Music is My Shorthand

Tonight, I am doing fairly well but there are some out there that are feeling like they just cannot keep going.

If that is you tonight, this video is for you.

If you are doing good, please stop one minute to pray for the people that cannot see their way at this moment.

Chronic pain often forces us to remain isolated and feeling alone. We have all had those moments that makes us fearful of our future.

So tonight, remember that you are not alone.

Much Love & Many Prayers,
Cindy

International Association for Suicide Prevention

Photo by Krystal Ng on Unsplash

Music is the shorthand of emotion.” – Leo Tolstoy quote from BrainyQuote.com

Beautiful New Beginnings

I pray that everyone had a blessed Christmas Season. As the holidays close and the year ends, I have been reflecting on the past twelve months.

A roller coaster at times, 2018 has been an interesting year for sure. Stress-wise, it has been a really hard year for many reasons, which contributes to extra pain, but I am still standing just like my tattoo says… Still I rise. I may be battle weary, but I am upright.

In spite of 2018 being stressful, I made some accomplishments that makes me proud.  I think more than anything, I learned to stop fighting the process.  Life is not simple.  In fact, it is pretty messy, but I found some beauty in the mess if I kept my focus on what really matters in life to me.

Some highlights of my year:

  • I wrote for my blog and Survivors Blog Here, and I wrote articles for The Mighty and Sivana East. I have been amazed at how far my words have gone in the world. I am humbled by the many people that have stopped for a moment to leave an encouraging word. 💚
  • I went to Chicago in June with hubby for a chronic pain support group leader training. He went through the training with me. It was an incredible opportunity for both of us. We learned things that will benefit each of us individually and our marriage. We are very thankful that Pain Connection, through the US Pain Foundation, held the training.
  • I met some unbelievably supportive people through my writing and through doing advocacy work. Some have shared their hearts with me. Some have helped me hone my blog with their encouragement and guidance. Others have shared the ropes of advocacy and how to accomplish reaching the politicians with our unique chronic pain perspective.
  • I met with my US House of Representative’s office this year about how the chronic pain community has been affected by the misinterpreted CDC’s opioid prescribing guidelines. Once again, the words came effortlessly to me, and I knew I was on the right path.
  • The Alliance of the Treatment of Intractable Pain (ATIP) asked me to help recruit and manage volunteer advocates for them. It is a wonderful group of people deeply dedicated to fighting for the rights of chronic pain patients. I am honored to be apart of this organization.
  • We lived through historical rain fall amounts when Hurricane Florence came though our area. It’s the worst hurricane I have been through, but thankfully, we had minimal damage. During that week, I had to push through the pain, no matter what, to keep my 84 year old mother comfortable and keep food cold without power, and to cook and clean. I fell into bed exhausted every night, but I learned something about myself. I do have what it takes to survive anything. I can endure much more than I thought.

As I found where my true strength lies this year, in Christ, I learned I am capable of accomplishing many things that I thought I could not. Every moment has been a “learning” crawl but I know I have not been alone.

I have had all of you along during the past year, which I am thankful for every day. I have learned something from each of you. Some blogs I read made me cry. Some, made me giggle, but mostly, the blogs I read encouraged and inspired me.

I have high hopes for 2019.  There are many things coming together in my life which I want to share with you this coming year.

Thank you for walking this journey with me.  Here’s to the year 2019 and beautiful beginnings.

I can do all things through Christ who strengthens me. Philippians 4:13 (NKJV)

Much Love and Many Prayers,

Cindy

Photo Credit: Steve Halama on Unsplash

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

Surf’s Up

I started writing an ethical will for my three sons a couple of years ago.

I’ve never finished it because I have so much I want to tell them. I just don’t know where to stop.

An ethical will is a way to tell your loved ones your values, blessings, life lessons, hopes, and dreams for the future. It’s simple really.

It can actually be about anything you feel is valuable information to pass down to the next generation, and you do not have to wait to die to pass it on to your family members.

You can give them a copy at any time for any reason, or no reason at all.

It is not a legal document of any kind.  It’s just thoughts and things you want to share.

Don’t we all have times when we wish we had one more moment in time to tell that special person something that we value deeply?

Here is just a tiny sampling of things I have written in my ethical will of words of wisdom I want to pass on to my children.

Life is hard no matter what path you go down.

The people beside you are hurting in some way just like you. 

That’s just reality.

EVERYTHING depends on how YOU react to it.

You can try to find positive instead of looking for the negative.

It’s harder work, but it pays off with dividends:    Joy.

I guarantee you’ll have joy if you learn to ride the wave instead of drowning in the wave. 

Much Love and Many Prayers,

Cindy

JULY Chronic Pain Support Group Update:
I am waiting on the final go ahead from the community agency that is allowing me to lead a chronic pain support group at their facility locally.
I will now be making the flyers and cards to give out at doctor’s offices locally and to put up around town.
The dream is slowly coming together.  I want to thank everyone that is supporting and encouraging me; specifically, my hubby.  This is probably one of the craziest ideas I’ve ever thrown at him but he has never lost a step right beside me.  Always & Forever.
Help My Mission of helping others live the best life they can with chronic pain.
________________________
Photo Credit (I could not bring myself to crop the photo – the colors were too awesome- so it is too large but beautiful) by Paul Larkin on Unsplash 

 

 

 

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

Chronic Pain Support Group Training

Whew!  I am starting to catch my breath from the trip to Chicago for the chronic pain support group training last weekend.  I am experiencing more pain than I expected, and it has slowed me down tremendously.

