The Science of Negative Writing

Found this site today and it has some interesting ideas on pain management, especially the idea of “Negative Writing.” The premise is you spend 10-20 mins twice a day writing out all the negative junk in your head. You immediately then destroy the paper. Supposedly, there is some scientific evidence that this activity helps to create new neural pathways and can be therapeutic.

Here’s the link:

A Book Project

After watching Dr. Clauw’s lecture (see in post below), I decided to look up some books on pain management and came across this one:

Managing Pain Before It Manages You by Margaret A Caudill


Here are a few excerpts I highlighted so far in the first chapter …

The fact that you may be sad, angry, or anxious about the disruption of your whole life as a result of the pain experience is both understandable and normal. 

Accepting ownership of your pain [ …] means acknowledging that you are a worthwhile person, that there is a point in doing something, and that you do have choices.

The fact is that a lot more can be done about the emotional response to chronic pain than about the physical experience.

Changing your awareness changes the pain experience.

I’m not ready to give up. I’m not ready to let my pain control my whole life. I am going to fight. If I can’t fight physically, than I will fight mentally and use every tool I can find. I ordered several other pain management CBT type books, but this is the one I am starting with.

On the pain front:

Very little sitting today. Just brief periods of lying on my bed. I’m uncomfortable, but it’s bearable when I stand. I have lost nearly 15 lbs since this pain started at the beginning of March. This week, I have no appetite. Not sure why. I need to lose weight anyways, so I am not super concerned about it. It could be the prednisone. I am on a round of it for 16 days. So far, no relief that I can tell of for the burning sensation. I start Methotrexate tomorrow night. I am afraid, but the only way around fear is to go straight through it. I also made a gynecology appointment for next week to rule out any lady problems.

Think I will go hug my daughter and husband now.



Chronic Pain – Daniel J. Clauw

I wanted to share this video because I think it makes some really interesting points. Also, I related to some of it. I believe the brain does play a role (sometimes significantly) in chronic pain. This doesn’t mean there are not underlying physical problems – many times there are – but the brain’s pain amplification system can certainly make pain much worse! Anyway, if you have chronic pain problems, this video is worth checking out.


Autoimmune Disease Community/Message Board?

Does anyone know of an online community/message board for those with autoimmune diseases? I have Googled and clicked and all I seem to find is a general health board with an arthritis sub-forum (that is usually not very active).

Is anyone out there interested in joining such a community? I am in the beginning stages of this disease and I do not have as much experience as others, but I do know how to set up a message board, and I would be willing to do so if others were interested.

Any thoughts?


Treadmill Desk

treadmill desk

One of the lifestyle adjustments I’ve had to make since the onset of my pain is setting up a completely different workstation. Admittedly, I have spent a LOT of time sitting – like years. The back pain that started several years ago limited my activity so much that I sort of gave up trying exercise because it always resulted in pain. As a photographer, my work also requires many hours of sitting and developing photographs on computer software. This adds up to many, many hours of sitting. I absolutely believe all this sitting has contributed to more pain. I doubt it’s the cause, per say, but it makes things even worse.

So, I took the plunge and bought a stand up desk with a treadmill. I bought the two parts separately. The desk itself was fairly easy for my husband to assemble – and he is not very handy – but parts of it are heavy, so be careful about lifting! The treadmill arrived fully assembled. Besides being packed to death, it was super simple to set up.

It has been ten days using my new workstation. I must say …. I absolutely love it! I am on it right now! Walking and typing away. I go very slow – 1mph. But it adds up, and usually I do 4-5 hours per day on it. That’s 4-5 extra miles. I have lost 3 lbs and haven’t changed my eating habits at ALL.

I am not sure at this point how much it has helped pain. It helps while I am on it and using it. I feel the least amount of pain while using the treadmill, but the pain is the same when I am not on it.

I will give updates as time goes on and I have more experience with using it. Here is where I purchased the desk and treadmill.

The Desk

The Treadmill

Hello hello



Why is it so hard to write the first sentence? I suppose because I feel like there is this endless backstory. But today, I am not going to go into all of that too much. Today, I just want to explain the basic premise of “Chronic Joy.” It will be about my journey and experience with chronic pain, but also have a healthy dose of joy, hope, and gratitude, because although chronic pain can be very difficult, life is still beautiful in so many ways. I want to count the blessings while confessing the curses. I want to be grateful for the things in my life that are good and positive, and I never want to lose hope. So much of reality is about perspective.

My journey with pain dates back five years. I pulled something in my back while working out and ended up with pain. That pain is no longer much of an issue most of the time – it took years, but finally I have learned to “live around it.” Last year, around this same time, I had a knee swell up. A shot of cortisone took care of it, but not entirely. Again, I learned to live around it. I was also diagnosed with rheumatoid arthritis. I didn’t seem to have many symptoms, so I put off taking medication. That has all changed now. Two months ago, I took a very long car ride (12 hours) and ever since that time I have been in pain. I cannot sit for longer than 10 minutes. I have had xrays, CT, and last week an injection in my piriformis muscle. I’m still waiting, but the injection does not seem to have done much, and possibly, even increased the pain. Currently, I am having what feels like an internal burning sensation under the tailbone. It can get pretty intense. Sometimes, I get so frustrated and sad about this pain. I have cried more out of frustration in the past several weeks than I ever have in my life.

One thing that helps is to just get my mind off it. To focus on the positive things in my life, which are abundant.

Gratitude List

I am grateful for …

A loving and supportive spouse. He has really been there for me through this, helping in any way he can, going with me to appointments, reassuring me, making me laugh.

A daughter who is living life. I have a healthy, 17 year old daughter, who is enjoying her life. Her and my husband are my heart … well, my dog too!

My sweet pooch. My loyal, silly companion.

My parents, my husband’s parents. I was feeling down this morning and went to the mailbox. My husband’s mother had sent me a little note card with a funny newspaper clipping. It made me cry because I realized someone out there cares about me. I have a lot of people who love and care. I am extremely grateful for that.

Medical opportunities – I have health insurance. My husband has a good job. I am in a position to seek out medical help. Not everyone can do that. I am so fortunate for that.

Nature & Technology – Nature gets me out of my head, especially when I’m using the camera. I took the shot of the honeysuckle earlier, and my husband planted two mini rose bushes while I gave him instructions (lol). And I’m grateful for technology because it gives me a medium to express everything I just have.

Happy Mother’s Day.