Serenity!Now

How Does One Live A Life Of Pain With No Cure

Did you know there is a world of difference between chronic disease pain and this growing concern with regulations for people becoming addicted to opioids? In other words, addiction vs. chronic disease pain management. 

Individuals Without Chronic Disease have a chance with rehab to live a life without chronic pain. Lifestyle adjustments can help make the difference. Those of us living with chronic disease pain wish we had a choice to at least try and work towards a cure!  Those suffering from addiction, many times, have the option of taking something to ease them through the discomfort and anxiety stemming from withdrawal. One example being Suboxone. Then they have a choice to stay clean and no longer take pain medicine. 

The life of someone with long-standing chronic disease–like rheumatoid arthritis (where there is no cure) involving significant daily pain from joints that have degenerated to bone on bone, where inflammation is often ongoing–simply will not survive without something to help lessen the intensity of the pain. Years of destruction is irreversible; joints don’t heal, realign and/or stabilize. Getting out of bed, taking a shower, and getting to the sofa can be excruciating and, without pain medication, near impossible. There is extreme determination but when knees, hips, shoulders and feet are screaming with pain–what’s the point? I have been known to stay in the same clothes, day and night, for 3 days straight before changing because I didn’t have the strength to fight the pain to change and bathe. 

I am blessed to have access to a rheumatologist where chronic pain management is more understood and treatment is available.  Sometimes I allow the intensity of the pain to get out of hand and my mind goes to thoughts of the comfort of the beyond, so I deeply understand the desperation of my fellow strugglers. 

There are many being caught up in the new guidelines and regulations who are being sent to addiction pain clinics where people with and without chronic disease are being treated in a like manner, and being made to feel all pain is the same, and that modalities used to treat pain for addiction are the same for chronic disease pain. 

We are now hearing of pain medication being withdrawn and stopped, even resulting in patients choosing to take their lives–unable to continue living trapped in a body torturing them.

Please help us raise awareness that all opioid use is not the same. People in chronic disease pain are much like patients with cancer. In RA, the cartilage is dying, often bones are too. Organs and systems can be compromised resulting in comorbidities, i.e. coronary heart disease, osteoporosis, diabetes. 

There is constant pain and once joints, tendons, ligaments, organs are destroyed, you can’t go back. It is a lifetime of losses with no cure. The physical pain must be medically managed or you leave us with little hope to endure the pain of chronic disease. Please help. 

Serenity!Now

Heart Attack, Trying Times and Searching for Peace

Been feeling overwhelmed and unable to make decisions lately. Having had rheumatoid arthritis for 40+ years, dealing with pain and losses are almost daily occurrences but I was unprepared for the added complication of triple bypass surgery a few months ago. Recovery has been slow and exhausting. Moving toward this “new normal” for me has been hard. Because of caregiver issues, Craig–my husband who has ALS–and I are living in different counties, causing our usual support structures to be weakened.

Craig wrote an uplifting post the other day that I wanted to share. May you feel the same sincerity and hope in his words I have experienced.

Serenity!Now

Through Pain and Darkness, Hope Springs Eternal 

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I have a poster framed over my fireplace with a verse from Psalms 91 and the background is of a bird in its home.

If you make the Lord your refuge, if you make the Most High your shelter, no evil will conquer you; no plague will come near your home. Psalms 91:9

When Craig and I moved to our new home after medical complications five years ago, we walked throughout the empty house, praying for God’s peace, joy, and comfort. I feel God’s presence daily and I have been working on a website for people in chronic disease pain. It’s an educational site for the body, mind, and spirit teaching patients and caregivers empowerment skills in a community setting.

This is a long way to say in 2014, I began having night terrors. I was praying daily and concentrating on the New Testament. During this time, I was asking God’s will for a ministry my friends and I were calling Hope Springs. Specifically, I was praying for God to “rally a league of angels” to help intervene and provide comfort to those in pain.

