Nickie's Nook

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Thoughts from convention

Tue, 07 Jul 2009 00:26:07 GMT

As some of you know, I went to the 48th annual convention of the
American Council of the Blind
which is being held in Orlando Florida. I'm having some down time today and thought it would be good if I spent some time blogging. I have a goal of writing more than I have been, since i think journaling is helpful for me.

Overall, I am enjoying convention. I've been to several good programs, the general sessions and a NABS program on stress. The information and knowledge I have gained is great, but I've discovered that more and more of my experience of convention is seeing friends and just enjoying myself. I've enjoyed sharing meals with friends I haven't seen in a while and I hope to enjoy the company of more friends for the rest of the week. I am also enjoying the updates on ACB's advocacy efforts, the
National Library Service for the Blind and Physically Handicapped's
efforts in digitalizing their collection and improving the quality of the books (I especially enjoyed this after hearing my own book in recorded format).

I also enjoyed the mini-concert put on by
AMY CAROL WEBB
Her style is very much folk and it was definitely a treat. Also, my friend
Debbie Hazelton
led prayer last night. I also enjoyed knowing that Rebecca Kragnes won an award for an article she submited to the Braille Forum (I didn't succeed in finding the direct link to it right now).

As you can see, there's been a lot of exciting stuff. In the world of advocacy, I'm glad to know that the accessibility of the Kindle, curency and healthcare are all high priorities in our legislative and legal arenas.

Now for the hard stuff. I have to say that handling convention with my RSD gets harder every year. Especially this year, because of the surgery I had on my right foot and the pain being in both feet, I have had a hard time managing pain enough to be comfortable. Quite frankly,, I find the experience exhausting. I want to hang out with friends and I want to visit exhibits and go to the general sessions, but it's a lot to balance. On Friday, I will be consulting with another RSD expert. I'm hoping that some other treatment options will be available, and that hearing another persspective on my situation will be helpful. I don't wish to say more than that at this point, but I would definitely appreciate prayers that this will lead to an improvement in my health.

I'm excited to see what the rest of the week brings.

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Thu, 02 Jul 2009 00:00:00 PDT

Nickie's Nook - Can you help me with my project?

Can you help me with my project?

Wed, 01 Jul 2009 14:17:01 GMT

So here's the deal. I'm working with my biofeedback therapist on a personalized recording of the techniques which work for me. We want to encorporate a few affirmations. So I've been busy collecting affirmations, as many as I can find and like.I have 24 hours more, so now comes the fun. I've already categorized the affirmations to my best ability and in a way which makes sense for me.

I should probably explain what Affirmations are and how they are used. Basically, affirmations are positive messages we make a habit of including in our day. The idea is that, when presented with a positive thought enough times, the brain and body can make it a reality. I struggle with negative thoughts a lot, so affirmations are a way to try to counteract that. Affirmations can be
a href="http://www.healthjourneys.com">recordings included with guided imageryor even just an index card taped near your mirror. The important thing is to see, hear or say the affirmations and repeat them frequently.

Now, I need to narrow down these affirmations to have just a small handful to bring to my session tomorrow. So, in the interest of sharing the work I've done compiling these, since these may help someone else, and in the interest of hearing your opinions, here's the categorized list. Feel free to use these if you'd find them helpful.

What I'd like is some feedback. Which affirmations of these do you think would be good for me to have in the project,? What am I missing? Do you personally have a favorite? Let me know in the comments and I'll definitely take your suggestions and thoughts into consideration.

Categorized List of Affirmations

Acceptance:

(Three Affirmations)
More and more, I can accept my feelings, soften around them and breathe through them.
I know there are times when I feel frustrated, fearful, angry or sad, and I acknowledge and accept what I feel as my inner truth of the moment.
I know that the more I can accept my body as it is, without criticism or blame the more I assist its natural tendency to feel well and be well.

Healing:

(10 Affirmations)
I declare my intention to heal myself in body, mind and spirit.
I welcome the return of my strength, vitality and sense of self.
My health, energy, and vitality are increasing everyday.
My positive thoughts are now creating the body that I desire.
My body is healing and regenerating itself everyday.
I am now relaxed and filled with peace of mind. In my relaxed state, my body repairs and heals itself quickly.
I deserve to be healthy and strong."
I nourish myself and my needs
I thank my body for all it has done for me in the past and all it will do for me in the future.
I know that I am better and better able to listen to my body and sense what it needs.

Motivation:

(Three Affirmations)
I know that the time to be motivated by fear and anxiety is over, now is the time to do things out of love, celebration and the joy of self-expression.
More and more, I see that when I soften and let go of harsh expectations, of unrealistic demands on myself or others I give my body peace and comfort.
I am now spending my time, energy, and emotion on the goals that are
most important to me rather than responding to the demands of other people.
I know that I have things to do, gifts to give, purposes to accomplish; I require my energy, comfort and peace of mind for this.

Peace of mind, peace and calm:

(Sixteen Affirmations)

I can see and feel a peaceful balanced calm move through my body and mind.
I welcome my ability to cushion myself from jarring events and respond from a place of peaceful, balanced calm.
I know that when I can forgive myself and others from errors of the past, I give my body peace and comfort.
I salute the healing action of my own breath.
I feel myself transforming fear in the fierce cauldron of my own open heart.
I sleep peacefully and I awake joyfully.
I am calm and relaxed in every situation.
You are safe and secure and all is well."
You are calm and confident."
"Let harmony and peace fill your life."
I trust the flow and process of life
I let love and joy circulate through me
When I remember to feel my breath moving in and out of my body, I return to my own inner peace and calm.
More and more, I can allow myself to let go of things I cannot control and focus on my own inner peacefulness.
More and more I’m learning to focus my attention on what does me and my life the most good.
I know that when I can forgive myself and others for errors of the past, I give my body peace and comfort.
More and more I can feel the peaceful stillness at my center, soft, strong and steady.

