Been a while since I've written. Don't really know where to start.
I had another Lumbar Sympathetic Nerve block on the 2nd of December, a bit over a week ago.
My pain decreased decently and I was blessed to have such a breather. When it came back it came back hard and strong, depression started to set in, but I was keeping good humor and making sure I laughed and giggled at all that I found humorous. That's one of the things the psych doctor stresses the most in for those like me.
I fell asleep Friday morning after making a post to the Gorean Forum at CM that in parts weren't very nice. I didn't see it that way at first and not until cmailed by a FW. It was the fact that I had giggled at a Free man that got me scolded at. I really didn't mean to say what I did the way that I said it.
Was told I sounded or conducted myself more as a Free woman. Many people still see me as they did yesterday. The passive slave girl who would not ever dare do such a thing.
I wasn't thinking about online, I was thinking about living and not being ashamed of it. No excuses, but there are reasons.
It's just that I am free. No.. not in the manner in which you might think.
I guess you have to have a chronic disease or be dying of or surviving cancer or similar illnesses to understand.
I'm part way through with the Neuropathic Pain Study conducted by Inflexxion.
In January I'll begin a clinical trial, a study on cold laser therapy as a treatment for CRPS.
It's not a one time treatment, I'll need to be available through out the week and up coming weeks until completed.
My dad finally got out of the hospital after returning several times where his life was on the line in several circumstances. He's finally home and I'm happy for that. Mom's kidneys aren't well, but not bad enough for dialysis as of yet. Thank God!
I'll be on the air again live with Host Trudy Thomas on the Living with RSD radio show beginning this Monday.
http://www.blogtalkradio.com/thematrix777
This episodes guest is Seth David Chernoff, facing death as a two time cancer survivor.
Again the shows are live for 1 hour. Guests can call into the radio station to ask questions of the guest or host. You can join the chat room during the show to participate.
You can friend yourself to receive show reminders directly to your email.
I'm still a Group Leader for MDJunction's RSD Support forum.
Looking into more clinical trials.
Had a good Thanksgiving. Had my brother and kids over.
We're changing our own Christmas day since our oldest daughter works Christmas eve and day.
Not too sure what else to say right now.
Oh after the cold laser therapy we'll being doing a radio show on it. Will let you know when the time comes.
Wishing everyone a happy end to this year...
Until next time...
Showing posts with label CRPS. Show all posts
Showing posts with label CRPS. Show all posts
Saturday, December 11, 2010
Thursday, June 10, 2010
Exhaustion Runs Through Me
I've been so tired. I have no energy. The pain drains me entirely. I'm often in a daze. I hear voices, but they seem so far away, even when they're just a whisper away. Conversations, television, etc.
I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.
I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.
I've been really busy. Major tool for chronic pain is distraction.
Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.
I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.
I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.
I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!
My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.
Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.
I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.
I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.
It's all so bittersweet
Until next time...
I've been asked to co host the Living with RSD radio show beginning Friday June 18 @ 9:00 a.m. PST Guest is a pain management physician with further specialties from NV. while the current co host takes some medical leave days. I'm excited. A little nervous, of course. The shows are live and not scripted. The show I was on last month turned out well. After a few shows I should be fine. The host takes care of nearly all the interviewing, I'll chime in as necessary. I'll be managing the chat room as well. The host is wonderful. She's done well to bring so much information to the masses. Couldn't be happier to be apart of it.
I'm helping a man promote awareness for his "first medical (marijuana) defense trial". Advocating the medicinal use for chronic pain. He's the one facing trial. His story can be found here http://www.CRPSAdvisory.com/JeffreysStory There will be more to come.
I've been really busy. Major tool for chronic pain is distraction.
Been trying to take care of the men of the home, but it's getting harder and harder. My body is so weak. I can get dinner's prepared, cooked and served 3-4 days a week at best. For every day up, it's still the next down. Sometimes I can go 2-3 days in a row, but then a hard crash. Just wish it was a crash that came with sleep. Solid, undisturbed sleep. Never the case. It's a cycle I just can't break. My body can't take it. I have so much guilt for not being able to do more physically. While I know it's not my fault it doesn't make it easier. I care a lot.
I want to do more, I want to jump and up and down, dance, or ski, It hurts like hell to just stand, and when I do, I have to raise my spine slowly up into proper standing position, or my back and spine seizes. Taking just a few steps is sometimes unbearable.
I try to smile often. I love all that I do to help others and all that I advocate for. I wish I had more left in me to do even more. It makes me happy and gives me a sense of purpose. My calling must be in here somewhere. I have to pace my time and effort carefully.
I may need to return to one of the medications I gave up last summer. I made it a year! It's been a really hard year. I did it!
My pain feels like a blow torch has been set to my flesh and the iciest of ice picks have been thrust through me. Continuous, an intense constant ache right down to the bones. Body seizures, jerking hard with no warning, just to cease as quickly as they occur.
Having to tell the one you love to stop a tender caress is as painful emotionally as it is physically. It's really sad.
I can feel myself slipping faster and faster, but there's no rock bottom to crash into, I have to catch myself before I fall. Me! I have to have the will fly upward and so much more than that the determination to go on.
I keep telling myself "pain can't break me". Oh but it tries. I no longer pray for a cure. I pray for calm and ease. Inner peace. I'm really not a sufferer, I am a survivor.
It's all so bittersweet
Until next time...
Thursday, May 27, 2010
On the Air Live May 28th 12:00 p.m EST
It's the evening before my live radio event. I'll be on the air tomorrow morning at 12:00 p.m EST, 'course it will be 9:00 a.m for me (PST).
I'll surely be waking up with Folgers in my cup. I'm really excited about doing the show. I've already been asked to do another and am working on making that happen. It will be a how-to on Mirror Therapy. Listener's will be asked to have a mirror handy. Fun and informative all at once.
Tomorrow's show is on Functional Restoration and the pain patient. I couldn't be more happy to have been chosen as guest speaker.
I'm not listening the stations name here as not to contribute to speculation being that this specific blog is both adult related and health related. Though it has been posted several other places and of course will be given out if asked for.
In conjunction with the station I wrote a preview of the show and what will be discussed. At first I thought I wouldn't make it through an hour, yet there's so much information, an hour may not be enough.
Functional Restoration and the Pain Patient
by Twinkle VanFleet
written for Living With RSD Radio
And Compass Center for Restoration
We all seek pain relief. Aside from a cure, maintaining our pain levels to a tolerable degree is the next best thing. Medications assist and can cause additional problems. After awhile we can become immune needing a higher and higher dose just to get the same relief as when we started. If a medication isn't working, there is no benefit to taking it and one should discontinue. Medication should only be used if it actually eases and manages the pain.
There are several other things we can do to minimize our pain and lessen the intensity for as long as a pain pill might. And maybe even feel much better doing it.
Biofeedback, breathing, meditation, relaxation, yoga, pacing, changing the way we think, self-talk. pacing activities, shifting focus, visual imagery, expressing emotions, practicing appreciation, nutrition, having a flare-up protocol (duration, frequency, intensity), exercise, modalities, distraction, coping beliefs, desensitization, yoga, mirror therapy and more.
Goal Setting.
Choose a "directional goal" for the day.
Choose a "physical goal" for the day.
Choose a "memory goal" for the day.
