Interview with author Mary Jane Gonzales and book give away!

I am so happy to welcome, author, poet, blogger, and advocate for chronic illness awareness, Mary Jane Gonzales! Congratulations on publishing your 10th book, A Voice Unheard. 

Because you are doing give-aways on your book event page all week, I thought we would join in on the fun here as well! The first person who comments below on this interview will receive your newly released book! (If you are the first to comment, I will message you to make arrangements).

 

(I had the great privilege of reading A Voice Unheard recently, and I immediately asked Ms. Gonzales for an exclusive interview. I know this book will impact every single reader, both the disabled, and abled alike.) 

 

You have very generously allowed your powerful poetry to be shared here on aBodyofHope in the past, but this is your first interview here (and mine as well). I’m excited! Shall we begin? 

 

 

1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?

Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”! 

2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?

This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.

 

3. Aside from writing, what do you enjoy doing in your free time?

My pastimes would be reading, writing and crafting (especially, card making and scrap booking).

 

4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?

Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.

 

5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?

Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about  a community/ involving members of  the community. I found that to be a bit scary, actually.

Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!

Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.

  

6. How would you describe your personal writing process?

(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)

I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.

7. What is your favorite part of being an author?

My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.

What is your least favorite part of being an author? 

My least favorite part is marketing i.e. self promotion.

8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?

What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.

9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?

Because they need to be told!

 

10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?

Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.

I wrote it now because I couldn’t be silent anymore.

11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?

I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.

A Voice Unheard is available for your Nook at Barnes and Noble. It is also available for ebook download for your tablet, or cellphone and on PDF for your computer: Smashwords. 

Dear Body, I’m breaking up with you

Where to Go by SheerHeart

There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.

This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….

Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!

Body, I break up with you. Sorry, not sorry.

I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me. 

This is my self love. This is my self compassion. This is my choice.

I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you! 

I choose, I choose, I choose.

My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.

I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.

Sign here X  _________________

Please support Rare Disease Day on February 29th. www.rarediseaseday.us

Should Children take Oxycontin? FDA Approval for Pediatric Pain

Happy Pills by Sheylan Moragame

On August 14th, 2015, the FDA approved children as young as 11 years old for the drug Oxycontin. There is public outrage and disbelief at the thought of children so young taking such powerful opioids in the midst of the current “prescription drug crisis.” Although there is a great deal of public awareness for prescription drug addiction, it’s important we also understand who this medication is intended for.

I found the article about the new FDA approval on the timeline of a friend who is passionate about raising awareness for addiction issues. She and her friends view this news very differently than I do because of our individual experiences with opioid medications. On one end, prescription pain medications can be abused, cause addiction, ruin lives, and even cause fatal overdose, tragically. In my experience as a chronic pain survivor, I view pain medications like Oxycontin as a tool for temporarily relieving the suffering of a person in severe ongoing pain, the improvement of quality of life, and in the worst cases, prescription pain management can be life-saving. 

The drug Oxycontin or “Oxy” is widely known for its addictive properties and high performance on the black market. The drug was reformulated 5 years ago to make it more difficult for individuals abusing it to get a “fast high,” though its reputation has not diminished.

This is Lucie. She has Superior Mensentric Arterial Syndrome and Complex Regional Pain Syndrome. She was active and healthy until the excruciating pain took over her body. Now, she is in pain all day, every day and night, begging her mother to take away her pain. [How you can help Lucie]

This is K. Chandler Rosemont’s experience in physical therapy. She has CRPS/RSD, or the childhood name RND. Because the nerves are so hypersensitive in the disease, even the slightest touch and movements are unspeakably painful.

To those reading this who have loved ones who suffer from addiction as I do, you may be thinking that making pain medication more widely available is the worst thing to do in this prescription drug climate. Actually, pain medications are becoming harder and harder for doctors to prescribe. Every year, the regulations tighten around doctors prescribing month to month opioid pain medications without refills, blood tests and urine samples are often required (state by state basis), there are strict patient contracts, etc. If a patient does not comply, they are terminated as a patient, and the black mark on their medical record follows them. That is protocol for pain management, and it causes pain patients to view their medications as seriously as they view their pain. (Read more in my article, Pain Pills: Chronic Pain Sufferers Speak)

In response to the growing public awareness of the problems surrounding prescription pain medication addiction, both chronic pain patients and doctors are under tighter regulations each year. However, since 2004, children diagnosed with chronic pain has increased by over 800%! So this approval by the FDA is certainly not unwarranted.

