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

Music is My Shorthand

Tonight, I am doing fairly well but there are some out there that are feeling like they just cannot keep going.

If that is you tonight, this video is for you.

If you are doing good, please stop one minute to pray for the people that cannot see their way at this moment.

Chronic pain often forces us to remain isolated and feeling alone. We have all had those moments that makes us fearful of our future.

So tonight, remember that you are not alone.

Much Love & Many Prayers,
Cindy

International Association for Suicide Prevention

Photo by Krystal Ng on Unsplash

Music is the shorthand of emotion.” – Leo Tolstoy quote from BrainyQuote.com

My Temple

Today, I was going through last years datebook and found a prayer that I had shared in a blog last year.  I would like to share it again today.  It’s a great reminder that in all of the mess we can feel gratitude within the stuggles of fighting with a broken earthly body.

Creator God:

Thank you for this body. Thank you for the gift of movement, the gift of touch, the gift of laughter.  When I am at odds with my body, please help me focus my thoughts to what my body can do and the ways it can serve you. Thank you for the nerves and synapses. arterteries, and brain cells, that make me who I am, your creation.  Amen

Enjoy your weekend!

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

Stop Limiting Beliefs!

This is a great explanation of how the brain reacts to new information. Our brains are lazy, but we can change gears with constant reminders of the two solutions he mentions. Really helpful read.

Pointless Overthinking

As you may or may not know, a limiting belief is any belief of yourself where you believe you cannot do or achieve something.

For example:

I can’t do well at at this project because of my boss hating me.

I can never start a successful business because my family has always failed at starting their own business.

I won’t go to the gym, because I’ll look like an fat old slob and people will laugh at me.

You get the point. Most, if not, all of us have had these beliefs before.

And the annoying thing about them is that they simply hold us back from something we secretly want to do, sometimes even dream of doing, and always sort make us suppress our desires. Terrible.

So what can you do about them?

I’ll give you two pieces of advice. Two pieces that have helped me breakthrough limiting beliefs.

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Medicare New Opioid Rule Starting January 1st

The following has been compiled by The Alliance for the Treatment of Intractable Pain (ATIP) for chronic pain patients to navigate the new Medicare opioid prescribing rules coming January 1, 2018, in the United States. I hope this helps the people that will be affected to not have interruptions in their opioid prescriptions. Please pass this information on to others that may be affected.

Much Love & Many Prayers,
Cindy

From The Alliance for the Treatment of Intractable Pain:
This January, changes to opioid and other controlled prescription medications will occur as CMS (Medicaid/Medicare), and many private insurers begin implementing the CMS Final Call Rules.

Opioid/controlled prescription coverage issues are summarized here:

CMS expects sponsors to implement the following formulary-level opioid safety edits (opioid safety edits) at the point-of-sale (POS) in 2019:

1. Soft edit for concurrent opioid and benzodiazepine use
2. Soft edit for more than one long-acting (LA) opioid
3. Care coordination (soft) edit at 90-199 morphine milligram equivalents (MME)
4. Hard edit at 200 MME or more
5. Hard edit 7 day supply limit for initial opioid fills for opioid naïve patients

IF you are under 90MME, and are not taking concurrent benzodiazepines or other “potentiators”, this should not affect your coverage.

IF you are between 90-199MME, a one-time soft edit on the part of the pharmacist will be required. If you have only one prescriber and use one pharmacy, then you should only need this safety edit once per year.

IF you are at 200MME or over, you will need to find out from your insurer if they will cover your medications at your MME.

A soft edit requires the pharmacist to contact the prescriber to confirm intent. If it is confirmed, the pharmacist will enter a code to override the edit and fill the prescriptions. A soft edit can be resolved at the POS.

A hard edit requires the pharmacist to contact the insurer (or sponsor) to determine if they will cover the prescriptions. Hard edits are not resolvable at the POS, which is why ATIP encourages all patients to consider the following information to help determine your coverage for next year and take action to hopefully prevent disruptions in your prescription coverage in January.

EXEMPTIONS:

From CMS: “Part D sponsors are expected to develop specifications that exclude beneficiaries who are residents of a long-term care facility, in hospice care or receiving palliative or end-of-life care, or being treated for active cancer-related pain from all of the opioid safety edits. Sponsors should use all information available to them to reasonably exclude these beneficiaries from triggering the edits at POS in the first place.”

Sponsors should also apply specifications to account for known exceptions, such as, high-dose opioid usage previously determined to be medically necessary such as through coverage determinations, prior authorization, case management, or appeal processes.

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Below are steps you can take to evaluate and/or maintain your prescription medication coverage for next year:

1. Know exactly which opioid medication(s) you are on and at what dose.

2. Know how many MME’s you take per day.

(To determine your MME, please visit: https://opioidcalculator.practicalpainmanagement.com.
Select “opioid conversion calculator” to convert any opioids to oral morphine, with thanks to Dr. Jeff Fudin)

3. Know if any of your opioid pain medications will require a Prior Authorization, and if so, have that done now.

4. Consider asking your provider if the codes for Palliative Care could be added to your chart/prescriptions, if your provider thinks you might qualify for treatment under the Palliative Care exemption. The general code for Palliative Care is Z51.

4. Have a conversation with your clinician(s) and ask if they are aware of these upcoming Rules, and if not, share the links provided below with them.

5. If you don’t have a prior authorization, ask for a “coverage determination” from your insurer (CMS calls them “sponsors.”) This will require you to know your medications and MME’s. With that information, you can ask your sponsor:

“I am requesting a coverage determination. I take xxx & zzz opioid/benzodiazepine/potentiator medications. Will my medications be covered? If you don’t know, may I speak with a supervisor who does know?”

Then use that information to work with your clinicians and your pharmacy.

If you experience a denial of coverage, you have a few options:

Ask your clinician to schedule a clinical care conference with your insurer to explain why you need certain medications.
Ask your clinician if they will arrange a peer-to-peer conference with a clinician from the insurer to explain your medical necessity.
If denied, ask your provider to get the name and license # of the physician who denied your coverage
Use all the information you collected to file an appeal with CMS, either on your own or with the help of a loved one or patient advocate.

Helpful links:

• For additional information regarding the final 2019 Medicare Parts C&D Call Letter, please visit https://www.cms.gov/Medicare/HealthPlans/MedicareAdvtgSpecRateStats/Downloads/Announcement2019.pdf.

• For additional information regarding the 2019 Part C and D Regulation (CMS-4182-F), please visit https://www.gpo.gov/fdsys/pkg/FR-2018-04-16/pdf/2018-07179.pdf.

• For information on Medicare Prescription Drug Appeals and Grievances, visit https://www.cms.gov/Medicare/Appeals-and-Grievances/MedPrescriptDrugApplGriev/CoverageDeterminationsandExceptions.html.

• For additional information regarding the CDC Guideline for Prescribing Opioids for Chronic Pain, please visit https://www.cdc.gov/drugoverdose/prescribing/guideline.html.

• To review the CMS Roadmap to Address the Opioid Epidemic, please visit https://www.cms.gov/About-CMS/Agency-Information/Emergency/Downloads/Opioid- epidemic-roadmap.pdf.

• To review the Medicare Prescription Drug Coverage and Your Rights, please visit https://www.cms.gov/Outreach-and- Education/Outreach/Partnerships/downloads/yourrightsfactsheet.pdf.

• Any general questions related to the Medicare Part D opioid over-utilization policy may be sent to PartD_OM@cms.hhs.gov.

• Questions related to submission of opioid safety edit information should be sent to partdformularies@cms.hhs.gov.

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