Words For Healing

I have missed writing, but when I am doing advocacy work, I seem to fall in head first and get lost. It seems like everything is urgent because it takes so long to finally see the results of your hard work.  You can hardly tell that you are making any difference. It really is hard work to go in with credible information.  I applaud anyone that has made the trip to visit their elected officials and given them an education on what the chronic pain community is going through these days.

I have taken to twitter encouraging everyone in the chronic pain community to get their voices heard by reaching out to their legislators.  I had a few people that said they were too scared to speak out because of retribution, ie: they will lose access to the small amount of medicine that they need to be able to function.

I completely understand the fear in speaking out. I feel the same. Knowing that people are afraid to speak out compels me to be the voice for them also.  For someone that has no other legal and affordable options than their current opioid medications, it must be agonizing everyday counting their pills and worrying if this is the last bottle before the pain is unbearable. That breaks my heart.

If you decide to go to your representative, here’s a link to find out who you should contact and how to reach them.  If you want more information about advocating for the chronic pain community, contact me. There is plenty that can be done from home.

I also began a writing group last week.  There are about 8 of us and we are made up of 8 different perspectives, so I’m loving that.  So, far it has been mostly timed free flowing writing. I’m excited to see what the future groups will hold.  We are all looking for different things from the group.

I am thankful for the gift of writing.  Being about to express myself through words is healing.  I know most of you that are reading are writers also.  Do you stick to one style of writing or do you use different mediums – free write, poetry, prose, spiritual, song lyrics, blog post- to convey your feelings?

I believe that what every you write, whether it’s a tweet or a post, you should edify others. Honor them.  I am appauld by the comments I read on twitter and facebook; the unnecessary meanness in the words people type anonymously behind their computer screen. I do not understand why people are so mean.

But let’s be different.  Today, make a positive tweet about your life with your chronic illness.  Publish a uplifting post about another’s triumph over struggle.  Just put some love out there to combat the hate.

Much Love & Many Prayers,

Cindy

 

 

 

 

He Cares For You

Cast all your anxiety on Him because He cares for you. 1 Peter 5:7

I memorized this verse a very long time ago when I was teaching a Sunday school class for 1st graders. It’s a simple verse that even the kids could memorize.

How can a Bible verse help you in today’s world? If your hope is in Him, you know there will be a glorious day when all the pain ends. That’s literally what keeps me going every morning when I wake up.

I do not believe meditating on a Bible verse relieves chronic pain.

Every morning I’m usually in the same amount of pain when I wake up. It’s not easy to keep going, but my hope is not from this world. Knowing there will be an end to the pain gives me the hope I need to continue my life.

It is like a birth. You know at the end of the pain there will be a reward of a baby when it is over.

I choose to look at my salvation in that way also. Life is hard with physical and emotional pain. This world is not our world. We will feel pain of all kinds, but there is a reward much greater than we can imagine.

This verse helps me trust in God giving me peace so that I can focus on what is important, helping others, instead of worrying.

Do you have a Bible verse that carries you through hard times? Please share. It could encourage someone else. You never know the impact you can make by reaching out to help others.

Much Love and Many Prayers,

Cindy

A Drop in the Bucket

I met with someone from my House of Representative’s office yesterday afternoon about how chronic pain affects our lives.

I think it went well. I presented the information in four parts: life with chronic pain after the CDC recommendations, addiction, chronic pain, and suicide, and legislative solutions. He seemed to listen and wrote a few things down.

I have done what I can by having this meeting. What this office does with the information is up to them. I don’t know if I made a difference or not, but I hope that they will remember our meeting when any legislation involving pain and pain research comes up.

I think everyone should do this kind of thing at least once even though it’s not easy to do for someone with a chronic illness. It took me many emails and three months to have the time to put together a notebook of information to leave with their office.

I am not naive thinking this one chat with my Congressman’s office will make an immediate difference. We have an unbelievably tangled mess with the opioids, chronic pain, and why people become addicted. To fix these colliding emergencies will not be easy.

I “put my drop in the bucket,” so to speak. Other people need to do the same, or the bucket will never be filled with individual drops that make it overflow showing a need for action by our government to protect people with pain.

We need to be brave by speaking out, especially about the need for expedited pain research. Everyone might as well get comfortable with the turning tide on opioids. It is not going away.