Self-care and pain management:

(Twenty-three Affirmations
I have many skills to help me cope and persevere.
I live in respectful relationship with pain, but I know I am not the pain.
Release anything negative from your body, mind and spirit."
I find time to relax, practice biofeedback and give my body and mind a break every day.
When I feel tired or my pain increases, I stop what I am doing, relax and cultivate comfort.
I breathe fully and freely
My mind creates a feeling of warm, heavy comforting relaxation.
I am learning to trust my body and to make good use of the information it offers me.
More and more, I’m learning to save my energy for what truly matters to me.
More and more, I’m learning to pace myself.
I’m remembering to enjoy the pleasant feeling of my body as it moves, breathes, stretches, rests and settles in for sleep.
More and more, I can appreciate my body, be consciouss of it and fully inhabit it.
More and more, I can consider the possibility that my body is teaching me something useful, that this pain is strengthening my heart and my mind.
More and more, I see that I can train myself to manage this pain in my body.
More and more, I see that I can focus my attention wherever I wish it to go.
I understand that when I soften into my pain, allowing room for it and breathing gently into it, I can make it smaller.
I know that with or without this pain, I am strong, vital and whole.
I can see and feel a radient sunlight, entering and warming my body, penetrating the places that hurt; loosening, dissolving and dispursing the pain.
I can see and feel a powerful blue-green wave of pure healing washing through me from head to toe, carrying pain and discomfort out with the tide.
I can see and feel a warm pulsing blanket of magical comfort surrounding me enveloping me with peace and safety. Soaking its healing energy into me and easing the places that hurt.
I thank the medications and procedures designed to help my body’s natural tendency to heal and comfort itself and I join my strength and purpose to theirs.

Sleep:

(Four Affirmations)
I lovingly release the day
Tomorrow will take care of itself
When I am ready, I slip into peaceful sleep
When I sleep, my mind is at peace and the healing powers within my body
are magnified.

Support:

(Three Affirmations)
I invite assistance from friends and loved ones. I see myself surrounded by their love and caring and I feel it all over my body like a warm wave.
I am surrounded by love.
I know that I am nourished and sustained by all of the love that has ever come into my life.

Thoughts, beliefs and feelings:

(Ten Affirmations)
I am consciously aware of my beliefs. I only hold onto beliefs that support me.
I know that when I can acknowledge my feelings without criticism or blame, I assist my body’s natural tendency to feel well and be welll.
I apply my faith with consistent acts of courage.
Everything is getting better every day.
I choose to love and approve of myself
I go beyond my fears and limitations
My thoughts are worth sharing through voice and writing.
More and more, I am learning to be gentle and considerate toward myself.
More and more, I’m able to savor the gifts of the present.
More and more I can take pleasure in the simple joys of living.
More and more, I appreciate my body for what it truly is, my oldest friend and my steadiest companion.
More and more, I can see the beauty of others and the beauty of my surroundings.

Ending Affirmation:
I know that I am held in the hands ofGod and I am purely, utterly, safe.

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Still alive even if I refuse to kick.

Fri, 12 Jun 2009 13:20:55 GMT

I just wanted to let everyone know that the surgery went well. Ispent the night in the hospital (yay for wireless net access). We're having some pain control issues, but hopefully that will get dealt with soon. They've been really great about accommodating my needs here. The surgery in and of itself went well, and they used some precautions I'd researched to help keep me comfortable. I didn't feel a thing, spinal anesthesia can be a wonderful thing, especially when paired with sedation and pain control. But around four or so, the blocks wore off and I started to have pain. We got behind it, so last night was pretty uncomfortable. But once I had my normal meds and some pain medication through the IV, I was able to sleep better.

I just wanted you all to know that things went okay. Now we're just waiting for an x-ray and a visit from someone at the pain clinic to come to figure out how to manage the post op pain I'm having. More later.

Another letter to my body

Thu, 11 Jun 2009 13:24:06 GMT

I know this may seem odd, but I'm trying to find ways to help with my panic attacks over today's upcoming surgery. I thought a letter to my body might be in order. I remember doing something similar a year ago in response to a
BlogHer
post and I remember it helped me then. So I'm doing it again.

Dear Body,

You and I have been through a lot lately. I know that RSD, anxiety, thyroid problems, depression, nausea and tons of other stuff has made your life very difficulty. I'm not sure what it is you want or need to help you heal, but the one thing I do know is that you want to keep this toe and you don't want to see RSD's distruction in that foot. I have every confidence that you will work with me, the medical staff and God to provide the best healing. I believe that you just need this surgery to give you the nudge you need to repair this fracture. I know you'll do the best you can to help me have a safe surgery, avoid complications, decrease any discomfort and heal.

It is my hope that we will form a healing partnership today and forever after. I'll do what I can to help you heal. I I'll also do what I can to help you stay comfortable.

My promises to you:
I will ask tough questions when they need to be asked to make the best decisions I can to protect you.
I will use the skills I have from guided imagery, biofeedback and EFT to deal with any problems which may come up.
I will be kind to you and do my best to view you as a partner, not my tormenter.
I will watch for symptoms of RSD and make sure they are dealt with.
I will pray.

I look forward to healing with you!

Nickie

Hey body, cut it out!

