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

 

 

 

 

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

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.

suicide+hotline

6075d-1508520201278
Text HOME to 741741 from anywhere in the USA, anytime, about any type of crisis.

 

Sunshine Blogger Award

 

I would like to thank Wendi over at SimplyChronicallyIll for nominating me for the Sunshine Blogger Award.  Wendi shares her story of living simply with multiple chronic illness. Her words are honest, and I think you will be blessed by her thoughts so go check her out.

HERE’S HOW IT WORKS…

THE RULES

1.) Thank the blogger(s) who nominated you and link back to their blog

2.) Answer the 11 questions the blogger asked you

3.) Nominate 11 new blogs to receive this award, and write them 11 new questions

4.) List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.

 

Questions for me:

  1. What is your favorite thing about blogging awards?    I love reading the answers and getting to know other people around the world.  The questions take us a little deeper into each other’s lives allowing us to see that we have many things in common.  Having this community to interact with about our chronic pain/illness helps removes the feelings of isolation.
  2. If you were a sports car, which one would you want to be and why?  It would have to be a Ford Mustang.  The family business was an auto repair shop. My two older brothers had hot rods, and I was raised by them to love Fords.  I was more of a tomboy than a girlie-girl, and I remember it as a time to spend time with my brother.  I usually annoyed him to death but, secretly, I think he liked it that I was interested.
  3. If you could only eat one color of food for a week, what color would it be? My first thought is green.  There is so many good for you foods that are green: Brussel sprouts, broccoli, butter beans (I’m a southern girl), asparagus, peas, and more than I cannot think of right now.
  4. What is your favorite movie line and why? From Hope Floats:  “Childhood is what you spend the rest of your life trying to overcome. That’s what momma always says. She says that beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up. And it will, too…”  I saw this movie for the first time during a new beginning in my life and the movie just resonated with me.  This line always stuck with me.  It is one of my favorite movies.
  5. If you had to leave your house and take only 10 things with you (excluding all living beings) what would they be? Cell phone to call people, pen and paper to write with, a box books to read, computer to keep up with the world, my favorite sweater that is a deep wine/cherry (somehow it goes with everything), my medicines, my cane. headphones (cannot live without music), my datebook (otherwise I won’t have a clue what I am supposed to be doing), and sun glasses to shade my eyes because I have sensitive eyes and have migraines easily.
  6. Describe yourself in two words. God’s Beloved.
  7. What is one sporting activity that you enjoy watching? Most anything racing or motorcross related. I grew up with brothers and they were big into fast cars. Now hubby and I are in to motorcross.  He rides, I watch or video whenever I am physically able to do it.
  8.  If you could give one piece of advice for all the world to hear what would it be? Do not be afraid to be vulnerable. There are so many misunderstandings because people do not say what they really feel.  Insecurities hold people back from allowing others to truly know them. Since everyone has had varied life experience, we have a completely unique perception of the world than the next person.  Hoping that the other person will figure out what you are thinking is setting yourself up for communication failure.  
  9. What is your favorite encouraging quote?  “You can’t fly if you don’t jump.” unknown. I am always too scared to jump. I am trying to overcome that. 
  10.  If you had to learn a made up language, which one would you choose and why? Pig Latin because it sounds cool.
  11.  If you were to learn to play an instrument which one would you choose?A very long time ago, I played clarinet and the piano.  If I had my piano, I would still play it. If I had time, I’d love to be able to play the guitar.

My  Questions:

  1. When was the last time you changed your opinion/belief about something major?
  2. If you could make one rule that everyone had to follow, what rule would you make?
  3. What is one of your favorite smells?
  4. What song or artist do you like but rarely admit to liking?
  5. What risks are worth taking?
  6. What small gesture from a stranger made a big impact on you?
  7. What makes a good life?
  8. What’s the title of the current chapter of your life?
  9. If you could make a 20 second phone call to yourself at any point in your life present or future, when would you call and what would you say?
  10. What are some of your personal “rules” that you never break?
  11. If you could have a never-ending candle that smelled like anything you wanted, what fragrance would you want it to be?

My Nominees:

Discovering Your Happiness

Reclaiming Hope

Looking For the Light

My Lil Place

My Loud BiPolar Whispers

Pointless Overthinking

Mom Life with Chiari

The Depression Free Garden

Simply Chronically Ill

Chronic Pain Supergirl

As always, I would love to hear everyone’s answers, but I understand if you are unable to complete it.

