Your Body Hears Everything Your Mind Says

Know that “this too shall pass.”

Sounds simple doesn’t it, but when I am in the middle of a bad flare, this is a hard mantra to remember.  You would think that after a lifetime of chronic pain, I would remember this and stay calm, but it isn’t that easy. The first day of a painful flare, it’s annoying to go lay down multiple times during the day.  Then by the third or fourth day of being unable to do basic tasks, I go into catastrophizing.  My mind starts flashing scary questions like flash cards that carry me right into anxiety and worry: like, will I ever be able to leave the house again?, how will I cook for myself?, and then, anxiety bubbles over to panic, will I ever be able to do laundry or shop again, will I be able to drive again?  And they don’t stop there unless I stop them myself.

I have found mantras useful to help me get out of a “mind flare” when I cannot remember that “this too shall pass.” I have post-it notes everywhere, and I mean everywhere, to remind me of the simple thought, this too shall pass and other mantras that motivate me to be positive about my situation.  Because after all these years, I still forget this principal thought.

Have a Day Quote

I do not mean that the pain will pass and I will be all better.  I am only implying that peace will come back, and I will be able to smile and actually feel the joy again amid chronic pain. I will not experience a medical breakthrough, but a mental breakthrough and mantras help this process.

Mantras are a sentence or a group of words that bring you back to the reality you want to have in your life in the middle of struggles.  You can use mantras in any way that works for you.  Speak them aloud or in your head. Write them down or memorize them. Find a sentence, scripture, or a small grouping of words that inspire you to think more positively, and do it BEFORE you have an intense flare.    If you have a mantra memorized or on your fridge so that you see it during a flare; the words can bring you back to a healthier mental state.  We know through research that being in a tense mental state increases physical pain.  If you can reframe the negative situation in a positive light, it can help ease the pain flare from becoming worse.

For me, it doesn’t always work; I will admit.  Sometimes, I see a mantra that I thought might bring me back to lighter thoughts, but when I read it, “yea, right!” comes out of my mouth, and it does nothing for me.  It is difficult to pull myself out of this funk, but I just keep repeating them until I believe it.  Eventually, you will feel it.

My most favorite mantra is

“I will breathe.

I will think of solutions.

I will not let worry control me.

I will not let my stress level break me.

I will simply breathe.

And it will be okay.

Because I don’t quit.”

-Shayne McClendon (this is who it is attributed to on the internet. If anyone knows different, please let me know. I want to give the right person credit.)

Yesterday, I found my first list of mantras, dated in the fall of 2016, that I utilized to change my mind-set, and rereading them made me smile at how far I have come.  I remember how hard I struggled at changing my thoughts.  It was so hard but, I kept reading them every morning while I brushed my teeth and eventually a few of them stuck. After awhile,  I realized my mind was stronger than I thought.

Cindy’s List (from 2016)
Make peace with your past
    so it doesn’t disturb your future.
What other people think of you
    is none of your business.
The only person in charge
    of your happiness is you.
Don’t compare your life to others.
    Comparison is the thief of joy.
Time heals almost everything.
    Give it time.
STOP thinking so much.
     It’s alright not to know all the answers.

SMILE

You don’t own all the problems of the world.

Creating a mind shift in our thoughts from negative to positive helps us to get unstuck. When I’m in a flare, I feel like I have lost all control, but mantras bring me back to the reality of the situation that I do have control over my mind if not my body.  When the mind is a well-tuned instrument, a person can face all the difficult circumstances that living with chronic pain brings.

It is all about how we view things that affect us in our lives. The positive thoughts help me keep perspective of my situation, and that is something we all need in our lives.

Much Love & Many Prayers,

Cindy

Featured Photo by Natalya Letunova on Unsplash

 

 

Blessed Are The Cracks

“You have a story—

a very important story that rests at the core of your being, a story to tell.

It is a story that has torn your heart into pieces, and it is a story of beauty, because your heart couldn’t have been torn without first having loved and somehow lost something you loved.

Now is the time to begin honoring your story…blessed are the cracked, for they shall let the light in.”

–Susan Zimmerman

 

Just wanted to share this with everyone.  I pray that everyone can cope well enough to have a good day.

 

Much Love & Many Prayers,

Cindy

 

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

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

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.

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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

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

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