Wed, 10 Jun 2009 02:42:34 GMT

Deciding to have surgery is rarely easy. I guess if it's to get a ruptured apendix out or you'll die if you don't do the surgery, it's an easier decision But there are a lot of factors to consider. I thought I was done having surgeries. Surgery is a huge risk for someone with RSDS/CRPS because, as a physical trauma, it can cause RSD in someone who does not have it yet and can worsen or spread the condition if the patient has CRPS.. Since the surgeries I have had in the past have caused huge problems for my RSD, I swore I wouldn't have another surgery. But, then, I broke my toe. That was four months ago. I was so excited that for once I had something which could heal in six weeks. But the pain never really got better. A few weeks ago, I had an x-ray to see how the toe had healed. Basically, it hadn't healed at all. What's worse, it is considered walled-off. I either need to have surgery now, or wait for things to get wworse and amputate that toe. What's really bad about this is that I am starting to notice some burning pain, sensitivity to touch, swelling and others are noticing discoloration. This is on what I used to call my good foot.

So anyway, I will have the surgery on Thursday June 11th. I'm really scared, life seems so unfair. I don't want RSD on my right foot too. I would definitely appreciate all prayers and support. This is really hard for me. I'm trying so hard to handle this calmly, I've been doing lots of surgery guided imagery which helps some, but my fear is more pain.

Places I've been

Fri, 29 May 2009 20:52:37 GMT

Okay, so I haven't been writing much lately. School, pain and anxiety have all complicated the picture. I want to let you know, however, that a few exciting things have happened to my writing.

The May
Pain Blog Carnival,/a>
is up and mentions the RSD resource I've been putting together. I can attest that there's a lot of great reading in the carnival, so stop by.

Next, I'm really excited to let you knnow that if you download audio books from the National Library Service site, you can download an audio version of my book. You can either search for the title "Nickie's Nook: Sharing the Journey" or right now you can see it on the recently added downloads page.

This might be hard for someone who's sighted to understand, but this actually feels just as exciting and a lot more real to me as when I first published the book in 2007. Hearing it read by one of my favorite narrators is just so cool!

A New RSD Resource I Created

Thu, 02 Apr 2009 05:29:01 GMT

Okay, so I can't sleep due to the pain tonight (I'll get to sleep eventually), and I channeled that energy into a project which I've been working on for a while now. I've always wanted to create an effective resource for people with RSDS/CRPS, I know that people have said they benefit from my blog or my book, but I also know that it's hard to find resources. I'm not necessarily talking about links, but even something as simple as music which calms the nervous system or uplifts the spirit, books about RSD and chronic pain and tools to manage the pain better. I don't have a perfect masterpiece yet, and I plan to be updating and adding a lot, but I'd like to present
Tons of Tools for Relentless Pain

Please spread the word and if you have CRPS and are willing, please share your story. If you want more, please leave feedback and I'll do my best to add the resources you seek.

Balancing the multiple illnesses

Tue, 31 Mar 2009 03:14:58 GMT

A recent New York Times article discussed the challenges of treating someone with
multiple health problems

Since I'm going through yet another work-up which isn't about my pain but is somehow related in my uneducated opinion, this article struck a chord with me. No twenty-something female wants to be compared to statics about senior citizens. While I definitely respect my elders, I wish I could just be like my peers and not in so much pain, so anxious, fatigued and nauseated. And the more time goes by, the more conditions I end up with.

The thing is, it's not like any of my health problems exist in a vacuum. The anxiety and depression are caused by the pain, but they also amplify it. The thyroid problems make me tired, which makes it harder to deal with the pain. The pain has always influenced my nausea, but the pain makes every test that we do as part of working up the nausea harder. The vibration of the MRI was painful, the endoscopy tomorrow scares me because of the fear of RSD spread from something as simple as an IV insertion, I don't even know if the RSD could spread from trauma related to biopsies if they find abnormal tissues. I'm even concerned about the fact that I'll have to lay on my left side, which is the side that my RSD is on.

Sometimes, even most of the time, being stuck with so many medical probllems seems so unfair. And, to be honest, when I see articles like this one discussing the topic of multiple medical problems, I feel overlooked. I know I'm not the only one who's young and sick. On the other hand, I do feel hopeful that the more people like who are young and dealing with chronic illness who share their stories, the better things will get. We all learn from each others' experiences and we other people learn from us too. The power of the blog can't be denied. It even helps me tonight as I write about my fear and frustration.

Tai Chi Chuan Part Two: Miss-conceptions

Sun, 29 Mar 2009 00:27:04 GMT

I knew absolutely nothing about Tai Chi the day I walked into the gym where my Tai Chi Chuan course is being taught. All I thought I knew was that it had something to do with stress relief and they'd used it to help with health benefits. I thought most of it had to do with arms, and that it was like a Chinese version of ballet. I laugh as I think about it because I really didn't know what I was talking about.

Due to many reasons which I won't get into here I didn't start class the first day it started. It's offered once a week and I came to the second class. I arrived a few minutes early and met the student who is helping me and the two instructors. I knew the class would be challenging when, after shaking my hand, my instructor told me how I'd need to stand. It fit exactly with what my physical therapists have been working on for a year and she picked up on the tightness in my lower back quickly. The more I heard, the more scared I became.

Tai Chi is actually a lower body art. It has a lot to do with how weight is shifted, footwork and balance and coordination. Obviously, I figured out pretty quickly that I was in for a challenge. Part of me wanted to walk out without even trying my first class, but my need for a credit and my desire to learn Tai Chi, even if only because I had no other choices, kept me in class. By the end of that first class, I was tired, sore and very glad I'd stayed.

