December, 2018

Life with Lupus: Light and Pericarditis

I thought to check in and share what the latest experiences have been regarding light in my life of lupus. As the days grow shorter, I celebrate the darkness. Less light makes life so much easier. Exposure to UVA and UVB can jump start a lupus flare.

On the downside, I find this time of year with the slant of the sun, glare increases: off the dining table, the tile, granite. Ha! Even Christmas trees are covered in a light that glares.

Thinking that the glare is the trigger, I was able to get prescription sunglasses. Working with them on in front of my laptop and using less precaution in the house, not darting through bright rooms, still resulted in a flare. There's the possibility of some other variable in the mix, but my gut is that sunglasses, alone, are not enough to allow me to sit in the light inside our house. I haven't been able to find research on such specific qualities of light.

Aside from sitting in a dark room for a couple days to recover from flares, my latest lupus manifestation is pericarditis. A $15,000 ER visit and further followup tests gave me this diagnosis. Inflammation triggers fluid in the heart sac which very much mirrors a heart attack. The fluid and pain eventually pass, in that case after 3 hours. I've read it can linger days or weeks. Scarring often results, which exacerbates the condition. So there's my new symptom that warns me to escape the light, work less, and breathe. Since the hospital visit, I've only had short episodes.

One note: even with insurance, many hospitals will adjust their fees with financial aid according to your income. It's worth submitting the paperwork, often found online.

The first image above is my collage from the former site, Polyvore, and the second is linked to the Mayo Clinic source.

While I appreciate the dark, I think of those struggling with depression in the absence of sunlight this December. Blessings on you.

A Gift of Words: Archbishop Tutu

“Dear Child of God, you are loved with a love that nothing can shake, a love that loved you long before you were created, a love that will be there long after everything has disappeared. You are precious, with a preciousness that is totally quite immeasurable. And God wants you to be like God. Filled with life and goodness and laughter—and joy.

“God, who is forever pouring out God’s whole being from all eternity, wants you to flourish. God wants you to be filled with joy and excitement and ever longing to be able to find what is so beautiful in God’s creation: the compassion of so many, the caring, the sharing. And God says, Please, my child, help me. Help me to spread love and laughter and joy and compassion. And you know what, my child? As you do this—hey, presto—you discover joy. Joy, which you had not sought, comes as the gift, as almost the reward for this non-self-regarding caring for others.” Desmond Tutu

Collage: my art from the former website, Polyvore

Open Letter: To the Annoyed-by-Protesters

My collage from the former site, Polyvore

Twice in one day, I brushed against people who are annoyed by protesters.

1. The first claimed that after losing the House of Representatives, she would not be protesting as so many others had recently. She had restraint and would acquiesce to the democratic process.

2. The second complained he was tired of people marching and doing nothing.

So, I'd like to address these two. The first I know has walked through tragedy, has been greatly hurt by the church. The second I know works with pediatric cancer patients.

To the Annoyed,

I ask you to tap into the pain you have experienced. Recall the grief and anguish you have bravely walked. Now, without setting aside your politics and belief systems, I ask you to consider this: the folks who are walking, carrying signs, shouting, and gathering are people who have been raped, shot, sexually harassed, denied rights, silenced, marginalized, excluded, bullied, suffered prejudice, are threatened, and more. These are hurting and crying out for their loved ones who have been hurt. They are worried about our earth and its inhabitants.

The marching are gathering because, collectively, they have experienced pain and injustice. Together, they are shouting to be seen and heard for change. Each has dignity and belongs.

I ask you to make yourself vulnerable. Recall your own pain and then lean into theirs. Until you see the individuals, wounded as you have been, there is no room for empathy. There is no compassion and no problem solving. It doesn't matter if the wounds are from the same source or the same line of story. The hurt is common among us. 

The marching is not useless and doing nothing. The marching is calling out the pain. It is laying before the social consciousness injustices that must be addressed. It is motivating people to run for office. It is alerting leaders what matters to constituents. It is calling hope to rise from all corners, and it is inciting action for change.

In the words of Thich Nhat Hanh:

"We have to see that we are they and they are us. When we see their suffering, an arrow of compassion and love enters our hearts. We can love them, embrace them and find a way to help. Only then are we not overwhelmed by despair at their situation. Or our own."

My call applies to all in various parties and religious systems. These two people just happened to interact with me this week. The same empathetic action must be engaged by all for all. When our initial reaction is defensiveness, we can turn to wonder, instead.

Lean in. Empathize. Help.

I Reject Your Shame, Again

My collage from the former site, Polyvore

I'm in the midst of year two, reading about trauma and suffering. During that time, I've come to dwell on Dr. Brene Brown's studies on shame. Taking those concepts and looking at the rage and grief of survivors during the Kavanaugh fiasco, I have a few thoughts.

