My husband shared this song with me last night. It made me cry. It is my new anthem about having Scleroderma.It is called All About Your Heart by Mindy Gledhill.
I love this line...
It’s not about your scars
It’s all about your heart
Wednesday, May 11, 2011
Something new...
I feel like my Scleroderma is catching up with me lately. I feel like I was living in a dream world for the past few years where my Scleroderma hasn't been very active or at least not affecting my daily living too much. And then that last few months have just seemed like a relentless onslaught of symptoms. Right now I have this excruciating pain in my left right finger that is constantly hurting. First I thought that I fractured it after smashing it into the stroller while folding it up but after a visit to my Rhumatologst and some x-rays I found that wasn't the case. He said I have some serve bone resorption but no fracture. He also suggested that since my skin on my fingers is so tight it can't swell. So it is swelling internally and causing pain. I have never heard of this. I just don't understanding why it would be hurting so much. I wish I could hear from someone else who has had this same problem and they could tell me, "Yeah it will get better in a couple more days." It's already been about two weeks. Little things like buttoning the kids clothes and changing diapers have been really hard. And everytime I just tap my finger on something it sends these horrible pains shooting up my hand. I've started wearing a glove on that hand full time now. Which is funny because just about a week ago I was still wearing a glove on my right hand full time while my ulcer healed up. Time to switch I guess.
When I was younger I had several older friends with Scleroderma who were constantly in a lot of pain. They took narcotic meds or wore pain patches (or both). I never really understood how tiring constantly pain could be until lately. The other problem is that I'm still nursing my youngest son and thus can't take pain medication that isn't over the counter. Meaning my pain is never really gone just numbed a little. If this problem doesn't improve I'm considering weaning my youngest. However I know I can't parent while taking heavy pain medication. Sigh... we will see.
When I was younger I had several older friends with Scleroderma who were constantly in a lot of pain. They took narcotic meds or wore pain patches (or both). I never really understood how tiring constantly pain could be until lately. The other problem is that I'm still nursing my youngest son and thus can't take pain medication that isn't over the counter. Meaning my pain is never really gone just numbed a little. If this problem doesn't improve I'm considering weaning my youngest. However I know I can't parent while taking heavy pain medication. Sigh... we will see.
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