WHAT IS YOUR CAKE? | Barby Ingle

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WHAT IS YOUR CAKE?

Barby Ingle, President

Power of Pain Foundation

Author * Advocate * Motivational Speaker

480-882-1342 barbyingle@powerofpain.org

Movie Info:

http://cakemovie.net

https://twitter.com/CAKEtheMovie

https://www.facebook.com/cakemovie?ref=hl

What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addiction and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.

I saw the reality of what I have been living with since September 26, 2002 after an auto accident that led me to have no choice but to live with chronic pain. The main character, Claire shows the challenges of living with pain. Her symptoms matched many of the symptoms that I have dealt with on a daily basis. With not only showing the pain that sometimes makes you scream out. They also did a great job showing the loss of energy, balance -coordination issues, body temp regulation problems, depression & anger, dystonia, loss of appetite and vomiting, memory issues (reminders about reminders), and sleeping problems.

The movie also gives a great perspective on some of the treatment options that are available. Claire went through so much to get out of pain, but to no avail. She had to find ways to cope. They showed a wide variety from invasive surgery, medications (not just opioids) but other medication, and aqua therapy. They showed less invasive tools that can help with the coping of life with chronic pain; quiet/dark room or house, music therapy, and even turning to other substances like alcohol.

This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to have the character Claire use of her friend who committed suicide to help process the situation and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.

CAKE reminded me of a few important lessons. First, you can’t get better by working harder, you have to work smarter. We need to figure out how, where and on what we want to spend our energy pennies[i]. Second, people who don’t live in pain want to know how we do it. We typically say moment by moment, or I don’t know how I do it. We find a way. We negotiate with ourselves to do what must be done, what needs to be done. Does that mean we get to do all we want to be done? No. Does that make us less of a person? No. Thirdly, people in pain take less life for granted. The closet scene where she takes out only a little bit only to make a messy pile outside the closet. That was a step. That was an accomplishment in the daily life of a chronic pain patient. We are not asking for people to save us, we are working to save our energy pennies for what is important in life while still maintaining a life of whatever sort we can muster up.

WHAT IS YOUR CAKE? | Barby Ingle

Posted by twinklev

What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addition and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.

This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to use of her friend who committed suicide to help process and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.

Treating Pain That Won’t Go Away – Ithaca Times : Family And Health

Posted by twinklev

Posted: Thursday, December 4, 2014 12:03 pm

By Bill Chaisson

“There are two types of CRPS. Type 1, which accounts for 90 percent of documented cases, according to the Mayo Clinic, is marked by nerve pain when no nerve damage was involved in the initial injury. Type 2 is a more explicable development of regional pain after damage to the nerves.”

Abuse Deterrent Formulations (ADF) Allow People in Pain Better Access to the Medications They Need

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Abuse Deterrent Formulations (ADF) Allow People in Pain Better Access to the Medications They Need

August 19, 2014 at 8:08am

By Ken Taylor, Executive Director

Power of Pain Foundation

7/7/14

I have been an advocate for people in pain for eight years. I’m also a caregiver. Over the years, I have noticed a shift in the discussion of opioids; it seems less about patients who use them properly and more about the possibility of abuse. Opioids remain an important option in the treatment of chronic pain,but even patients who take medications as prescribed may feel their access to opioid analgesics restricted.

People in pain need safe, effective and accountable access to the proper medications. While providers, pharmaceutical companies and the Food and Drug Administration (FDA) continue to address abuse issues while ensuring appropriate access to opioid analgesics, there is more that can be done.

An important step is the creation of safer opioid analgesics.Referred to as Abuse Deterrent formulations (ADF), these opioids are developed and formulated to resist alteration and therefore deter abuse. The FDA considers the development of these products a high public health priority. And I agree.

Four Ways to Ensuring Proper Access to Care

Strong and lasting solutions to the opioid health crisis depend on state and national pain policy. I encourage the pain community to help ensure that access to care remains a high priority for the millions of patients who need and take medications responsibly. As advocates, we can:

Help define ADF technology. States need advocates to help define ADF based on FDA guidance.
Support and create legislation which allows non-ADF products from being substituted by pharmacists for ADF,without approval of the prescribing health professional. This legislation should ensure that unless the substituted opioid is also a non-ADF or consent is obtained from the prescribing health professional, a pharmacist would be prohibited from substituting another opioid for an ADF.
Advance patient safety. State legislation should place a high priority on ADF opioid market places where more ADF treatment options exist; and pharmaceutical companies should create these safer medications making them more readily available for pain patients.
Support the removal of barriers to non-opioid therapies as a first line of treatment for pain.

