Hope is much more than wishful thinking. It's feeling. A feeling, it's emotion. It's something to look forward to and something to believe in. There's no magic Jeanie to grant our wishes. One thing hope and wishing have in common is desire. We can hope against hope or wish upon a star.
I meditate on hope, I've never meditated on a wish.
I've been so busy continuing on in the path that was laid out for me nearly 10 years ago. A path I had not yet seen coming but had broadened quickly. It took on it's twists and turns and bumpy roads. There were ditches to fall into and muddy waters to crawl out of. There were times I began to sink and I felt as if I was drowning in my own misery.
So many times I gasped for air, I couldn't breath. Fear of the unknown overwhelmed me. Suicidal ideations came and went. I self medicated in bottles of whiskey (2002-2004). I hurt so badly. I truly thought I wasn't strong enough to survive the painful, progressive and debilitating disease that was taking over my body. I suffered. I was scared. I would dwell on the future.
How could I serve. How could I keep a good home. How would I care for my Master, my husband. How would I attend school events, how would I walk our kindergartner son to the bus stop (2003). He wasn't able to go to preschool.
I did 8.5 months of intense physical therapy 3 days a week for 2 hours a session (2001-2002) just to learn to weight bare again. My husband whom I've belong to since I was 17 got me ready each day, loaded up the wheelchair and got me to each and every appointment despite the fact he had to work as well.
Our daughters were 11 and 12 (2oo1) when I was first injured. They had to take on the responsibility of caring for the home and our oldest daughter Kharisma became her little brothers second mom. Our girls are 12 months and 4 days apart. Our son came 9 years after our first.
I lost a baby while in physical therapy (not during a session), a long ugly story. (Jan 8, 2003).
As years passed I never did heal instead I developed other illnesses both physical and emotional. Finally in 2006 I received treatment other than pain medications and pain management appointments. I was given a series of 3 Lumbar Sympathetic Blocks scheduled 1 week apart and then a trial Spinal Cord Stimulator and within a couple of months the permanent was implanted.
I had another LSB on the second of this month. A total of 14 now. Originally I had a single lead/wire on my spine. I've had 2 since 2009.
I attended a 6 week long, 5 day a week, 8 hour a day Functional Restoration program. (2009)
I'm suppose to begin a trial study for Cold Laser Therapy beginning early next month. Within weeks. While the protocol isn't absolute as of now, when I picked up the contract to sign I was told it could be as much as every other day for 4 weeks. I'll gladly be a guinea pig to provide hope for the future. Not only in myself, but for millions of others also.
I'm nearly finished with the current study I'm doing on Inflexxion on Neuropathic pain.
I'm still work for MDJunction.com as a Group Leader in the RSD support forum.
http://www.mdjunction.com/reflex-sympathetic-dystrophy (ID- rsdcrpsfire)
In 2005 I turned my dark world around. It became my passion and purpose to make a difference. I work daily promoting awareness, offering resources, support and information in regards to Reflex Sympathetic Dystrophy Syndrome/Complex Regional Pain Syndrome.
My website is still at http://www.crpsadvisory.com
My Facebook is http://www.facebook.com/rsdcrpsfire
It's used for both work and pleasure. I feel no need anymore to segregate me from me.
Living with RSD Radio which I've appeared on both as a guest twice and a co host previously is now called...
Living with Hope Radio Show with Host Trudy Thomas (until further notice, I am your co host)
http://www.blogtalkradio.com/thematrix777
I am privileged and honored to be apart of the show. I expect nothing in return. I'm happy to work for Trudy and am thrilled to learn even more from the guests who come on to her show.
(It also makes me happy to know that members (in various venues), listeners, readers and viewers learn from me)
If someone feels I'm in the wrong place, I have permission to be the judge of that. There seems to be a bit of drama everywhere. Those who know me well know very well I'm not swayed by gossip.
The show has spread it's wings and broadened it's episodes beyond RSD/CRPS. While RSD/CRPS is still a focus chronic pain, depression and other illnesses are aired.
The show airs live Monday's 5:00 p.m PST and Friday's 9:00 a.m PST.
A chat room is available during the show. Listeners can call in and ask questions of the hosts or guests.
Lots of new things coming soon.
The show circles around hope because it takes hope and inner strength to over come the obstacles that life sometimes puts in our way.
Hope to see you there!
Once a sufferer, forever a survivor,
Until next time,
Showing posts with label Complex Regional Pain Syndrome. Show all posts
Showing posts with label Complex Regional Pain Syndrome. Show all posts
Friday, December 24, 2010
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...
Thursday, January 29, 2009
Decreased Pain
My pain is still decreased in my right foot. It worked! For how long I will not know. I'm having some trouble with my calf and leg. My back at the injection sites is still sore, but otherwise am doing much better.
In the foot itself my pain level is a 2. Combined a 5.
I really needed a pain break and I got it good enough and I still have 2 more chances.
I am grateful.
In the foot itself my pain level is a 2. Combined a 5.
I really needed a pain break and I got it good enough and I still have 2 more chances.
I am grateful.
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
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