Record both Physical and emotional responses to pain (0-10)
When setting a goal, never say "I'll try", but instead, "I will"
Don't say "I'll try to do the dishes", instead, I will do the dishes".
Thinking positive keeps us in a positive state of mind.
When we learn to get our emotional responses to our pain down it will decrease our physical response. Stress, fatigue and depression adds to our pain. We can learn to alter the way we feel.
Crucial to a CRPS patient is the ability to pace oneself throughout the day. It's not good for a CRPS patient to have a mindset of "I use to spend an hour at the gym 3 times a week. If I do the same now, I'll get better. This type of thinking is asking for a flare up. Instead, set your mind at "I will practice several routines for small times but over the course of the day". This will help prevent flare ups.
We can't dwell on who we use to be, all those things we use to do. Many of us remain locked in the bubble of our past. We feel we lost everything, nothing is the same, our lives are over.
We can learn to live a fulfilling life despite the pain. We have to learn to embrace our new selves and find happiness. Focus on the good and let go of the bad. Continuing to remain focused on all that was is stressful. Stress invites additional pain.
Practicing appreciation
Due to our beliefs we develop a pattern of "automatic thoughts" which often occur outside our conscious awareness. The only way we know "why we are thinking what we are thinking" is to develop awareness about our cognitive (thinking) process.
Research has shown that people are more successful at comping with chronic pain when they have clear goals and direct there attention and efforts toward "what to do" or "what is possible" instead of "what not to do" or "what is possible". This does not suggest a person should be in denial about one's limitations. Good awareness and the development of realistic and measurable goals are critical to success.
Appreciation- Recognition of the quality, value, significance, or magnitude of people and things.
Optimism-- Tendency to expect the best possible outcome or dwell on the mot hopeful aspects of the situation. Optimism has been associated with an enhanced immune system. A pessimistic attitude has been associated with depression and generally poor health. Pessimists tend to view events that happens to them as stable (this always happens to me). Optimists view events a temporal (just because it happened once does not mean it will happen again), specific (I am having problems learning to pace myself) and external (other people are responsible for their behaviors, I'm responsible for mine).
Pain--->Guarding or Protecting: Pattern/Less Use--->Fewer Normal movement signals to spinal cord and brain--->Tissues begin to redesign themselves including: muscle wasting/shortening, out of control swelling, increased sensitivity of local temperature and touch receptors--->Decreased movement/use, decreased socialization, decreased psychological coping.
This pattern created several changes to the body that ultimately serves to make the disease worse, in a never ending cycle of pain.
Experience reflects our Beliefs, our beliefs reflect our Thoughts, our thoughts reflect our Emotions and our emotions reflect our Behavior.
Changing the way we think (if negative) is imperative to becoming survivors, rather than sufferers.
Exercise and Physical Therapy- This doesn't need to be a workout, again pacing is our friend. We will not hurt ourselves worse. CRPS patients have to exercise. Unless there is other damage unrelated to CRPS, we will not damage ourselves further.
Example- If someone has guarded their ankle to the point of losing use, attempting 3 ankle raises is good for us. If CRPS is in our fingers, wiggling them is okay. Same with our toes or any other part of the body. This is not to say it isn't going to hurt. We have to move it or lose it.
Basic Yoga positions can help and bring a calm and peaceful state of mind at the same time.
Having a routine is important. It takes 3 weeks to make or break a habit.
Pain patients often have a terrible time sleeping. Sleeping days, and awake nights, no pattern. Our internal clocks stop working. It can be reset by waking at sunrise and settling down to sleep with the sunset.
Don't isolate, be around other's as much as possible. We all need our quiet time, yet let it be just that. Our bedroom's are for sleep. If we spend all day in our room it can cause us sleeping problems even if we already have them.
Some of us wait and wait for a cure and then look back 10 years to find it hasn't come yet just to realize 10 years has past them by.
Frustrations, Worker's Compensation, insurance companies, denials and delays, lack of answers, the feeling of an uncertain future all cause our emotions to be unsettling.
We have to take primary responsibility for our own pain. We have to want to break the cycles that keep us from moving forward. Happiness is found in accomplishment. Success come from commitment.
Breathe!
All things are possible.
Until next time...
I'll surely be waking up with Folgers in my cup. I'm really excited about doing the show. I've already been asked to do another and am working on making that happen. It will be a how-to on Mirror Therapy. Listener's will be asked to have a mirror handy. Fun and informative all at once.
Tomorrow's show is on Functional Restoration and the pain patient. I couldn't be more happy to have been chosen as guest speaker.
I'm not listening the stations name here as not to contribute to speculation being that this specific blog is both adult related and health related. Though it has been posted several other places and of course will be given out if asked for.
In conjunction with the station I wrote a preview of the show and what will be discussed. At first I thought I wouldn't make it through an hour, yet there's so much information, an hour may not be enough.
Functional Restoration and the Pain Patient
by Twinkle VanFleet
written for Living With RSD Radio
And Compass Center for Restoration
We all seek pain relief. Aside from a cure, maintaining our pain levels to a tolerable degree is the next best thing. Medications assist and can cause additional problems. After awhile we can become immune needing a higher and higher dose just to get the same relief as when we started. If a medication isn't working, there is no benefit to taking it and one should discontinue. Medication should only be used if it actually eases and manages the pain.
There are several other things we can do to minimize our pain and lessen the intensity for as long as a pain pill might. And maybe even feel much better doing it.
Biofeedback, breathing, meditation, relaxation, yoga, pacing, changing the way we think, self-talk. pacing activities, shifting focus, visual imagery, expressing emotions, practicing appreciation, nutrition, having a flare-up protocol (duration, frequency, intensity), exercise, modalities, distraction, coping beliefs, desensitization, yoga, mirror therapy and more.
Goal Setting.
Choose a "directional goal" for the day.
Choose a "physical goal" for the day.
Choose a "memory goal" for the day.
Record both Physical and emotional responses to pain (0-10)
When setting a goal, never say "I'll try", but instead, "I will"
Don't say "I'll try to do the dishes", instead, I will do the dishes".
Thinking positive keeps us in a positive state of mind.
When we learn to get our emotional responses to our pain down it will decrease our physical response. Stress, fatigue and depression adds to our pain. We can learn to alter the way we feel.
Crucial to a CRPS patient is the ability to pace oneself throughout the day. It's not good for a CRPS patient to have a mindset of "I use to spend an hour at the gym 3 times a week. If I do the same now, I'll get better. This type of thinking is asking for a flare up. Instead, set your mind at "I will practice several routines for small times but over the course of the day". This will help prevent flare ups.
We can't dwell on who we use to be, all those things we use to do. Many of us remain locked in the bubble of our past. We feel we lost everything, nothing is the same, our lives are over.
We can learn to live a fulfilling life despite the pain. We have to learn to embrace our new selves and find happiness. Focus on the good and let go of the bad. Continuing to remain focused on all that was is stressful. Stress invites additional pain.
Practicing appreciation
Due to our beliefs we develop a pattern of "automatic thoughts" which often occur outside our conscious awareness. The only way we know "why we are thinking what we are thinking" is to develop awareness about our cognitive (thinking) process.