Personally, I believe the bigger problem lies with non-pain management doctors prescribing pain medication with a cavalier attitude. This past year, one of my relatives was prescribed a pain medication after she was seen for a sore throat. Dentists often prescribe a full month’s supply of strong pain medication before knowing whether or not the patient will be able to tolerate their minor after-procedure pain. Studies show that less than 3% of chronic pain and cancer pain patients are actually becoming addicted to their pain medication; chronic pain patients can typically stop taking the medication on their own. However, when pain medication is prescribed for acute, healing injuries without concern of addiction history, doctors don’t consider if the short-term pain could be tolerated without the medication, or if there is an alternative to manage the pain, the average person is put at greater risk for becoming addicted.

It is difficult to think of children suffering in excruciating, non-stop, pain every day, but this is a reality we cannot ignore. Complex Regional Pain Syndrome is a debilitating neurological pain disease that has deteriorating effects on muscle tissue, it shrinks bone, and changes the brain and nervous system to feel pain at an outrageous level. CRPS also causes the skin around the “affected area” to turn purple, black, blue, causes swelling, changes skin temperature, and the skin can begin to deteriorate as well. It is considered more painful than amputation, childbirth, or cancer pain, and there are children living this nightmare every single day. Children suffer from a variety of neurological and muskuloskeletal pain conditions just like adults do. Children are treated for disabling chronic migraines, Childhood Fibromyalgia, and tragically, children are treated for cancer pain.

Oxycontin has been approved by the FDA for pediatric prescription for severe cases of chronic pain and end of life care in children ages 11 to 16. Before it can be prescribed on a regular basis, there is a protocol to make sure the child can tolerate the medication safely. Interestingly, there is only one other opioid pain medication approved for pediatric pain management- the Fentanyl Pain Patch. If you have ever been prescribed any kind of medication to help manage a problem with your own health, you know that it can require trying a few different types of similar medications before you and your doctor find one that helps you without causing intolerable side effects. Until now, children suffering from debilitating chronic pain had only one FDA-approved option to try for pain medication.

There is still the question of theft. Pain medication is often stolen by relatives or house guests who struggle with addiction. I have heard many stories of spouses and caregivers who skim a few pain pills each month when they pick up at the pharmacy. One fellow pain patient told me she kept her medications in a heavy locked safe that was bolted down, but a family member still managed to steal her safe and medications inside. This is a real issue that should be part of the awareness of opioid pain medication addiction along with the patient’s responsibility to protect his or her medications. However, just because there is a public addiction issue does not mean individuals in pain should be deprived of proper care. One problem does not supersede the other. Would you tell a child screaming and writhing in pain every day without sleep, unable to go to school or play with her friends that she should be denied some relief? 

I personally think that a child suffering should have access to pain medications while they seek out other methods of treatments. We know that children respond better to alternative treatments than adults do; however, that doesn’t mean they should have to wait months or years while trying treatments and procedures to have improved quality of life, nor should they have to suffer for years until they are “old enough” to receive proper pain management.

I am interested in your thoughts. Please share them below in the comments section.

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Sources:

http://nationalpainreport.com/fda-approves-opioids-for-some-children-8827137.html

http://www.nbcnews.com/health/health-news/fda-approves-oxycontin-children-young-11-n409621

http://www.drugfreeworld.org/drugfacts/painkillers/warning-signs-of-prescription-painkiller-dependency.html

http://www.medscape.com/viewarticle/807349

Stronger than Monsters: Chronic Pain

You Could Feel The Sky | by BorninNovember

(Trigger Warning: Addresses thoughts of death.)

Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”

When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”

Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.

Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.

Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.

*

All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.

The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.

I thought I saw into my future of pain, but I could never have foreseen exactly THIS.

This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.

Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.

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“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”

Isaiah 40:31

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”  Joshua 1:9

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Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.

thelastsparrow.etsy.com

Etsy.com/shop/borninnovember

Pain Pills: Chronic Pain Sufferers Speak

Flat Earth Designs: Etsy

There is a great debate in America regarding prescription pain medication. From someone who hears this issue from fellow chronic pain sufferers regularly, we have a dog in the fight, too.

Those with chronic, non-cancer pain have been criminalized in the last 10 years along with their doctors because of the medications being prescribed…wait, no…flip that, reverse it. In the last 10 years, because of individuals abusing their pain medications, addicts buying opioids on the black market, and doctors over-prescribing irresponsibly, chronic pain patients, and their doctors have been treated like criminals.

