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.

IMG_0003

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

You Are Strong

Strong quote

Wow, I really have felt this quote the past few weeks.  Every day I wake up living with chronic pain, I have to find my strength to get back up and do it all over again.  Without a focus, living this way causes depression in me, so I have been putting all my attention on starting the support group and getting my office put back together. This has created less time for the blog.  I may be posting less, but I am still here.

I wanted to post this for those that just keep moving no matter what, keep putting one foot in front of the other, just keep going, regardless of their circumstances.  You are strong fighters working through hard, painful things every day. I know what you are going through every day.  You aren’t alone.  Just keep moving.

Move Lyrics by TobyMac

Another heartbreak day
Feels like you’re miles away
Don’t even need no shade
When your sun don’t shine, shine
Too many passin’ dreams
Roll by like limousines
It’s hard to keep believin’
When they pass you by and by
I know your heart been broke again
I know your prayers ain’t been answered yet
I know you’re feeling like you got nothing left
Well, lift your head, it ain’t over yet, ain’t over yet so
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Echoin’ inside your head
Are the words that your sweet momma said
“Shoot for the moon, my dear”
So you took aim out of this atmosphere
Between high stakes and pump fakes
You’re feelin’ like you can’t buy a break
I can hold your hand, but I can’t turn your eyes to freedom
I know your heart been broke again
I know your prayers ain’t been answered yet
I know you’re feeling like you got nothing left
Well, lift your head, it ain’t over yet, ain’t over yet so
Move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Hold on, hold on
Lord ain’t finished yet
Hold on, hold on
He’ll get you through this
Hold on, hold on
These are the promises
I never will forget
I never will forget, so
Hold on, hold on
The Lord ain’t finished yet
Hold on, hold on
He’ll get you through this
Hold on, hold on
These are the promises
I never will forget
I never will forget
I know your heart been broke again
I know your prayers ain’t been answered yet
But it ain’t over yet, it ain’t over yet
So get up and move, keep walkin’ soldier keep movin’ on
Move, keep walkin’ until the mornin’ comes
Move, keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, ain’t over yet
Lift up your head now, keep walkin’ soldier keep movin’ on
Lift up your head now keep walkin’ until the mornin’ comes
Keep believin’ keep walkin’ soldier keep movin’ on
And lift your head, it ain’t over yet, it ain’t over yet
Songwriters: Bryan Christopher Fowler / Christopher E Stevens / Toby Mc Keehan
Move (Keep Walkin’) lyrics © Capitol Christian Music Group
Much Love and Many Prayers,
Cindy

Bouncing Back

I am starting to become discouraged because of my limited abilities lately. I tell myself that I am not a burden, but sometimes I do not believe it. Even though it feels like it will never go away, I must remember that this level of pain is not going to be forever. But sometimes when you are in severe pain, that is all you can see and feel and taste, so it can be hard to change your perspective to a healthy one.

I will have a break in the severe pain eventually. I know this. I have begun to notice the rhythms of my pain. I’m learning to go with it instead of fighting every step. I may not be able to change that I am in pain, but suffering is optional.

After all the hoopla in the last post about the opioid symposium last week, I ended up not going to the event. I admit that I was disappointed that I would not be able to make a connection with my state representative, but my mom had a medical event. She is 83, and I am her caretaker. She is self-sufficient usually, but I did not want to leave her until I was sure that it was only a virus and nothing serious.

As soon as I have the time, I will request a visit with my state government officials to discuss how chronic pain affects every aspect of our lives and how their decisions will impact the chronic pain community.

I am not advocating for opioids around the clock for everyone. I want people to understand the reason there is such a backlash from chronic pain patients about wanting their opioids is because the government agencies are leaving us with no alternatives that actually work to replace the pain relieving medicines they want to take away. I believe every person I have spoken to about this issue has said that they would never take another opioid IF they had something else that actually worked to relieve their pain.

We need more research on pain because everyone experiences it differently. How we perceive pain is a complex interaction between mind and body. There is nothing that happens in the individual that affects only the mind or only the body. This interaction involves the nervous system and other factors, which include: genetic, culture, modeling, thoughts, stress, history of abuse, and trauma.

Right now pain research is lacking, but many people are deep in the trenches working tirelessly on changing the fact that we do not have affordable, effective alternative to the opioid medicines. You can also help by telling your story to your elected officials and make them understand our difficult situation, so more money is allocated for studies about pain.

My mom is feeling much better today, and I am getting back into my regular rhythm which helps me to feel the best I can. I have been in extra pain because of the rainy, hot weeks we have been having. Also, I cannot seem to bounce back from the trip to Chicago for the chronic pain support group training.  I am pushing the first organized meeting in September. I am praying that I will be able to get everything done in that timeframe.

What positive things do you do when you get discouraged by not bouncing back as fast as you would like from a flare? Do you get impatient and push through the pain or do you realize you need to up the self-care?

Much Love and Many Prayers,
Cindy

Help My Mission

Opioid Symposium and Chronic Pain

There will be an Opioid Symposium on Monday night hosted by my Congressman. I just found out about it, and I’m scrambling to get facts and figures together so I have proof of the information I will be sharing with them if given the opportunity.

To begin to prepare, I called Congressman Rouzer’s office to find out how the chronic pain community will be represented in this setting and what they hope to accomplish.

I spoke with someone that explained that the symposium would have four panels as it relates to opioid stigma, treatment and resources, prevention and law enforcement. Each group represented will have 2-panel experts that will talk for 30 minutes each.

She said one panelist would be a doctor from our hospital, and he “knows chronic pain.”

I respectfully disagreed with her. Unless the doctor is a chronic pain warrior, he can shed no light on the physical and emotional life transitions that being in pain 24/7 brings.

Knowledge of the disease does not portray us. Having pain now and then does not describe us. He cannot begin to understand the suffering of chronic pain with chronic illnesses unless he has lived with it. He cannot represent us on this subject.

She explained to me that it is a complicated discussion and “unfortunately, everything could not be heard in the 2 hours allotted to the discussion,” and that is why no one that has pain is sharing our chronic pain perspective for us. That is unacceptable that we are not part of the equation of the future of opioids, and I intend to change that in the future symposiums.

She became silent when I asked her if Congressman’s Rouzer knew that people are losing the will to live and some lose the chronic pain battle to suicide because the suffering is too high because of the recent changes with opioids.

Her ultimate response was that I needed to have a meeting with his office. They want to hear my perspective which is a beginning.

What are your thoughts as a person of pain about the lack of representation at this event for people with chronic pain?

If you have been negatively affected by this lack of proper treatment or you know of someone that committed suicide because of the untreated physical pain they are in, please send me the information by my Contact Form so I can share with the people that will be shaping the chronic pain communities’ future. Alternatively, email to    validatingchronicpain@gmail.com

It does not matter if you live in my district or even in the United States. I want to hear your stories so that I can take this information as far as possible. I will keep it anonymous if requested.

Much Love and Many Prayers
Cindy

If you are struggling with living each day with chronic pain, if you wake up and you think to yourself, you cannot do it again…You can. Just keep going.

suicide+hotline

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

 

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

The To Do List

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

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

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

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

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

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

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

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

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

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

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

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

Be kind to your bodies out there.

Much Love and Many Prayers

Cindy

Help Support My Misson

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

 

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

Help Support My Mission