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

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

 

 

 

 

He Cares For You

Cast all your anxiety on Him because He cares for you. 1 Peter 5:7

I memorized this verse a very long time ago when I was teaching a Sunday school class for 1st graders. It’s a simple verse that even the kids could memorize.

How can a Bible verse help you in today’s world? If your hope is in Him, you know there will be a glorious day when all the pain ends. That’s literally what keeps me going every morning when I wake up.

I do not believe meditating on a Bible verse relieves chronic pain.

Every morning I’m usually in the same amount of pain when I wake up. It’s not easy to keep going, but my hope is not from this world. Knowing there will be an end to the pain gives me the hope I need to continue my life.

It is like a birth. You know at the end of the pain there will be a reward of a baby when it is over.

I choose to look at my salvation in that way also. Life is hard with physical and emotional pain. This world is not our world. We will feel pain of all kinds, but there is a reward much greater than we can imagine.

This verse helps me trust in God giving me peace so that I can focus on what is important, helping others, instead of worrying.

Do you have a Bible verse that carries you through hard times? Please share. It could encourage someone else. You never know the impact you can make by reaching out to help others.

Much Love and 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

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.

 

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