Tuesday, June 23, 2015

THE VALLEY EXPERIENCE-WHEN THE PAIN IS SO BAD WHERE DO WE GO?

THE VALLEY EXPERIENCE-WHEN THE PAIN IS SO BAD WHERE DO WE GO?


'NUF SAID

http://www.intouch.org/listen/featured/the-believers-valley-experiences-part-2-radio


THANK YOU, CHARLES STANLEY,  FOR SHARING THIS WISDOM

This is a book I have read a couple times that really helped me to understand many questions I had about my life in pain. I hope it may help someone out there looking for the same understanding! I have it on my Kindle, but just ordered a hard copy today.




http://www.amazon.com/gp/product/1567691846?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

Thursday, June 18, 2015

Chronic Pain Sufferers - CDC Social Media Campaign Backfires


 Chronic Pain Sufferers - CDC Social Media Campaign Backfires

My main goal for this blog is to use my skills I've obtained over the last 23 years of working in occupational therapy, along with my experiences as a chronic pain survivor, to come along side of other survivors to encourage and educate with various "tools" to learn to live, as best we can, a new "normal" in this life of pain.

Living a life of chronic pain is extremely difficult on so many levels! With so much going on lately with the FDA, NIH and the CDC looking into how to prevent so many people from becoming addicted to narcotics and these policies overshadowing the treatment of many that are living with pain , leaving many feeling extremely concerned with where all this is going and how it will affect their daily lives of living with this horrific pain. All any of us want to do is be able to function as best we can and have somewhat of a life! And for many, the means having to take these medications that are in question. Medications, I can safely say, most of us DO NOT WANT TO HAVE TO TAKE! We would rather have our lives back! Nonetheless, these are the medications being scrutinized.

With that being said, I want to say I am not much for writing negatively about how we are perceived by the medical community, as well as the general public.  After going through a nightmare of trying to obtain help with my chronic pain, I have found exceptional physicians to be a part of my team to help keep me safe and as pain free as possible. For me, pain free as possible, is sadly 7-8/10, 24/7, after my medications. It took a very long time to get to that, as I will share below. But, this level of treatment is always in question with each and every doctor appointment I go to. I know it is necessary, but what bothers me is what is happening with all these studies, their outcomes and if we are going to be allowed to protected by our physicians with the political policies that are coming our way.  Yes, for many of us it comes down to our daily living and what helps us to function. For some of us that is a very low level of activity due to the pain we endure on a daily basis. We need to be aware of what is going on out there with the policy makers and have our voices be heard!

In addition to how we are treated by the medical community, is the way we are seen by the general public, including some of our family and friends.  Due to the lack of understanding towards many chronic pain survivors, the way we are treated can deeply affect us. We rely on our loved ones to encourage and uplift us in this journey. And sometimes it is not happening! This leave us feeling demeaned, dismissed and isolate. As well as many other emotions that affect many on various levels of "so what" for some, to being part of a cause for a deep depression for others.

When it come to the social media and the variety of ways things come across about chronic pain patients I am concerned about where they lead.  Especially when what they present impacts the overall public awareness! As many chronic pain survivors can testify this usually encompasses negative comments and attitudes toward chronic pain sufferers and the use of narcotics.

  It is, after all, a part of what we all deal with on some level, thus not something we can hide from. CDC Social Media Campaign Backfires
http://www.painnewsnetwork.org/stories/2015/5/15/cdc-social-media-campaign-backfires?rq=barby+ingle

This is not too long of an article! I liked this part:

"There are really two problems with prescription drugs. One is the problem of abuse. But the other problem is patients who have pain and have a legitimate medical need for these drugs and can't access them," said Bob Twillman, PhD, Executive Director of the American Academy of Pain Management.

"I think they (the CDC) know what the problems are, but for some reason they don't want to deal with the chronic pain problem. I've criticized them for calling the problem of prescription drug overdoses and prescription drug abuse an 'epidemic' and taking a much, much bigger problem like chronic pain and not saying anything about it.  Because to me, if 16,000 people a year dying from overdoses is an epidemic, then 100  million people with chronic pain must be a pandemic."