Practicing Tai Chi is like practicing another language or maybe a new style of writing, but instead of learning how to move your lips or string words together to form a sentence or blog entry, you move your whole body, string postures together to make a form and instead of studying to memorize grammar, we study principles which guide our practice of each exercise we practice. Just like our previous experiences with language influence our ability to learn a new language or even become a better writer using a style we've not used before, my physical challenges and strengths greatly impacted my ability to do Tai Chi Chuan.

As I mentioned, the first thing I have to learn to do differently is standing. I need to use my core muscles to keep my body upright. This is actually challenging because what I tend to do to stand and take the weight off of my sore foot is use my back and shoulders to carry my weight. In Tai Chi, a straight back is important and that means relaxing my lower back which tends to tense up, creating what looks like a hole in my lower back and tilting my pelvis backward. I also struggle with standing because of the weight-bearing. Putting weight on my RSDS/CRPS affected leg hurts and Tai Chi is very much about the weight-bearing.

It takes discipline to keep working on Tai Chi just due to the pain alone, but my anxiety also poses huge challenges to my Tai Chi practice. In reality, I have a lot to be anxious about: the pain of standing, anxiety about the pain from moving, the fear that I'm not good enough at Tai Chi concerns about what the other students think about me receiving extra help, worrying about whether I understand the movements correctly and a hundred other thoughts rush through my mind. Tai Chi is specifically good for anxiety because it is supposed to quiet the mind. What I ddidn't understand is that Tai Chi in itself can't take away my anxiety. Rather, my practicing and focusing on my Tai Chi is what helps with my anxiety because I actively relax my body and mind. It's the same as how biofeedback itself doesn't relieve pain, but rather the pain responds to the control of my mind and the physiological responses. Tai Chi is an internal art and that miss-conception I had, that Tai Chi is some magical thing that will take my anxiety away had to be challenged.
Those miss-conceptions have slowly gone away, and I'm glad they have. Next time, I'll share the joy and peace I've felt throughout the class and how those miss-conceptions have been challenged.

Tai Chi and Me: Part 1

Sun, 15 Mar 2009 18:28:30 GMT

One area where I know my life habitts are lacking is exercise. If you don't want to put weight on a foot because it's screaming in pain, it's hard to, say, get on a treadmill. Needless to say, I was anxious about my college's exercise science requirements. I'd taken a relaxation course, but needed another credit of physical education type courses. The problem is finding something, anything, that isn't visual (no volleyball) and isn't bad for my pain (swimming in a very cold pool, for example). That mixture is a dangerous combination for finding a course I could take.

So this semester, I need to take a step back and re--evaluate some things in my life. So for now, I am taking Tai Chi now, then switching to a different, more manageable schedule. I've read enough pain management literature to know that Tai Chi can be beneficial for pain and enough about general stress management to know that Tai Chi can help with stress and anxiety. But without seeing pictures of postures, brocades and other aspects of Tai Chi, I didn't know much about it. Fortunately, my instructors are wonderful and we've worked out some accommodations so I can participate to the fullest extent possible. I asked for and received permission from my instructor to blog this journey, to highlight my experiences as a student of the Yang style of Tai Chi Chuan.

Blindness Accommodations

The first thing everyone else thought when they heard I am taking Tai Chi is how I know when, where and how to move. Negotiating accommodations has been trick for my, not because I have had to deal with resistance, my instructors are both wonderful. Rather, it's been challenging to know what will work best for me as a person who is blind with an art which I don't understand! How could I survive best in the Tai Chi group teaching environment, with twenty-thirty students and a very echoy gymnazium.

So what have we found which works? The first, and most helpful thing which contributes to any success I achieve is through help from and longer discussions with my instructor and we work out what I can and cannot do or just what I need to do differently. The blindness accommodations haven't been a problem. My instructor is wonderful at describing exercises and the student who's taken Tai Chi before andd whom the instructor and our Disability Services office worked with so I'd always have an assistant... She's great too. She describes well and isn't afraid to touch me if needed to help me understand the exercise's more challenging points. I use email to communicate with my instructor and she comments on my homework that way. She also makes sure I have questions answered and has provided me with as much accessible information related to the class as possible.

The RSD Accommodations

The RSD and pain related challenges have been much more difficult for me personally. I have never known which accommodations would help with the RSD in any area of my life. Asking for what I need when it relates to pain is somehow more challenging for me, maybe because I've had RSD for a shorter time than I've had blindness. The main accommodation I use for my RSD is stopping when I can't do any more. Meaning that I have to pace myself, because if I don't, I can and do suffer the consequences. I take my walker and my cane so that I have something to help me balance and I communicate with the student who helps me and the instructor to let them know how I'm doing. Now that the accommodations are out of the way, we'll be able to move on to the next part of the journey in another post.

A Friend Between the Pages: Life Disrupted

Wed, 11 Mar 2009 04:43:39 GMT

It's so easy to feel alone when dealing with chronic illness. On a daily basis, between all of my chronic issues, I have to make tons of decisions which most people aren't aware of. And when I'm sitting in my room, trying not to move because I'll throw up if I do, or the pain won't let me, it's pretty easy to feel like no one understands. Even with good friends, when things are at their worst, it's hard to remember that I'm not alone

And when I've had to say no to social arrangements, it's hard not to mope that I couldn't go. Sometimes I've wished that Julio could talk, reassure me, or have words of wisdom for those lonely times. At three AM when the pain wakes me up, or at bedtime when I have a panic attack just thinking of going to sleep and everyone's off line, I'm not calling anyone. While I'm slowly learning to ask for help when I need it, it's a lot easier to pick up a book when it's the middle of the night or I know I'm so crabby I should definitely not talk to anyone.

