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.
________________________
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 

 

 

 

Check Out My 100th Follower

Yippee!

I hit 100 follows on on June 24, 2018.  I wanted to give a shout out to my 100th follow Phoebe Chi (Puppydoc)-Musings of a Puppy Doc.  

The Puppy Doc shares poetry about being a caregiver as a medical professional and helpful health related articles.

The depth of her caring is evident in her writing.  I hope you will go check her blog out.

Thank you PuppyDoc for helping me reach 100 follows!

Do You Feel Stuck in Your Situation?

This morning I was thinking about my thoughts and beliefs that kept me “stuck” for so many years with deep and dark depression and anxiety from chronic pain.

I felt stuck because…

I did not have belief in myself.

I allowed others to do everything for me.

I always thought my body had to be completely healed to have a better life again.

I thought I must be weak because I can’t push through the pain, and that made me feel shame.

I became angry when doctors told me I must learn to live with it so I “dug in my heels in” that a cure must be found.

I didn’t take responsibility for my treatment. I trusted in doctors to have complete control over my treatment without question.

I believed that going to a psychologist meant the pain was only in my head.

I had untreated severe depression and anxiety due to pain.

I relied only on medication and not lifestyle changes to get through my pain.

I was grieving my “old” life and who I was before chronic pain.

I kept myself isolated at home.

I compared my life to everyone else’s “perfect” life on Facebook.

It is in my personality to resist change and to be inflexible mentally.

This is just a few reasons I could not move forward with my life.

So, how am I turning things around?I realized over time that I was the only one that can change my situation. It is a long slow process. I had given away my power a long time ago, so I had to find the strength to make the changes. I struggle so hard with making changes. I just cling to whatever I am doing, even if it isn’t the best thing for me. Change is scary.

In fighting to change for the better, I felt like I was in a cocoon pushing out an arm and a leg, occasionally punching through only to have it close back up quickly. There are days I still struggle with breaking through the difficult stuff and being consistent.

When I hit 250 lbs from being sedentary, I woke up and realized my weight issue was completely out of control. I sought out a surgeon for weight loss surgery. Part of the process is seeing a nutritionist and psychologist. Both have helped me change my life.

This was the first step in lasting change although I didn’t know it at the time.

I had to take a very long multiple choice quiz about my behaviors and beliefs. The results are used to determine if you are a good candidate for the surgery mentally and if you will commit to making the lasting changes. Needless to say, my results showed I “got issues.”

That was the beginning of my journey to healing. It was not the cure I was hoping for. I was looking for that miracle that would make my life go back to normal.

I would love to tell you I have it all figured out but I am moving very slow with the changes. We are talking tiny baby steps. Creeping ever so slowly over the past two years.

With every a-ha moment of understanding how my brain processes thoughts, I began making small changes in how I thought about myself through therapy.

For me, going over the old me and keeping what works but throwing out the no longer usable tools in my mental health toolbox has been helpful.

Has it been easy? No. It has been excruciatingly painful emotionally at times, but I have learned so much about myself and the people around me.

Becoming aware of who I really am and accepting that person even though I am different than the beliefs I was given as a child has been key to making changes.

It is just the starting point sitting across from a mental health professional. You have to get over the hump of using your brain to control your thoughts.

Most everyone has heard the buzz word “mindful.” It is having control of your immediate thoughts and changing your negative belief pattern while living in the moment, not in the past or future but right in the present.

Feeling stuck, lonely, and depressed is no way to go through life. Some people do not win the battle, and that makes me very sad.  I hope I reach someone today that feels defeated and they seek out professional help.

You can choose to take control of your thoughts. There is no shame in seeking out help. The medical doctors are not taught how to handle emotions and mental health issues that chronic pain causes.

Medical doctors have very little training in treating a patient’s emotional pain from chronic pain. Mental health services should be offered when you are diagnosed with chronic pain and not at the end when they do not know what to do with you anymore. They leave you emotionally damaged by chasing miracles and expensive alternative treatments they offer when they cannot do anything else for you.

A psychologist or other mental health professional should be a part of the chronic pain treatment plan in the beginning, and it should be covered entirely by insurance.

Don’t stay stuck.You really can feel happiness in the midst of chronic pain.

I promise it is worth the hard work. The first step is believing in yourself and that you are worth the work. I believe in you.

Join me in taking my own advice today. Stop the negative thoughts by challenging each one. People say “get out of your head,” but I think we need to “get in our head” to have a happy life no matter the situation or surroundings.

One thing no one can take away from you is your attitude.

Much Love and Many Prayers,
Cindy

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