The night terrors occurred almost every night and I would wake up screaming. I would kind of remember the terror, black shadows moving on the walls and dark bugs crawling across the bed. The amazing part was I was never scared, fear never entered my consciousness, typically I would fall back to sleep. For a long time, my husband and dog Frankie would rush to check on me. Overtime, they learned to ignore the screams because they knew I was fine. But if I visited others overnight, I would try to warn them and often I would be questioned the next day asking if I remembered screaming or I would find them standing by my bed to wake me.

This went on for months without my seeking help. But last winter I sought counsel from the spiritual leader of my Bible study class. Crying and telling of what I believed was my divine purpose to share the spiritual healing of our father and Creator, I told her of my night terrors and how disturbing they were to me and those around me. She listened and then asked about my focus on angels. By promoting my own answer, had I left the door open to ambiguity, i.e. good and dark forces?

Together we prayed and thanked God for His purpose in my life, and asked for his divine intervention to stop the nightmares that seemed to hover in the twilight. Knowing our will may not be that of our Father, I sought forgiveness for possibly requesting a specific solution – my league of angels – rather than seeking His. Should we ever rely on our limited understanding or trust in God’s infinite knowledge?

When your purpose for life is revealed, I am learning it can be something much more than you could ever have imagined. If you’re wondering, yes the terrors stopped that night and my husband says it’s extremely rare for me to have one now.

HopeSpringsVillage.org is live and on the web. Those in pain are visiting to learn new techniques and skills for coping with chronic disease pain and we have already had sponsorship inquires. Life is joyful through God’s grace as I eagerly await where this divine journey takes me! Thank you Father.

Favorite verses:
-And we know that for those who love God all things work together for good, for those who are called according to his purpose. Romans 8:28

-For this purpose I have raised you up, that I might show my power in you. Romans 9:17

-For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

From Janet:

I believe in Our Creator, as a teenager I read my Bible daily and had posters and scripture journals. At age 28, I stopped going to church, divorced, survived two painful rheumatoid arthritis flares with physical and emotional losses, and went on and then off Social Security Disability twice. By 40, I was remarried, worked full-time and completed my PhD all while on multiple medications and adding low-dose chemo therapy. At 54, after a heart episode requiring five stents and more medications, I retired from the National Institutes of Health (a vastly rewarding career) in Bethesda, Maryland. We moved back home to Alabama to be near family and long term friends. My husband’s ALS continues to progress but he is a miracle in that he appears to be one of less than 1% surviving 19 years with the disease.

The journey continues, the ministry is just beginning, and my relationship with our Father brings beauty and light to my life and, I pray, to others. Hope indeed springs eternal.

Serenity!Now

The Gospel According to Winnie the Pooh

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Don’t underestimate the value of doing nothing, of just going along, listening to all the things you can’t hear, and not bothering.

–Winnie the Pooh

I’m generally a very upbeat guy. As such, “down days” like today can be a real kick in the pants. I’m not depressed. I know what a mental health day feels like, and this isn’t that. This is stress. Specifically, financial strain. This is also a struggle with self-worth. Like so many dreamers and creative types, I fight to not base all of my value on what I do, but to remember that my worth comes from who I am. Even if a particular project fizzles, I am not a failure. I know that, but sometimes I forget it. And today, I have forgotten it.

As a kid, I grew up watching watching Winnie the Pooh and loved Tigger so much. I think I always related to his character: boundless energy, always on a “high”, never slowing down, and full of laughter. Tigger probably needed medicine for ADHD, but he didn’t get it. He would have been the teacher’s worst nightmare, but probably her secret favorite. I was that kid.

“Once in awhile someone amazing comes along…and here I am!”

–Tigger

I’ve always thought of myself as a Tigger, and so has everyone else. But being Tigger all the time comes with a lot of pressure. (Because he’s the only one.) So what do you do when you are typically a Tigger, but are having a down day like Eeyore or a grumpy day like Rabbit?