The thing is, until recently, many books dealing with chronic pain or illness (not all of them, just many of them) were

Written by someone who wants to sell more than a book.

Promoting some cure or another that may be great for some people but hasn't worked with RSDS/CRPS

Written by a doctor, which can be good, but it doesn't always help with those lifetime issues which deal with the non-medical stuff.

Written by someone who doesn't have a chronic illness and doesn't quite hit the issues I find myself struggling with

Written by someone with chronic illness but not during their younger adult years

That is not to say I've never read a great chronic illness book, even some in some of these categories have been great and have helped me along the way. But I've always wished for someone to write about chronic illness as a younger person. Thankfully, I'm not wishing anymore!

I have lots of favorite bloggers, friends and hopefully soon to be friends whose writing reminds me that I'm not alone, suggests angles I haven't thought of and challenges me to approach my life in new ways. One of them recently published the book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties and I loved every word.

The author, Laurie Edwards, describes some of the many issues those of us who are ill and young face. She tackles issues like:

How to deal with getting a diagnosis

Making hospital stays easier

How to deal with illness at school

Listening to your body

To Disclose or not to disclose, and if so, how much.

Chronic illness on the job

Chronic illness in relationships

I simply cannot do this book justice in just writing about the book, but I'll try. The things I liked most were Laurie's conversational style, her words based on her experience and the experiences of others whose words show up throughout the book, it's not too heavy or too light in tone, it's real with no edges smoothed over just to present everything in a positive life, the hopeful feeling I get from reading it, the short chapters which mean you can read the book in short spirts if concentration or physical ability get in your way and that I feel like I've just had lunch with friends who get it, even if I barely can get out of bed. I can't think of anything I don't like about this book.

If you have chronic illness or pain and need some help dealing with these issues or if you know someone who has a chronic illness (you're looking at one now, well at least the writing of someone), and you want to understand the decisions and questions we deal with, go get this book.

I give it six stars out of five!

You can check out more of Laurie Edwards' writing and buy the book, as well as viewing other reviews, by going to her blog
A Chronic Dose

Thu, 26 Feb 2009 20:42:59 GMT

The
February edition of the Pain-Blog Carnival
is up and there are several great articles. I've only just glanced at some of the articles, but there are a few, including one explaining mirror therapy, and one discussing hope, which readers of this blog may find fascinating.

It takes a lot of effort to gather links and publish blog carnivals, and I always enjoy this carnival, so if you haven't checked it out yet, please do. You'll definitely be glad you did!

Kicking the fear

Wed, 11 Feb 2009 02:33:35 GMT

It hasn't been a great week for me, lots of things I don't feel like writing about yet, but I think I'm getting through it. I've had somewhat of an odd experience which I'm not sure hoow to interpret. I also just want to write about it...

Sunday night, I was getting ready for bed. Coming out of the bathroom at my parents' house, I hit the doorframe with my right foot. I felt a pop and pain and it felt like my baby toe wasn't connected to my foot anymore. It didn't rank more than a four on the pain scale, but was hard to deal with because that was my good foot. I have also been through enough of a diagnosis hell with the RSD that I didn't feel like going to the doctor just to be told that there's nothing on the x-ray and come back if it doesn't get better. But the swelling kept going up and the pain wasn't improving like I expect from a bruise so we went to Urgent Care last night.

For once, there is objectivevidence that my toe hurts. There's a break which can clearly be seen on x-ray. I overheard the doctor and medical assistants and maybe a nurse talking about my x-ray and the first word was "Wow!" Of course all we can do is tape the toe to my other toe to splint it, but it's kind of nice to know that there's an injury that people will believe me about and there are ways to help it. It's sad when my need for validation is so strong, but it hurts so much to think that people don't believe you or blame you for how you feel.

Now my goal is preventing the spread of the RSD. Mainly this involves taking Vitamin C and using desensitive methods as well as relaxation, biofeedback and guided imagery. That fear of a spread of the RSD is always there, but I have to keep the anxiety controlled to keep my risk of spread low.

Prompt me: A Pair of Shoes

Mon, 09 Feb 2009 03:41:47 GMT

Today I needed a distraction from a coughing induced panic attack, so my friend Kati and I decided to work on writing from prompts for something to distract me with. The prompt I wrote from is at the bottom of this piece. Feel free to comment or write from the same prompt or even use my writing as a prompt. If you do, please link to your post in a comment to me. I'd also be interested in a writing prompt if you have one. I specifically want to know what you want me to write about, not what you don't.

It’s not easy being me. My friends all get to stay in a job which never pushes their borders or limits. They never have to grow, stretch or make an effort to support more than they bargained for. My friend albRIGHT, for example, is fine. Sometimes he has to get used to a new member, but he doesn’t experience the pain of growing. He doesn’t eve have to be all things at once. I never know if I’ll be filling my original role, or one much larger. Some mornings, I get a member to support that’s nice and small, then, the next morning, my member is huge, with lots of specific needs. I stretch my budget here, crimp there and no matter what, I come out with too few materials. I feel like the non-profit of the shoe world, being Nickie’s left shoe.

The Prompt: A Pair of Shoes.

The Long Long Road To Hope

Sun, 01 Feb 2009 00:07:14 GMT

Maybe it's because of the recent Inauguration and the movements for change, but optimism and hope seem to be on a lot of people's minds.
Chronic Bab is Embracing Optimism
and at How To Cope with Pain, readers are thinking about
how to maintain hope
and to be honest, I'm not sure how to do it.

