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The chilly fall night winds were a cold knife slicing through my burning leg as I slowly pulled myself out of the car... The critical voice in my head refused to be silenced, almost as though it were fed by the pain. That critical voice couldn't possibly let me just enjoy an outing with my Mom, it had to insert its opinion into everything I did. The list grew, and I am not talking about the shopping list.

  • make sure both shoes are on before I try to walk off without them since I hate the feeling of shoes or anything on my foot. Okay, good.

  • Swivvle my hips so that I'm facing out of the car.

  • Feel the pull of the seat belt which I neglected to unfasten and which is currently pulling on my hips and chest.

  • Catch myself saying "You're stupid, you never do anything right".

  • Realize this is an exhageration and try to talk back at the thought.

  • "See, now you're going to get even more anxious because you are using unhelpful language. Again, I say, you're bad and stupid.">

  • Try again, swivvle hips further. Success!

  • Slowly, make that very slowly, I gingerly put my left foot down. To my amazement (this is one which many people find to be a very easy task, without fear of pain or spasms. Then there are the rest of us. For me, it feels like I could be a Zen master for all of the pain of walking on a bed of flames, while also feeling like my foot would freeze if not kept warm or indoors. Neither options are fool proof for me.

  • Thank Mom for the walker which she retreived from the back of our car.

  • Notice that she's outfitted it with the basket and that it doesn't roll away as I attempt to figure out a few essentials.

  • Grip the walker's handle bars for support

  • Congratulate myself on getting out of the car and silence the critic who hasn't been helpful anyway. I know the critic will be back, but for now, I want to shop with my Mom.

We entered the drugstore and my nose immediately recognized the smell of a drugstore/pharmacy, candy, vitamins, lotions, adhesives of all kinds, medications and orthopedic equipment such as wheelchairs, walkers and canes which can give off a smell of metal, rubber or any number of unidentifiable scents. Then, we strolled through the aisles of the drugstore, looking for diabetic socks with lots of padding and room for swelling, I began to see the many ironies involved in my life as a person who is blind, has Complex Regional Pain Syndrome, experiences Generalized Anxiety due to the pain and is just learning how to best understand and do my part in caring for my latest diagnosis to add to the list; hypothyroidism.

I'd discovered that some diabetic socks are big enough to accommodate the swelling, provide extra padding and even help keep my feet warm. The difficult part is that when my swelling is bad, these wonderful socks only add to the difficulty in getting my foot into a shoe. The evening with my mom was the culmination of a busy day. I hadn't felt well all day because of the flare of pain I'm in and the fears of what could happen, the fears that I could have another five month flare. They only added to the anxiety I felt. I was also discouraged because I'd finally realized that I might not be able to get rid of the anxiety because the pain is what's causing it. I knew I was stuck in a perpetual loop of pain and anxiety and I wanted out. Given that this was four days ago, I still do.

Mom and I did succeed in finding the diabetic socks and, in addition, we spotted some swet pants which are soft enough for my super-sensitive leg. It was then that I started "the list".
"Hey Mom, what about this: Top ten signs your medical conditions are trying to take over your life: #1: you buy many of your clothes from a drug store or medical supply store." She laughed, and I decided this would be a good idea. I also decided to turn this into a writing exercise, writing more about my outing and providing a bit more description. It's a challenge for me and a challenge for anyone who wants to play.. Feel free to use any tasteless humor you want, but keep in mind that I try to keep my blog relatively clean. You must recognize the challenge this provides for a dirty-minded college student.

So have at it, post your favorite "You know your illnesses are trying to take over your life" signs either in the comments or on your own blog. If you do play along on your own blog, please post a link in the comments (or email me and I'll add it to the list here if LJ tries to eat your link). It's kind of like Jeff Foxworthy's "You Might Be a RedNeck", but without the nice catchy phraise. Which reminds me, if you can think of a better sentence/better language to the prompt, please feel free to post it. I need the sick humor. (Note sick humor refers to illness humor, not nasty humor. Some of my readers might not notice the difference.)

I'm posting this in honor of RSD Awareness Month. I hope that this honest look at how RSD affects me in one tiny area of my life helps you to better understand its affects on the lives of those who have it. Please visit the links on my sidebar or blog roll, or even my bookmarked links on delicious. Try searching using tags like "chronicpain" "RSDS" CRPS" "pain" etc. Make yourself aware and make others aware. This disorder must be stopped.


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Nov. 17th, 2008 01:25 pm (UTC)
illness taking over
This is an incredible piece! Have you considered doing a sequel to your book about your experience with RSD?

I required a day in bed to recover not from the Louisville trip I just took but from the drastic temperature change and the effects of the massive steroid dose (which didn't seem to do a darn thing for me yesterday anyway). That critical voice didn't allow me to get much rest. It went on about how I was unreliable with my Sunday school class, what would I do when I have a job, etc. It went on even after people told me that it was good to take care of myself and even after I reminded myself that my body probably is not making appropriate amounts of stress hormones to cope with emotional things related to the Louisville trip on top of the pain management. (I wonder how much of that steroid went to emotion management instead of pain management!) I would be a lot better if it would just stay one temperature or the other; and this is not just wishful thinking!
May. 19th, 2010 06:39 pm (UTC)
Re: illness taking over
Did you get a doctor permit to buy steroids? I know they are good for pain management, I can't be sure about the emotion management, I hope they won't get any emotional effect on me. Just how helpful are steroids in your case? I am also considering massage therapy for pain relief. I'd appreciate any info, thanks!
May. 19th, 2010 08:00 pm (UTC)
Re: illness taking over
In general, my experience is that steroids have a negative impact on emotion management, though initially they may give a boost to the feeling of being able to cope with stress. Basically, steroids are similar to adrenaline. If your body is flooded with stress hormone on an ongoing basis, it does a bad number on your emotions in general. For positive coping with stress in general, I actually recommend cognitive behavior therapy or dialectic behavior therapy. What I referred to in this particular post was an onslaught of negative emotion that occurred due to sudden pain onset. I was given steroids to treat the pain, and I suspect that the steroid hormone diverted and went to emotional coping instead of pain management--I did not get good pain relief but got a nice emotional boost in the short run. It was not the desired effect at all--I still had to cope with the pain.
Nov. 18th, 2008 03:24 am (UTC)
Maybe you already know this, but if not, I hope it helps. Sometimes, low thyroid can cause or increase anxiety. It's not written up much in the medical literature, but I had lots of anxiety before I started treatment, and I've heard the same from others. I hope things start improving. (smile)
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