Find some music that soothes your soul. Pick up a favorite book–even if you can quote the damn thing cover-to-cover–and wrap up in it like your grandma’s quilt. Maybe pull away for a bit and get quiet. Or you might enjoy a little vice like one of my really good cigars. (It’s okay, I won’t tell.) If a stogie ain’t your thing, how about a nice cup of hot tea (peppermint and honey, please)?

“I don’t feel very much like Pooh today,” said Pooh.“There there,” said Piglet. “I’ll bring you tea and honey until you do.”

It’s so important to give yourself permission to be down sometimes. Anybody who tells you to “just choose joy” in those moments has obviously never experienced chronic pain, illness, or mental health struggles. If others aren’t being kind to you, set some clear boundaries. And for the love of God, be kind to yourself.

“Just because an animal is large, it doesn’t mean he doesn’t want kindness; however big Tigger seems to be, remember that he wants as much kindness as Roo.” 

While Pooh offers some great lessons, we can also look at the life of Jesus, the most perfect man who ever lived. He even got away to a quiet place from time to time. Yes, he was fully God. But he was also fully human. And so are you.

In my world, I am surrounded by lots of Christians. And like many of them, I once lived in a fantasy world. I thought that because I prayed a little prayer at an altar and was dunked in a little tub, life would somehow always be a bed of roses. We Christians often say, “God is good.” While that may be true, it doesn’t mean our lives will be painless.

Friends, the roses have thorns and Jesus promised us we would have trouble in this life.

Somehow, we get in our heads that we need to have it together all the time. Or that not quite feeling “like yourself” one day equates to a sin. Or is it just me? I tell myself that I must be “up” all the time. What a crock.

Anyone who has lived with chronic illness or pulled themselves through the woes of depression knows that “just having faith” doesn’t always answer it.

I love this quote by Brennan Manning:

“Remember Atlas, who carries the whole world? We have Christian Atlases who mistakenly carry the burden of trying to deserve God’s love. Even the mere watching of this lifestyle is depressing. I’d like to say to Atlas: “Put that globe down and dance on it. That’s why God made it.” And to these weary Christian Atlases: “Lay down your load and build your life on God’s love.” We don’t have to earn this love; neither do we have to support it. It is a free gift. Jesus calls out: “Come to Me, all you Atlases who are weary and find life burdensome, and I will refresh you.”

So what do you do when Tigger is your goal, but you’re having a less than Tigger-ific day? Embrace it. And know that you are entirely loved as you are. When you feel like you should be genuinely smiling, always dreaming, never complaining, on top of the world at all times, listen to the voice of Jesus as he says, “Come to me and rest.”

Bio: Steve Austin is a family man, writer, speaker, and mental health advocate from Birmingham, Alabama. Steve is passionate about recovery and the power of second chances. You can connect with Steve at  www.iamsteveaustin.com

Serenity!Now

What the Heck Happened? Brain Fog, Pain, and Lizards

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Not that long ago I could track, facilitate, and successfully see to completion literally dozens of projects involving hundreds of tasks. Supervising and mentoring dozens of communication employees and contractors for a premier research facility in the US was a typical day. The job was gratifying on a personal and professional level.

Then in 2011, due to complications of long-standing rheumatoid arthritis (RA), I had a heart attack requiring five stents. Relentless pain, fatigue, and joint instability involving multiple joints affected by RA threatened to wear me down and a hip replacement was needed due to osteonecrosis. This made it impossible to work. My husband’s health was deteriorating due to a motor neuron disease requiring personal assistance. This led to the difficult decision to retire and move back home to be near family and friends.

These days I struggle with multiple tasks. Pain, fatigue, and I guess plain old stress fogs my mind making tasks complicated and communication challenging. If I grab and articulate the first response that comes to mind and is readily available — it typically comes out as the wrong name or a description of what I’m trying to say that “cold box that holds things” or that “guy my sister is married to.”

Yesterday, I needed to schedule a surgery (cataracts) and I told the receptionist I needed to check first with my mom before setting a date — mom passed away six years ago! Friends say that as a patient and caregiver, I’m juggling too much but aren’t we all. Hey, a lizard just ran across my screened-in porch, the sun is out and it’s a beautiful day.