Thanks to Simply Chronically Ill for the nomination.

I hope everyone is having a wonderful Sunday.

Much Love and Many Prayer,

Cindy

The To Do List

Through tears after dinner last night, I told my hubby that I finished everything on my to-do list. I was so happy that I had finally done that one more time.

It had been years since I crossed off everything on my daily list of things to get done. Chronic pain had changed every aspect of my life.

Once upon a time, completing daily tasks was something I was proud of doing every day. They were always long lists, and I believed that meant I was having a successful day, that I was a successful person who was not lazy or unorganized.

Whether it was at work or home, it suggested the day had gone smoothly, and I could be proud. The checked boxes indicated I had been prepared for every snag or dealt with them efficiently.

But tonight, I am in severe pain. I was so excited that I placed an “X” in every box, but I was crying because of the physical pain I was enduring from being so “successful.”

Then I realized what I was doing to myself. I was judging myself by the number of checked off boxes on my notepad.

I have worked very hard to change my perspective about living with chronic pain and to live as positively as I can regardless of my situation. I have been diligent in finding what isn’t working and changing it, but this one snuck in on me.

Why do we push ourselves so hard mentally or physically past the breaking point when while living with chronic pain?

So many dreams die one by one when you are diagnosed with a chronic illness. Yesterday was almost as if I was trying to prove to myself I could still do it. Well, I did do it, and it isn’t pretty. I don’t think it was worth it.

Don’t do this to yourself either. You only have one body. That family member that thinks you are lazy or the friend that just thinks you are unorganized isn’t going to donate you their body when yours gives out because you were judging yourself by what they thought of you.

I need to stop comparing myself to others and realize this is my life, not theirs and I’m the only one that needs to be happy about it. I need to decide on new ways to consider myself successful, and I need to nurture those ideas.

Today, I have put aside “the to do list.” I’m going to rest and recharge my batteries. Hopefully, I can start again tomorrow.

Be kind to your bodies out there.

Much Love and Many Prayers

Cindy

Help Support My Misson

Update on the new chronic pain support group I am starting:  I have spoken to a local mental health agency in my county about using their space for our meetings.  They seem to be very interested in the idea of a place they can send their patients who are seeing them for depression and anxiety from either chronic illness or chronic pain.  I think they were just as excited as I am. I am hoping this community agency will be a perfect match for our support group. Keep your fingers crossed.  

 

Cloud Nine

My head is still in the clouds from the plane ride. I feel completely peaceful tonight. I am exhausted and in major pain but it is worth every wince and groan.

Being validated, knowing someone else “gets it” is empowering. We know we can leave our guard down which makes us more relaxed. And that helps us deal with the pain in our bodies in a more loving way.

I believe support groups or seeing a mental health professional can really help chronic pain patients deal with the constant unrelenting pain and improve their quality of life. It’s all about taking back control, reducing isolation, and keeping your independence.

These past few years you have probably felt like a runaway train recklessly going through the motions to get through the day.  So many people with chronic pain do not have a person that can help support their physical and emotional needs.  A support group can do that.

When you attend a support group you will find others with different pain issues but with almost the exact emotional journeys.

Knowing that others are just like you in that way is validating. Tonight I feel very understood, and I am grateful.

I took a couple of pics with my phone coming in to the airport in Chicago. I am not a professional photographer. It’s just cell phone shots. 😎

This is me. Just happy to be alive and fully partipating in my life!

I hope this helps someone tonight. Maybe you might start a support group of your own. If you would like more information, please contact me directly at validatingchronicpain@gmail.com or through my contact page with the button above in the header.

Please forgive any errors. I am doing this on the fly on my telephone.

Much Love and Many Prayers,

Cindy

The Mystery Blogger Award

The-Mystery-Blogger-Award-2A big thank you to Tasha over at Pain Warrior Code for the nomination. Her message is full of hope, especially for our hard days with chronic pain, but her message is universal. Her Pain Warrior Code can be applied to any type of pain whether emotional or physical. She has a passion for encouraging other chronic pain warriors to keep their eye on the prize.

