Wednesday, June 9, 2010

Central Pain Again - Am I Tough Enough?

If I have learned one thing recently, it is that I better start dealing with all the emotional stuff going on in my life right now so my body can take a break from falling apart!  As I finish healing from the appendectomy 3 weeks ago, my back decided to start burning again, just like before.  Once again, it is exactly from my bra strap to my hips and rather than being deep like my other nerve damage and burning, this is the skin level.  It honestly feels like the worst sunburn you could ever imagine and then multiply that by 10 or 100.  It is just simply BAD.

Because our youngest is on full restriction, I have been forced to do much more running around than I ever normally have to do.  That is wreaking havoc on my back, as touch is the number one trigger (going in and out of the van, etc.).  Also clothing touching my back, wind blowing on my back, basically anything that touches my back in any way.  

My normal safe place - the recliner - isn't so fun right now.  Mostly, laying on my stomach with my shirt tucked in my bra strap so my back is bare is the best place for now. 

I am praying this goes away again.  Last time, it took about a month.  For most folks who suffer Central Pain Syndrome, I don't think the pain goes away.  I am crossing fingers that mine does.  We had planned a trip to Dallas for next week, but at this moment, I could not make the trip.  Today, the pain was about 25% better during the day, but it is raging again tonight.  Dallas is 8+ hours away, and then I would have strange beds and strange chairs.  Not conducive to pain relief.  

I am once again thanking God for the Lidoderm patches that are saving my mind right now.  These are applied to the skin and can be left on for 12 hours at time. 

So during these times when everything is crashing around me and my mind is just overwhelmed, I turn to God and try to remember HE is in control.  It is hard to explain what it is like to have 24/7 burning pain even with the Spinal Cord Stimulator, it doesn't cut the pain entirely.  Most days it is just getting to be too much, I will be honest.  Not feeling so much like going to visit anyone right now. 

I have purposefully not written about the many stressors right now, not to put on "airs" but due to my belief that too much focus on negative things gives it power and makes it more real.  We can leave it at - major prayers would be much appreciated.  Hopefully things will improve dramatically within the next few weeks, but we can only wait and see.  Part of this is related to our sons and I can simply admit - I am covered up with grief.  Deep, penetrating grief.  Without faith, I don't know where I'd be right now.

Right now, the bright spot in my life is my husband and our relationship.  Focusing on us and the new challenge coming up is helping keep my mind off things I cannot change, cannot control, and must accept.

This poem/story really touched me when I first read it and talk about TEARS.  Oh my goodness, does it make me cry.  I don't have this CRPS/RSD, but the story touched me just the same.  Very similar feelings.   If you know anyone who suffers chronic pain, send this to them.  It will touch them, trust me:

Am I Tough Enough? by Traci Zuckerman

Living with chronic pain redirects your focus, tests all of your strengths, and emphasizes your weaknesses. I have reflex sympathetic dystrophy (RSD)/complex regional pain syndrome (CRPS) – it is a condition or illness that causes chronic pain that has tormented me for more than nine years.

There is a stigma that exists when you live with or have any disability, especially an invisible one like pain. You start to wonder if you have the strength to live with the never-ending flare ups and the changes that life with chronic pain brings. When you start to doubt yourself, you must reach down deep and use every bit of strength and determination you have to make it through the day.

Having to live with chronic pain is like being a prisoner within my own body. I do not have the same freedom of movement that I once did. Many of my abilities are limited or changed as a result of living with RSD/CRPS. I live each day not knowing what my body has in store for me. I never know if I will be merely stiff from swollen limbs or achy from the spasms of tight muscles or even tortured by the nerve pain that burns and sticks itself like electrical needles through my skin.

I have days when I'm shocked by pain that just appears out of nowhere. I have days when the pain slowly creeps up on me. Some days I become overwhelmed – anxious, depressed and worn out by the pain, but I always stay true to myself and try to go with the flow.

I have asked myself many times, "Am I tough enough to live like this?" I also wonder if others believe I'm tough enough. I wonder if I work hard enough at trying to deal with this. Am I trying my very best to respond in a productive way and keep myself motivated toward improving?

I get tired and worn out some days – living with chronic pain is much more demanding than a full time job. Sometimes when I open my eyes in the morning, the first thought I have is, "Maybe the RSD is gone." Rationally, I know RSD/CRPS won't disappear. I also know that the only way toward wellness is to stop looking back and keep moving forward. The memories of the things I have missed along the way are daunting so I focus in on what works today and what I can try to do tomorrow.

Living with chronic pain is like any 12 step or rehabilitation program – you must be diligent and determined to progress forward. That is why it is necessary for me to continue to have an open mind about different treatments or therapies and learn as much as I possibly can about RSD/CRPS. Continuing to explore my options has become a main focus for me – it helps me to feel like I'm in control and moving forward, rather than a prisoner to my pain and my body. I too have hope for and a dream of a life where I am not a prisoner to pain.

Over the years, I have spent a lot of time wondering if I'm tough enough to make it through this. I know now that I have made it – I have the qualities and abilities I need to stay focused as I work toward wellness. I'm determined. I'm hopeful. I'm open-minded. I keep trying. It's my choice. I can see freedom from pain and even feel it sometimes, even as I experience the challenges along the way. I know now that I am tough enough and I know you are too.

OK, enough whining.  Thanks for reading.  I'll perk up before the next post, I promise.  Just keeping it real.  Who knows, maybe getting dehydrated from crying will short out the nerves!  lol

Hope you are having a pain-free day!!


1 comment:

  1. Cheri, I am so sorry that you are going through so much. I was getting caught up on your blog this morning as I was nursing and after reading this post I spent some time praying for you and your family. What a blessing that you and your husband are drawing closer during all of this. God is so faithful and I am praying his peace and comfort over you and your family as you walk through these trials. I am encouraged by your joy and faith...truly that is the Lord's strength in you! Hang in there!! Praying for you!


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