Founding a support group for Complex Regional Pain Syndrome: known as the most painful condition one can endure, let me be clear that even people with the worst possible pain do not want to take pain medication. Why not? When they are screaming, crying, homebound and barely holding on, why won’t they take 1 tiny little pill? For one, they are afraid of becoming an addict! They are worried their family will think less of them. They are anxious that if their doctors prescribe it once and it helps, how will they ask for a refill without sounding like the “pill seekers” they hear about on television? Too many times people are nervous about taking their prescribed medication for severe chronic pain because of what they have seen on talk shows and read about on the internet.

Well, here’s something else to read…

A study in 2007 sampled 15,000 veterans with chronic pain (Edlund et al.). They were all given opioids, and only 2% abused his or her medications. I have read other studies like these for chronic and cancer pain in which the addiction or abuse rate is always extremely low. Apparently, people in excruciating pain, 24/7, every single day for years are managing his or her pain medication AS PRESCRIBED. This may shock some of those television personalities.

Why is it that those with chronic pain are much less likely to become addicted? In those without chronic pain, opioids cause a sense of euphoria. For those WITH chronic pain, the medication does not match or overcome the pain. A neuropathic pain study published in 2003 by the New England Journal of Medicine found that opioid pain medication only gave 36% pain reduction at the highest dose possible before side effects of the drug were intolerable. Those with such extreme pain continue to feel pain; therefore, how can there be a medicated euphoria? Maybe this is why there is a much lower rate of addiction in chronic and terminal pain.

Many of those I encounter are so conservative with their medications. They take as little as possible, even when pain is high. When pain is low enough to tolerate, most don’t take any pain medications. No one wants to take any type of medications. Those I encounter do what is available to them to manage pain: treatments, therapies, procedures, etc. Pain medication is seen as a means to an end. A short-term negotiation until there is a better pain relieving strategy. But for many, it is a necessary part of living, coping, and functioning with painful neurological disease.

Doctors who treat chronic pain exclusively are held to increasingly high protocols by the government. There are more changes all the time concerning how they can and cannot care for their ailing patients. With more government restrictions, more paperwork, more required seminars for doctors and nurses… Do you think MORE attention and time is being given to patients, or less? If you are a patient who sees a pain management specialist, you would be expected to sign a patient contract. The doctor has communication with your pharmacist, and you would be expected to furnish monthly urine and/ or blood depending upon which state you live in. Because of the current climate regarding these “controlled substances,” those with painful chronic illnesses like RSD, Peripheral Neuropathy, and Trigeminal Neuralgia who go to a hospital for an emergency may be treated like a criminal until their pain doctors can be contacted. Imagine if you were the one having a medical emergency!

Just a side note, in my research I learned that a doctor’s office can be thought of as a “pill mill” if 50% or more of its patients are treated for pain management, even if they offer physical therapy, biofeedback, counseling, acupuncture, interventional pain therapies, etc. If the doctor is chief at the local hospital, she still runs a “pill mill” up the road because she primarily treats people with chronic pain or cancer pain. Nice, right? CDC Pain Clinic Regulations

Whether you are judging someone else with chronic pain for taking pain medication, or if you are judging yourself because you think it means you are somehow weaker for taking your meds, please ask yourself a couple of questions. If you had another condition… cancer perhaps, would you feel guilty or like you had caved in by starting on the prescribed chemotherapy protocol? If you had diabetes, would you deprive yourself of your insulin, only taking half the dose, when you are on the verge of going into a diabetic coma? Do you feel shameful about the other medications and treatments you are being prescribed currently for pain?

If you are taking your medication as prescribed, then is your concern about becoming addicted, or is it the social stigma you worry about? For those judging, if your sister, son, or elderly grandfather were suddenly touched by crippling degenerative neurological pain, wouldn’t you want them to have the best Quality of Life possible while they explore ALL available treatment options? If every treatment they tried in the next 5 years failed to help, but you knew pain medication would keep them functioning through the pain, would you still want them to suffer the next 5 years without pain medication?

Pain medications can be dangerous, yes! They ABSOLUTELY should be taken with caution, with respect, and with the same seriousness with which you regard your disease. Along with all of the voices yelling about the pain medication issues, people who have chronic pain tend to have quieter voices, but please remember, we are still speaking.

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More resources:

DEA Rescheduling Hydrocodone

The Doctor’s Dilemma: opiate analgesics and chronic pain

How Does Chronic Pain Management Work?

“Pill Rat”

Flat Earth Designs on Etsy. “Pill Rat” art print by Nathaniel Bibaud.

Thank you so much Nathaniel. Go buy something awesome from his shop!