If anyone wants ideas or information about how to speak to your congressman, please message me. I will be glad to help you make a difference in the chronic pain community.

Much Love and Many Prayers,
Cindy

Photo Credit: jomar-271602-unsplash capital hill

Beautiful People

“The most beautiful people are those who have known defeat, known suffering, known struggle, known loss, and have still found their way out of the depths.  These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.  Beautiful people do not just happen.”      ——Elisabeth Kubler-Ross

We cannot control the things that happen to us, but we can grow through the pain when bad things happen.  There is a purpose, but you cannot see it yet.  He will bring good out of the most difficult situations.

The struggle up the mountain is difficult and challenging, but at the top is a view that is unimaginable.  Keep fighting the fight and win the race.

Overcoming struggles is what make us strong. We weren’t born brave. We develop it through trials, and sometimes those trials seem so unfair.  I always try to remember this is not the world that God intended for us.

Rest in knowing you are being transformed. Every defeat that brought you down, the suffering that made you feel weak, the struggles to get through each day, and every loss that broke your heart will be used for good.

Who can you reach out to today with compassion and help them on their journey and bring beauty from your pain by helping others with your own experiences?

I hope you will do that this week because everyone needs to hear the encouraging, “You got this.”

“You never know how strong you are until being strong is your only choice.”
—-Bob Marley

Much Love & Many Prayers,

Cindy

The Perspective of Chronic Illness

I wanted to share this quote I found today that might help someone with their daily struggles with chronic illness.

“I choose joy… I will invite my God to be the God of circumstance. I will refuse the temptation to be cynical…the tool of the lazy thinker. I will refuse to see people as anything less than human beings, created by God. I will refuse to see any problem as anything less than an opportunity to see God.” ——Max Lucado, Upwords

Circumstance.

Perspective.

Two significant words in this world today for everyone, not just people with chronic pain.

We cannot be ruled by our circumstances. Our lives are easier to live when we look for the beauty in our broken parts and in the world and when we accept where we are at in that point in time.

However, our perspectives do rule our lives, and it is something we can work on changing.

Some people get angry when the talk is about “controlling pain with your mind.” No, I do not believe you can control your pain with your mind. But I do believe the journey can be lighter with a change in our mindset.

Today, find one thing that is good in your life and praise Him for it.

Much Love and Many Prayers,

Cindy

Goodbye Hurricane Florence

I have been sitting at my desk just staring.  I am exhausted, but I’m still trying to keep going.  It has been a little over one week since I began preparing for Hurricane Florence to hit us. 

The storm nailed our area.  Went right over us. We are ok, thank God, but so many other lives have been completely devastated.

I cannot imagine the pain that people all around me are in today. I am really sad today even though we have been spared the worst.  I’m sad for what the people with pain are going through trying to survive if they lost their homes, their medicines, or other medical devices. 

I know that BCBSNC has a healthline for it’s members in North Carolina 1-877-477-2424.

There is also free for this area MDs live through Teladoc 1-855-756-8708  & MDLive 1-888-959-9516 .

Also, call Magellen for national crisis line for help in this area 1-800-327-7451

If anyone wants to volunteer, North Carolina Organizations Active in Disaster

Like everyone else, I pushed my body way past the breaking point, and then some, to do what we had to do.  I wanted to keep mom comfortable while power was out. Being 83 years old, I was more concerned about her with the heat than anything else.

IMG_0003

We cooked some really great food on the grill during the storm.  I’m sure I gained 15 pounds. Hot eggs with sausage and english muffins each morning is not bad.  This picture was during the calm after the storm.  We didn’t take the time to take pictures of the other meals but believe me, we ate good. So, thankful.

 

We are so blessed with only water damage from the roof leaking, so that makes me feel guilty for even thinking about feeling bad at this moment while looking out the window at the perfectly Carolina blue sky.

A couple of my friends bailed and can’t get back.  One friend is stuck with only 5 gallons of gas a neighbor graciously gave them because someone siphoned my friend’s gas out of their truck. Another good friend’s daughter lost everything of hers and her three children.

On a happier note, we have some really great neighbors across the street that stood in line for a long time to go in groups of ten at a time into the grocery store to get food for all of us.