But let me tell you about the training instead!  Pain Connection (a program of US Pain Foundation www.painconnection.org. www.uspainfoundation.org) held the training. Every one attending and the leaders were awesome. We all connected almost immediately.  Many different personalities in the room and different belief systems, but we all came together as one to learn how to help the chronic pain community by starting support groups in our local areas. We also learned things that we can apply to ourselves for self-care like guided imagery and meditation.

We went through so many aspects of chronic pain/chronic illnesses and how to have an effective treatment plan so you can have a good life. I will have plenty of topics to write about and use in a support group setting; too many to name it all here today but I cannot wait to share it all.

IMG_2371

My biggest take away is the Treatment Tree. The Treatment Tree idea and planning can help you to find tools and skills for every aspect of your life: physical, emotional, spiritual, social, career, hobbies, and organization. It recognizes that we have many different ways that chronic pain affects our lives and helps us to find solutions that work every day.

I have never had a doctor that considered all these aspects at one time when deciding different medical treatments for me.  We must be our own advocates. I intend to give the information I have learned to you so we both can take it to our doctors so they can see the big picture. We need more than just a prescription!

I also learned more about our pain being so much more than just in the physical area of an injury. There are so many aspects of our lives that affect our pain, and the brain plays a very large role in ways that I never knew before. As I learn more, I will pass it on.

Chicago was nothing like I have heard about it. I pictured dirty and unfriendly.  We seemed to be in a more industrial area in the north west of Chicago.  It was very clean and everyone we came in contact with was very kind and helpful.  I couldn’t have asked for a better trip.

I love meeting new people and hearing their life stories and this was no different.  It exceeded my expectations and I am so thankful that my hubby and I we both were able to complete the training. 

At the end, we had to pick a stone with a word on it and tell why we chose it.  I chose happiness because I have always chased happiness.  I didn’t say anything profound because being put on the spot like that shuts down my brain.  😁  But I always thought happiness was living without any troubles or sorrows and when I got to that point, I’d be happy. But I have found out that happiness can live amongst the troubles and sorrows. With this knowledge, I became unstuck.

JOY IS BUT THE SIGN THAT CREATIVE EMOTION IS FULFILLING ITS PURPOSE.
– CHARLES DU BOS

That’s what this blog is all about: changing perceptions. Changing the perceptions other people have of people with pain and changing our perceptions of ourselves and our chronic pain journey. 

Knowledge is power.  Go out and get you some!

I am excited!! I am 6 followers from 100.  Help me out!  Follow my blog!

Much Love and Many Prayers,

Cindy

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

Where Are Your Thoughts Taking You?

Like most people, I don’t ever want to be embarrassed, but I feel like I’ve discovered some things that most doctors do not take the time to tell chronic illness patients.

We spend time searching for answers about our chronic illnesses, and sometimes we eventually find peace with our life on our own, but that takes time.

I don’t want other people to waste another minute of life. I feel the need to shout what I have learned so that you can have a better experience. I’m willing to risk the embarrassment of being vulnerable.

Being so eager to tell the world my epiphanies reminded me of a movie called Jerry McGuire, where a sports agent finds out that life is so much more than money. He has his ah-ha moment and writes a manifesto for his life.

He bares his soul in it, things he hasn’t told anyone else that he believes in. He sent it to everyone he knew. And, he immediately regretted it.

That’s how I feel every time I hit the “publish” button on a blog post. It takes significant courage to hit the button each time.

Even though it is difficult, I want to be real about my own experiences with living with chronic pain while helping others and sharing other people’s stories.

I’ve talked with other chronic pain patients across the United States and in other countries.  Speaking to others with varied backgrounds has helped me see past myself and my own chronic illness.

I have found out that while we are different races, ages, and backgrounds, we all live the same type of chronic illness lives and have the same challenges We have different diagnoses but similar type problems.

Life can be hard, but there is an opportunity to know yourself better in every circumstance. We can choose to either focus on the bad things that have happened or find the joy that life still has to offer.

Sometimes we lower our expectations in life so that we won’t be disappointed. You don’t have to settle just because you have a chronic illness.

You may not be able to change your circumstance, but you can change your mindset. Your mind is a private battleground of positive and negative thoughts that only you have control over.

People can tell you what you should believe, but you ultimately have the final say whether you suscribe to the same beliefs or not.

It’s only true if you believe it.

Stop and think about that statement.

It’s only true if you believe it.

You decide where your thoughts go. It takes work, but you do not have to let your life circumstances keep you from happiness.

Learning how to slow down your thoughts so that you can examine each one helps you to find the best life has to offer. When you listen intently to the soundtrack in your head, you will hear what you have been telling yourself for years.  You might be surprised at what you learn.

I began doing this whenever my anxiety popped up. The words in my head would be all running together stirring up my fear. One thought after another sped through my mind not leaving enough time even to entertain what the thought meant and why it was there. When I slowed my thinking down, I found that I could challenge the thoughts one by one.

A good way to do a reality check is to balance every negative thought with a positive one and ask yourself a few questions. 

  • What is the evidence for the negative thought?
  • Am I jumping to conclusions?
  • Is there any other way to perceive this negative thought?
  • What can I do to solve the problem right now?
  • Am I safe right now?

Sounds time-consuming, but it isn’t once it becomes second nature. It just takes practice.

Think of it as a child learning to walk. Steps are slow and wobbly at first, but over time they become firm and confident.

Once you find that negative voice, you begin to smack it down faster each time with positive thoughts as time goes by.

Your thoughts determine your next steps in life. Shouldn’t you take time to consider where they are taking you?

Much Love and Many Prayers,
Cindy

 

Help Support My Mission

 

Photo by Kevin Schmid on Unsplash