I hate the fact that so many families and friends have to go through such horrendous grieving due to losing loved ones because of addiction and death to narcotics. It is beyond heart wrenching! This has affected many t of us in this world to some degree. There is no arguing that this is a major issue of concern, as it should be!  It is extremely necessary that there are steps being taken to help those that are addicted to their medication, as well as things being put into place to help prevent it in the first place!  There is no arguing about any of that whatsoever! .

However, it is appalling that of the 100 million chronic pain sufferers in America,  (35 million living with moderate to severe pain), that the 2%  abusing their medications is overshadowing the fact that the other 98%  are out there suffering and require treatment! Treatment that they should not have to practically beg for, without being accused of being a drug seeker, faker or any other negative reaction when one asks for help!  The National Institute of Health states that 40-70%  are either under treated or not receiving proper treatment and "... the prevalence of chronic pain and the increasing use of opioids have created a “silent epidemic” of distress, disability, and danger to a large percentage of Americans." (NIH Study, January 2015, http://annals.org/article.aspx?articleid=2089371

These sufferers are overlooked in the media! No, that is not true, they are not overlooked, they are portrayed by the media, as well as the general public, as drug seekers, pill poppers, drug abusers, as well as other demeaning comments. Movies, such as "Cake" has done nothing but feed the fuel on a burning situation for this pandemic going on!  It is safe to say that those accusers have no idea whatsoever what the chronic pain sufferer deals with!  Nor have most ever really sat down with a sufferer and took the time to learn what it is like.  Have these accusers ever gone to any of the multiple appointments to various specialists, therapists, or any of the many place that sufferers have gone to to seek help? Do any of the accusers know how to read any of the objective findings from MRI's, CT Myelograms, and the variety of other tests sufferers endure to try and find out what is wrong so they can find a solution and get back to their life that has been shredded?

This lack of appropriate treatment and being under treated is a major concern! There are many stories out there that people have verbalized about trying to find help and the inappropriate treatment of healthcare workers. I for one could fill up pages of what I endured after two cervical and one lumbar spine surgeries due to multiple spine issues. This last two surgeries did not help all my issues and are considered failures by the surgeons.  In addition to those spine issues, the resulting nerve damage which led to Central Pain Syndrome, caused 8-9/10 pain, leaving me curled up in a ball, shaking, gasping for air and eventually vomiting! After the surgeon, who documented that "this patient will never be without pain," referred me to a pain clinic, I endured many episodes of what I would call verbal abuse. I was encouraged by my primary care physician to continue to go to this pain doctor because, "they would know how to best treat your pain." So I did as I was told. 

For months I endured multiple injections into my nerves and around them, (that had only achieved to cause more pain), multiple other visits to this pain doctor to assess the different medication trials (resulting in a couple visits to the ER for anaphalaxis and other allergic reactions to the medications trialed), a neurologist, a behavior specialist and even more physical therapy.  Being an introvert and the "perfect obedient patient" that did as I was told,  I just kept going along with whatever they wanted to try, hoping for relief with each treatment!  After 10 months of this, and continuing to live in moderate to severe pain, my husband encouraged me to ask for stronger pain medication. He begged, "If you don't do it for yourself, please do it for me. I can't continue to watch you go through this!"  So at my next visit I asked for help for relief.

I was hoping for some relief, but I was yelled at by the physician! Yes, yelled at!  I was told I could, "get on out of there if I expected perfection!" Yes, that did happen! And this was repeated three times by the time I left my appointment. I had experienced highly unprofessional treatment all along by not just the pain doctor, but the physician assistant, nurse,  medical assistant, as well as the behavioral therapist! This was at a pain clinic!  This was with documented proof of what was wrong with me! As a patient, I was crushed! I lost what hope I had left and felt alienated by those who were suppose to be a help to me. As a chronic pain sufferer,  I just wanted to die!  As a healthcare worker, I was appalled! As I continued on this journey of chronic pain I found out that this was not rare at all! Even now it infuriates me!  It is wrong! This should not be happening to anyone!

That was just a small part of my part journey. Most of the other health care providers I see are extremely compassionate and professional!  It took 15 months to finally hear, "Lets see what we can do to get you out of this pain." From the time of surgery, dealing with all the injections, PT, behavioral therapy and trialing multiple types of non-narcotic nerve pain medications at the pain clinic, going back to my PCP to ask for a referral to another doctor, seeing this other doctor multiple times for many more test and trials of yet more medications, being referred again to another specialist and finally one more referral to another specialist and more tests. AND (if I haven't totally lost you) after all this, it is said to me by an obviously ignorant person, "Yeah, I have a friend who was on pain meds! I know all about it! Those doctors just prescribe that stuff, people get addicted and they keep on prescribing it!  Their a bunch of pill poppers! PILL POPPERS!"

