Things have been silent here. Not that my mind hasn't been racing...or jumbled. Not that I haven't thought about writing a million different things. Not that I haven't been awake until the wee hours of the morning with nothing to keep me company - thus perfect time to write; and by wee hours I mean 3, 4, 5 AM. But then I start to think about writing and I stop. I freeze. I turn away.
Why. What is stopping me? What is holding me back. Fear I suppose. Fear that if I actually put these thoughts down then they are real. Fear that if they are out there on the big scary web then they will be read and then known by all. But then, really, no one is reading this I think. Even my husband had to stop reading. It depressed him. It made him scared to know how bad it is. He knows, but I honestly don't think anyone can truly, truly know what it's like to deal with this monster known as RSD/CRPS unless you have it. And, well, it's not a feel good blog. I wish it was. I wish I was one of those bloggers who was all sugar and sparkles and light about the shit hand she's been dealt, but I'm not. At least maybe I'm not there yet.
The past 16 months in particular have been the cruelest I think. Why? Because they have been tinged with both the happiest and most joyful I've ever known - the heart bursting, sheer lung bursting happiness imaginable - and the lowest, most deep down, dark black heart wrenching, not sure if I can see it through the day, not sure if I can make it through another torture filled, pain filled night.
See, I'm a mom. I am a blessed and proud mama. That's right. I'm a mama and I'm so proud of my amazing daughter. She is the joy of my life. She is the reason I haven't given in to this beast in the past 16 months. I had an amazing pregnancy- the disease took a vacation, took a hike and left me alone for 40+ blessed weeks! Heaven I tell you!! Delivery was wonderful and I had this new person in my life! I was in love!!! Then, things started to slide. I had some of the symptoms start to come back, but nothing awful...but then I got mastitis and my OB's didn't listen - I tried to get them to listen to me - because I know my body well - and they patted me on the head, told me that not all women can breastfeed, that it can hurt and people aren't used to that and barely glanced at me. Long story short, they didn't listen and I went septic after they brushed me off but my lactation consult went ballistic and helped me and fought for me. Hospitalized away from my baby....awful. IV's running in me, feeling on death's door...I don't really remember a lot of a few months there. It's funny because there are pics were I would throw a shirt on, smile and then promptly rip off said shirt and cry my eyes out - but people look at the photo and say how great I look - story of my life. I'm actually a week off from being hospitalized for being septic...and I knew I was heading south - but I just don't show illness. Shit luck for me huh? But here's the thing - I have gotten some really crap medical care- people just jabbing away at me, not listening, telling me things aren't as bad as they are.... And I'm so tired of it.
Why am I still letting people jab at me? Why am I dragging myself off the floor? Why do I hide my tears until I'm in the shower and you can't tell? Here's why. Because I love my daughter more than anything in the world. Because I've read enough blogs to know that, well, if I killed myself because I couldn't cope with the pain - my husband would ache and mourn, but would most likely find another mate. My dogs would be well taken care of. My parents would miss me but understand, on some level I think, because they are adults and get the pain levels - at least my mom does. She saw how my grandfather suffered through pain from his WWII injuries and then his cancer. That really just leaves my daughter - because I've lost really all of my friendships that I had because of this disease (did I mention how isolating it is?). My daughter would not understand. No matter what age she grows to be. She would most likely never understand why her mama abandoned her. She would not understan why I didn't fight to stay with her. She wouldn't have any memories of me either at this age. She wouldn't replace me. She might have another mother figure in her life, but she wouldn't have another mother, not in the way my husband might get another mate. And that is the cold hard fact of why I fight every day to say (blink over the next part if bad language offends you) FUCK YOU RSD YOU DON'T OWN ME!!! I'm a prison of war here. I'm trapped in a body that treats me like shit. I look fine fine but I'm not. But for my daughter I fight. Do not misinterpret this. I adore my husband. He is my rock, the love of my life, my best friend. But I know he couldn't soldier on without me. I know he's so charming and wonderful that he would be ok without me. My daughter - my daughter keeps me fighting those demons that whisper in my ear, when the flames of pain lick my skin and scorch my soul - when I'm screaming to get out of this hell that is my shell form on earth - I look into her face that is experiencing pure joy, that is enthralled with watching a bird swooping on a breeze or laughing at our dogs playing - and I push back. I swallow it down. I fight back. I use what I learned as a skater. I compartmentalize the pain. I laugh with her. I follow her joy and try to lose myself in her.
Others think I'm fine. Others think because I can laugh with her, smile at her delight that I am carefree to. I also saygo to hell if only you knew to them.
It's amazing. I feel better. This was cathartic. This is a jumble. So what if no one reads this. I know it is here. And my spirit is lighter for having getting it off my head and heart. Sometimes it's about not carrying around so much. It's the getting it out that's half the battle.
