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

 

 

The Robin By the Window

I have an exciting thing going on right outside of my window.  I have a robin’s nest within 3 feet of my bedroom window and only about an arm’s reach above my head.

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It is tucked neatly under a deck on pilings off of the second floor.  I first noticed it about two weeks ago, and I stood there to see if any birds were sitting on the nest.  It wasn’t long before a robin with a robust rust brown belly, and yellow beak flew under the deck and sat down. I got really excited and got on my tippy toes from inside of my bedroom, but I could not see any eggs when she flew away.

The next few days, I watched with curiosity trying to stay far enough away as not to spook her. I could not see anything. I just had to believe the eggs were there and wait. I knew the babies had hard work ahead of them to break through the shells, but there was something good coming.

I also enjoyed watching mommy robin hop along all over the back yard looking for worms in the lush green grass deep in the soggy ground.  When she was full, she would fly back and wiggle herself down onto the nest.  I just knew there had to be eggs.

After a few days of watching her, I began to see another robin helping her sit on the nest.  I decided it must have been daddy robin.  From Google, I found out that they both watch over the eggs and that the whole process only lasted two weeks.  I was scrambling trying to figure out how many days it had been since I first saw the nest.  I was not sure, but I continued watching every day and noticed how this bird just lived.  No concerns, no worries.  Everything is provided. A new life is being created.

A few more days passed, and I was looking for signs of babies when one of the adult robins flew back with a wiggly worm in its beak.  I did a quiet mini jump up and down session!  I had babies!  Well, the robin technically had the babies, but I was witnessing this event.  I was so excited. I’m sorry that I don’t have a high-speed camera to capture it, but I still wanted to share the pictures.

 

Oh, my gosh! They were hungry! At first, I could only see the pointy little beaks above the top of the nest.  But each day their scrawny featherless necks reached higher and demanded more food. I read that the male and female robins would fly back and forth as many as 100 times feeding the newly hatched babies every day. That was dedication along with fortitude; something that we also need to have when living with chronic pain.

So the baby birds grew each day, and I could tell their feathers were beginning to fluff up.  I am amazed at how fast and how much they change each day.  Two days ago, one of the two babies was very wobbly in the nest while trying to spread out his wings.  He just wasn’t sure exactly how to do it, but he keeps trying. Then today, both the birds were spreading out, taking up most of the nest so mom, or it could have been dad, sat on the 2×4 beside the nest.  They were obviously in the teenager stage, pushing the limits with their parents!  HA HA!

I checked on them a few times today, and they have not left the nest yet, but it will happen within a few days. I hope I don’t miss it.

I also found out that a robin is a sign of new beginnings or rebirth, and I thought that was so very appropriate to my life where it is right now. Maybe you can relate.

I started school to help me to be better equipped to help others that are living with chronic pain. I moved to a new state and to a town where I do not know anyone. That was big. I’ve had a lot of firsts in the past three months, causing me to need to reinvent myself again. It seems like that is precisely what life is about: constant change.

I am going through new beginnings in my life, and God has provided everything and every person that I need, and He will continue to do that for me. He will help you too.

On my hardest days, He provided a verse, a friend, or a robin to encourage me and guide me on this journey. I’ve found that we can accept the new beginnings that chronic pain brings. We don’t have to focus on the endings that pain brings to our lives. Don’t get stuck there.

I know you had a full life before chronic pain and you feel cheated. It is debilitating, and it can just stop you dead in your tracks. You think it’s all over, but it’s not just an ending of life as you knew it.

It is also the beginning of something new in your life.  It’s the beginning of the challenge of redefining yourself in a new way.

Is it easy to bring about this new birth?  No, think of the babies breaking through the shell and the work of feeding their new life.  It was a lot of work to fly back and forth to feed their babies 100 times a day.  There will be a lot of struggling to experience getting out of your comfort zone. It’s hard work to change your mindset.  It may be trial and error before you figure it out, but you will eventually find a new purpose in life while learning to accept the closing doors.

Just like the robins by the window, I see a new birth coming to fruition in life amid my chronic pain. You have a new story in you also.   This week I encourage you to look for that newness that you can bring to your life.

Much Love & Many Prayers,

Cindy

Lead Photo by Gary Bendig on Unsplash

Rest of Photos by Cindy

 

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

 

Longing for Answers

This morning I woke up with a thousand things to do that were urgent. My brain jumped to screaming everything I needed to do, but my soul said, stop…breathe….go to the light for peace, then proceed.

When I got out of bed, I decided to spend time praising God for rewriting my story with the love of Jesus. I spent about 30 mins listening to Laren Daigle lastest album and only praising God. This is no quick fix, but the peace it brings is amazing.

Today was a productive day because I put my trust in God. I believe that is the reason why it went well and I accomplished so much even with a horrible cold and physical pain.