What is Mystery Blogger Award?
“This is an award for amazing bloggers with indigenous posts. Their blog not only captivates; it inspires and motivates. They are one of the best out there, and they deserve every recognition they get. This award is also for bloggers who find fun and inspiration in blogging and they do it with so much love and passion.” – Okoto Enigma

Rules

  • Thank whoever nominated you and include link to their blog
  • Tell your readers 3 things about yourself
  • Nominate 10-20 bloggers you feel deserve the award
  • Answer the questions from the person who nominated you
  • Ask your nominees 5 questions of your choice with one weird or funny one
  • Notify your nominees by commenting on their blog

3 Things About Me:

  1. I love to write with pen and paper instead of typing on a keyboard.  There is just something about the flow of ink on the paper. My thoughts are fluid when I write that way.
  2. I know all the words to each song on the orginal Grease soundtrack.
  3. I always have Charms suckers in my pocketbook.  I love them because they have chewing gum in the middle.

I nominate:

Nan – The Depression Free Garden

Positively Alyssa – Fight MS Daily

Simply Wendi – Simply Chronically Ill

and anyone else that wants to participate.

My Answers:

1) What made you want to start blogging?

Honestly, finding out that many chronic pain patients are commiting suicide because their pain is not being treated properly. I needed something I could do from home and blogging made sense to me.

I prayed for years for God to give me a passion for something, something I couldn’t live without doing.  I did not know that he would bring it to fruition through my own struggles with living with chronic pain.    

2) As this award is about blogs that inspire and motivates – do you as a nominee have a mantra, proverb or saying that you live by? 

I have the words “Still I rise.”  tattooed on my inner wrist to remind me I am strong.  I have survived. People think it is from Maya Angelo’s poem but it is inspired from Micah 7:8. The other part of the tattoo is “I am God’s beloved.”  It is a reminder to myself to live loved.

3) If you had to choose one meal that you had to eat everyday for a month (without any health consequences), what would it be?

Hands down, provolone cheeseburger on fresh baked bun with lettuce, mayo & mustard and deep fried french fries. Since you said MEAL, and I consider dessert part of dinner, I would end it with blueberry cheesecake.  

4) What is your favourite hobby/pass time?

Anybody that knows me would probably say talking, so I’ll go with that one.  

5) What’s the best / worst practical joke that you’ve played on someone or that was played on you?

I usually give myself away very quickly when I have played a practical joke. I am not very good at them because of that, so I do not have any vivid memories of any jokes I played on anyone.  

My Questions for Nominees:

  1. What’s the most surprising self-realization you’ve had?
  2. How do you hope you will change as a person in the future?
  3. What is the most annoying question that people ask you (if you have a chronic illness/pain, what is the most annoying question that people ask you about your illness/pain)?
  4. What is something that a ton of people are obsessed with but you just don’t get the point of and why?
  5. What’s the best thing that happened to you last week?

This was fun!  I can’t wait to hear everyone’s answers. Tasha, sorry this took me so long!

Much Love and Many Prayers,

Cindy

 

Good Medicine

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I wanted to check in with everyone. I was missing in action most of May, but it wasn’t on purpose. Mostly, physical issues prevented me from doing all the things I wanted to get accomplished. My migraines are always worse in the Spring and the Fall times of the year. We’ve also had a lot of rain on the east coast of North Carolina. That has contributed to more pain from my back and legs.

But today I feel fantastic. All my meds are working well, and there is sweet sunshine today to encourage me further!

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I did my stretches outside this morning in my backyard. We have a neighborhood pond close to us, and I am very thankful for the view. It is very relaxing early in the morning or late in the evening. Here in the south we already have crazy heat indexes. It’s no fun to be in the miserable heat in the middle of the day.

But I have something else that has been keeping me busy. I am trying to start a support group in my area and online. I am flying to Chicago for a chronic pain support group training. I am so excited and scared! Hubby is going with me to help so I know I will be okay with his help.

I will be learning about how to start a support group specifically for chronic pain warriors to help each of us to not just muddle through life but to continue to get up each morning and find hope and a purpose.

That is coming up in the next couple of weeks so preparing for that and then recovering when I get home will take some time. I plan to blog some repeats for those that are just jumping on board.

Chronic pain has created some very rough times in my life, but it has created opportunities for me to grow stronger as a person in ways that I never dreamed I would be doing.

I am only taking my unplanned life circumstances and turning them into opportunities to help other people. And I think that is the best medicine in the world!

What’s your perspective on these thoughts?

Much love and many prayers,
Cindy

Photo Credit: Cindy @ChronicPainWithAHigherPerspective

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