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.


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

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


RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free

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.


RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free


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


Oh RSD - that dystophy
Can change your life, oh it did for me
Let's find a cure, so we'll be free

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


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...