I have CRPS, but CRPS doesn’t have ME!

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Since the end of October 2011 when I went through the spinal cord stimulator in hopes it would help my daily pain from CRPS we decided instead of calling me robo-mom, we would call my device “hope.” I felt this weird foreign object that was going to be placed inside of me should have a name and Hope just seemed to fit. It’s a “hope” of a new beginning, less pain, less medication, more energy, being the mom I feel inside I want to be but due to pain and energy just feel I’m not at this time.

We all have those hopes for the future and mine all came crashing down 3 years ago. I had to create a new future plan and I had no clue what that was since I was still learning what CRPS was other than horrible pain. Since May 4 years ago I have been trying to learn what I can about CRPS, things constantly change and doctors find new things that work around the world. I gave up on college since I couldn’t get through a course without stress and sending me spinning out of control into a ton of pain needing another nerve block to help control. Also the fact that my memory is horrible due to my condition and all of my medications. I still don’t know what my new path is other than family and my cats. My cats are my comfort especially on days I have the worst pain. Yoga has been part of my new path to help control stress and exercise in a way I don’t have to hurt my arms while trying to get some exercise. I love my gentle yoga classes and will miss them for now while I recover from surgery.

So 1/20/2012 I go in to get my spinal cord stimulator permanently placed and then 6-8 weeks recovery process. The stimulator is a thin wire basically placed next to the spine and in my case starts up by my neck going down, with the battery pack being placed in the area a belt would be worn. I have one of the best doctors in the area doing my procedure.

Looking forward to having “Hope” back tomorrow since during my trial I was at 100% pain relief. Will update on progress once I’m able to get online again comfortably.

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CRPS or RSD as it is called is a horrible thing and no it can’t just magically be healed and go away forever like some diseases do. “CRPS” stands for Complex Regional Pain Syndrome. For me it all started May of 2008, 2 weeks after we moved into our first place we could truly call home. My right wrist got shut in the fridge on accident which as most people would think would end with a badly bruised or sprained wrist. After a week I had shooting, burning pain all the way up to my elbow and knew something wasn’t right.

Well that is when I found out about this horrible word and what it stood for. A simple accident or even surgery could cause this nerve injury and you then adjust your life. After 2 years of physical therapy, lots of medications, and several nerve blocks to try and help limit my pain in my right hand to elbow it spread all the way up my right side to my left. It is now both sides from my hands up to where my neck meets my shoulders.

Some days are better than others, cold rainy days are the absolute worst of the worst! I live in my mittens all fall-start of spring and even put them on on cold rainy days in spring. Anything touching them some days hurts and some days I feel the pain deep down in my bones. As I told my doctor it’s like the scene in Dumbo where the elephants are stacked on top of one another, well take that and put that on my wrist some days is how I feel.

I know lots of people have CRPS in this world and have it worse than I do, they must be very strong since I know just what I am dealing with is a struggle and I’m thankful for my supportive family and doctors I have surrounding me. With CRPS you can end up with depression and let me just say that is another struggle all in it self. All of this is a battle I fight daily b/c I still know I am some place inside this body and want to live my life, be the best mom I can to my daughter, the best wife I possibly can be and best provider to my fur children!

So there in a nutshell is what CRPS is and what I get to battle on a daily basis. I will try to post more this week and keep this actually going with at least 1-2 posts a week.

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So it’s been a long time since I have posted on the blog and that is due to life getting away from me, haha! Aimee has kept me very busy, we got 2 cats about 6 months ago and my CRPS is a whole other story. I have decided to use the blog as a way to keep all up to date on our family life and as an outlet for me.

In 6 days I am having surgery to put in a spinal cord stimulator to help with my chronic pain from the CRPS. I did the trial back in late Oct and it worked perfectly, I finally had no pain after 3yrs with constant burning and throbbing pain in my arms. I hated having it taken out b/c that meant my pain was going to be coming back and it did with a vengeance. Recovery will take about 6-8 weeks so the stimulator doesn’t move and get out of place from where they place it since that is where it will help me actually!

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It’s hard to believe that 5yrs has flown by already, well back in April that is. Our princess turned 5 in April and we had a wonderful party at the end of March for her due to her birthday being the week of spring break. We invited her whole preschool class and a few of her friends she has known since she was born. It was a great party and Aimee even helped Tom make her cake this year.

She has grown so much this year since she has been in school 5days a week and it’s hard to believe at the end of August she will be in Kindergarten. She has started to show us that she loves to learn and loves math especially! I am very excited to see what Kindergarten brings for her since she loves school and loves making friends. Enjoy all the pictures from her party. The one of the guys is Tom and his friend Chris who he has known for many years and now our girls have been friends since they were born as well. At the party the guys became part of a game using this long hot dog that the kids pushed. The kids were all on one side and the guys were on the other side, of course the kids won the game and the guys got pushed over by the kids and the big hot dog (haha)!

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