Research has shown that people are more successful at comping with chronic pain when they have clear goals and direct there attention and efforts toward "what to do" or "what is possible" instead of "what not to do" or "what is possible". This does not suggest a person should be in denial about one's limitations. Good awareness and the development of realistic and measurable goals are critical to success.
Appreciation- Recognition of the quality, value, significance, or magnitude of people and things.
Optimism-- Tendency to expect the best possible outcome or dwell on the mot hopeful aspects of the situation. Optimism has been associated with an enhanced immune system. A pessimistic attitude has been associated with depression and generally poor health. Pessimists tend to view events that happens to them as stable (this always happens to me). Optimists view events a temporal (just because it happened once does not mean it will happen again), specific (I am having problems learning to pace myself) and external (other people are responsible for their behaviors, I'm responsible for mine).
Pain--->Guarding or Protecting: Pattern/Less Use--->Fewer Normal movement signals to spinal cord and brain--->Tissues begin to redesign themselves including: muscle wasting/shortening, out of control swelling, increased sensitivity of local temperature and touch receptors--->Decreased movement/use, decreased socialization, decreased psychological coping.
This pattern created several changes to the body that ultimately serves to make the disease worse, in a never ending cycle of pain.
Experience reflects our Beliefs, our beliefs reflect our Thoughts, our thoughts reflect our Emotions and our emotions reflect our Behavior.
Changing the way we think (if negative) is imperative to becoming survivors, rather than sufferers.
Exercise and Physical Therapy- This doesn't need to be a workout, again pacing is our friend. We will not hurt ourselves worse. CRPS patients have to exercise. Unless there is other damage unrelated to CRPS, we will not damage ourselves further.
Example- If someone has guarded their ankle to the point of losing use, attempting 3 ankle raises is good for us. If CRPS is in our fingers, wiggling them is okay. Same with our toes or any other part of the body. This is not to say it isn't going to hurt. We have to move it or lose it.
Basic Yoga positions can help and bring a calm and peaceful state of mind at the same time.
Having a routine is important. It takes 3 weeks to make or break a habit.
Pain patients often have a terrible time sleeping. Sleeping days, and awake nights, no pattern. Our internal clocks stop working. It can be reset by waking at sunrise and settling down to sleep with the sunset.
Don't isolate, be around other's as much as possible. We all need our quiet time, yet let it be just that. Our bedroom's are for sleep. If we spend all day in our room it can cause us sleeping problems even if we already have them.
Some of us wait and wait for a cure and then look back 10 years to find it hasn't come yet just to realize 10 years has past them by.
Frustrations, Worker's Compensation, insurance companies, denials and delays, lack of answers, the feeling of an uncertain future all cause our emotions to be unsettling.
We have to take primary responsibility for our own pain. We have to want to break the cycles that keep us from moving forward. Happiness is found in accomplishment. Success come from commitment.
Breathe!
All things are possible.
Until next time...
Tuesday, May 04, 2010
Pain Pain Go Away...
It's been awhile since I've written. Been having terrible pain in my back/spine/hip and butt.
It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.
During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.
I was watched over by the other man of the house and our son.
I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.
I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.
Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.
I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.
I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.
I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.
Pain is a sign of something wrong.. it's our warning that there is.
I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.
Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.
My left side has been hurting even more trying to compensate for the lack of my right.
My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.
Blocks are taking a chance...sometimes they help a little, sometimes not.
After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.
The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.
Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.
But I have to. (mostly)
I am looking forward to not feeling the added pain from winters barometric changes.
All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.
I try to keep smiling.. and often do.
I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.
I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.
I feel so behind...
but I haven't let go of hope.
Until next time...
It was so bad I upped my last pain management appointment to bypass going to the ER. They gave me a shot of Toradol which barely took the edge off. A couple of days later they prescribed me a Medrol pack. A medicine one takes 6 of the first day, then 5, 4, 3 and down until completed.
During this time the man went out of town for 2 days on a previous commitment. He would have stayed home but I didn't want him to cancel.
I was watched over by the other man of the house and our son.
I was forced to resort to the use of my walker... and for days I needed assistance just getting to my feet. I couldn't stand straight or raise my back up to it's proper position. I could only walk slouched over for days. Finally I was able to raise, but oh my did it hurt. It began to ease and within a day or so it was back.
I've been stressing over the fact that I haven't been able to do dinners and chores like I want to. A couple of nights a week the men fend for themselves. It really hurts my feelings. I feel worthless. I know they understand. If they didn't I would be forced, but forcing me wouldn't get the job done either. I'm just grateful I'm not put down over it.. I put myself down enough.
Dad finally got out of the hospital just days ago. He beat a staff infection from the first hospital. He was in a second for rehab, spent time there and was able to go home. He has a long road of recovery ahead of him. Am thankful he made it home.
I was asked to be a guest on an online radio show... Living with RSD.. and I'll be speaking about functional restoration.. will let those interested know when my show date will be. I may not post it here, instead privately for privacy reasons and to protect the station from any spam or unwanted advertising since my blog is all of me. Some things should be separated.
I was honored to be asked and chosen for this. It's an hour long segment and live. People can call in and ask questions during the show. For those who can't listen live, it will be archived and downloadable.
I don't have any other doctor other than my pain manager. Not even a primary physician. More must be going on... and part of me doesn't want to know while the other part tells me to find out or else.
Pain is a sign of something wrong.. it's our warning that there is.
I know my body enough to distinguish Fibromyalgia pain from CRPS pain. Fibro pain is a result of fatigue and stress, muscle pain. CRPS pain burns and never lets up.
Some think Fibro and CRPS are the same. They are not. Similarities exist, but major differences.
My left side has been hurting even more trying to compensate for the lack of my right.
My last block did help the pain in my knee.. phew! It's still helping it, but gradually wearing off. It returned to the rest of the right side soon after. I did get a decent week. I know for sure I was blocked at L2 and L4, but not entirely sure the other areas.
Blocks are taking a chance...sometimes they help a little, sometimes not.
After the 5 day Medrol pack, I got a break in pain for a time being enough to clean both bathrooms, the kitchen is rarely dirty and even though I stressed over it, its' been kept up.
The man or son vacuums and everyone takes care of their personal areas which is of a great help. Plus it's there own areas which is not by business to mess with anyhow.
The garbage is our sons job though I often pull it up and replace the bag. He gets behind on it. I don't like nagging and end up doing it at times and so I do it myself except for taking it out.
Ugh summer is near. I can't handle the heat. It makes my skin feel like it's being bitten. I'm not able to wear too much clothing as is.. I worry about the heat and not wanting to wear any.
But I have to. (mostly)
I am looking forward to not feeling the added pain from winters barometric changes.
All I can do is make it from day to day.. moment by moment really, nothing is consistent but pain.
I try to keep smiling.. and often do.
I may have to go back on previous meds and am trying not to go backwards.. in many ways it's inevitable. I can't stay in bed all day. Getting up is harder and harder plus I miss out on living and seeing the sun shine or the rain pour.
I have absolutely no energy and it can't be my meds, I don't take enough to keep me sleepy.
I feel so behind...
but I haven't let go of hope.
Until next time...
