Thanks for stopping by Nickie's Nook, my place to write what I'm thinking, feeling, experiencing or anything else I want to write. It's also a place I want others to enjoy. If there is something here that you want to respond to, pleas do. A nook is no fun with no one to share it with. One way to talk back is to comment. Another is to visit and sign
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Please remember that this is a personal blog, and what works for me may not work for you. So make decisions wisely based on that information.

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


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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.

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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

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!

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.

It's been about a year since I went to the two day workshop and learned how to use Clicker Training with Julio.
Clicker Training
is a method of using positive reinforcement to teach. It uses a direct reinforcer, like food, as a reward, but first uses a secondary reinforcer (a clicking noise), to mark exactly what the learner did to get the treat.
At first, I didn't buy that clicker training would be helpful for Julio and I. To be honest, I was only going because one of my best friends was coming to participate in the workshop, and this would allow me to spend more time with her. But surprisingly, the training method made sense once I got to the workshop, and Julio responded really well. The more I learned, the more I saw how clicker training could actually make a difference in our relationship. It could also smooth over some challenges we have because of my RSD (Julio wasn't originally trained to walk with me and a support cane).

A year later, I am still so glad I know how to use clicker training. I've noticed differences in three different areas of my life: How I teach Julio, how Julio handles stressful or new situations and how I understand behavior in myself and other humans.

First, I feel that I teach Julio better. When I have a new route or a new concept I need to introduce him to, those small exercises of teaching targeting and teaching tricks like "give me five" and "give me a paw" give me a better idea of how he learns. Because I am looking for ways to reinforce him, I now know what works best to make him happy. And, because I am focusing on the good stuff he does, he has motivation to do more good things.

This leads into how Julio handles stressful situations. I've noticed that the fact that he knows I am looking for things he does well. And because he knows that, he is less worried about making mistakes. That doesn't mean that I just let him make mistakes in guidework, I don't let him run me into things, for example. But if I'm teaching him a new skill (like finding a chair), there comes a point where I just let him show me things, but don't react. Soon, he's eager to try, and the stress is less. And, because I know how to reinforce him, I can help him when a situation is stressful.

Finally, there is the understanding of behavior which is so important for me as a person and me as a social worker. I understand more about reinforcing positive behaviors, the psychologically harmful effects of pain and tons of other concepts which I did not know before. And because I understand these things, I sometimes don't take some things as personally as I might have in the past.

In essence, one year later, clicker training is still helping me in so many ways. I'm so glad I went to the workshop, and that I have this tool in my toolbox as I continue on our rney.

Those of you who have known me since the beginning of my journey with RSD may know that I haven't always been receptive to the idea that psychological factors could be a part of my pain. The idea of a mindbody connection, stress contributing to pain or depression and anxiety being a part of my experience with RSD was completely unacceptable. I showed no interest in help in the form of counseling, biofeedback or any other therapy that might deal with the mind. If you've followed what I've written or been a part of the discussions I've had about these topics, you might have picked up that I've become more interested in this type of help. I'd like to explain why seeking help was so difficult, and why I am glad I did.

Let's start with why I didn't want to talk about the mindbody connection, stress or psychology and how it might be affecting my RSD. The reasons are both personal and societal, and it's hard to tell where one begins and the other ends. First, as with many of the people I've been getting to know online who have this disorder, I've heard the comment "It's all in your head". Doctors, acquaintances and even people I thought understood what I was going through have used that expression as an insult. The implication, then, is it isn't real. The pain has no real cause and you're just making it up. Words cannot convey how horrible the feeling is, when the pain has pushed you to a breaking point, you've cried, vomited and lost sleep because of the pain, and people say that you WANT that experience. If I didn't need help before, I sure do now. The truth is, I don't want the pain, but if I have to have the pain, I'd prefer that people believe me that the pain is real, I don't want it, and that I didn't intentionally cause it.

Societally, we have two issues. One is that pain is very poorly understood, and we've only recently begun to find ways to help treat chronic pain (pain that lasts longer than 3-6 months). RSD, of course, is even more poorly understood, and diagnosing it is very difficult. That plays into this because it allows myths to grow. It means that people don't understand that there is always a psychological component to pain. Ask a person who's just burnt her/his hand on the stove what their mood is, and I recommend that you step back because the response will not be very pleasant. Ask a clicker trainer, and they will tell you how harmful pain can be because of its psychological effects when used in the training process. Chronic pain does have psychological effects, but people often don't realize that the pain is the cause of the depression or anxiety.