As for the title Coda - it's actually an instrumental song...from the movie "The Big Year". I fought and fought my husband on watching that movie. "Who wants to sit and watch a movie about bird watching?" I snapped and whined like a brat b/c I was hurting and in a bad mood and frustrated - I wasn't going to be please. But I sat..and I ended upliking loving the movie. It has an amazing message...I'm all about the message. I wish I could wrap my head around clearer writing like back in my former day - but my meds mess with my thought process among other things... oh well. Regardless. The instrumental piece Coda just makes me happy. It's a lovely little piece.... If I could still dance and skip around...I totally would.
Why. What is stopping me? What is holding me back. Fear I suppose. Fear that if I actually put these thoughts down then they are real. Fear that if they are out there on the big scary web then they will be read and then known by all. But then, really, no one is reading this I think. Even my husband had to stop reading. It depressed him. It made him scared to know how bad it is. He knows, but I honestly don't think anyone can truly, truly know what it's like to deal with this monster known as RSD/CRPS unless you have it. And, well, it's not a feel good blog. I wish it was. I wish I was one of those bloggers who was all sugar and sparkles and light about the shit hand she's been dealt, but I'm not. At least maybe I'm not there yet.
The past 16 months in particular have been the cruelest I think. Why? Because they have been tinged with both the happiest and most joyful I've ever known - the heart bursting, sheer lung bursting happiness imaginable - and the lowest, most deep down, dark black heart wrenching, not sure if I can see it through the day, not sure if I can make it through another torture filled, pain filled night.
See, I'm a mom. I am a blessed and proud mama. That's right. I'm a mama and I'm so proud of my amazing daughter. She is the joy of my life. She is the reason I haven't given in to this beast in the past 16 months. I had an amazing pregnancy- the disease took a vacation, took a hike and left me alone for 40+ blessed weeks! Heaven I tell you!! Delivery was wonderful and I had this new person in my life! I was in love!!! Then, things started to slide. I had some of the symptoms start to come back, but nothing awful...but then I got mastitis and my OB's didn't listen - I tried to get them to listen to me - because I know my body well - and they patted me on the head, told me that not all women can breastfeed, that it can hurt and people aren't used to that and barely glanced at me. Long story short, they didn't listen and I went septic after they brushed me off but my lactation consult went ballistic and helped me and fought for me. Hospitalized away from my baby....awful. IV's running in me, feeling on death's door...I don't really remember a lot of a few months there. It's funny because there are pics were I would throw a shirt on, smile and then promptly rip off said shirt and cry my eyes out - but people look at the photo and say how great I look - story of my life. I'm actually a week off from being hospitalized for being septic...and I knew I was heading south - but I just don't show illness. Shit luck for me huh? But here's the thing - I have gotten some really crap medical care- people just jabbing away at me, not listening, telling me things aren't as bad as they are.... And I'm so tired of it.
Why am I still letting people jab at me? Why am I dragging myself off the floor? Why do I hide my tears until I'm in the shower and you can't tell? Here's why. Because I love my daughter more than anything in the world. Because I've read enough blogs to know that, well, if I killed myself because I couldn't cope with the pain - my husband would ache and mourn, but would most likely find another mate. My dogs would be well taken care of. My parents would miss me but understand, on some level I think, because they are adults and get the pain levels - at least my mom does. She saw how my grandfather suffered through pain from his WWII injuries and then his cancer. That really just leaves my daughter - because I've lost really all of my friendships that I had because of this disease (did I mention how isolating it is?). My daughter would not understand. No matter what age she grows to be. She would most likely never understand why her mama abandoned her. She would not understan why I didn't fight to stay with her. She wouldn't have any memories of me either at this age. She wouldn't replace me. She might have another mother figure in her life, but she wouldn't have another mother, not in the way my husband might get another mate. And that is the cold hard fact of why I fight every day to say (blink over the next part if bad language offends you) FUCK YOU RSD YOU DON'T OWN ME!!! I'm a prison of war here. I'm trapped in a body that treats me like shit. I look fine fine but I'm not. But for my daughter I fight. Do not misinterpret this. I adore my husband. He is my rock, the love of my life, my best friend. But I know he couldn't soldier on without me. I know he's so charming and wonderful that he would be ok without me. My daughter - my daughter keeps me fighting those demons that whisper in my ear, when the flames of pain lick my skin and scorch my soul - when I'm screaming to get out of this hell that is my shell form on earth - I look into her face that is experiencing pure joy, that is enthralled with watching a bird swooping on a breeze or laughing at our dogs playing - and I push back. I swallow it down. I fight back. I use what I learned as a skater. I compartmentalize the pain. I laugh with her. I follow her joy and try to lose myself in her.
Others think I'm fine. Others think because I can laugh with her, smile at her delight that I am carefree to. I also say
It's amazing. I feel better. This was cathartic. This is a jumble. So what if no one reads this. I know it is here. And my spirit is lighter for having getting it off my head and heart. Sometimes it's about not carrying around so much. It's the getting it out that's half the battle.
As for the title Coda - it's actually an instrumental song...from the movie "The Big Year". I fought and fought my husband on watching that movie. "Who wants to sit and watch a movie about bird watching?" I snapped and whined like a brat b/c I was hurting and in a bad mood and frustrated - I wasn't going to be please. But I sat..and I ended up