Thursday, August 20, 2009
Suboxone
Yesterday was my monthly Pain Management appointment. I got my authorization to begin Suboxone. There is a process to it, though. Sunday morning I will stop taking Morphine and withdraw for almost 2 days. They are prescribing me 2 meds to help me with this. I'm not sure the names of these meds yet as I haven 't picked them up from the pharmacy. I do know they are both something I haven't taken before or I would have recalled the name. On Tuesday I will go back to pain management for the induction. I'll stay there 2 hours while they give it to me. I'm starting with Subutex for a week to make the transition to Suboxone easier. I'm happy to have this help because I've withdrawn before and it's really hard to handle.
He did promise me one thing. I'll leave there on Tuesday without any more withdrawals. It's only been studied in the last 3 years for pain. What they do know about it so far is that it blocks the pain receptors in the brain. I'm happy to be a clinical trial for this.
I have nothing to lose, but something to gain if it works. If I feel it doesn't help as much as Morphine, I get to go back on Morphine.
So I'll definitely be tracking my pain levels. I also look forward to letting others know how it works for me.
I know 3 other people who take it. 2 of them have CRPS, 1 doesn't but takes it for chronic pain. All have had remarkable results. I want to be one of them, too.
I'm hopeful but not getting my hopes up too high.
Until next time...
He did promise me one thing. I'll leave there on Tuesday without any more withdrawals. It's only been studied in the last 3 years for pain. What they do know about it so far is that it blocks the pain receptors in the brain. I'm happy to be a clinical trial for this.
I have nothing to lose, but something to gain if it works. If I feel it doesn't help as much as Morphine, I get to go back on Morphine.
So I'll definitely be tracking my pain levels. I also look forward to letting others know how it works for me.
I know 3 other people who take it. 2 of them have CRPS, 1 doesn't but takes it for chronic pain. All have had remarkable results. I want to be one of them, too.
I'm hopeful but not getting my hopes up too high.
Until next time...
Wednesday, August 12, 2009
Sunday, June 21, 2009
Discussing Pain Can Cause Pain
Greetings everyone
(Cross posted from MDJ June 21, 2009)
(Cross posted from MDJ June 21, 2009)
As you know I've been quite busy with the Functional Restoration program which I've been attending since May 26th. I will graduate around the 15 of July.
When my doctors told me to let everything go that had to do with RSD/CRPS, I didn't understand. I even struggled with it. I didn't understand why they would tell someone who's put years into advocating, promoting, advertising, supporting RSD related circumstances and their heart to just.... back off.
I'm finally understanding why.
When we speak of pain, share our stories, discuss WC, all the pain it's caused us physically and mentally, the turmoil, the stress, how there is no cure for us, we are reliving the injury and pain that brought us to a suffering point of existence over and over again.
After deep deep thought, I can now understand what they mean and for our own sakes.
While I always believed that opening up (when I was finally able to do it) was a road to acceptance, I never believed in any way that by doing so could be detrimental to me.
Because I've started too much that I can't go back on, I won't be leaving what I did behind. (what I did was bring many of us together, offer knowledge and insight, and more, just like most of us do) We're on this road to make a change, provide awareness and really try to do something about it.
Instead I have to find balance to do as my doctors instructed me AND finish what I started.
Now I ask each of you.. (Please think about this carefully)
Does it help you to speak of your prior lives, your existing pain, all the hell this has cast down upon you...
Or when you really think about it...
Does it tense you to do so? If it tenses you, it's adding to physical pain, if it's causing you to think back, it's adding to your emotional pain. This will always keep us in a painful cycle.
Just because I've finally come to believe this to be true, at least mostly true, doesn't at all mean any of you do. Instead, I would just like to know your feelings about it.
There is no right or wrong answer.
Thank you in advance for sharing...
( My name has been omitted because it just doesn't matter)
Saturday, June 13, 2009
It is what it is
Just like it sounds. Another term I'm accepting more and more each day that I've had nearly beaten into me at my program is.. "It is what it is". So very true.
Yay! It's the weekend! It's going to go by quickly, I know. Last night was hard as hell. I got through it by meditating. I fell asleep sitting up several times and each time I laid back down, my P&E sky rocketed. I didn't wake up on time this morning, but was up by 10:00 a.m.
Coming off Morphine is so yucky. It's not like it was last year when I was hospitalized for major withdrawals, that was a cold turkey withdrawal because I couldn't hold anything down from the flu. This is easier, just not easy enough.
I've missed the bathroom a couple of times, so have a bucket near me. The body doesn't know if it's going to um puke or potty, so one gets both feelings at the same time. Not fun!
I have some good news on another subject but will share it another time.
I think I mentioned previously that I'm losing weight. I know a few of my meds contributed to this and since I'm not taking them, it's just falling off. I'm not fit by far, but pounds themselves are just disappearing. I'm working to tone myself with the loss.
Everytime I pull my tanktop up, I get excited. The panties I hate wearing are so loose. And while this may not be very tactful of me, I just slide my hands down my shorts right in front of everyone to pull them up. Program, family, it doesn't matter. lol
I'm handling this all quite well considering most of it. Many would not dare give up their meds. I did. Nope I cannot say it will be forever. Besides I shouldn't worry about tomorrow right? Right! But I do anticipate it. It's just part of who I still am. No different really than anticipating my owners thoughts so that I could know what he wanted or wants before being told. Still there are some differences I suppose.
I had my re eval yesterday and I met my goals. Infact, I exceeded them.
(puts the bucket aside again, ugh)
It would be so easy to pop a pill or 3 and make the withdrawals stop, but I won't. I think the tummy cramps are the worse. The headache has past for now. I have though been using Tylenol and Aleve.
It's a good day overall. I can take my night time Morphine in a few hours. On Monday that may be cut as well and then I'll be off everything 'cept 120 mgs a day of Cymbalta.
I just don't want to experience the continued withdrawals. I admit I'm scared to feel more.
Oh yeah... my sex drive is increasing. Yep it was screwed up because of all them meds also. Sometimes it just wasn't there. Not that it mattered much to me, I still serve the man at his will.
But now.... ? After a nearly 9 year decrease in sexual appetite. I just might poop him out. It's all been building up ya know and and.... um...
Yeah.. hehe
I was about to get graphic, I'll be good....
For now
Until next time...
Yay! It's the weekend! It's going to go by quickly, I know. Last night was hard as hell. I got through it by meditating. I fell asleep sitting up several times and each time I laid back down, my P&E sky rocketed. I didn't wake up on time this morning, but was up by 10:00 a.m.
Coming off Morphine is so yucky. It's not like it was last year when I was hospitalized for major withdrawals, that was a cold turkey withdrawal because I couldn't hold anything down from the flu. This is easier, just not easy enough.
I've missed the bathroom a couple of times, so have a bucket near me. The body doesn't know if it's going to um puke or potty, so one gets both feelings at the same time. Not fun!
I have some good news on another subject but will share it another time.
I think I mentioned previously that I'm losing weight. I know a few of my meds contributed to this and since I'm not taking them, it's just falling off. I'm not fit by far, but pounds themselves are just disappearing. I'm working to tone myself with the loss.
Everytime I pull my tanktop up, I get excited. The panties I hate wearing are so loose. And while this may not be very tactful of me, I just slide my hands down my shorts right in front of everyone to pull them up. Program, family, it doesn't matter. lol
I'm handling this all quite well considering most of it. Many would not dare give up their meds. I did. Nope I cannot say it will be forever. Besides I shouldn't worry about tomorrow right? Right! But I do anticipate it. It's just part of who I still am. No different really than anticipating my owners thoughts so that I could know what he wanted or wants before being told. Still there are some differences I suppose.
