RSD/CRPS Awareness Blog Hop

You know you want to cool down your foot fast when you stick it in a hotel toilet!

When Deanne at Deanne Creative Juice and Dusti at Scrappin with Cricut decided to do a RSD/CRPS Awareness Blog Hop; I knew I had to participate!!! I unfortunately know all too well about it. September 2006, I got CRPS (complex regional pain syndrome also known as RSD (reflex systematic dystrophy). There are 2 types type I (without nerve injury) & type II (with nerve injury). I got it immediately after foot surgery. I had a tumor in a nerve in my foot. During surgery they removed that section of nerve. The surgery when fine but instead of the pain getting better, it got worse...much, much worse! Before I was even out of the recovery room there were signs of trouble. My foot turned blue. (The first of many times). To try to explain the pain of RSD/CRPS is difficult, it is like putting your foot in a fire while crushing it in a vise. Sometimes it's more like an icy burning cramping achy stabby pain. If you don't have it you won't get what I mean and don't try, just be thankful you don't. Thankfully, I was diagnosed early and was able to get much needed help. I also found some great doctors, but I had to search for them. I had never heard of RSD/CRPS and it's amazing how many medical personel (even doctors) are unfamiliar and uneducated in such an important disease. I found that I needed to be an advocate for myself and do as much research as I could. I couldn't always rely on my doctors and I definitely couldn't rely on my body anymore. One Dr. wanted to do another surgery on my foot, no thanks (I found out later that would have made it worse)! Another, said I would be wheelchair bound and wanted to fill me with meds (Not ME)! I finally found someone who knew I was a fighter and I received my first Lumbar Sympathetic Spinal block that day. Tried two more blocks...not much relief! Then tried an Algoline Catheter . That was an experience. It is an IV that goes in your lower spine and delivers Buvicane (like Novocaine) to numb my left leg/foot. The idea was to make my body forget it's in pain so it stop sending the pain signal. Well needless to say it didn't work. I can also say that I gave it a good shot. I had it in for almost 3 months and that's tough when you are trying to do anything with one leg asleep all the time. It took the edge off the pain but didn't do what we had hoped. Lastly, when I had that removed I had a Lumbar Raidofrequency Neuronomy performed which has helped the most, I think. During this entire experience my foot was hypersensitive to any touch, vibration, heat and so many other things. I couldn't stand or walk for any distance. It was nearly impossible to wear sock, let alone shoes. Taking a shower was like showering with pins. All that's in the past now. I have come a long way.

Today almost 5 years later, I am doing MUCH, MUCH better. I don't look at how I'm doing today compared to yesterday. I look at how much better I am today compared to last year or the year before that. I am still extremely heat sensitive (most RSD patients are cold sensitive) I have to shield my foot from the sun always or it will flare up. The heat thing is probably my biggest challenge...it's everywhere and in the least expected places... heat from a car engine, sunlight coming in a window, hair dryer, oven, socks or shoes, blankets, even the heat from my own body can set off my foot if it is touching another part of my body. I usually sleep with my one foot outside the blankets. I wear a Lidocaine patch when I need to walk more than usual or stand, but I can walk (not far but I can). I don't take pain meds because I want to remember and experience my life to the fullest. I have learned a lot of other ways to deal with the pain. I also have a TENS unit that I use to "distract" the nerve signal. I use meditation, distraction (scrapbooking), nutrition, physical therapy among other things to keep the pain under control. But I would have to say the biggest thing that helps is a positive attitude! Never give up, this is a disease that there is no cure, it is forever. I don't mean that to sound somber, you just learn how to relearn how to do things. I do not blame the doctor, I am not on disability, these thing just sometimes happen. You have to make the best of what God gives you. I am a positive thinking person. I was very go-go- go before, now I am able to stop and smell the roses. One of the best gifts it has given me is SCRAPBOOKING!!! I didn't really scrapbook until 4 years ago. Then I started to do it to distract from the pain. For me it's more than just scrapping it's therapeutic. RSD/CRPS has also taught me a lot about myself and others. I am especially grateful for Tim who has been my rock through this. He is more than just my husband, my friend and my soul mate and for that I blessed.

One of the things that he always says is that I have SUPER POWERS now. I can tell you where every heat source is, I have super smell, hyper sensitive touch, I can even tell the difference in flooring (concrete, asphalt, tile, wood, etc.) by how quickly my foot flares.

Now for the PRIZE!!! I am giving away a package of Tim Holtz Idea-ology Grungeboard Shapes (176 swirls texture shapes) and a package of Tim Holtz Idea-ology Fragments (48 squares and rectangles). Just leave a comment to enter to win. Sorry no picture...Blogger decided to not upload my pics. Tomarrow morning I will randomly draw a winner!