I've been through a lot in the past two weeks. That looks odd to me seeing it staring back at me. I mean, I've been through a lifetime in the past year, what with the docs missing the infection I kept insisting was going bad and almost dying when I went septic. Then there's the whole living with an incurable disease for going on half my life now - and I haven't even hit 35 yet. So, yeah. That first sentence looks odd. Comical really. But it's true.
I've had a major trial surgery. An experimental one. There were glimmers of hope and some relief. After some relief I had that ripped out - quite literally as it end up - and over a foot of leads would just whoosh, exit my body in a painful way. I'm still smarting from the exit wound on the one side. I'm bloody and battered and the pain levels are even worse - because after finding some relief, I then had the relief taken right back out and I have the pain of the procedure in reverse and the pain coming back full force.
Now I'm dealing with waiting for the hoops and jumps and additional tests to see if I'm even well enough to attempt this surgery fresh on the scene. If I clear and they deem me fit to operate on, I have to be cleared by insurance as worthy of this new wonderful, life and sanity saving surgery. I hate the waiting, the hoping, the feeing hopeless. The feeling worthless. God how I hate feeling worthless. And helpless. I hate both those feelings. And the pain. I hate many of the feelings I have these days.
I remember when I was in control. I was a skate and in control of my edges. I excelled at my footwork and I loved the feeling of flying across the ice the wind biting at my face and the sound of my blades cutting into the ice. Even when a jump when crazy, when I would get off center, I was like a cat and could still managed to will my body upright, keep my feet on the ice and my butt off of it. I was in control. I could spin so fast that most people were dizzy and wanting to puke just watching, but I was in control and reveled in the fast rotations and whirling dervish feel of increased G's!
I remember when I was still able to fight the disease harder. When I could coach and ignore and pretend the dead foot feeling was because the rink was cold - but strange how it only affected just the right foot for the longest time. I would spend hours trying to figure out why my foot burned and was dead feeling long after I left the rink, but I was still blissfully able to keep on the ice, keep coaching and keep working with my students. I was able to keep doing the job I love. After I couldn't do that any longer, after the writing was on the wall, and a doctor told me STOP!, I changed fields and excelled. But with the high travel demands and a boss that was an absolute bitch and a HR boss that announced "remember if you want to fire someone for a medical issue, make sure you don't put it in writing, but if you do, we can make that go away too"....Thanks HR - and GO Gators. Assholes.
So, this has been an increasingly hard journey. Not just in dealing with the increasing pain, loss of movement, loss of mental facilities, loss of my freedoms. No. It's been a loss of everything. I have been losing and hemorrhaging since RSD crept into my life. It's a sucky life since RSD crept in. I love my daughter. I love my husband. I love my dogs. But it sucks having my life sucked out of me so that I can't fully enjoy it. That I can't help provide for my family anymore.
It's getting harder and harder navigating this life. It's getting harder and harder to be me. I use to love being me. I was athletic, I loved school, I was happy being me. Now, it's so hard to be me. It's painful, it's tiring, exhausting and when I do use my handicap pass because I'm young and not outwardly "disabled" as people think of it - I get hissed at and once, spit at. It's not a life I thought I'd be leading. I did always want to be a wife and mama - and I am and it's wonderful. But, I'm struggling. But it's all the rest of it. It's all the rest of the stuff that is just not there, or is there and it's making me drown and I'm not sure how to navigate this life. I'm not sure how to be me, this me, this new me. I'm not sure how to keep going. I'm not sure how to keep breathing some days. So, I just do, and hope it passes.
I've had a major trial surgery. An experimental one. There were glimmers of hope and some relief. After some relief I had that ripped out - quite literally as it end up - and over a foot of leads would just whoosh, exit my body in a painful way. I'm still smarting from the exit wound on the one side. I'm bloody and battered and the pain levels are even worse - because after finding some relief, I then had the relief taken right back out and I have the pain of the procedure in reverse and the pain coming back full force.
Now I'm dealing with waiting for the hoops and jumps and additional tests to see if I'm even well enough to attempt this surgery fresh on the scene. If I clear and they deem me fit to operate on, I have to be cleared by insurance as worthy of this new wonderful, life and sanity saving surgery. I hate the waiting, the hoping, the feeing hopeless. The feeling worthless. God how I hate feeling worthless. And helpless. I hate both those feelings. And the pain. I hate many of the feelings I have these days.
I remember when I was in control. I was a skate and in control of my edges. I excelled at my footwork and I loved the feeling of flying across the ice the wind biting at my face and the sound of my blades cutting into the ice. Even when a jump when crazy, when I would get off center, I was like a cat and could still managed to will my body upright, keep my feet on the ice and my butt off of it. I was in control. I could spin so fast that most people were dizzy and wanting to puke just watching, but I was in control and reveled in the fast rotations and whirling dervish feel of increased G's!
I remember when I was still able to fight the disease harder. When I could coach and ignore and pretend the dead foot feeling was because the rink was cold - but strange how it only affected just the right foot for the longest time. I would spend hours trying to figure out why my foot burned and was dead feeling long after I left the rink, but I was still blissfully able to keep on the ice, keep coaching and keep working with my students. I was able to keep doing the job I love. After I couldn't do that any longer, after the writing was on the wall, and a doctor told me STOP!, I changed fields and excelled. But with the high travel demands and a boss that was an absolute bitch and a HR boss that announced "remember if you want to fire someone for a medical issue, make sure you don't put it in writing, but if you do, we can make that go away too"....Thanks HR - and GO Gators. Assholes.
So, this has been an increasingly hard journey. Not just in dealing with the increasing pain, loss of movement, loss of mental facilities, loss of my freedoms. No. It's been a loss of everything. I have been losing and hemorrhaging since RSD crept into my life. It's a sucky life since RSD crept in. I love my daughter. I love my husband. I love my dogs. But it sucks having my life sucked out of me so that I can't fully enjoy it. That I can't help provide for my family anymore.
It's getting harder and harder navigating this life. It's getting harder and harder to be me. I use to love being me. I was athletic, I loved school, I was happy being me. Now, it's so hard to be me. It's painful, it's tiring, exhausting and when I do use my handicap pass because I'm young and not outwardly "disabled" as people think of it - I get hissed at and once, spit at. It's not a life I thought I'd be leading. I did always want to be a wife and mama - and I am and it's wonderful. But, I'm struggling. But it's all the rest of it. It's all the rest of the stuff that is just not there, or is there and it's making me drown and I'm not sure how to navigate this life. I'm not sure how to be me, this me, this new me. I'm not sure how to keep going. I'm not sure how to keep breathing some days. So, I just do, and hope it passes.
And I saw my reflection in the snow covered hills
'Till the landslide brought me down
Oh, mirror in the sky
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?
Landslide - Fleetwood Mac