The other issue in society is the stigma around psychological conditions. Depression, anxiety and other psychiatric conditions are automatically thought to be "not real" and we assume that they're easy to get over. We assume that someone with a psychological condition wants what they're dealing with. We put moral burdens on people with depression, anxiety, bipolar and other conditions which we would never put on a person with high blood pressure, high cholesterol or diabetes (although those can have their own stigmas unfortunately). We as a society need to start removing the stigma of psychology and the mind. We need to stop using psychological as a synonym for "not real".

Okay, back to my story: I've been dealing with RSD for about five years, although there was a brief remission. I dealt with the usual difficulties of trying to get someone to figure out what was wrong with me. Well meaning and not-so-well-meaning people suggested that my problems might be related to some psychological condition. I often felt like I was fighting to have my pain believed. I also noticed a scornful tone of voice when people (even medical professionals) said "Maybe it's all in your head."

Even after diagnosis, I saw how psychology was often the catch-all suggestion when there weren't explanations for a symptom, or when things weren't going well. I sat in classes, where people talked about how they didn't believe some conditions were real and that they were made up or "all in the patients' heads".

It took me a long time to accept that there really is a connection between the mind and the body. I slowly learned about how stress affects the sympathetic nervous system (which can play a huge role in RSD). I saw how relaxation could make it easier to deal with the pain, make my medications work better, help with my nausea and help me get to sleep. I took a class on relaxation and researched how relaxation could be used for pain management. I talked with a nurse when the first surgery caused that huge flare which spread my RSD, and she taught me how to use a healing light imagery after she learned I could see lights and colors. I talked with my doctor, and he helped me understand that my pain was real, but that psychological stress could be making the pain worse in many ways. I started reading blogs about chronic pain and learned that seeking help to deal with the stress of life with chronic pain wouldn't mean that my pain isn't real, it would mean that I was taking a step to help myself live better. Finally, I started having trouble with my heart, and had to leave class at one point because between it and the pain, I wasn't able to focus. And, with the help of others, I finally got it.

After setting the goal to seek help, I did so in January. I can honestly say that I'm glad I did. I've gotten support through some very stressful times where I needed the confidential support of my counselor. I've received help with formulating plans for doctor's appointments. We're addressing my anxiety. I'm learning to address thought patterns which aren't helpful, and getting help with my goals. Overall, my only regret is that I didn't ask for help sooner.

If I can be so bold, I'd like to provide some suggestions for hoow we can, together, address the hesitance to seek help with the psychological aspects of pain. It will take effort for everyone to address the barriers to getting the care we need, but I believe it is possible.

People with pain: Don't be afraid to ask for psychological support. If you decide to get help from your doctor (if you attend a multi-disciplinary pain center, for example), you could say something like this. "You know, I've been noticing that I feel (however you feel), and that sometimes when I feel that way, my pain is worse. Is there anything we can do about that?" Or, you could ask outright for a referral to a psychologist or clinical social worker. If you're nervous about that (as I was due to my anxiety), you don't have to see someone associated with your doctor. It works better for me to see a wonderful psychologist on campus because of transportation issues. She happens to be very empathetic and helpful, and that has been a very positive experience so far. It might be a good idea to authorize that they communicate with your doctor, especially if you end up working with a psychiatrist for medication treatment. And, whatever you do, make sure to be educated on what you're taking.

Friends and family: If you know someone who's dealing with psychological effects of pain (depression, anxiety, stress etc), bring it up gently. Instead of saying that you just know that the stress, depression or other problems are causing the pain, be compassionate. Explain that you know that what they're dealing with can't be easy. Believe their pain. Suggest that they get help to cope with it. But if they aren't ready to accept that yet, just be there for them. Help with practical things which might be difficult now with the pain. And be as supportive to them in dealing with the psychological effects of the pain as you can.

Doctors: The most important thing you can do is listen, and try to understand where we're coming from. Some of the most helpful things which have been done for me have been by doctors. But some of the most harmful, hurtful words spoken to me have come from doctors. I know you can't be perfect all of the time, but please believe us. When you can learn our stories and understand our challenges, then you can offer support. Beyond listening, I would suggest that when you do advise psychological help, you be clear that you believe they are in pain, that you know that the pain is really difficult to deal with and you'd like to see them get some support through all of this. When you can, explain the connections between depression, anxiety, stress and pain. When the patient knows you believe them, and want the best for them, they will find it easier to seek the help you're suggesting. Finally, make sure that they know that you are still going to support them, prescribe treatments for them and pursue pain relief options. I know I had a secret fear that if I got help with my anxiety, no one would believe my pain.

For psychologists, social workers and counselors: If your schooling was anything like what my school is like, you know how to listen, or at least know the tools to listen. You know how to help people with psychological challenges. My advice is mainly to remember that the patient in front of you might be very scared of any number of things which I've described above. When you can, learn about whatever condition or symptoms the patient has. Sometimes there are psychological treatments which can be helpful (guided imagery, relaxation, breathing, biofeedback) which can be helpful. And, when you can, educate your patient on how the mind can affect the body and vice versa.

