I won't be awake in the morning, I had plans you know, I was doing something. I have had 4 wonderful months, yes a new drug regime, followed by nerve blocks when the pain gets icky, but it was working. now 3 days of OMG let me die, and here I sit at 2 am in pain, typing hoping to sleep soon...
Have you ever noticed the greater the hope, the greater the drop. They don't tell you when you live in a world surrounded by pain, that hope is the enemy. They tell you to keep your spirits up, and to dream, but dreams are for the people who get a future. Hope is for someone who will eventually get to have a real life. A real job. I don't see either of those things in my future.
If I believed in a better world, then I would keep hoping modern medicine would find a cure for this, but there are always doctors who find it easier to blow off your pain, tell you it is all in your mind. It can't be that you are in pain, because they can't fix you, and these doctors "god complex" is so deep they cannot believe there is something they can't fix. So it mus be that you are lying.
So raise your glass to the doctors whose fantasies keep us in pain...
Thursday, March 20, 2014
Tuesday, December 11, 2012
Medical Marijuana & me
I dislocated my shoulder. I was helping my neighbor who fell and broke her leg. So I try to help out and I fall. From one arm to no arms is sorta like Dante's hell, no matter where you are standing, it just gets worse.
I know, now you are trying to figure out what this has to do with medical marijuana, right? I hurt in both arms, my shoulders are seized up and every time I see my therapist, he says things like " I can't believe you are still walking"or how about " I think you may want to not jump off the wagon this month, because I can't even touch you without hurting you.". I found out I am without a doubt eligible for Medical Marijuana. I would never support the taking of it. I was married once a million years ago to a pothead. He smoked pot then and he smokes pot now. He is just a little bit off, and he lives at home with his mom. He hasn't really changed in the 20+ years we have been divorced. Is it because he smokes pot? I don't know, I just know the people I know who smoke pot, don't seem to change as much as the rest of the world.
I'm not saying you can't. Its up to you, but I believe in studying the affects & effects of using anything, and what I have found is I will suffer through the withdrawal, and the vomiting, and keep on going until I get to the point where I can stand the pain.
I know laws are changing and there are a million people who say you should get to make your own choice,but at the end of the day, Federal law says its wrong. And even if they didn't I do not think my moral compass would allow me to just jump on the bandwagon and start changing my perspective.
I tell my children if they smoke pot then they can't live in my house. How can I have one set of standards for my family and another for me.
I refuse to change my standards and mores for a law I don't agree with.
I know, now you are trying to figure out what this has to do with medical marijuana, right? I hurt in both arms, my shoulders are seized up and every time I see my therapist, he says things like " I can't believe you are still walking"or how about " I think you may want to not jump off the wagon this month, because I can't even touch you without hurting you.". I found out I am without a doubt eligible for Medical Marijuana. I would never support the taking of it. I was married once a million years ago to a pothead. He smoked pot then and he smokes pot now. He is just a little bit off, and he lives at home with his mom. He hasn't really changed in the 20+ years we have been divorced. Is it because he smokes pot? I don't know, I just know the people I know who smoke pot, don't seem to change as much as the rest of the world.
I'm not saying you can't. Its up to you, but I believe in studying the affects & effects of using anything, and what I have found is I will suffer through the withdrawal, and the vomiting, and keep on going until I get to the point where I can stand the pain.
I know laws are changing and there are a million people who say you should get to make your own choice,but at the end of the day, Federal law says its wrong. And even if they didn't I do not think my moral compass would allow me to just jump on the bandwagon and start changing my perspective.
I tell my children if they smoke pot then they can't live in my house. How can I have one set of standards for my family and another for me.
I refuse to change my standards and mores for a law I don't agree with.
Saturday, November 10, 2012
Pain is the vagary
Pain is not a set in stone written from the hand of god to you notification of how you will feel. Pain is the emotion you may feel this way at some point in the near future.
As I am decreasing the amount of pain medication I take, I am learning pain is pain. And what I feel today, may put me in bed tomorrow.
I have a physical therapist who works on the pain. He tries to understand, but without living in the moment of insanity he cannot. He makes the days easier to live with sometimes, he works around the area where I hurt. He listens to my rants, my struggles, and he comisserates. He cannot fix it, but he can help, somedays.
Pain is a moment in time which like a time machine takes you back and forth, rolling like the waves of the ocean. Sometimes pounding into the shore with the force of a hurricane, and then turning and gently licking the edges of the sand
Noone promised me paradise while I was living this life, but no one said I would live through Dante's versions of Hell either. How do I just get back to today
As I am decreasing the amount of pain medication I take, I am learning pain is pain. And what I feel today, may put me in bed tomorrow.