CAN YOU BELIEVE THAT?  Yes, I know you can! I am sure many of you have dealt with that. For that is how many in society react to those in chronic pain. I am learning to understand these people and be forgiving. I pray they may never really know what it is like, because I would not wish this life on anyone! We need to try to be forgiving and not be bitter. That does nothing to help the pain!

Whether an epidemic (the drug abusers) or pandemic (the 100 million chronic pain sufferers), both are horrific! It is a good thing more people are speaking up in social media for all of us in pain! The public needs to be aware of those suffering and learn that the majority are not abusing their medications! It would be awesome if the overall opinion of the public would change to be supporting and understanding to the chronic pain sufferers they come across in their life. A kind word goes a long way!

It is my hope the current work being done by the National Institute Health from the studies they have found bring forth solutions for all chronic pain sufferers! Those abusing their medications and those not abusing their medication. An understanding, as well as tolerance, for the majority accused of being "druggies" due to living in chronic pain every single day of their lives and needing these medications to be functional! Many would rather not have to take these medications. Many would love to get back to their life before pain! Many had much loved careers and grieve that loss!  Not to mention the financial aspects of it all! There are so many losses chronic pain sufferers deal with.
 


We need to be aware of what is going on out there with the policy makers and have our voices be heard!











Thursday, June 11, 2015

THE STAGES OF GRIEF - ACCEPTANCE (PART THREE)



THE STAGES OF GRIEF - ACCEPTANCE (PART THREE)

Ac*cept*ance (noun)

Willing to believe- willingness to believe that something is true

Coming to terms with something - the realization of a fact or truth and the process of coming to terms with it

Toleration - the toleration of something without protest
Encarta Dictionary

It would be such a wonderful thing if we could just bypass all the stages of grief we have been discussing! But, unfortunately that is just not a part of how we were created. Yes, it would be nice to just jump right to the acceptance part! Who in their right mind wants to deal with all the denial, anger, bargaining, and depression!

I believe that each stage teaches us many lessons along the way! We gain strengths and insights into who we really are, where we are going, what is really important in life and who is really willing to walk this road with us! I feel looking at the relationship we have with ourselves, as well as others is a major part of all this.

Finding acceptance of living in chronic pain isn’t the same as saying it is okay. (Nor are all the negative things that have happened to us because of it!) It is being willing to come to terms and tolerate it as best we can. It is recognizing that this new “normal” is our reality. Acceptance comes little by little as we accumulate “tools” over a period of time, using them to make adjustments to be as functional as we can physically, emotionally, socially and financially.

Some try to continue life as lived previously, pushing through the pain to do things, actually causing more pain, and at times causing more damage to ourselves. Fighting our inabilities can leave us feeling hopeless and helpless. Instead of denying our feelings, becoming angry and depressed we can implement many strategies to help ourselves.

For self care we can use adaptive equipment (reachers, long handled sponges, shoehorns, shower or bath chairs, shower sprayers, etc.), simplifying tasks, asking for help as needed, taking breaks before working to the point of exhaustion and increasing pain as well as other “tools” that are helpful.  There are many adaptive devices for many activities around the house. If you have questions for what might help you, please leave a comment below and I will suggest what may help you!

We can all try to be as healthy as we can. We can research health care providers to be sure we are getting all the help we can with our pain.  We can eat right. We can move and exercise as able and allowed by our physician. And keeping on top of new health information that may help us can be useful.

We can make new relationships with other chronic pain survivors that can be encouraging and up lifting to us, as well as be encouraging and uplifting to others. It is helpful to have others dealing with the same issues as we are to feel understood. This is very helpful with the feelings of isolation many of us feel. We can reconnect with friends and relatives by calling, sending cards, visits as able and other social activities as physically able.

Slowly but surely, incorporating these activities you are able to do can help you feel some control over your life.