Lately, I just feel beaten down, like the RSD is winning, no matter what I try. And now that I'm feeling the burning pain in my right foot, I wonder if there is any hope of ever feeling better again. All I can find on the subject of spreading RSD is that it's bad news. I have yet to find out how it is diagnosed or treated. I can't tell you how awful it feels to not be able to count on either of my legs. On one hand, my right leg did so well for so long that I feel like I shouldn't complain. But on the other hand, the pain in that side is hard because right now I have no "good foot" to help pick up the slack.

How does one find hope when it has escaped completely? I try to pray about this, and yet no words come out. I try to hope that things will get better, but I've run through almost all but the most invasive treatments and the only other potential, somewhat experimental treatment I've been given the chance to do would be very difficult to do during school. I keep wondering if I should change my mind on the implantable stimulator, or if I should hold my ground. I don't want to make a dumb decision out of desparation, but I also feel like I need relief to be able to actually live my life. Right now, I just feel like I'm surviving it and using up oxygen.

All I can do is try to find ways to daily feel like I am contributing to wellness. In other words, keep working on biofeedback, do my pool therapy, try to use other complementary techniques and tools to help take some of the stress off of my body and mind, make the attempt to pray and find ways to keep myself engaged. It doesn't necessarily feel like hope, and sometimes the prospect of a long life ahead of me with this disease makes me want to hide somewhere, but it's all I can do. This isn't exactly one of my better posts, and part of me wants to exit without saving, but I feel like my readers should at least get to know that when I'm not myself, the fear of spread and the lack of hope are the reason.

Hike On

Fri, 30 Jan 2009 03:53:27 GMT

While at the
ACBM
convention this past weekend, I learned about a man who is going to do something really cool. Note, I didn't say inspirational, I don't think it's impossible, it will, however be educational and it will help others undersstand the abilities of people with disabilities and hopefully that understanding will open up new opportunities and take down the barriers irrected in the hearts and minds of able-bodied employers and future friendss to someone with a disability. I also hope it will open eyes in the healthcare arena, too, as people see that blindness is not the barrier people think it is.

Let me introduce you to
Mike Hanson
He's planning to hike the entire Appalachian Trail, a walk of 2,174 miles. His only assistance will be a small cell phone with GPS and, oh yes, his white cane. It is my understanding that he will be the first blind man to do so relying on a cane and GPS, since Bill Irwin walked it with his guide dog and taped descriptions of the trail to guide him.

Why does Mike want to do this? First, he loves the outdoors. He is also an advocate for employment for people with "disabilities" and wants to show the sighted and blind communities that this is not only possible with help, but it's also possible on one's own. And, of course, this will be a huge adventure.

I was impressed by Mr. Hanson's practical, matter of fact attitude. He seemed down-to-earth and yet it is obvious that he knows he can do this. So do I.

But Mr. Hanson isn't just going to hike the trail, he's also having his trip documented, and that's where he needs some help. He's found a friend and videographer, but creating a video and turning it into a documentary can't be done with out money. He's looking for funds and connections to help publicize the trip and connections to people who can provide expertise in the areas of fundraising or communications and marketing. He's using this trip to publicly show just what we blind people can do and do do everyday and to correct ironious beliefs about disability, specifically blindness, by the media. Think about the stuff Saturday Night Live did with Governor Paterson.

So if you're interested in helping, please do. I know I can't wait to hear more about the trip when it happens.
Visit
BlindHiker.com

And Mr. Hanson, if you're reading this, Happy Trails!

Je Vous Presentez Moi

Tue, 20 Jan 2009 04:56:35 GMT

In my own defence, I haven't had much French practice since my first year of college. But It seems appropriate to try something new and fun, if only for a while.

My user picture which I'm using for this entry is of me, my new hair cut and a cuddle with my Guide Dog, Julio. If you've ever wondered what I look like now, this is as good as it gets.

A Journey toward Accessibility Begins with a Few Honest Stories

Sun, 18 Jan 2009 23:28:24 GMT

Not quite a year ago, I posted this plea to
Share your stories about medication identification
and I'm extremely happy to tell all of you that this week, I got an email from
The American Foundation of the Blind
the email included a link to the
Access to Drug Labels Survey Report
around 100 people spoke in this survey and the report contains a lot of information about problems caused by miss-understandings of medication labels and the solutions blind people are using every day to try to adapt their medication labels.

This kind of report is important because now that we have these types of stories available and publicized without breaking confidentiality or annonymity, we have resources to use in advocating for ourselves. I think this report should be read by every doctor, nurse, social worker, pharmacist, physical therapist or other person who works with people who are blind or people who have illnesses which might impact their vision.

I also need to admit that I hadn't really thought about people who might have illnesses which could impact their vision. The report gives the example of someone with
Multiple Sclerosis
without wanting to reveal where I do my internship, I will say that I will likely have clients with MS, once I have gotten through some orientation materials and gotten more comfortable with my role. I'm embarrassed to say this, but I never connected the dots that MS can cause vision problems, as does diabetes and probably other illnesses which have impacts on the nervous system. I've lost most of my light and color perception since my RSDS/CRPS got worse, so when you think about it, all of these chronic illnesses can cause vision problemos. Basically, I'm not alone. I'm not alone dealing with pain and blindness, there are probably people who have chronic pain or illness who could benefit from the knowledge those who are blind have as we can learn from them about the struggles they have, the adaptationss they've made and the shared impact of chronic illnesses and disabilities.

Other than sending in my story when AFB made the request for submissions, I am not officially connected with what AFB is doing. I don't call the shots (no punn intended). But I've renewed my desire to think about how chronic illness and blindness impact each other. And of course, to educate and advocate for more accessible ways of managing our medications and conditions. And in case someone from AFB reads this post, please keep up the excellent work and I'd be glad to help further if I can!

