.

What should I write?

Mon, 31 Mar 2008 04:20:34 GMT

There's a Meme going around, and the idea is that you, the readers, get to suggest topics to challenge me out of my comfort zone. I like the idea, so dig in and we'll see what we can make this blog, together.

A Healing Touch

Sun, 30 Mar 2008 02:36:17 GMT

One of the things I've been thinking about as I'm dealing with this really long period of severe pain is what things are healing, nourishing or helpful to support myself through this really difficult time. I'm finding that the usual physical interventions aren't helping with the pain enough, and emotionally, I just feel overwhelmed, frightened and struggling to deal with this pain. So I started thinking about what I can do. One thing which comes up frequently is images. I find images to be an incredibly comforting way to deal with my pain and some of the anxiety I struggle with. I also use affirmations, which are quick, and many of which provoke images, such as sunshine melting away the pain, a warm blanket of magical comfort, a wave washing away the pain. All of these are helpful for me. I mention all of this to give some background to a powerful experience I had on Thursday night.

I had taken all of my medications which I always take at bedtime, and was listening to my affirmations as I finished my nighttime preparations. I find that this time of day is pretty effective, and since many of the affirmations emphasize self-care and compassion toward myself as I deal with the pain, I like the practical tasks of face washing and other self-care things. It's become a ritual for me, and I really like it. So, anyway, I'd finished the basic self-care stuff, and was still listening to the affirmations as I heated my two heat packs (one for the eyes, one for the leg), in the microwave.

As I did this, I felt the presence of someone in the room. And then, the affirmations got more concrete. They're from the Ease Pain guided imagery/affirmations from
Health Journeys
if anyone's curious. So the affirmations encourage imagining those who care about me, in a circle, and feeling it as a warm wave. Next, I see warm sunshine shining on my pain and melting it away. After that, it's a blue-green wave of pure healing, washing from head to toe and carrying the pain away. Finally, my favorite, a warm blanket of "magical comfort". I'm not giving these exactly in the exact words, but you get the idea.

As I listened to the imagery, the presence gave me a hug as I imagined those who care about me. Then, the presence wrapped that blanket around me. And you know what, I felt it. I felt it so with such intensity, such reality, that I reached out. But no one was there. In fact, I don't even think my room mates were in the apartment. And, I asked them, and they denied mbeing there.

I have never experienced something like this before. But you know what? I knew, with all of my heart, just by the way the presence hugged me, and the way she put the blanket around me, that it was my Grandma Hellen (my grandma on my Mom's side). She has been dead for six years as of the end of this April. She was such a courageous woman, dealing with unbearable pain, loving me, supporting me and being there for me. I think of her often, and miss her dearly.

I still have horrible pain. I still am struggling with hopelessness and fear of the pain not getting any better (it's been a three week flare now that I count it). I am unsure that I should even post this. But I needed that caring presence from my Grandma. I needed that support. And I needed those images to be more real.

I don't know how many people will believe this story, but I felt I needed to share it. And despite that I don't know how anyone will react, I'm posting this publicly, because the experience was so moving, so comforting, that I need to share it. I hope that it can help someone else even a fraction of how it has helped me.

Pain Beyond Words

Fri, 28 Mar 2008 02:36:11 GMT

As I wrote yesterday, I've been in a lot of pain, and it's putting a cramp in my blogging style this week. It started with an increase in pain immediately after my last appointment at the pain clinic (it's not my nurse practitioner's fault, she didn't even touch me, and in fact her med changes are helping with nausea issues). So, I figured I'd just wait and see what would happen, since I noticed that the nausea medication says it can sometimes help with pain. But the pain got worse, probably because of a bunch of storms one after the other. I was able to get som writing done earlier in last week, but I've started feeling beaten down by pain.

So I started thinking about how I struggle to give real voice to my pain. I can talk about it's effects. I can try to put it on a scale nine out of ten. But I can't always describe it in ways that can allow others to know what the pain is.

Even as I think about it, I don't know if I want to describe it. The reality is that I find the pain so horrible that I don't want anyone else to know what it's like. I don't want anyone to feel the consuming grip of pain, the desire to sit on the floor rocking and whimpering just to distract myself from, or give an outlet to my pain.

I feel this need to have people understand how real the pain is to me, and the feeling I have that my pain is horribly real enough, and that I want to protect others from it's vivid reality. And thus, it's hard to know when to speak up, or what to say. Do I write about it here? Do I ask for support on the RSD Support forum I belong to? Do I try to find time to call or visit the doctor? And if I did, how could I give voice to myself, to speak of the pain, and what I am feeling? I almost wrote "give voice to my pain", but then I realized that it's not the pain which needs a voice, but rather Nickie/puppybraille who needs the voice to tell the story of how this pain is affecting me. It is I who needs to have the voice to tell others what they need to know, and empower myself. The pain doesn't need any power. The pain doesn't need a voice.

And yet, I also have a sense that I need to listen to my pain. I need to learn what I can from it, learn what I can do to increase comfort. Learn how to care for myself, to increase the comfort, "give voice" to the comfort, and allow the comfort to be the dominating voice/story/narrative of my life.

In all of the struggles I face in trying to use language, narrative and voice; in all of the ways that I've seen pain disrupt my language and my life, I want to balance giving voice to myself who deals with pain, and giving voice to the experiences which bring comfort. I must balance using language to heal, and using language to advocate. I hope that someday, I will feel less of a divide between the two voices.

Related posts:

I Hurt, Therefore I Blog

What's The Story

Read Two Blog Posts and Call me In the Morning

Images, Stories and Pain

Speaking of Pain

CRPS: The Condition of Hell

Pain, pain and more pain

Thu, 27 Mar 2008 04:16:30 GMT

I'm in pretty severe pain right now, have been for at least the last week and a half (More than the usual severe pain). So I'm sorry, I can't post anything deep. However, if you want to go read some excellent writing, stop by the
March Pain-Blog Carnival
read the excellent posts, and consider submitting something yourself!

Happy Easter

Mon, 24 Mar 2008 03:15:07 GMT

To those who celebrate it, I hope your Easter was a good one. I hope that Easter brought you hope, joy, good times with family and friends and whatever you needed from it. For those who don't celebrate Easter, I hope your day was a good one.