As far as financially, this is very difficult to address due to the various abilities to work. Some are able to collect workman’s’ compensation, disability insurance or Social Security Disability. In any case, utilize what is available to you. This is very tough when we are used to living at a certain level of income and becoming disabled leaves many of us financially challenged.  If you are finding yourself having difficulties there are places that offer free financial counseling out there. It can really help to have some information when there are a lot of financial commitments in everyone's lives.
You can try calling your church for financial counseling (it is often free). Or call, 211 which is the number for the Red Cross First Call for Help and they provide resources for needs you may have.

Seek ways to process what will work to make things better for you.  Be sure, you will find small moments of peace, joy and hope with your losses here and there that will grow. You will eventually adjust from your old self of the way life used to be to moving on to a new "normal."  You will still feel sadness, anger, denial and depression off and on, but you will have the tools to use to push through it. If not, ask for help! There’s a lot of it out here! You do not have to go down this road alone! There are many support groups on line. You might have to look around a bit for one that suits you. 
Down the road you will find others needing you to help them find their new “normal!" We need to lend a hand to each other in this journey! We do not have to let it overtake us!

Tuesday, June 9, 2015

THE STAGES OF GRIEF - ACCEPTANCE (PART TWO)

THE STAGES OF GRIEF - ACCEPTANCE (PART TWO)

ACCEPTANCE (PART TWO)
As I have been trying to figure out what to say about this acceptance stuff, I have been seriously struggling to get the words written. Writing my previous blogs covering these stages of grief I have been reliving many of the emotions and have found that this grief stuff still has its grip on me. To be perfectly transparent and honest, processing it all for this blog has caused me to relive some of the emotions of the things I have been writing about. I have been struggling with clawing my way out of this dark hole, slipping and sliding backwards, without getting very far to fully find this so called “acceptance.”

My questions to myself is, “Exactly HOW can one find ACCEPTANCE with living in 24/7, moderate to severe pain that causes so many losses! What exactly does one have to do to get to that?!?!”
In a previous post I shared about dealing with this horrendous 24/7, moderate to severe chronic pain the past five years leaving me feeling lost, wandering around an endless "chronic pain maze" that made me feel claustrophobic in my own body, causing panic attacks leaving me gulping for air, frantically wanting out of my body! Not only is it the horrendous pain, it is all the “stuff” one has to go through living with it!

With all the struggles of wanting to push forward, I have been constantly looking back at what my life once was, gripping tightly to my college degree I worked so hard to obtain in order to work in a much loved career! Not only have these losses that taken away my feeling of having a purpose and significance in my life, but the social, relational and many other areas of my life have been shredded to pieces! I have tried repeatedly to take these shredded pieces of my life and rebuild a new “normal”. But as you all know, it feels like an endless struggle! Seriously, it is just too much work and effort when the pain sucks all the energy you have to get done, or even care about, the so called “simple” things of life. This new "normal" isn't what any of us want!

I am not going to tell anyone what to do! Especially someone still in the anger stage! I so remember being told to, "Look at all your blessings!" "At least you aren't dying!" "It could be worse!" etc. We have all heard these statements! THAT DOES NOT HELP ONE BIT! And it seriously makes one feel truly misunderstood! Although, to be fair, some people are seriously trying to help in their own way.  We have a hard enough time dealing with all this, how can we expect others to know how to help us, what to say, etc.?

But for me, I have to keep moving forward! I need to let go of this grieving stuff and re-purpose what I have and find a new “normal” for my life I can deal with. Something that gives me joy! A sense of purpose! It is a choice. If you want to move forward, please consider making that choice yourself! It doesn’t come easy, but it will be much better for us, as well as our loved ones! Just remember, do not demean yourself for the grieving! And know that it takes a lot of time.

I am five years into this and one thing I have learned is it takes a lot of time to go through all the stages of loss. And it is normal to cycle through them over again. Everyone is different! Do have a focus though! But like I just said; DO NOT DEMEAN OR BERATE yourself for not achieving it sooner than later. We cannot skip the grieving. It is a part of being human.

But, just try and implement one thing into your life if nothing else! Make a choice to try and deal with all this without slashing our own heart, or the hearts of those around us, with bitterness and anger.  It is okay to feel those feelings, it is human, but to harm yourself, or to harm those around us, physically or emotional is not appropriate!  If you are feeling those feelings or having an issue with that please ask someone for help! A friend, pastor, counselor or seek a Pain Support Group.


WE NEED TO MAKE GOOD CHOOSES! THERE IS NO OTHER WAY DEAR FRIENDS!