I have been very fortunate. I've had people in my life who have patiently guided me to a place where I'm getting help to deal with the psychological effects of my pain. I can write what I've written knowing that the barriers I've described didn't have the last word. But I don't want someone else to deprive themselves of the support I've received. And I hope this helps you better understand the connections and ways in which we can be a part of the solution.

As part of the goals I set for this year, I've said I want my pain to be better managed, and I want to be more functional. I've even described some of the efforts I've made to get my pain under better control. In some ways, that's the focus of this blog, but in others, I haven't focused as heavily on how I'm doing with the pain. I think it might be helpful for me to describe what I'm doing, why I'm doing it and what I'm noticing. I'm doing this publicly, since I feel that open honesty is important. However, there may be things I choose to be vague about, for example, exact names of medications, to protect some of my privacy. That said, I hope this helps others to know that I am working to do something about the pain, and what I'm doing so that if you're looking for options, you'll know what has worked and what hasn't.

Medications: We've adjusted several of my medications to try to manage my pain better. I have a long-acting patch which releases a steady stream of medication into my blood. That level is better than I ever got on pills. I also take breakthrough medications, and because I have a baseline pain reliever (plus other mmeds I've been on forever), the breakthrough medication does actually help with the severe pain. We've also adjusted medications so I'm sleeping somewhat better at night. Sleep is so vital when you're in pain. And yet, it's the hardest time to get sleep when you're in pain. Finally, I've started using a very small amount of a medication to help with anxiety. That's important since anxiety heightens pain, and does a number on my nervous system. Also, we're addressing the nausea, which means I am starting to want to eat again. That makes healthy food easier to eat.

Physical therapy: As I've written before, I did start physical therapy. We've been working on the leg in question, but doing it less directly. My physical therapist is very smart about not making the pain worse. She knows that making the pain flare will only make recovery harder. She's shown me techniques for desensitization,, so that hopefully my foot and leg will start to perceive touch and temperature as sensations, not as pain. She's noticed the way I move, and is working with me to make the way I move healthier. Finally, she's given me new orthodics which I am tolerating okay. As I tell people, physical therapy doesn't always make the pain better, but I function better with the pain.

Psychological support: As part of my new year's resolutions, I said I would seek counseling. I have, and I have been working with a psychologist at the campus counseling center. We talk about thought patterns which make me more anxious. We talk about any difficulties I'm having. I can't believe I've waited this long to seek help.

Supplements: In addition to trying to eat healthier, I've added supplements as recommended by the psychiatrist who suggested the medication for anxiety. Magnesium Malate, Vitamin D3 and Omega3 (really refined fish oil). These help with mood, but also with chronic pain. So far, I've noticed an improvement in the muscle pain I get which reminds me of when I was hit by that car last year. My mood does seem better, but it's hard to tell what has helped that, could be the depression/anxiety med, could be the supplements.

Relaxation: Since I'm on spring break, I'm trying to use relaxation more. We will see how that goes.

Music: I'm using music as a distraction when I can. I also use some favorite music as a reward for a job well done in physical therapy.

Environmental adaptations: I've now been living in an ADA accessible room with some wonderful women who "get it". The bars next to the toilet and other adaptations really make a difference. Not falling does wonders for the psyche.

As you can see, I really use a lot of different techniques. But these are only a few of them. Coping is important, and I'm looking forward to sharing more techniques again soon.

While going through my RSS feeds a few weeks ago, I came across a link to an excerpt of a book called
Strong at The Broken Places: Voices of Illness A Chorus of Hope
the excerpt seemed good, and I liked the premise behind the book. It's written by Richard M. Cohen, who has M.S., and wrote the book "Blind Sided, Lifting a Life Above Illness". The book shares the stories of five people with chronic illnesses. It shares both the positive and the negative aspects of illness.

Luckily for me, the book is available in audio format, either on CD or on Audible.com. It's a good recording, and it's unabridged, which is what I prefer.

Overall, I liked the book's format. It has a good sense of continuity and shares how the participants connect. Each person he interviewed has their own chapter and their narratives are developed in depth. There are also reflections at the end of each chapter, pulling out one or two key themes which the author feels are important.

I also like that the book talks about hope, but isn't overly pollyanna. It tells things like they are, shows how we get through the days, but doesn't try to evoke pity. That commitment to telling the truth about life is what makes the book have an unsettling feel sometimes, but I prefer that to a book which pretends that everything is okay.

In short, I highly recommend this book. The narratives are meaningful, the author is honest and the narrative is engaging.