Having an illness, a disease, or a disability naturally causes a lot of problems. There are primary obstacles: things that are foremost in your fight against your own body. Physical and emotional pain, awful confusion, all the stages of grief... All things I've subtly (or not so subtly) experienced and battled these past six months. And then there are the secondary complications that, somehow, make the whole thing worse.
Isolation. Physical, emotional, and spiritual atrophy. Blow-ups with family or friends who don't understand. Being thrown so far from what you thought was your path you are trapped in the bramble bushes. Fear that you are making costly, irreparable mistakes about your care, your family, your future so you take the cowards way out and decide not to decide.
2013. I'll be spending New Year's Eve with my husband and some friends. I hope you all ring in the New Year with loved ones, happiness and hope for the future.
Monday, December 31, 2012
Tuesday, December 11, 2012
Obsession...
Before this happened, Phil and I had been talking about starting a
family. He's never been interested in having kids before so I was
thrilled when the conversation turned to the possibility. Being sick and
not having prospects for getting better any time soon... I feel this
terrified push to get pregnant NOW. Sensibly I know it's ridiculous and
dangerous. In my heart, though... It's just one more thing I see
slipping away from me, one more dream shattered. We didn't have much of a
chance before, honestly, and now it's unlikely to ever happen, and the
longer we wait the more infertile I become. Still, I obsess about it. We
talked about it at dinner last night and Phil confessed he doesn't want
us to have a baby because the lion's share of the work would fall on
him.
He's right. He's right and I never thought about that and it crushed me to hear him say that.
This whole ordeal has been hard on him. I'm not the only one afraid and in pain. It's not fair that he has to do this. I offered to move in with my mom so he could move on with his life... He said that wouldn't benefit anyone because he'd be worried about me the whole time. I still think it would be better for him, even though it would cement my "AH KILL ME I'M IN HELL" status.
He's right. He's right and I never thought about that and it crushed me to hear him say that.
This whole ordeal has been hard on him. I'm not the only one afraid and in pain. It's not fair that he has to do this. I offered to move in with my mom so he could move on with his life... He said that wouldn't benefit anyone because he'd be worried about me the whole time. I still think it would be better for him, even though it would cement my "AH KILL ME I'M IN HELL" status.
Saturday, December 8, 2012
My days, my nights...
I hear what people are saying. I'm not deaf, nor am I blind. I see those Facebook posts, hear conversations that weren't supposed to reach my ears. It hurts to know people think I'm faking this or worse, blowing it out of proportion for the "benefits." What's beneficial about getting certified letters from your mortgage company because you're so far behind on payments? What's so great about knowing you have no money for even the Tiny Timmest of Christmases? Not having an income and being locked in your home day after day gets old fast.
No one but Phil sees my reality, so the grumbling is understandable. I went from independent, hard working, and ambitious to withdrawn, irritable, and contrary. They don't see my days are filled with anger, my nights are filled with fear.
Hiding my negative emotions was a necessity during high school and over the years that's been my default mode. It's hard to open up about my struggles but I'm trying. When this started, I thought I would find a doctor, have my decompression surgery, and be back to finish school and build up my business in a couple of months. The longer this goes on - and the more I get rejected by neurosurgeons - the more I see my dreams slip away, the more I lose the will to keep fighting.
I'm in pain, all day, every day. I don't get a break from feeling this way. And I'm not just losing the obvious things like graduating and starting my business. I'm afraid the longer we wait to find a doctor and get this surgery done, the greater risk there is that the damage done to my body is permanent. I'm afraid there's something more wrong with me and I'm going to lose my ability to ever be independent or worse. I know our chances of having a baby, slim to begin with, are all but gone, and who would let a woman who can barely get out of bed each day adopt a child? Especially now that we're drowning in medical bills. My home, my prison and my safe place, is no longer mine, either. I don't see my mother-in-law making plans to move into a place of her own and I worry the longer she stays, the more she settles in, and the harder it will be for her to move on.
The worst thing, though, is the fear. I've been having issues with anxiety over the last couple of years. Now the further the sun sets, the more I'm afraid. It's so weird. Sometimes I can't put a name to it - I am terrified and either I don't want to or can't explain why. Sometimes I know why but I can't figure out how to NOT be afraid of it. There are times when I want to let my old addict self drown that fear in pills, booze, whatever I can to stop, stop, STOP feeling it. There are times when I wonder if dying wouldn't be such a bad idea. (Don't call the cops. It's a visceral reaction to all this BS.)
That's my life now. Pain, anger, fear. There are some high points - when someone picks me up and takes me out for a few hours. Phil doing everything he can to make me comfortable while we wait for answers. My PCP's constant encouragement. Mostly, though, it's me and my thoughts and my broken body. Things no one can relate to and that's okay. I'll keep living day by day and hope things'll eventually get better, even though positive thinking is not my strong suit at the moment.
No one but Phil sees my reality, so the grumbling is understandable. I went from independent, hard working, and ambitious to withdrawn, irritable, and contrary. They don't see my days are filled with anger, my nights are filled with fear.
Hiding my negative emotions was a necessity during high school and over the years that's been my default mode. It's hard to open up about my struggles but I'm trying. When this started, I thought I would find a doctor, have my decompression surgery, and be back to finish school and build up my business in a couple of months. The longer this goes on - and the more I get rejected by neurosurgeons - the more I see my dreams slip away, the more I lose the will to keep fighting.
I'm in pain, all day, every day. I don't get a break from feeling this way. And I'm not just losing the obvious things like graduating and starting my business. I'm afraid the longer we wait to find a doctor and get this surgery done, the greater risk there is that the damage done to my body is permanent. I'm afraid there's something more wrong with me and I'm going to lose my ability to ever be independent or worse. I know our chances of having a baby, slim to begin with, are all but gone, and who would let a woman who can barely get out of bed each day adopt a child? Especially now that we're drowning in medical bills. My home, my prison and my safe place, is no longer mine, either. I don't see my mother-in-law making plans to move into a place of her own and I worry the longer she stays, the more she settles in, and the harder it will be for her to move on.
The worst thing, though, is the fear. I've been having issues with anxiety over the last couple of years. Now the further the sun sets, the more I'm afraid. It's so weird. Sometimes I can't put a name to it - I am terrified and either I don't want to or can't explain why. Sometimes I know why but I can't figure out how to NOT be afraid of it. There are times when I want to let my old addict self drown that fear in pills, booze, whatever I can to stop, stop, STOP feeling it. There are times when I wonder if dying wouldn't be such a bad idea. (Don't call the cops. It's a visceral reaction to all this BS.)
That's my life now. Pain, anger, fear. There are some high points - when someone picks me up and takes me out for a few hours. Phil doing everything he can to make me comfortable while we wait for answers. My PCP's constant encouragement. Mostly, though, it's me and my thoughts and my broken body. Things no one can relate to and that's okay. I'll keep living day by day and hope things'll eventually get better, even though positive thinking is not my strong suit at the moment.
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