I had my re eval yesterday and I met my goals. Infact, I exceeded them.
(puts the bucket aside again, ugh)
It would be so easy to pop a pill or 3 and make the withdrawals stop, but I won't. I think the tummy cramps are the worse. The headache has past for now. I have though been using Tylenol and Aleve.
It's a good day overall. I can take my night time Morphine in a few hours. On Monday that may be cut as well and then I'll be off everything 'cept 120 mgs a day of Cymbalta.
I just don't want to experience the continued withdrawals. I admit I'm scared to feel more.
Oh yeah... my sex drive is increasing. Yep it was screwed up because of all them meds also. Sometimes it just wasn't there. Not that it mattered much to me, I still serve the man at his will.
But now.... ? After a nearly 9 year decrease in sexual appetite. I just might poop him out. It's all been building up ya know and and.... um...
Yeah.. hehe
I was about to get graphic, I'll be good....
For now
Until next time...
Thursday, June 11, 2009
It's Been Hard but Worth It
The last couple of days have been really hard. I already gave up most of my meds prior to this. Actually 2 weeks now. I've already gone down 15mgs of a total of 45mgs of morphine a day. Yesterday was my first day to cut down another 15mgs, my day time dose. I had a really hard time. Yesterday was hell. Pain on top of pain on top of withdrawals. I was allowed to take the evening 15mgs. It didn't help. I didn't go in today. My body is freaking out, every bone and muscle is screaming. I have to go in tomorrow as it's my evaluation for the next 3 weeks. I was only authorized for 3 of the 6 weeks to begin with.
I've learned a lot. I'll still do my yoga tonight. I had a hard time pulling myself out of bed at all. But I had to. I'm in the living room now. Being out here is a big thing even though it might not seem so. I've been isolated so long pre program. When I hurt, I tend to hide. That's what I know.
I felt myself coming up there for awhile, staying on routine, doing my home work, working on my factors, goals, etc etc... but today? Blah.
It's one of those days I find myself asking "How?". How am I going to do this long term, how am I really going to live life, how am I going to be able to get my ass up on those days like today and go to work, or go out, to the store, anything that needs to be done. I can handle the disability, I can handle there is no cure, I can handle all that crap I was in denial for so long, I can't handle pain!
The fire, ice, throbbing, dull, get the fuck outta my head pain that just goes on and on and on, never stops and my back up, my meds... I told them I was strong enough to stop them. I was...
just not now. lol
I go to bed on time, generally I wake up on time now (not like today) but even on weekends, I try to breathe right, I've learned to, but I have to be conscious of doing so, or I hold my breath which tenses my body then causes even more pain. I have to constantly tell myself to breathe. Even during sex. lol
I've learned that if I can do all this without meds for 7 years and take really good care of myself my body will generate good cells, which right now are so broken. It's probably not likely, but it gives some hope. I think. lol
I don't drink coffee after 5 p.m on weekdays anymore. While I never thought it interfered with my sleep, it probably does. I really am doing a lot to change things.
I'm on 25 words in the memory mastery system. That isn't easy for me. Once upon a time, I could have learned all of them fairly quickly.
Everyday we are conditioned to keep in mind, we will never be who we used to be, we have to accept who we've become.
Um... that's not easy. I don't like it. But I'm starting to come around.
Mostly.
I've dropped about a pant size in clothing since starting this program. Maybe more, am not sure, I wear loose bottoms because of the sensitivity of my scars and skin.
Oh, I wore socks for 10 minutes yesterday, I'm working on being able to wear shoes again. My baseline was 5 minutes and I made it to 10. I've started the balance board and do that for 1 minute, 3x a day. I ride the bike for 10-15 minutes depending on resistance. I do scrubbing for 45 seconds twice a day. I don't like that. Ugh. But I do it. And of course biofeedback is after each. I'm not sure if my atrophy in my right calf is getting better. Maybe I can find that out tomorrow. It's been holding at 2.5 cm for years now. Well, 2.0 then 2.5. but has never returned to normal since 2001.
Okay, so I think I've babbled enough for now... Bones is on, I like that show.
I'm about to do a new yoga position, the Egyptian stand. Try that for 2 minutes. I can only do it for 30 seconds right now, but will increase time as I go. The 3 fundamentals of Yoga... BET. Breathe, Effort and Time. ~grins
Until next time...
I've learned a lot. I'll still do my yoga tonight. I had a hard time pulling myself out of bed at all. But I had to. I'm in the living room now. Being out here is a big thing even though it might not seem so. I've been isolated so long pre program. When I hurt, I tend to hide. That's what I know.
I felt myself coming up there for awhile, staying on routine, doing my home work, working on my factors, goals, etc etc... but today? Blah.
It's one of those days I find myself asking "How?". How am I going to do this long term, how am I really going to live life, how am I going to be able to get my ass up on those days like today and go to work, or go out, to the store, anything that needs to be done. I can handle the disability, I can handle there is no cure, I can handle all that crap I was in denial for so long, I can't handle pain!
The fire, ice, throbbing, dull, get the fuck outta my head pain that just goes on and on and on, never stops and my back up, my meds... I told them I was strong enough to stop them. I was...
just not now. lol
I go to bed on time, generally I wake up on time now (not like today) but even on weekends, I try to breathe right, I've learned to, but I have to be conscious of doing so, or I hold my breath which tenses my body then causes even more pain. I have to constantly tell myself to breathe. Even during sex. lol
I've learned that if I can do all this without meds for 7 years and take really good care of myself my body will generate good cells, which right now are so broken. It's probably not likely, but it gives some hope. I think. lol
I don't drink coffee after 5 p.m on weekdays anymore. While I never thought it interfered with my sleep, it probably does. I really am doing a lot to change things.
I'm on 25 words in the memory mastery system. That isn't easy for me. Once upon a time, I could have learned all of them fairly quickly.
Everyday we are conditioned to keep in mind, we will never be who we used to be, we have to accept who we've become.
Um... that's not easy. I don't like it. But I'm starting to come around.
Mostly.
I've dropped about a pant size in clothing since starting this program. Maybe more, am not sure, I wear loose bottoms because of the sensitivity of my scars and skin.
Oh, I wore socks for 10 minutes yesterday, I'm working on being able to wear shoes again. My baseline was 5 minutes and I made it to 10. I've started the balance board and do that for 1 minute, 3x a day. I ride the bike for 10-15 minutes depending on resistance. I do scrubbing for 45 seconds twice a day. I don't like that. Ugh. But I do it. And of course biofeedback is after each. I'm not sure if my atrophy in my right calf is getting better. Maybe I can find that out tomorrow. It's been holding at 2.5 cm for years now. Well, 2.0 then 2.5. but has never returned to normal since 2001.
Okay, so I think I've babbled enough for now... Bones is on, I like that show.
I'm about to do a new yoga position, the Egyptian stand. Try that for 2 minutes. I can only do it for 30 seconds right now, but will increase time as I go. The 3 fundamentals of Yoga... BET. Breathe, Effort and Time. ~grins
Until next time...
