Till you're blue in the Face

Being Understood

I am not sure who coined the ...till your blue in the face... quote. But if you have CPPD or RA, you know exactly of what I speak. That was easy, enough said.

But it is not that easy. In 2001 I fractured my spine which led eventually to two painful surgeries. And years of recovery. However, my aging parents (now both deceased) repeatedly forgot that I lived in pain. As they lived in Florida and I in Connecticut, they could not see the pain I endured trying to work and live my life. They would always ask "You hurt your back?". Memory issues were present in both as they parted this earth.

I know you feel the same way. Because even as I go about my chores as I can on any given day I pass a mirror and think, "You look normal"! But the reflection I see is not the constant turmoil of pain, anxiety and depression. People who look at you see that reflection, not the disease you are suffering from. 

There is no known cause for CPPD, a form of Arthritis similar to RA, but not near as progressive. I am told it is a slow degeneration.

The fun part? My disease used to be called pseudo gout. Because it is painful like gout. What's more fun is that it seemingly jumps from joint to joint from wrist to neck to knee to who knows where.

There is no cause or cure for CPPD. 

You can take drugs that will ruin the quality of your life or live as you can. I currently only take gabapentin, 600 mg 2 -3 times a day.

If you have taken if you know if can make you wicked tired, so I try to put off taking them till later at night. Or I give in and take one and lay down for a while. I also have steroids my doctor says to take 15mg on days where it seems I can't get going. 

I call it speed, sure, it gets you going but messes with your mind and body...but it can help if you need to be someplace..

My doctor says I am managing my arthritis well. I exercise daily, but sometimes that is all the energy I have for the day. That doesn't jive with most peoples lifestyles. But I have to learn and adjust, it is not about what I can't do but what I can and enjoying life as it comes to me.

Living with this disease means I have to talk about it, find out and try to get help. 

"You look great". 

I know people mean well, so take it in stride. 

Or you can talk to them about your pains till your blue in the face...

Bart Connors Szczarba