Now, where were we? Well given the priorities in my life, does it really matter if I call my brother-in-law that guy my sister married? Just trying to get through the day, find joy in the small stuff and acknowledging the life around us somehow seems significant now. Oh, there goes that lizard again.

Serenity!Now

Opioid Medication and the Right To Life

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Something to think about–it’s not about what you believe Prince did or didn’t do, what he had or didn’t have–it is an opportunity to open a dialogue about chronic disease pain treatment vs. addiction. Just think about it with an open mind.

There is no cure for many chronic painful diseases like rheumatoid arthritis. Quality of life will dramatically change without access to pain meds–we will begin seeing a lot more suffering, wheelchairs, and desperation. A frightening, painful future is ahead for people who have grieved significant physical losses already.

On a personal note–having mostly active RA for 40+ years, sustaining damage (stage 4-meaning bone on bone) in multiple joints, significant limited range of motion (joint movement), joint replacement, permanent dislocation of toes and fingers, fusion of joints, popping cracking joints, swollen hot painful joints causing more damage–once the joint is gone the surrounding bone is next.

There are good days and bad days and there are “I wish I were home with the Creator” days. But what I do know without a doubt–take my pain meds away and there will be only bad days, hard days, questioning life’s existence days. In other words, a life imprisoned in pain unable to walk, dress myself, get to the bathroom, get out of bed, take a shower, even lift a spoon to my mouth.

Believe me, when I was 19, I experienced the acute pain of RA and I prayed to die. This was a time without effective treatment. Meds have come a long way and for the newly diagnosed I remain hopeful BUT for those of us with years of long term damage, slowly taking away pain meds–when there is no cure for a destructive ongoing disease–is not the answer. Please keep an open mind; there is a difference!

 

Prince did not die from pain pills — he died from chronic pain

Serenity!Now

Finding Hope for Physical and Mental Pain

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As you know, pain, at times significant and relentless, has been a part of my life due to a degenerative chronic disease since the age of 16.

There is no known cure and for many years, treatment was ineffective resulting in visible disfigurement (what the medical community likes to call deformities), weak and unstable joints, and often the most challenging; hidden impairments, i.e., pain, fatigue, and organ damage.

Being young and having rheumatoid arthritis — that old person’s disease and in the beginning having little “visible proof” of it, people felt compelled to offer their thoughts.

But the bottom line was often I felt judged.  I wasn’t trying hard enough. I didn’t pray enough. I wasn’t worthy which always led to — I wasn’t good enough.

Over the past few days, I have been learning about my aunt’s grandson and his struggle since age 3 with mental anguish due to childhood abuse and later addiction. Nothing visible I would have seen passing him on the street but substantial mental (hidden) pain over the years – definitely, a kindred spirit.

We who are living life as survivors have practiced our surface behaviors — a way to cover life’s hurts, disappointments and insecurities. Some days we cover better than others, some days we are of good cheer and help others with their struggles. Then there are some days when pain is so great, we count the seconds as they go by; we must seek the light and look to our dearest for love and belonging, support and love.

I am finding renewed strength in my cousin’s caring written word. A new perspective on pain; perhaps you might want to look it over:

https://iamsteveaustin.com/author/iamsteveaustin/

Serenity!Now

New Website Offers Education, Encouragement and Empowerment to Those in Chronic Pain

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Hurting? You are not alone!

An estimated 100 million Americans live in chronic pain – often feeling isolated, powerless and looking for support. A new online community, http://www.hopespringsvillage.org, launched this week by the JSA Chronic Disease Foundation seeks to relieve those feelings and offer encouragement and a sense of belonging to people in pain and those who care for them.

 “More than just a Web site, Hope Springs is a community alive with opportunities for visitors to empower themselves in an environment of support and education,” says Hope Springs Village founder, Janet S. Austin, PhD. Visitors to Hope Springs can “visit” any or all of a dozen buildings as they wish, including a pharmacy where they will find important information about the medications they take for pain, a café where they will learn to make healthy food choices to relieve inflammation and pain, a chapel where they will discover the effects of spirituality and prayer on pain perception and health and much, much more.