I have a physical therapist who works on the pain. He tries to understand, but without living in the moment of insanity he cannot. He makes the days easier to live with sometimes, he works around the area where I hurt. He listens to my rants, my struggles, and he comisserates. He cannot fix it, but he can help, somedays.
Pain is a moment in time which like a time machine takes you back and forth, rolling like the waves of the ocean. Sometimes pounding into the shore with the force of a hurricane, and then turning and gently licking the edges of the sand
Noone promised me paradise while I was living this life, but no one said I would live through Dante's versions of Hell either. How do I just get back to today
Sunday, September 16, 2012
Everyone wants to help
Have you ever noticed how everyone wants help you when you have chronic pain issues? They all have worked with dozens of people just like you and they are all doing fine now.
I'm not doing just fine, the fan running in my bedroom, sometimes causes a breeze along my body, and the pain is like a napalm fire, like through the bone, muscles, cells, and it makes me hate how you sit in your air-conditioned rooms, with smiles of comfort.
I know the summer is better than the winter, no clothes to rub against me, no icy fingers spreading along my spiny with the touch of desolation. I feel the warmth of the sun on my soul, pulling me into a drowsy lull, and when I drift, the cauterizaton of my flesh stuns me awake. A few minutes to long, the color of my skin is red, and I have guaranteed myself weeks of unrelenting pain.
Maybe summer isn't better. Fall is better, but the nights are getting cold, and the warmth of the sun is now offset by raindrops, falling onto my skin. Spring, spring will be better, for I will have endured..
Pain,
defies the seasons
aborts reason,
and I stand here,
alone, dark, terrified...
I'm not doing just fine, the fan running in my bedroom, sometimes causes a breeze along my body, and the pain is like a napalm fire, like through the bone, muscles, cells, and it makes me hate how you sit in your air-conditioned rooms, with smiles of comfort.
I know the summer is better than the winter, no clothes to rub against me, no icy fingers spreading along my spiny with the touch of desolation. I feel the warmth of the sun on my soul, pulling me into a drowsy lull, and when I drift, the cauterizaton of my flesh stuns me awake. A few minutes to long, the color of my skin is red, and I have guaranteed myself weeks of unrelenting pain.
Maybe summer isn't better. Fall is better, but the nights are getting cold, and the warmth of the sun is now offset by raindrops, falling onto my skin. Spring, spring will be better, for I will have endured..
Pain,
defies the seasons
aborts reason,
and I stand here,
alone, dark, terrified...
Saturday, September 15, 2012
Sleeping
I remember a time when I slept like a "normal" person. My husband does, he hates when I keep him up, and here I sit at 6:49 am, been up all night again.
It actually wasn't even a bad night, not like the ones where you crawl,with your eyes crossed and a crazy glare, into a lukewarm tub hoping against hope the water will somehow stop the nerves from firing in random, rapid fire burst of agony. It wasn't the night where you twist and turn and are awake every 2 hours wishing, praying, swearing you will be better if the pain just fades and you can get some sleep.
Nope, it wasn't that kind of night at all, it was more, a wish my eyes were tired, wish my brain was tired, kind of night. And here I sit as dawn creeps up and through the cracks of my dark curtains, torturing the gentle soul, I know I was at some point in my life.
I think sleep deprivation makes you crazy, but I feel in charge somehow. I think it is in the knowing. Knowing the pain will come with the morning, knowing no matter how hard I try, this decrease in medication will continue to make me sick, and angry, and tired. But I also know at the end of the Road of Blackness, there may be a light, just a little one, and I will see who I was again.
Will I sleep, no, not now, but soon, until the shock of pain, sears my sanity on the open campfire of Chronic Pain..
It actually wasn't even a bad night, not like the ones where you crawl,with your eyes crossed and a crazy glare, into a lukewarm tub hoping against hope the water will somehow stop the nerves from firing in random, rapid fire burst of agony. It wasn't the night where you twist and turn and are awake every 2 hours wishing, praying, swearing you will be better if the pain just fades and you can get some sleep.
Nope, it wasn't that kind of night at all, it was more, a wish my eyes were tired, wish my brain was tired, kind of night. And here I sit as dawn creeps up and through the cracks of my dark curtains, torturing the gentle soul, I know I was at some point in my life.
I think sleep deprivation makes you crazy, but I feel in charge somehow. I think it is in the knowing. Knowing the pain will come with the morning, knowing no matter how hard I try, this decrease in medication will continue to make me sick, and angry, and tired. But I also know at the end of the Road of Blackness, there may be a light, just a little one, and I will see who I was again.