At the same time they were there, we were also able to get out on one road to a small town with a small Walmart.  The shelves were empty, but they had water. While the store was extremely packed and busy, everyone was being polite and helpful even though we were all worried about getting back to our homes because of the continuing down pour and the fact that the flood waters were rising fast.

When the worst of the storm was over for us, we were able to help other friends out with gas, water, and food.  I have seen first hand how a disaster brings out the best in people, but I would like to catch the thief that stole gas from my friend!

A note about the support group and advocacy work: 

I sent a proposal to a new church about using their facilities for our meetings.  The storm will likely slow down the progress of it being approved.  I will just need to have patience.

Even before the hurricane, the physical pain put me in bed many times during the day leaving me unable to get things completed. 

It is very hard to get anything started, much less finished because I must stop in the middle of something because my body starts saying “no more!”  My mind won’t stop thinking about all the things I am trying to accomplish while I am laying there staring at the ceiling. 

I ordered a mobile desk that I thought would slide under the bed. I was hoping to continue working on the computer with the tilted desk slid under, but it did not work.  It wasn’t long enough to put the computer right in front of me. I thought I had found a solution to laying flat and working on the computer. I will figure it out, but it is frustrating to lay in bed with ideas of things that need to be accomplished.

Before the hurricane hit, I had an appointment with this area’s director for my Congressman to discuss the future of people with chronic pain.  Of course, Hurricane Florence changed that, too.  It will take time before this can be followed up on because his first priority right now is the victims of Hurricane Florence.

Someone recently told me it’s ALL baby steps. That’s what life is.  It is short-stride baby steps every step of the way. With this storm, the people in North Carolina and South Carolina will become strong again.  We will just do it with baby steps. #NorthCarolinaStrong

Much Love and Many Prayers,

Cindy

You Are Strong

Strong quote

Wow, I really have felt this quote the past few weeks.  Every day I wake up living with chronic pain, I have to find my strength to get back up and do it all over again.  Without a focus, living this way causes depression in me, so I have been putting all my attention on starting the support group and getting my office put back together. This has created less time for the blog.  I may be posting less, but I am still here.

I wanted to post this for those that just keep moving no matter what, keep putting one foot in front of the other, just keep going, regardless of their circumstances.  You are strong fighters working through hard, painful things every day. I know what you are going through every day.  You aren’t alone.  Just keep moving.

Move Lyrics by TobyMac

Another heartbreak day
Feels like you’re miles away
Don’t even need no shade
When your sun don’t shine, shine
Too many passin’ dreams
Roll by like limousines
It’s hard to keep believin’
When they pass you by and by
I know your heart been broke again
I know your prayers ain’t been answered yet
I know you’re feeling like you got nothing left
Well, lift your head, it ain’t over yet, ain’t over yet so
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Echoin’ inside your head
Are the words that your sweet momma said
“Shoot for the moon, my dear”
So you took aim out of this atmosphere
Between high stakes and pump fakes
You’re feelin’ like you can’t buy a break
I can hold your hand, but I can’t turn your eyes to freedom
I know your heart been broke again
I know your prayers ain’t been answered yet
I know you’re feeling like you got nothing left
Well, lift your head, it ain’t over yet, ain’t over yet so
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Hold on, hold on
Lord ain’t finished yet
Hold on, hold on
He’ll get you through this
Hold on, hold on
These are the promises
I never will forget
I never will forget, so
Hold on, hold on
The Lord ain’t finished yet
Hold on, hold on
He’ll get you through this
Hold on, hold on
These are the promises
I never will forget
I never will forget
I know your heart been broke again
I know your prayers ain’t been answered yet
But it ain’t over yet, it ain’t over yet
So get up and move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Lift up your head now, keep walkin’ soldier keep movin’ on
Lift up your head now keep walkin’ until the mornin’ comes
Keep believin’ keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, it ain’t over yet
Songwriters: Bryan Christopher Fowler / Christopher E Stevens / Toby Mc Keehan
Move (Keep Walkin’) lyrics © Capitol Christian Music Group
Much Love and Many Prayers,
Cindy

Bouncing Back

I am starting to become discouraged because of my limited abilities lately. I tell myself that I am not a burden, but sometimes I do not believe it. Even though it feels like it will never go away, I must remember that this level of pain is not going to be forever. But sometimes when you are in severe pain, that is all you can see and feel and taste, so it can be hard to change your perspective to a healthy one.