Saturday, May 30, 2009
The Most Important Thing I learned This Week
I have learned quite a bit already in my first 4 days of my rehabilitation program. The most important thing I learned is that my life has been greatly affected by chronic pain. Everything reminded me of pain, in a great sense, I had given up.
Going to the store caused pain, so I stopped going. Being out with my family at all caused pain, so I stopped going anywhere. Walking hurt too bad, so I mostly stopped walking, going to the bathroom would hurt, so I started to hold it as long as I could. Sitting at the computer hurt, so I laid down often. Everything hurt! That's how my life got to this point. I lost any sense of routine, schedules and goals were not always completed on time. If my owner told me to pay the bills they were paid on time. If my son needed help with home work, I helped him, if my daughter needed help, I helped. I only went on for others. Not myself. I put nearly everything that had to do with me, off. I became secluded.
Because my Sympathetic nervous system is damaged, my fight or flight is locked down. It's frozen. A freeze frame. The mis fire of pain recognition signals in my brain, only feels pain. I always feel pain. People with my same illness do also. All of us to a similar extent.
There's nothing I can do to stop it, but I'm learning to get through it and go on.
I have to have a routine. I have to wake at a certain time. Do my Yoga, relaxation and breathing. I have to make daily goals and achieve them.
I cannot tell myself I will try to do this or I will try to accomplish that. I have to tell myself "I will". Saying that "I will try" leaves me open for choice, options and allows me to set myself up for failure or not doing as planned. Telling myself I will leaves no option but to do it. My psyche is being reprogrammed, reconditioned.
I have written my own mantra for meditating.
I was late to program on Wednesday. My pain was so overwhelming the evening of my first day that I was already giving up. I was already telling myself "I can't". I was in tears. I was sobbing when one of the doctors called to ask why I wasn't there. I had no option but to get my ass up and go. Everything was ready. My clothes, my lunch, my homework, but I was hurting and that made me not want to. Just like not wanting to go to the store or anything else. It reminded me of pain.
I am to be there by 8:30 a.m. My doc called at 10:00 a.m. My owner got me there by 10:45 a.m or about. I was to start walking that day as part of my therapy. I suppose that was in the back of my mind and again I knew it would hurt me, so I tried to avoid it as not to hurt more.
I am about 10 days off of 3 medications. Right now it's painful withdrawal symptoms on top of CRPS pain as well as movement I'm not at all use to.
It's hard to be somewhere when you haven't slept also. I hadn't slept Tuesday night. I finally did Wednesday night and Thursday I got 4 hours out of an attempted 9. Last night I told myself I would be up at 7:00 a.m which is the latest I can be up during the week in order to be on time. Since I have to put a schedule to my life, I kept it the same. I got up at 8 a.m. It was so hard. It seems silly in a way maybe that it would be so hard for me, but...
it was and while I missed by goal by an hour, I did make great progress considering my pre program ways.
While I will always physically "feel" pain, it doesn't mean I cannot be happy. It doesn't mean that my future should be a waste, or that my present is too hard to live through. I may think it all is, but it's not.
Being submissive doesn't help me here, being owned hardly matters, him pushing me isn't going to do it. Him being more strict won't make it happen. He can't save me! He can't stop the pain. I HAVE CHANGE ME! I HAVE TO WANT A PRODUCTIVE FUTURE! I HAVE TO WANT TO SERVE BETTER!
This program is showing me how. God knows I've teeter tottered on the edge of bye bye too many times because I don't know how to get through it and move forward. So many times I thought I was. By all the good things I've still accomplished through it all. I wasn't really living, I've been surviving day to day, that's all.
Am making dinner tomorrow. Spaghetti, salad and french bread (no bread for me though).
Today I will be practicing breathing. I have to learn to slow my breathing down. I forgot the name of the machine, but they put a strap around my belly to measure my breaths onto a screen. Biofeedback. I'm always in a hyperventalative state. Jeez. Had no idea. I breathe way too fast. This is something I can change. It will take time, but it CAN be fixed.
I have to listen to a relaxation cd today as well, and do some homework. I have to work on my "Factors". I'll explain more about Factors another time. I had to memorize 10 images in the Memory Master System (MMS) already, now I have to memorize them backwards. This is a pain diversion therapy.
I'm not yet in the "Zone" (remaining in my happy place inside my mind) with a score of 80 or above on my Freeze Frame biofeedback. I can only move forward once I've done so twice. My highest score has been 72 and my lowest 59 I think.
4 more people start the program on Monday.
And I'll be introduced to more PT and calming techniques.
Until next time..
Going to the store caused pain, so I stopped going. Being out with my family at all caused pain, so I stopped going anywhere. Walking hurt too bad, so I mostly stopped walking, going to the bathroom would hurt, so I started to hold it as long as I could. Sitting at the computer hurt, so I laid down often. Everything hurt! That's how my life got to this point. I lost any sense of routine, schedules and goals were not always completed on time. If my owner told me to pay the bills they were paid on time. If my son needed help with home work, I helped him, if my daughter needed help, I helped. I only went on for others. Not myself. I put nearly everything that had to do with me, off. I became secluded.
Because my Sympathetic nervous system is damaged, my fight or flight is locked down. It's frozen. A freeze frame. The mis fire of pain recognition signals in my brain, only feels pain. I always feel pain. People with my same illness do also. All of us to a similar extent.
There's nothing I can do to stop it, but I'm learning to get through it and go on.
I have to have a routine. I have to wake at a certain time. Do my Yoga, relaxation and breathing. I have to make daily goals and achieve them.
I cannot tell myself I will try to do this or I will try to accomplish that. I have to tell myself "I will". Saying that "I will try" leaves me open for choice, options and allows me to set myself up for failure or not doing as planned. Telling myself I will leaves no option but to do it. My psyche is being reprogrammed, reconditioned.
I have written my own mantra for meditating.
I was late to program on Wednesday. My pain was so overwhelming the evening of my first day that I was already giving up. I was already telling myself "I can't". I was in tears. I was sobbing when one of the doctors called to ask why I wasn't there. I had no option but to get my ass up and go. Everything was ready. My clothes, my lunch, my homework, but I was hurting and that made me not want to. Just like not wanting to go to the store or anything else. It reminded me of pain.
I am to be there by 8:30 a.m. My doc called at 10:00 a.m. My owner got me there by 10:45 a.m or about. I was to start walking that day as part of my therapy. I suppose that was in the back of my mind and again I knew it would hurt me, so I tried to avoid it as not to hurt more.
I am about 10 days off of 3 medications. Right now it's painful withdrawal symptoms on top of CRPS pain as well as movement I'm not at all use to.
It's hard to be somewhere when you haven't slept also. I hadn't slept Tuesday night. I finally did Wednesday night and Thursday I got 4 hours out of an attempted 9. Last night I told myself I would be up at 7:00 a.m which is the latest I can be up during the week in order to be on time. Since I have to put a schedule to my life, I kept it the same. I got up at 8 a.m. It was so hard. It seems silly in a way maybe that it would be so hard for me, but...
it was and while I missed by goal by an hour, I did make great progress considering my pre program ways.
While I will always physically "feel" pain, it doesn't mean I cannot be happy. It doesn't mean that my future should be a waste, or that my present is too hard to live through. I may think it all is, but it's not.