Will I sleep, no, not now, but soon, until the shock of pain, sears my sanity on the open campfire of Chronic Pain..
Monday, September 10, 2012
Losing My Mind
I made the decision to get off the narcotics, at least for a little bit. I can't function in the world any longer and I keep falling out of my life.
Its funny, one of those things they don't tell you, and I think they should. I think it should go something like this.
Dr- " So in addition to not being able to think, because we will have you so out of it some days, when the pain is bad, you may suffer from muscle spasms, frustration, sleeping problems, and you may drop out of your life for a few days."
Me-" What do you mean drop out of my life? Life isn't like school, you can't just take days off."
Dr- " Well there will be days where you will be absent, you won't be dead, just out of the universe so to speak."
Me- " I don't understand"
Dr- "You will, when it happens, you will"
See then when those days came when you found yourself laying in bed, and it seems like you had been there for years, and it was pretty close to true, you wouldn't be surprised. The worst is when people ask you the stupid question, " So haven't see you in like a month, have you been in pain?" "No, been smoking a little crack and hiding under the couch, waiting for the zombie apocalypse." because I have a chronic pain condition and it randomly just stops bothering me and I start doing dumb things...
I need a life, and I am going to try a new scs, and then I am going to get a real life, where my brain works, and I don't stay awake all night. Where my math brain works, and my college life works again.
So in the meantime, I am losing my mind, as the drugs wear off, and I wish for a better life...
Its funny, one of those things they don't tell you, and I think they should. I think it should go something like this.
Dr- " So in addition to not being able to think, because we will have you so out of it some days, when the pain is bad, you may suffer from muscle spasms, frustration, sleeping problems, and you may drop out of your life for a few days."
Me-" What do you mean drop out of my life? Life isn't like school, you can't just take days off."
Dr- " Well there will be days where you will be absent, you won't be dead, just out of the universe so to speak."
Me- " I don't understand"
Dr- "You will, when it happens, you will"
See then when those days came when you found yourself laying in bed, and it seems like you had been there for years, and it was pretty close to true, you wouldn't be surprised. The worst is when people ask you the stupid question, " So haven't see you in like a month, have you been in pain?" "No, been smoking a little crack and hiding under the couch, waiting for the zombie apocalypse." because I have a chronic pain condition and it randomly just stops bothering me and I start doing dumb things...
I need a life, and I am going to try a new scs, and then I am going to get a real life, where my brain works, and I don't stay awake all night. Where my math brain works, and my college life works again.
So in the meantime, I am losing my mind, as the drugs wear off, and I wish for a better life...
Friday, May 25, 2012
The things they forgot to tell me
I have mono, the kissing disease, got it without a single kiss.
When I got CRPS, they told me about all the issues I would deal with, and I have dealt with most of them, the depression, the ongoing pain, the stress, the anger. What they didn't tell me was that when I quit smoking, and ended up with COPD to go with my CRPS, I would end up taking lots of drugs, and the two issues together would eventually cause my immune system to decrease.
This means what shouldn't affect me much, turns me into a walking zombie. I have slept off and on for the last 2 weeks, which means all the fun I should be having is gone, because I sleep. My spleen is enlarged and because I have to keep taking all my medications, I have to watch for issues with my liver.
And all I want to do is just get up and go to work, but how will I find a job, who will hire me?
I want to feel better, I want to go places, and enjoy my life again, and now instead of having fun, and traveling, and having a great time with my family, I am sitting at home, and now I can't even have friends and family cause I have Mono. Life is great when you are in chronic pain and wishing for your past...
When I got CRPS, they told me about all the issues I would deal with, and I have dealt with most of them, the depression, the ongoing pain, the stress, the anger. What they didn't tell me was that when I quit smoking, and ended up with COPD to go with my CRPS, I would end up taking lots of drugs, and the two issues together would eventually cause my immune system to decrease.
This means what shouldn't affect me much, turns me into a walking zombie. I have slept off and on for the last 2 weeks, which means all the fun I should be having is gone, because I sleep. My spleen is enlarged and because I have to keep taking all my medications, I have to watch for issues with my liver.
And all I want to do is just get up and go to work, but how will I find a job, who will hire me?
I want to feel better, I want to go places, and enjoy my life again, and now instead of having fun, and traveling, and having a great time with my family, I am sitting at home, and now I can't even have friends and family cause I have Mono. Life is great when you are in chronic pain and wishing for your past...
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