Winter is a cruel, cruel exclamation point on this disease RSD. I live in the Northeast now. I overcorrected a few years ago and left the warm South and now I suffer for months through the long dark cold and the entire time I question if I'll be able to make it to spring. Will I be able to make it through to the other side. I doubt my mental resilience. I doubt my bodies ability to hang in there. I doubt everything and everyone. As the wonderful song by the Avett Brothers so sweetly sings, I've got a head full of doubt. I've also got a tornado swirling in my brain. This pain that is overloading my body, that is flooding through and surging into my ankle, back, and arms - it's all screaming into joints and tendons and areas that aren't really in danger. The bones that were broken so badly have long since healed. The scalpels and poking and prodding and all the wrongs and dangers have subsided and yet my body still shrills with warning sirons as though a tsunami is about to slam into my shores. And while these alarm bells are sounding, while all these pain signals are being sent and resent, my mind is being being melted and fried and exhausted and I just want peace and rest and I can't find it.
I long to leave this place. I want to move away. To pack up, sell this house, move away and never come back. It's not home to me. It's the place that RSD invaded my body and started to chip away at my soul. It's the place that I had an overly cocky orthopedic surgeon tell me over and over as I came to him with concerns that something wasn't right that "his work was perfect" and "I was fine". I, as it turns out, I was far from fine. But it was more than five years and a multi-state move and finding a new orthopedic surgeon before getting diagnosed with RSD. That long wait and that constant brush off meant no hope of catching the disease early, meant letting the beast getting it's claws into me, getting the the upper hand. I have no family left in this town. I also really have no friends left in this town. This disesase is a lonely one. I can't do "bootcamps", spin class and whatever other fitness for mommies is popular, nor can I pop out for drinks randomly - I'm basically homebound in the winter but sometimes I get windows where I can get out. However most people aren't interested in someone that has to play it by ear or cancel most of the time. They just start to tell you and or your husband that they don't invite you to anything since they're sure you couldn't make it. Thank you SO much for making that decision for me! Insert major sarcasm. I love feeling even more isolated. I mean, that helps me so much. I have nothing to lose to leave. I know my husband has friends he'll miss. My kiddos will miss friends too. However, kids are resilient and they'll make new friends. I want to leave this place. I miss my family. I miss the warmth. I want to leave winter. I want to say goodbye to it.
I really want to try to help figure out how to get out of here. How to make things better. How to correct this course. I just don't know how. I'm so exhausted. I'm so wracked with pain. My body is beyond pushed to the limits and my brain is buzzing and dinging and whirling from the constant and crazy misfiring pain signals. I'm spent. I have enough left in me to worry about not being about to figure out this mess. I'm able to worry about not being about to work anymore. Able to worry that I can't just fix things anymore. I can't just force my body to listen to me. Sometimes I'm sitting and my legs simply don't listen to me anymore. I know that they are there and yet they feel so very very disconnected, so very foreign. As though they belong to someone else. It scares me. Can I move them? What if I can't lift my leg? What if this is it? What if I'm done? What if my body is don listening to me?
As I said, my brain and body are so very weary. I am so very tired. So, I shall end this now. It's in the wee hours of the morning. My body is in so much pain but maybe a different poistion will make it feel better. I can have hope still sometimes, right?
I hope that we find our answers soon. I hope that 2016 gets so much better for us. I hope that we find a way to get to a warmer climate to live. I have a lot of hopes. I hope, I wish, I pray and I believe. Some days it gets harder than others.
And on that note, I'm don't for tonight.
There's a darkness upon me that's flooded in light
In the fine print they tell me what's wrong and
what's right
And it comes in black and it comes in white
And I'm frightened by those that don't see it
~Avett Brothers
I long to leave this place. I want to move away. To pack up, sell this house, move away and never come back. It's not home to me. It's the place that RSD invaded my body and started to chip away at my soul. It's the place that I had an overly cocky orthopedic surgeon tell me over and over as I came to him with concerns that something wasn't right that "his work was perfect" and "I was fine". I, as it turns out, I was far from fine. But it was more than five years and a multi-state move and finding a new orthopedic surgeon before getting diagnosed with RSD. That long wait and that constant brush off meant no hope of catching the disease early, meant letting the beast getting it's claws into me, getting the the upper hand. I have no family left in this town. I also really have no friends left in this town. This disesase is a lonely one. I can't do "bootcamps", spin class and whatever other fitness for mommies is popular, nor can I pop out for drinks randomly - I'm basically homebound in the winter but sometimes I get windows where I can get out. However most people aren't interested in someone that has to play it by ear or cancel most of the time. They just start to tell you and or your husband that they don't invite you to anything since they're sure you couldn't make it. Thank you SO much for making that decision for me! Insert major sarcasm. I love feeling even more isolated. I mean, that helps me so much. I have nothing to lose to leave. I know my husband has friends he'll miss. My kiddos will miss friends too. However, kids are resilient and they'll make new friends. I want to leave this place. I miss my family. I miss the warmth. I want to leave winter. I want to say goodbye to it.
I really want to try to help figure out how to get out of here. How to make things better. How to correct this course. I just don't know how. I'm so exhausted. I'm so wracked with pain. My body is beyond pushed to the limits and my brain is buzzing and dinging and whirling from the constant and crazy misfiring pain signals. I'm spent. I have enough left in me to worry about not being about to figure out this mess. I'm able to worry about not being about to work anymore. Able to worry that I can't just fix things anymore. I can't just force my body to listen to me. Sometimes I'm sitting and my legs simply don't listen to me anymore. I know that they are there and yet they feel so very very disconnected, so very foreign. As though they belong to someone else. It scares me. Can I move them? What if I can't lift my leg? What if this is it? What if I'm done? What if my body is don listening to me?
As I said, my brain and body are so very weary. I am so very tired. So, I shall end this now. It's in the wee hours of the morning. My body is in so much pain but maybe a different poistion will make it feel better. I can have hope still sometimes, right?
I hope that we find our answers soon. I hope that 2016 gets so much better for us. I hope that we find a way to get to a warmer climate to live. I have a lot of hopes. I hope, I wish, I pray and I believe. Some days it gets harder than others.
And on that note, I'm don't for tonight.
There's a darkness upon me that's flooded in light
In the fine print they tell me what's wrong and
what's right
And it comes in black and it comes in white
And I'm frightened by those that don't see it
~Avett Brothers