Being submissive doesn't help me here, being owned hardly matters, him pushing me isn't going to do it. Him being more strict won't make it happen. He can't save me! He can't stop the pain. I HAVE CHANGE ME! I HAVE TO WANT A PRODUCTIVE FUTURE! I HAVE TO WANT TO SERVE BETTER!
This program is showing me how. God knows I've teeter tottered on the edge of bye bye too many times because I don't know how to get through it and move forward. So many times I thought I was. By all the good things I've still accomplished through it all. I wasn't really living, I've been surviving day to day, that's all.
Am making dinner tomorrow. Spaghetti, salad and french bread (no bread for me though).
Today I will be practicing breathing. I have to learn to slow my breathing down. I forgot the name of the machine, but they put a strap around my belly to measure my breaths onto a screen. Biofeedback. I'm always in a hyperventalative state. Jeez. Had no idea. I breathe way too fast. This is something I can change. It will take time, but it CAN be fixed.
I have to listen to a relaxation cd today as well, and do some homework. I have to work on my "Factors". I'll explain more about Factors another time. I had to memorize 10 images in the Memory Master System (MMS) already, now I have to memorize them backwards. This is a pain diversion therapy.
I'm not yet in the "Zone" (remaining in my happy place inside my mind) with a score of 80 or above on my Freeze Frame biofeedback. I can only move forward once I've done so twice. My highest score has been 72 and my lowest 59 I think.
4 more people start the program on Monday.
And I'll be introduced to more PT and calming techniques.
Until next time..
Thursday, April 09, 2009
Compass Functional Restorational Center
I went to the doctor yesterday for my post op appointment. I was also re programmed by Medtronic, my new lead is working down farther in my foot as it was meant to do, but still not as far down as my toes which was the target. I seen Medtronic first and then my Pain Manager. I'm healing well and few more weeks and I should be completely healed from the surgery. It can take up to 6 months for my lead to take to the spine, it has to grab onto it and stick into place. This is why it's so important not to do anything too physical, or move abruptly.
My pain Manager is putting in a referral for me to begin the Compass Functional Restorational program. http://www.sacpainclinic.com/compass.php
My doctor heads and leads this program and it's located next door to my pain clinic http://www.sacpainclinic.com/ (The man in the photo is my pain manager himself)
The program is 7 hours a day, 5 days a week for 6 weeks. It scared me. Seriously.
So scared I came home, rested, and then ate 5 peanut butter cookies. Diet goes bye bye.
My vocational rehabilitation eventually became home schooling. I was going to the actual school quite a bit away from home. I couldn't handle 4 days a week for 4 hours. Then I went down to 2 days a week for 6 hours or as long as I could tolerate. A few times I was able to put in an 8 hour day, when pain was lower and I became consumed in my studies. I only graduated from the pre requisite course. I have a Microsoft Office Certificate, but never graduated from the full curriculum which was Corporate Publishing.
In order go through the Compass program I have to pass a phycological evaluation, just like when I was first considered as a candidate for my Spinal Cord Stimulator. You have to be referred, considered and pass.
Of course I want to do this program, I told my Pain Manager I did. It's not being forced upon me. But God I'm scared to fail. I would be happy to not be on the internet all day, I am more than eager to learn new techniques to control pain, I'm looking forward to understanding flare-ups more than I do now and how to get through them.
I can't wait to pass what I learn onto my website and my pain groups, or anyone in chronic pain. This isn't only for people with RSD/CRPS. It's for people who live with Chronic Pain in general.
I don't want to let my Doctor down and they know I have volunteered to do clinical trials and more. To learn from me. I want my body to be studied and used while I'm alive rather than when I'm dead.
I want to go back to work I really do, but it will be a miracle in itself if I manage to get through so many hours, a full week, for 6 weeks. We have to set 3 goals for ourselves. I've been thinking about that since last night. Most people's goal is to return to work or volunteer. If I was able to volunteer outside the home, I would choose work. If I could handle being out and about, I would rather bring in some income for my family.
Unless it was to volunteer at the program, similar program or help others with RSD. Then that would be my pay, I would feel richer than any doing that.
Maybe my calling lies in this somewhere...
I know in my heart this illness was placed upon me for a reason...
A reason I just don't understand completely yet...
____________________________________________________________
"One can never consent to creep when one feels an impulse to soar". Hellen Keller
____________________________________________________________
And no more peanut butter cookies
sheesh
Until next time...
My pain Manager is putting in a referral for me to begin the Compass Functional Restorational program. http://www.sacpainclinic.com/compass.php
My doctor heads and leads this program and it's located next door to my pain clinic http://www.sacpainclinic.com/ (The man in the photo is my pain manager himself)
The program is 7 hours a day, 5 days a week for 6 weeks. It scared me. Seriously.
So scared I came home, rested, and then ate 5 peanut butter cookies. Diet goes bye bye.
My vocational rehabilitation eventually became home schooling. I was going to the actual school quite a bit away from home. I couldn't handle 4 days a week for 4 hours. Then I went down to 2 days a week for 6 hours or as long as I could tolerate. A few times I was able to put in an 8 hour day, when pain was lower and I became consumed in my studies. I only graduated from the pre requisite course. I have a Microsoft Office Certificate, but never graduated from the full curriculum which was Corporate Publishing.
In order go through the Compass program I have to pass a phycological evaluation, just like when I was first considered as a candidate for my Spinal Cord Stimulator. You have to be referred, considered and pass.
Of course I want to do this program, I told my Pain Manager I did. It's not being forced upon me. But God I'm scared to fail. I would be happy to not be on the internet all day, I am more than eager to learn new techniques to control pain, I'm looking forward to understanding flare-ups more than I do now and how to get through them.
I can't wait to pass what I learn onto my website and my pain groups, or anyone in chronic pain. This isn't only for people with RSD/CRPS. It's for people who live with Chronic Pain in general.
I don't want to let my Doctor down and they know I have volunteered to do clinical trials and more. To learn from me. I want my body to be studied and used while I'm alive rather than when I'm dead.
I want to go back to work I really do, but it will be a miracle in itself if I manage to get through so many hours, a full week, for 6 weeks. We have to set 3 goals for ourselves. I've been thinking about that since last night. Most people's goal is to return to work or volunteer. If I was able to volunteer outside the home, I would choose work. If I could handle being out and about, I would rather bring in some income for my family.
Unless it was to volunteer at the program, similar program or help others with RSD. Then that would be my pay, I would feel richer than any doing that.
Maybe my calling lies in this somewhere...
I know in my heart this illness was placed upon me for a reason...
A reason I just don't understand completely yet...
____________________________________________________________
"One can never consent to creep when one feels an impulse to soar". Hellen Keller
____________________________________________________________
And no more peanut butter cookies
sheesh
Until next time...
Monday, January 05, 2009
Clinical Trial: Medicinal Cannabis- RSD/CRPS Completed
In November of 2003, UC Davis Medical Center in Sacramento California began a clinical trial for Medicinal Marijuana use for Neuropathic pain associated with Complex Regional Pain Syndrome (CRPS) type 1 and 2. Having been diagnosed with RSD/CRPS type 2 (Causalgia) the same year, I was very eager to participate in the study. The best part was that UCD Medical Center is located just 15 minutes down the street from us. Due to certain circumstances I was not able to participate.
For information about this study please refer to ClinicalTrials.gov .