I honestly feel that each of us has to write down what you want to focus on! Start with what you already know is helping you! Then look at what you want! But we HAVE to focus on our blessings and goals. No matter what stage you are in, making this choice to implement something, anything, just a little bit, is helpful! Otherwise we will never be able to move forward out of that dark tunnel, the maze of all the losses we’ve been dealing with! It will get a grip on your soul and will suck you in!
For me there are a few things I do know for sure lift me up! I know I have to focus on these things for I have been sucked into a deep depression!

I DO KNOW that my faith in God has held me up during times I just did not want to go on! The peace during times I should have had zero and the presence of His spirit overwhelming me with all these feelings are understood by only those that have that faith.

I DO KNOW for sure that I am NOT ALONE in this! Neither is any of you reading this! That I do know without a doubt! If you are feeling alone, please find a support group so you can get the encouragement and support you so badly need! 

I DO KNOW that my support group I belong to is a place I can go to and I am 100% understood! I do know that every single person in that group knows EXACTLY what I am dealing with! (I will have to do a separate blog on the benefits of a support group for I could go on about all the positives!)

I DO KNOW that the joyful feelings that have been trying to burst forth from deep inside my soul are real! Although they are still fleeting, they are surfacing! I will hold onto that and keep the faith that I will be joyous again! Not just on my face, but in my heart! (As many chronic pain sufferers know, we mask our feelings well!)

I DO KNOW I have to choose to keep looking at these things I can do to make this a better life for myself, as well as the loved ones in my life!

Fill in the blanks of what you know!
I DO KNOW
I DO KNOW
I DO KNOW
I DO KNOW
I DO KNOW
I DO KNOW
Feel free to share what you KNOW in the comments section!
More on this in my next post!
May you be surrounded by many blessings dear fellow chronic pain survivors! 

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Friday, June 5, 2015

OVERLOOKING THE 98% SUFFERING AND USING MED APPROPRIATELY!


OVERLOOKING THE 98% SUFFERING AND USING MED APPROPRIATELY!

The National Pain Report did a story on the June, 2015 TIME magazine’s cover story on pain killers, Time Magazine Releases Cover Story on Pain Killers.
Time Magazine Releases Cover Story on Pain Killers

As reported by National Pain Report, this TIME magazine "article doesn’t speak much to the issue of chronic pain, for which many prescriptions are written, other than to say 100-million people suffer from it and a quarter of them says it is severe enough to limit their quality of life, according to the Institutes of Medicine."

Over the past 5 years, I have been learning to live with moderate to severe, 24/7 chronic pain caused by multiple cervical and lumbar spine diseases, leading to multiple spine surgeries, resulting in spinal nerve damage and a neurological disease called Central Pain Syndrome

During my time of learning to live a new “normal” with the numerous effects chronic pain brings to a person’s life, I have become aware that there is a whole world out there I knew nothing about, one of which appalls me. Part of it is the awareness of how chronic pain sufferers are portrayed in the media, and the other is the overall opinion of the general public, including some health professionals towards chronic pains sufferers. Of late, the media has been doing a lot of covering the abuse of prescribed narcotics leading to the use of heroin. These losses are a tremendously serious concern; there is absolutely no arguing the reality of this horrendous issue, it leaves many grieving in its wake and requires a solution. One that will help all, not harm.

We all need to be aware that among this epidemic of opioid abuse is a pandemic of those suffering with chronic pain that appears to be largely overlooked by the media. To get an idea of the vast amount of people affected by chronic pain in the United States we need to look at the statistics in the report released February, 2015 by the National Institutes of Health Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain. This is the link, http://annals.org/article.aspx?articleid=2089371

Among the many subjects covered in this report, it states that there are 100 million chronic pain sufferers in America. Of those, 25 million suffer with moderate to severe chronic pain.  It also states that 2% of those that are prescribed opioids, abuse them. We cannot overlook that at all, that seriously needs to be dealt with.  

There are 98% of chronic pain sufferers that are using their prescribed medications APPROPRIATELY! Medications, which by the way, that are legally prescribed by physicians for diseases that cause chronic pain and are required to enable sufferers to endure living with this horrific disease, giving them a means to attempt to live somewhat of a functional life…a life shredded to pieces by all the losses chronic pain brings!