Over time, visitors will also find hidden within the community keys to solve the password needed to join the community and unlock the power within themselves to bring new life and light into the darkness of chronic disease pain.  

The idea of the Hope Spring Village was born after an expert panel convened by the National Institutes of Health concluded that an individualized, patient-centered approach was needed to treat and monitor those affected by chronic pain. At the core of the patient-centered approach is an empowered patient. The Hope Springs community is alive with opportunities for patients and their caregivers to learn empowerment skills. 

Serenity!Now

Stop the Pain…I Want Off!

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An expert panel was convened by the National Institutes of Health (NIH), US Department of Health and Human Services, to discuss how to treat and monitor the estimated 100 million Americans in chronic pain.  The medical community acknowledges relentless pain exists, yet there are numerous misconceptions out there from silently condescending judgement to open condemnation by loved ones, strangers, and health professionals of those desperately needing pain management to endure the day.

When I was diagnosed in my teens some 40+ years ago, medications for inflammatory rheumatoid disease were ineffective in halting the destruction of joints, cartilage, tendons, and bones causing permanent damage and losses. Each day for most of my life and the lives of hundreds of thousands of others has been complicated by consequences of on-going, and many times incapacitating, acute pain due to disease(s) with no known cure. Complex chronic complications add heavily to an overburdened patient.

The typical non-affected individual has nothing in their life experiences to compare and understand chronic disease pain.  Since it is invisible to the eye, it is difficult to understand.  Their silent, and at times whispered, judgement breaks the heart.

We can’t control the thoughts and unkind words of others.  Many of us have found that a grateful attitude of joy goes a long way in coping with the discomfort, helplessness, and relentless hurts. It is never easy, but it has rewards.  I have a dear friend (an angel) in my life who has been in long-standing acute pain for several years — not weeks or months — years!  She is a light in my life; she has a strong spirit and is one of my support team. I am so blessed to have family and friends who have been with me for 40+ years, others with fewer years but immeasurable love.

Life with chronic disease pain is hard — mentally and physically.  I read recently the older you get, the more you realize that it isn’t about the material things or pride or ego. It’s about our hearts and who they beat for.  I have been fortunate to know of the work at NIH and of researchers who have dedicated their life’s work and hearts to answering complex questions surrounding disease.  Chronic pain has been named a priority resulting in the institutes and centers intensively collaborating together to answer our cry to stop the pain. We are being heard and together we can find strength in knowing we are not alone.

Serenity!Now

Are You KIDDING Me?

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Yesterday, I injured my arm trying to put on a pair of “normal” jeans! Until you are forced to wear elastic band pants, you may not know the exhilaration of getting into regular clothing! Optimism was high before the crash – Craig, my husband who has ALS, got in on this special event and at one point tried to pull the sides together with his powerful jaw! Unfortunately, the button wouldn’t fasten. Having to cry “uncle” we stopped and that’s when I realized I could no longer lift my left shoulder. The struggle caused the long-standing rheumatoid arthritis affecting my shoulder to flare.

So, on went the old girl pants.  Next came socks and shoes. The left foot and leg cooperated beautifully. But the right knee was swollen and wouldn’t bend! Nor would the left shoulder reach to assist. Still needing to brush my hair, the doorbell rang and I’m ready to scream! I threw on a shirt and went to the door to let my niece in. I’m greeted with a hug and “Aunt Jan, why do you only have 1 shoe on?”

Em put my sock and shoe on asking if we were still going to IHOP. Heck yes! Craig’s walker went in the car with us and off we drove. With my hair looking like a tumble weed we arrived and hobble out of the handicap parking space. Since my shoulder hurt to move it, Em helped Craig eat his raspberry crepes and I dug into my “Senior Special!”

As things quietened down, Craig looked up at me and grinned saying “Baby, did you know your shirt is on inside out?!?” Yep, I still gots style! Strutting in my old girl pants!!