ClinicalTrials.gov processed this record January 5, 2009. (Today)
What is interesting is that while cannabis for the casual user is technically illegal, mandatory eligibility requirements constituted having previous marijuana experience. You could not be marijuana naive and participate.
While I've never been a big Ganja user, I conducted my own study since I couldn't participate in the Clinical Trial.
While I'm almost certain most participants would claim it decreased their pain significantly whether it did or not simply because when severely pain stricken we become so desperate that we'll do almost anything to survive the moment. With a prescription from our pain manager we can buy, grow (up to 12 plants) and use it legally for pain.
My own personal study concluded with this:
It did not help beyond an approximate 20 minutes for pain itself. I would presume it was because during that 20 minutes I was high. My mind was sidetracked. This is not a bad thing. 20 minutes without pain or even "thinking" you aren't in pain can seem a lifetime when the alternative is praying to die.
When I finished smoking no more than a quarter of a joint, equivalent to 2-3 short to moderate inhales, my legs rushed with warmth, this is also a good thing, it means the damage from the nerves in my legs was responding, but when the pain began increasing again and at it's peak it seemed tri-fold from where it started.
It also heightened my hyper-sexuality. Yet another good thing. However, when the feeling of triple terror overwhelmed me when the pain returned, I was again back to being afraid to be touched as my flesh has become so sensitive over the last couple of years that a brush of passion, a touch of love, feels like being cut with razors instead.
Those with CRPS type 1 previously known as RSD may have better luck. CRPS type 1 means no known nerve injury or damage. Type 2 means with known nerve injury and damage. CRPS type 2 was previously known as Causalgia. RSD became a universal term to mean either.
I am interested in knowing how cannabis has helped those with CRPS type 2.
Is it really worth it? And is it worth it enough?
Perhaps.
~rsdcrpsfire
For information about this study please refer to ClinicalTrials.gov .
ClinicalTrials.gov processed this record January 5, 2009. (Today)
ClinicalTrials.gov Identifier:
NCT00254761What is interesting is that while cannabis for the casual user is technically illegal, mandatory eligibility requirements constituted having previous marijuana experience. You could not be marijuana naive and participate.
While I've never been a big Ganja user, I conducted my own study since I couldn't participate in the Clinical Trial.
While I'm almost certain most participants would claim it decreased their pain significantly whether it did or not simply because when severely pain stricken we become so desperate that we'll do almost anything to survive the moment. With a prescription from our pain manager we can buy, grow (up to 12 plants) and use it legally for pain.
My own personal study concluded with this:
It did not help beyond an approximate 20 minutes for pain itself. I would presume it was because during that 20 minutes I was high. My mind was sidetracked. This is not a bad thing. 20 minutes without pain or even "thinking" you aren't in pain can seem a lifetime when the alternative is praying to die.
When I finished smoking no more than a quarter of a joint, equivalent to 2-3 short to moderate inhales, my legs rushed with warmth, this is also a good thing, it means the damage from the nerves in my legs was responding, but when the pain began increasing again and at it's peak it seemed tri-fold from where it started.
It also heightened my hyper-sexuality. Yet another good thing. However, when the feeling of triple terror overwhelmed me when the pain returned, I was again back to being afraid to be touched as my flesh has become so sensitive over the last couple of years that a brush of passion, a touch of love, feels like being cut with razors instead.
Those with CRPS type 1 previously known as RSD may have better luck. CRPS type 1 means no known nerve injury or damage. Type 2 means with known nerve injury and damage. CRPS type 2 was previously known as Causalgia. RSD became a universal term to mean either.
I am interested in knowing how cannabis has helped those with CRPS type 2.
Is it really worth it? And is it worth it enough?
Perhaps.
~rsdcrpsfire
Wednesday, December 31, 2008
2009 ToDo List
1. Continue to be the best slave that I can be to my Master and with unconditional servitude accept his decision to take another slave when that time comes.
2. Continue to strive harder by sleeping less to spend as much time as I can with my family. They need me in their presence and I need them in mine.
3. Try not to judge a person based on the judgement of others. I can decide for myself and learn for myself. I don't need saving.
4. Let go and toss away all the negative energies amidst life's complications. I don't need drama, I don't seek it and I don't thrive on it, I'll remain content in my little 'ol world. I'll be sure to live longer without the anxiety and stress.
5. Make sure that I'm always available to help those in need, especially those struggling with and attempting to survive RSD(S)/CRPS. Pain is universal, but so is hope.
6. Continue to work hard in finding a cure for RSD(S)/CRPS. Providing information, resources, advocacy, constant research, clinical trials and promoting awareness to the entire world.
7. Continue to work on my degree in Corporate Publishing. It may take me forever, and it may never happen, but I can keep trying. *I already passed the pre req classes with a B average and earned that certificate.
8. Try to keep my body healthy and strong despite the complications. I've beat negative odds before, I can do it again.
9. Be the reminder that when ones life becomes borrowed time, your entire outlook on life changes. It all changes. Everything it once was changes. Show others that if they fix the negatives, hurt and bitterness in their lives now, there will be nothing heavy on ones shoulders to carry around, instead only peace. Pass on in peace.
10. Never step back and never stand down. If someone said, I'm going to die tomorrow, I'll be right there telling them I'm going to live past it. If I'm told it's over, I'll tell you, it's only just begun. If I'm told I can't, watch me, I will. If someone told me they're leaving, I'll say, that's okay, I'll still be here for you. If someone told me to "go get fucked", I'd say thank you, don't mind if I do. And then I'd go beg some. And with it your request would surely be granted. ~winks
Bonus. Life Goes On
2. Continue to strive harder by sleeping less to spend as much time as I can with my family. They need me in their presence and I need them in mine.
3. Try not to judge a person based on the judgement of others. I can decide for myself and learn for myself. I don't need saving.
4. Let go and toss away all the negative energies amidst life's complications. I don't need drama, I don't seek it and I don't thrive on it, I'll remain content in my little 'ol world. I'll be sure to live longer without the anxiety and stress.
5. Make sure that I'm always available to help those in need, especially those struggling with and attempting to survive RSD(S)/CRPS. Pain is universal, but so is hope.
6. Continue to work hard in finding a cure for RSD(S)/CRPS. Providing information, resources, advocacy, constant research, clinical trials and promoting awareness to the entire world.
7. Continue to work on my degree in Corporate Publishing. It may take me forever, and it may never happen, but I can keep trying. *I already passed the pre req classes with a B average and earned that certificate.
8. Try to keep my body healthy and strong despite the complications. I've beat negative odds before, I can do it again.
9. Be the reminder that when ones life becomes borrowed time, your entire outlook on life changes. It all changes. Everything it once was changes. Show others that if they fix the negatives, hurt and bitterness in their lives now, there will be nothing heavy on ones shoulders to carry around, instead only peace. Pass on in peace.
10. Never step back and never stand down. If someone said, I'm going to die tomorrow, I'll be right there telling them I'm going to live past it. If I'm told it's over, I'll tell you, it's only just begun. If I'm told I can't, watch me, I will. If someone told me they're leaving, I'll say, that's okay, I'll still be here for you. If someone told me to "go get fucked", I'd say thank you, don't mind if I do. And then I'd go beg some. And with it your request would surely be granted. ~winks
Bonus. Life Goes On
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