Helplessness, questions and professionalism

Thu, 15 Jan 2009 22:45:43 GMT

Today, I sit in a hospital, neither as the patient, noor the staff member or intern. Today, my grandma is having surgery, and I'm learning more about myself.

It's hard not to be involved. My training has helped me to understand the dynamics of many different situations. When I'm working, I feel in some control of a stressful situation. I find it much easier when I know what's going on. When my knowledge can be used to help someone else or myself, it doesn't make all of the struggles worth it necessarily, but at least the struggles can enable me to do good.

Those who know me know I prefer to be an advocate. I prefer to support someone, interpret the situation, understand what's going on and then find ways to ease the situation. I am definitely not a doctor or a nurse, but both my training and my experiences have allowed me to have relatively good medical literacy. Helping others gives meaning to my life and advocating for myself gives me a sense of dignity, self-worth and self-determination.

I want to be with my grandma the whole time. I want to know what is done and I want to know that she will know that I am there and that I will watch to make sure she is alright and getting what she needs. And yet, I'm not a doctor, I cannot perform surgery, prescribe medications or do anything like that. And with my RSD, I can't really do a lot of physical stuff. I hate this feeling of helplessness and the knowledge that I can contrrol so little.

I know that I need to balance who I am as a student/professional-to-be and the reality that I'm not able to do everything. I also have to ask myself if my desire to help, to be with her throughout is in her best interests and whether I could, in trying to advocate for her, take away her self-determination. It's a fine line to negotiate. Do other professionals experience this struggle? How do I deal with the feeling that I'm not able to do as much as I want to?

I have many questions and very few answers.

Edit: The surgery went well, at time of posting, haven't seen her, she's in recovery now.

Blogging A Belated Birthday Bash for Braille

Thu, 08 Jan 2009 03:13:03 GMT

Sunday marked an important milestone for the entire blindness community. Louis Braille was born two hundred years ago yesterday (January 4). Braille is how people who are blind read, though surprisingly few people actually use the code, those who do, however, couldn't live without it.

I learned Braille starting around the age of four years old. It took a while for me to fully understand how important Braille is for my daily life. Without Braille, I am positive that my writing in school, my blogging and my daily functioning would be much more difficult. Much of my knowledge of how to form sentences and write well comes from my voracious appetite for books. And as much as I value audio books, they are my main method of reading because I can read them faster, I wouldn't know anything about spelling or even punctuation. While I know my posts are far from perfect, I can usually read them later and know what I wanted to say, even if it has been months since I wrote the post. Also, I cannot imagine learning html without seeing at least some of it in Braille. C++ was a hard course, but it could have been so much worse if I hadn't used a Braille textbook. My slate and stylus, which I hated learning how to use and resisted its use, has helped me in so many ways, taking notes in class when my BrailleNote, lap top or other equipment run out of juice in their batteries. All I have to do is ask the student next to me for notes and thank them for their help as I whip the Slate and Stylus out of my purse. I've been places (this was more of an issue before the Mobile Speak on a Smartphone and small recorders like the Victor Reader Stream) ,I'd been out to eat, at a funeral or other social gathering or more professional setting where getting the number from a person I want or need to speak with later. I can write on almost any paper, I haven't tried napkins (at least, I don't remember doing it), but this shows the abilities of the slate and stylus and the power of Braille.

Another low-tech way I use Braille is reading a physical book. I don't do this as much as I did, because I can rarely make the time to read at a slower pace (I consider myself a medium to fast Braille reader but I still can't read as fast as I can read an audiobook or text file put onto the Stream)> That doesn't mean that I never appreciate the joy of Braille reading. In fact, I love reading a long Braille book just to prove that I can, and I love the feeling of words coming in through my fingers as I slide my fingers across the page. I get a similar feeling to a lesser degree as I listen to information, but there's something impersonal about it, or maybe it's too personal, I can't decide. When I read with text to speech, I get a robot voice, and even though these voices have improved greatly, they kind of drown out the voice in your head.

With audio books, the narrator can be great, or she or he could be a narrator who drives me nuts. I have no decision in who the narrator will be.

In talking about other methods of communication which seem to pop up whhen we least expect it.

Live Journal

Facebook
and finally one of my other favorites beyond the blogs of others, is Delicious

These tools are all great and they definitely enhance school and my personal life. If we're ever going to convince students to learn Braille, we will have to do it in a way which fits in with the digital lifestyle that students grow up in.

It saddens me that so few people use Braille, some are not given the opportunity to learn it, some don't want to learn it and some can't use it for medical reasons or because of cognative challenges. I want to see a day when Braille is used more and where students are liberated through its use. Recently, I've been thinking about how to encourage the use of Braille without compromising the right to choose. I do know that Braille readers have a better rate of employment than those who do not read Braille. That being said, my own experience has led me to realize that as there are many ways to use print, there are many ways to use Braille.

Like many Braille readers who learned Braille as a child, I learned to read Braille and to write in Braille using several different methods. I wrote in Braille using a Perkins Brailler (think typewriter but instead of using print keys, we had the traditional 9 key keyboard which is all one needs to write in Braille). Then, I learned to use an electronic Braille note taker, first one that used Braille input and used speech for the output. Then, I had two note takers which use Braille for input and output (they use tiny pins which raise and lower to simulate dots on a page). Finally, I use a slate and stylus, which allows me to Braille anytime anywhere. I've used it to take notes when my technology failed me during class (dead batteries don't work well). My problem now is that somehow I lost the ability to think and write in Braille while listening to lectures. This seems to have happened as my pain got worse and I wonder if RSD might be disrupting something in my brain. I can read fine.