As a leader in the pain community, I work hard to provide access to care for people in pain. I encourage patients and caregivers to learn more about ADF and pain legislation. I hear from patients around the country almost daily who are having trouble filling prescriptions as written. ADF’s can be a step in the right direction. There is a balance between safe opioid use and abuse;but it will require individuals to speak up and take action.

To learn more, visit www.powerofpainfoundation.org

Health News – First Hospital to Implant Latest Spinal Cord Stimulator for Pain Relief

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30/10/2014 20:27:00

ALBANY, N.Y. — Albany Medical Center recently was the first hospital in the nation to implant the latest device in spinal cord stimulator technology to address chronic pain in backs and legs, among other areas.

Health News – First Hospital to Implant Latest Spinal Cord Stimulator for Pain Relief.

(Pressed Post)

Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain

Posted by twinklev

Released: 12-Aug-2014 10:00 AM EDT Source Newsroom: Johns Hopkins Medicine

via Expert Panel Concludes Neurostimulation Can Be Life-Changing Therapy for Chronic Pain.

An additional article can be found by News Medical:

Published on August 13, 2014 at 5:28 AM

Researchers determine safety and effectiveness of neurostimulation to treat chronic pain

Teaching the Nervous System to Forget Chronic Pain — NOVA Next | PBS

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Teaching the Nervous System to Forget Chronic Pain — NOVA Next | PBS. By Eleanor Nelsen on Wed, 13 Aug 2014

Study reveals brain mechanism behind chronic pain’s sapping of motivation | News Center | Stanford Medicine

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Study reveals brain mechanism behind chronic pain’s sapping of motivation | News Center | Stanford Medicine.

“Moreover, the difference didn’t disappear even when the scientists relieved the mice’s pain with analgesics. “They were in demonstrably less pain, but they were still less willing to work,” Malenka said.”

——

In my own opinion I have often wondered if when chronic constant nagging moment by moment pain is finally relieved if somewhere, somehow a “Learned Behavior” evolves quickly.

I offer an example from a personal perspective only. There have been a couple of times out of the dozen + Lumbar Sympathetic Nerve (Pain) Blocks that I have had that my pain decreased to the point that I rested my body on the sofa, elevated my legs, turned off social media other than an update, watched movies and did little else other than take myself to the restroom as needed. The fire that inflamed my right flesh decreased, regardless if it had remained above, swelling decreased drastically from a huge calf to a notable atrophied one. Yet I lay there.

I am absolutely aware that I may receive contradicting comments. That is okay! I am curious! I am an avid information seeker. Valid information. This is only a thought! And I am using myself instead of others who I have witnessed mirror the same amount of time. A day to 3 post block and others who continued to lounge for weeks. Regardless of whether or not the block actually helped. I am not including down time due to complications as in all of mine I have not experienced side affects other than upper groin discomfort which subsided after a day. That discomfort did however alter the ability to stand for a few hours after the procedure.

Can Chronic Pain become a Learned Behavior? I tend to believe it can after habits are formed. Chronic pain can become a habit. It is constant after all.

Your thoughts are welcome! ~T

Nobody Said It Was Easy..

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Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.

Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.

(I know some of you know)

Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.

My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …

Will!

Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…

I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!

A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..

Invisible diseases are even invisible among the very people they should be acknowledged from.

Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.

A time being can be minutes, hours, days, weeks.. there is no absolute!

Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.

I’m not in remission! I just understand those who are.

Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…

When you think you’ve had enough and you can’t go on…. Go On!

Don’t ask me how I do it..

Auto pilot!

Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…

Or how I take care of my grandson…

Don’t ask me about me..

Don’t even ask me how I lift my eyes..

Just know that I do..

~ #TVa

#StrongerThanPain

(But he leaned in and whispered it might be worth it)

I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)

Fight for Tomorrow

Posted by twinklev

Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!