Jeffrey's Story- Medical (Medicinal) Marijuana Defense Trial
http://www.crpsadvisory.com/jeffreysstory_introduction.html
For more information click on the related tabs via the link above.
A video presentation is coming soon.
If you support Jeffrey please sign the guest book and let him know.
Any further comments and thoughts are welcomed also.
We are much safer in California, we can get legal prescriptions for cannabis to purchase through various smoke shops. possess eight ounces of dried cannabis, six mature plants, or up to twelve immature plants minimally. Some counties allow even more.
Jeffrey is from Florida and the laws are so tight that 1 plant is too much. From my source at: http://norml.org/index.cfm?wtm_view=&Group_ID=4530.It he's looking at 5-15 easy.
Harsh for trying to be a survivor rather than a sufferer.
Some might say he should have known better, but drastic times call for drastic measures...
As I've said before..
It really hurts to hurt.
Until next time...
Saturday, June 26, 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...
Friday, May 14, 2010
A song, Please listen- RSD A Mystery
"RSD A Mystery"
By KJ Reimensnyder-Wagner
By KJ Reimensnyder-Wagner
Listen to "RSD A Mystery"
Download Windows Media player (free)
No one knows the pain I feel
No one knows, it seems unreal
Sometimes I hope, I want to believe
That life goes on without disease
Oh, not so very long ago
I hurt my leg and did not know
Until my body refused to mend
And turned instead to the hell I'm in
(Chorus)
RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
Skin will swell, appearing tight
And blister sores, some hide with fright
Five million souls and more feel pain
Like pokers hot, you go insane.
(Chorus)
RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
(Bridge)
I want a hug, but please stay away
I want you close but it hurts that way
Tender moments are what I miss
But RSD's robbed me of this
Many colors have adorned my skin
When breezes blow, I hide within
But if I stay focused on what is right
I beat depression; I win this fight
(Chorus)
Oh RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free
From RSD, RSD
I wonder why this was meant to be
Was I put here so I could speak?
Oh, put yourself inside my shoes
Let's work to find insightful news
(Final Chorus)
Yes, RSD's a mystery
But I'm not looking for sympathy
Let's set our sights, yes, you and me
Let's find that cure for RSD
(repeat)
Yes, we'll have the cure for RSD!
---
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...
Monday, April 19, 2010
Dad's Motorcycle Accident
On April 14th I was awoken to a call from my mom. She said "Hi, honey" and right away I knew there was something wrong. In my half awake, partially comatose state, I could sense something different in her voice and in just those two words.
My dad (step) had been in a bad motorcycle accident. He was in critical condition. They thought he had punctured his Aorta, kidneys and so forth. He has a sliver fracture at his spine.
It was his birthday.
On Saturday, the 17th, he was fitted for outer braces the second option to allow him to heal so the fracture doesn't move and paralyze him. The other option was surgery where a steel brace would be implanted on both sides.
I was so scared. Mom married this man, who happened to be her high school sweet heart 7 years after I closed my own dad's eyes who died of lung cancer in my husband's home in 1991. I took care of my dad while he passed. He came to our home to pass on, instead of remaining in the hospital to do it.
I took on all the responsibilities at 22, married 5 years, 2 daughters and mom came with. My husband and his father took care of the funeral and the military salutes. Bless my father in law who passed on a year after, an mom in law who passed on a year after that.
Our children had one grandparent left and that was my mom. I continued to care for her for years until we got her an apartment of her own a block down the street to try to live again independently.
They were married 25 years.
A few years after, she had a dream one night about the old days and woke with a name on her mind. Her old boyfriend, Don. She contacted his mother who was in Sacramento and from there she met up wit him again.
To make a long story shorter they were married in 1998. Yesterday was their anniversary.
When I first found out of the accident, I was so fearful. I worried about mom needing support, I prayed he wouldn't die, I couldn't even get there.
My immediate family other than my man, and children are in Georgia.
Not only would there have been an issue with monies, but of traveling. Scraping up the funds for 1 round trip ticket to Atlanta would be one thing, transporting myself would be another. I would be wheelchair bound.. all I could think of was.... how? The next thought was to take my son with as he grew up with my disabilities and could care for me even at 13. But then... more $$$.
I was so relieved to find dad's been alert and even playful at times, ornery too.
Mom and dad both work. At the same store. Dad retired years ago and has that income, but now may be forced to retire again.
He's still in the hospital and it will be a long recovery and life will be different.
The Harley's been destroyed. A freak accident. He avoided hitting a critter in the road which was the cause of losing control of the bike.
I just hope all stays the same or gets better... it's still a critical time of knowing all for sure.
Until next time...
My dad (step) had been in a bad motorcycle accident. He was in critical condition. They thought he had punctured his Aorta, kidneys and so forth. He has a sliver fracture at his spine.
It was his birthday.
On Saturday, the 17th, he was fitted for outer braces the second option to allow him to heal so the fracture doesn't move and paralyze him. The other option was surgery where a steel brace would be implanted on both sides.
I was so scared. Mom married this man, who happened to be her high school sweet heart 7 years after I closed my own dad's eyes who died of lung cancer in my husband's home in 1991. I took care of my dad while he passed. He came to our home to pass on, instead of remaining in the hospital to do it.
I took on all the responsibilities at 22, married 5 years, 2 daughters and mom came with. My husband and his father took care of the funeral and the military salutes. Bless my father in law who passed on a year after, an mom in law who passed on a year after that.
Our children had one grandparent left and that was my mom. I continued to care for her for years until we got her an apartment of her own a block down the street to try to live again independently.
They were married 25 years.
A few years after, she had a dream one night about the old days and woke with a name on her mind. Her old boyfriend, Don. She contacted his mother who was in Sacramento and from there she met up wit him again.
To make a long story shorter they were married in 1998. Yesterday was their anniversary.
When I first found out of the accident, I was so fearful. I worried about mom needing support, I prayed he wouldn't die, I couldn't even get there.
My immediate family other than my man, and children are in Georgia.
Not only would there have been an issue with monies, but of traveling. Scraping up the funds for 1 round trip ticket to Atlanta would be one thing, transporting myself would be another. I would be wheelchair bound.. all I could think of was.... how? The next thought was to take my son with as he grew up with my disabilities and could care for me even at 13. But then... more $$$.
I was so relieved to find dad's been alert and even playful at times, ornery too.
Mom and dad both work. At the same store. Dad retired years ago and has that income, but now may be forced to retire again.
He's still in the hospital and it will be a long recovery and life will be different.
The Harley's been destroyed. A freak accident. He avoided hitting a critter in the road which was the cause of losing control of the bike.
I just hope all stays the same or gets better... it's still a critical time of knowing all for sure.
Until next time...
Monday, April 12, 2010
3 Weeks Post Pain Block
I had a really good 4 days of pain relief. The pain crept back up so quickly and I think the change in the barometric pressure added to it again.
My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.
This illness continues to suck the life out of me. It's not just the pain, no energy at all.
I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.
Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.
My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.
They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.
Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.
I worry over it, but what can a girl do?
I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.
Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.
Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.
I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.
I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.
There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.
Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.
Move it or lose it.
Until next time
My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.
This illness continues to suck the life out of me. It's not just the pain, no energy at all.
I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.
Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.
My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.
They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.
Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.
I worry over it, but what can a girl do?
I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.
Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.
Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.
I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.
I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.
There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.
Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.
Move it or lose it.
Until next time
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