I mention this because I feel guilt about this every day. I'm a huge Braille literacy advocate and I wish I could write in Braille. There tends to be an attitude of "my way or the highway" about Braille in the blindness community and I know that's part of the guilt. I wonder how many people don't use Braille because they feel intimidated and don't feel free to use it in a way which is best for them. This guilt isn't something I've seen in the sighted community. I think this is still an issue in class rooms where children who are lefthanded or who have difficulty writing with a pen or pencil. But in the adult world, this becomes irrelavent.

To me, Braille should be a tool which empowers people, not one more status symbol or reason to shun members of the blindness community. When we use Braille to improve our lives and when we use it in a way which makes sense to us, we honor Mr. Braille and his work. I plan to continue reading Braille and using it fully this month and in the months to come! If you use it, consider what you can do to help to use Braille in an empowering way. If you don't, this is your chance to learn about Braille. A search in your favorite search engine should yield some fascinating reading.

Goals, failure and getting up to try again

Sun, 04 Jan 2009 21:03:29 GMT

I have a string of confesions I need to make, all relating to pain and resolutions, plans and uncertainty. I struggle so much with what it means to be ill wwith Complex Regional Pain Syndrome. What will happen to me? Will I be stuck feeling this awful for the next 60 years? Will it keep spreading, or will it stop once it hits the top of my leg (it seems to be slowly inching up my thigh). How much longer will my right leg tolerate the extra weight it carries because the left one hurts too much to do its job fully? How will I ever get through school and find a job when I feel like this? What's the purpose for my life, for all of this suffering? What did I do that got me hit with this and why can't I be someone who heals and goes into remission instead of ever worsening pain and RSDS/CRPS symptoms? It seems so unfair.

Lately, I've been struggling more than usual because I see the burden I am to others and it's hard to accept that, because it isn't what I want for myself. I want to grow and gain abilities, not lose them. Right now, I'm feeling particularily bad because I looked at my resolutions for last year, the ones I worked so hard to put together and then tried to start well. Instead of making my pain better, it got worse. I slowly lost focus of most things that weren't needed for survival, or just getting through flare after flare after flare. I tried to eat better, but lost sight of that in all of the nausea from the pain. I wanted to get my pain down, instead it went up. I did go get physical, psychological and biofeedback therapies, I even got in for pool therapy. All of these things do help some, but the pain is still the main thread of my life. I try to focus away from it, use relaxation tools, distract myself, take frequent breaks (I admit I don't do that as well as I should, I tend to work until I drop becaause that's a short amount of time). I tried hard.

I slowed my writing, partially because it's so scary to see these things in "black and white", to openly admit that things aren't going well. And again, there's that feeling of being a burden, why would someone want to read about the latest symptoms or how afraid I feel when they can visit
Cute Overload
or some other good web site.
And yet I needc to write. I need to get the feelings out because when I don't, I notice my mood dropping like a cell phone you didn't know was in your pocket until you swam out toward the ocean. But in not writing, I feel like i let myself down. I can write, my blog is one thing that so far, I have a good amount of control of. I can choose what to write, I can even write publicly, privately or semi-privately. I'm still feeling too defeated to actually make resolutions, but I do hope that maybe something will turn around (in a good way), but if it doesn't, I still plan to write. It's the one thing I control.

See my goals and decide if I failed or not for yourself

Tue, 30 Dec 2008 08:50:44 GMT

Listening to classical music to calm down, really want my Stream and its card reunited though it bugs me more and more. @L at dining room table

Tue, 30 Dec 2008 08:40:49 GMT

I hate it when I wake up at two in the morning and somehow lose my SD card and it bugs me so much I make myself panic.

Why can't I just have a good night's sleep?

I'd do a victory dance if I didn't have this walker...

Fri, 19 Dec 2008 03:38:48 GMT

I finally had a victory, one which is hard one and comes in a sea of pain and despair of ever feeling better. I raised my left foot one degree in biofeedback. It's a first and I'm proud of myself. When something like this happens, I celebrate it as much as possible. I know how hard I worked for it and I know that it isn't always even possible for people with RSDS/CRPS. So I decided to share the celebration with everyone.

What does this mean? It means that if I keep practicing, I may be able to get the blood to flow better in my bad leg. This may or may not help with pain, but it does show that I am slowly learning to get control of my sympathetic nervous system. That's a key part of RSDS/CRPS because it's the fight or flight part of your nervous system. Anyway, I just wanted to share the excitement!

8 Reasons to give my book as a present this Christmas

Tue, 09 Dec 2008 04:57:23 GMT

I'm frequently asked many questions about my book when I describe it to friends or strangers who don't know about it. The underlying question is pretty much always "What makes this book special and why should i even buy it". So, here are the top 8 reasons to
Give Nickie's Nook: Sharing the Journey

A portion of the proceeds from the books sold will go toward charities or organizations working to make a difference to those who are blind or have chronic illnesses.

Unless your recipient reads this blog, or knows me they probably don't have a copy, so you won't have to mess with gift receipts.

The web site I use does allow you to send a short note with the book, so you can send a gift note.

It's accessible in PDF form which can be converted to text with most versions of Adobe and I can and do provide most accessible electronic formats.

The mix of stories, essays and entries in the book means that there's sure to be something that interests your reader.

Because the book has many shorter selections which do not need to be read in a specific order, it's the perfect gift for someone on the go. There are several selections which can be read in waiting rooms, on bus rides or as a quick read during a break from school or work.

The cover features the cutest yellow lab named Julio ever.

You'll make me very happy.

Buy the book at
Nickie's Journey.info