A New Beginning: My Life with RSD: Functional Restoration Programs

A New Beginning: My Life with RSD: Functional Restoration Programs

Always Tired

I'm always so very tired.

Being busy poops me out, doing nothing poops me out.

I was chosen to participate in a Neuropathic Pain Study. Originally I sent my fax in to late via the man and having to rely on him. I was put on the waiting list. After replying that I was still interested if a spot opened, I was emailed back within days that there was an opening.

This is a 6 week study. I'm hoping it helps me as well as the millions who suffer or struggle with neuropathic pain and similar conditions or disorders.

The last radio show went great! I was low in the beginning and went from head set to hand set mid show. It did go well after all. You may have to turn me up in the beginning. The show was on Mirror Therapy and Desensitization.

Here it is nearly 4:00 a.m and while I'm sleepy, I'm awake sitting up in bed in the dark. I'm often like this. Even fall asleep sitting up.

Our son started the 8th grade on Monday. The girls are doing well.

The man has been back to work for a month now. A bit of separation anxiety still exists, but unlike my friend who recently lost her Master without warning, mine is coming home for as long as the good Lord allows.

I think about my friend and how she's coping. It brings back memories of my own Master's heart attack at his age of 38 at the time. Fear has continued to run through me ever since. He still has 2 stents in his heart. But I have him and I'm grateful.

I pray my friend has a bright and happy future ahead of her.

I haven't done too much more with my other xxx blog or any of them really.

Keeping dishes washed and man toilet clean is chore enough most days. Cooking meals are exhausting my limbs. Pain over flows and I have a hard time catching up.

I've lost a few pounds, but worry the return to taking Neurontin will put it back on.

In June we celebrated 24 years together, on the 14th (a few days ago) we quietly celebrated 23 married. It's sometimes hard to believe we're heading on 25 years.

I've belonged to him 7 years longer than I ever belonged my parents.

One thing I have become some what addicted to is the series Lost. Been watching it on Netflix starting from 2004 finally up to 2006. A few episodes an evening when able. Yep, I'm stuck!

Wishing you all well

Until next time..

Mirror Therapy (on the air live tomorrow morning)

Hi everyone

Please join me tomorrow morning August 6th, 2010 at 9:00 a.m PST, 11:00 a.m Central and 12:00 p.m noon EST

For a show on Mirror Therapy and desensitization. I'll be your guest with Host Trudy Thomas http://www.blogtalkradio.com/thematrix777

A chat room is also available during the show.

The show is a live one hour segment (but can be downloaded after the show airs or played directly from the site) You can call in and ask questions too Call in number 347-884-9691

We ask that you bring a mirror, full length for lower extremity or a table top for upper extremity RSD. Bring cotton or silk for desensitization. This is not a requirement, but helpful.

Privileged once again to be the guest speaker on the Living with RSD radio show tomorrow morning discussing/teaching Mirror Therapy and desensitization. My 2nd time on the air as a guest, the last time as co host. The targeted audience is for those with disabilities, in chronic pain or who've lost the use of their limbs or ROM.

Until next time...

New Adult Blog

Adult related. Add if you like. Not intended for the weak. Explicit links included. salacioussurrender.blogspot.com

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Keeping as busy as able. Working various venues, and then pooping out again. The mans new work schedule will take a lot of getting use to and difficult to keep up on anything besides him and the home.

On days I couldn't manage being up and about, he would help with some dinners at times. This isn't going to happen any more, nor should it, so there may be more nights the rest of the home are on their own. I don't like that. I don't even like knowing that. It makes me feel terrible. Still not sure how it's going to work out. Pushing myself too much, puts me down for days. There isn't any balance.

We did go to the lake a week or so ago for a few hours. Had a great time. I eased myself into the water as most of us do to get use to it. I finally fully submerged a couple of times. But my knee to my toes on the right side still feel like it's in ice water. A painful feeling. The fire and ice burning is awful.

My dad's had even more surgeries since his motor cycle accident a couple of months ago, staph infections run through him and he's just not well at all. He's now going back to a rehab facility for another 5-7 weeks. Mom continued to work and stay with him at the hospital. I don't think she can stay with him at the rehab. All we can do is keep praying.

I'm not sure how often I'll check into this blog, I'm overloaded, but there's a reason to the other. I'm leaving the domain of same name pointed to my toy store for now and where it's been for over a year or more, the new blog is for what I had prior to losing a site/directory I had a few years ago. If I get it back to what it was, if ever, I'll make the blog the domain and list the toy store instead.


Warm wishes

Until next time...

Medical (Medicinal) Marijuana Defense Trial

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...

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...

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...