Now last year, my buzz word was “believe.” I saw that word pop up everywhere, and I had a very specific prayer answered surrounding the word believe. The verse, help me with my unbelief, changed my life, but it took 10 years for my prayer of “help me with my unbelief” to be answered.

Sometimes God doesn’t give an immediate answer. I had to wait for my answers. The wait was hard and sometimes, I felt like giving up. But the realization of seeing my prayer answered, even 10 years later, is a very powerful feeling of complete trust in God.

So, that’s why my buzz word for 2019 has been TRUST. I am seeing it everywhere in scripture and even in conversations with people that are giving me good advice…just wait, and trust that God has this. He knows what is going on and in his time, he will answer. I believe that to be true.

I’ve seen the power of prayer so many times that I cannot remember them all. I wish I had kept a journal of God’s blessings and provisions, but my memory will have to serve as my testimony. Sometimes my memory isn’t so great so it will take habits of spending time in the Bible and in prayer to constantly remind me.

Spending time in the Bible has always been hard for me because I am so ADHD. I have a hard time reading and even studying, so it takes extra effort. I have read the Bible through multiple times, but I always skipped Revelation.😃

Lots of people try to read the Bible through in a year, I think that’s a bit much. I always did it in two years and it went well without the extra pressure, but it’s ok if it takes you three or four years. Make the commitment to read 10 mins a day and you will get through reading the Bible in YOUR time and that’s ok.

Prayer can be in any form: music, writing, and the spoken word. I’m sure you can come up with more ways to pray. Everyone is different.

I believe it is just like talking to a beloved friend or confidant. Just talk. There is no special formula to get the job done. Just speak to Him and He will hear you, but His answer may be, wait, like it was for me. My answer developed over 10 years, but the answers came. In the meantime, I cultivated a relationship with Him. That makes it worth the wait and the pain journey easier.

So, if you are waiting on an answer that you desperately need, maybe about your chronic pain, just wait and while you wait, cultivate a relationship with God with prayer with praise and reading God’s word. Doing these things will not fail you. Trust in Him to bring your dreams to fruition. He’s that powerful.

I hope everyone is safe and that you feel the best you can in whatever situation you are in.

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

Reinventing The Wheel

Sometimes hubby and I go to a motocross track on the weekend. Hubby races a sports quad, and I really enjoy going too because I grew up around fast cars because of my brothers. I am familiar with the noise and the smells. My dad owned a shop for car repairs, so it was something I was always around. The smell of grease and oil actually reminds me of good memories and that has continued with my hubby.

When we first started going to the track, I was in much better health. Traveling to the motocross tracks was easy, and I could run from jump to jump watching them ride. Since my pain level has increased, we’ve had to improvise.

Hubby brings a generator so I can plug in my heating pad. I have sat in 90-degree heat with it against my back. On the sweltering days, he brings a powerful fan that everyone enjoys. We have a pretty good set up. I know how lucky I am that he helps me to be as comfortable as possible.

The obstacles have been worked out so I can enjoy being there even though I have chronic pain. Hubby loads up all my extra bags of needed items for the trip. I will decide when to take medication or apply a patch, so it is all working together for the most extended moments of pain coverage during the trip and watching him race.

Before chronic pain, I made videos of the guys riding which I really enjoyed doing. Now, I video from a stationary position because I cannot run around the track anymore.

Everything in my life had to change to accommodate my illnesses and going to the track was one of them. At first, I fought it. I wanted life to be like it always had been for me, no struggle to do the things I love.

I am a creature of habit, so I am not too fond of change, but I needed to reinvent myself. I was tired of grieving my old life or the life that I thought I should have. I was profoundly depressed and full of anxiety, and I decided I needed to change. I am learning to reinvent the activities I love by finding solutions to each problem I faced. It’s been two years since I started the process of determining what I needed to do to have a fulfilling life even with chronic pain. Bottom line: I have to accept it.

You may cringe when I mention acceptance of pain. Change is hard, and many people think if you accept your pain, you give up, but it does not have to be that way.

Acceptance is only accepting that you need to make changes to your life.  That is all you agree to. You need to look at it differently and get creative.  If life gives you lemons, make lemonade!

This is accomplished by learning new ways to do things you love to do.  The activity may not be exactly the same, but the passion will be there.  You just have to look for it.

Life is messy and painful. It is so hard for me to accept that, but that is what we must understand when living with chronic pain. Reinventing yourself or your activities will not make it easier, but it can resemble the life you had before.

I encourage you to take an inventory of what you loved to do in the past that you can no longer do because of your illness. Break down each problem by finding solutions one by one, then you will reinvent your life.

Much Love & Many Prayers,

Cindy

Photo credit: 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

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.

 

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.
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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