I will have a break in the severe pain eventually. I know this. I have begun to notice the rhythms of my pain. I’m learning to go with it instead of fighting every step. I may not be able to change that I am in pain, but suffering is optional.

After all the hoopla in the last post about the opioid symposium last week, I ended up not going to the event. I admit that I was disappointed that I would not be able to make a connection with my state representative, but my mom had a medical event. She is 83, and I am her caretaker. She is self-sufficient usually, but I did not want to leave her until I was sure that it was only a virus and nothing serious.

As soon as I have the time, I will request a visit with my state government officials to discuss how chronic pain affects every aspect of our lives and how their decisions will impact the chronic pain community.

I am not advocating for opioids around the clock for everyone. I want people to understand the reason there is such a backlash from chronic pain patients about wanting their opioids is because the government agencies are leaving us with no alternatives that actually work to replace the pain relieving medicines they want to take away. I believe every person I have spoken to about this issue has said that they would never take another opioid IF they had something else that actually worked to relieve their pain.

We need more research on pain because everyone experiences it differently. How we perceive pain is a complex interaction between mind and body. There is nothing that happens in the individual that affects only the mind or only the body. This interaction involves the nervous system and other factors, which include: genetic, culture, modeling, thoughts, stress, history of abuse, and trauma.

Right now pain research is lacking, but many people are deep in the trenches working tirelessly on changing the fact that we do not have affordable, effective alternative to the opioid medicines. You can also help by telling your story to your elected officials and make them understand our difficult situation, so more money is allocated for studies about pain.

My mom is feeling much better today, and I am getting back into my regular rhythm which helps me to feel the best I can. I have been in extra pain because of the rainy, hot weeks we have been having. Also, I cannot seem to bounce back from the trip to Chicago for the chronic pain support group training.  I am pushing the first organized meeting in September. I am praying that I will be able to get everything done in that timeframe.

What positive things do you do when you get discouraged by not bouncing back as fast as you would like from a flare? Do you get impatient and push through the pain or do you realize you need to up the self-care?

Much Love and Many Prayers,
Cindy

Help My Mission

Opioid Symposium and Chronic Pain

There will be an Opioid Symposium on Monday night hosted by my Congressman. I just found out about it, and I’m scrambling to get facts and figures together so I have proof of the information I will be sharing with them if given the opportunity.

To begin to prepare, I called Congressman Rouzer’s office to find out how the chronic pain community will be represented in this setting and what they hope to accomplish.

I spoke with someone that explained that the symposium would have four panels as it relates to opioid stigma, treatment and resources, prevention and law enforcement. Each group represented will have 2-panel experts that will talk for 30 minutes each.

She said one panelist would be a doctor from our hospital, and he “knows chronic pain.”

I respectfully disagreed with her. Unless the doctor is a chronic pain warrior, he can shed no light on the physical and emotional life transitions that being in pain 24/7 brings.

Knowledge of the disease does not portray us. Having pain now and then does not describe us. He cannot begin to understand the suffering of chronic pain with chronic illnesses unless he has lived with it. He cannot represent us on this subject.

She explained to me that it is a complicated discussion and “unfortunately, everything could not be heard in the 2 hours allotted to the discussion,” and that is why no one that has pain is sharing our chronic pain perspective for us. That is unacceptable that we are not part of the equation of the future of opioids, and I intend to change that in the future symposiums.

She became silent when I asked her if Congressman’s Rouzer knew that people are losing the will to live and some lose the chronic pain battle to suicide because the suffering is too high because of the recent changes with opioids.

Her ultimate response was that I needed to have a meeting with his office. They want to hear my perspective which is a beginning.

What are your thoughts as a person of pain about the lack of representation at this event for people with chronic pain?

If you have been negatively affected by this lack of proper treatment or you know of someone that committed suicide because of the untreated physical pain they are in, please send me the information by my Contact Form so I can share with the people that will be shaping the chronic pain communities’ future. Alternatively, email to    validatingchronicpain@gmail.com

It does not matter if you live in my district or even in the United States. I want to hear your stories so that I can take this information as far as possible. I will keep it anonymous if requested.

Much Love and Many Prayers
Cindy

If you are struggling with living each day with chronic pain, if you wake up and you think to yourself, you cannot do it again…You can. Just keep going.

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