If anger is an acceptable secondary, social emotion covering other internal feelings, I'm pondering what else is underlying the nationwide outrage felt by so many sexual assault survivors, and what our critics don't understand. I, personally, felt betrayed, gut-punched, grieved, discarded, and ignored by the experience. And then I felt anger.

In Daring Greatly, Dr. Brown points to the 2011 study funded by the National Institute of Mental Health and the National Institute on Drug Abuse (Proceedings of the National Academy of Sciences, 108, 15: 6270-6275) and its conclusion: pain from social rejection and disconnection is real pain which the brain registers like it does physical pain. Speaking for myself and from my experience with sexual assault, I was shamed into silence by societal pressure in my childhood. I was further pained by this shame. 

Dr. Brown writes the antidote to shame is empathy. Because shame is a social concept, the social wound needs a social balm to heal. This is exchanged through sharing and dialogue. Recently, the assaulted in our country have found self-compassion to rise up and out of society's shaming message. We have found our voice to say, #MeToo, and this sexual assault behavior and shaming must stop. At a national level, we surged forward to stand by Dr. Ford. We believed her, regarding the horrific assault she endured. Witnessing her testimony, we relived our own assault for days, weeks. We entered the social arena where a balm could have been provided. Empathy could have been given. And it was given for a moment after Dr. Ford's testimony, and then it was withdrawn for a predetermined, desired vote.

After making herself completely vulnerable before a worldwide audience, Dr. Ford was left standing, not believed. Every survivor who stood at her side was left, told and shown we are still disconnected and unworthy of being listened to and believed. This pains us deeply. Our rage rises, above the pain.

So now, we continue to work hard to not feel shame. We reject the cultural shame that has tried to bury us again. We reject the president's paper-thin investigation and the majority of the senators' votes. We reject the opinion of those who judge us an angry mob and make no effort to understand and empathize. We stand shoulder-to-shoulder, shouting what has been done to us and repeated through the treatment of Dr. Ford. Even if society won't share empathy to balm our social wound, we will empathize with each other and every soul brave enough to share in our singing over the bones. We belong. We will not be quiet. I will not be shamed any longer. I reject shame. I will not be disconnected from the group because I was sexually assaulted. We, I, am worthy of love.

Trying to Survive: #believesurvivors

Trying to survive the ignorance and lack of compassion. #believesurvivors

#BelieveWomen, a Cultural Correction

My collage from the previous site, Polyvore

I'm seeing disagreement within the conversation concerning #believewomen. I'm hearing the debate among friends, as well as it being presented in media outlets. One view is that to #believewomen causes one to #doubtmen, and the action potentially dismantles the justice system. I disagree. To #believewomen is a cultural correction that causes the justice system to be engaged for all.

Anna Maria Archila, Maria Gallagher, Senator Flake, and an elevator:

“I didn’t tell anyone and you’re telling all women that they don’t matter, that they should just stay quiet because if they tell you what happened to them you are going to ignore them,” she said to Flake, who stood in the corner of the elevator looking down.

“Look at me when I’m talking to you,” the woman yelled. “You’re telling me that my assault doesn’t matter, that what happened to me doesn’t matter, that you’re going to let people who do these things into power.”

CBS This Morning

Judged an Angry Woman

My collage on the former site, Polyvore

It was recently concluded by some not currently walking beside me, that I have anger issues and need anger management therapy. It is interesting the persons are concerned about my anger and not Tom Chantry's angry felonies of physical assault against children, or his upcoming molestation trials. So, I have a few thoughts.

1. Women may be angry and express themselves in healthy ways. It is acceptable, as it was in the Women's March. Children may be angry and express themselves in healthy ways. It is acceptable, as it was in March for Our Lives. (It is a given in our society and already acceptable that men may be angry and express it.)

2. When I see the vulnerable oppressed and outcast by the powerful, I will be angry. This is compassion and full of light.

3. When I experience anger, like any other emotion, I acknowledge it, hold it, and it passes.

4. And then I act to help rectify the situation. Anger over injustice can fuel action which moves toward ending suffering and oppression. One may resist, run, seek help, listen, speak, support, march, litigate, legislate, paint, write, or more.

Emotions are part of humanity. They give a richness to life. We don't need to fear them. We don't need to hide, bury, or be ashamed of our emotions. We can hold each one, watch it pass, and compassion bloom.

For those who feel free to label me an angry woman, I challenge you to sit quietly. Remember what it was like to be seven years old. Now think of an esteemed adult who held the power in your life. Imagine that person assaulting you and telling you that if you tell anyone about your pain and fear, you will go to hell. Imagine your terror.

I can only hope you are moved to anger. Now, open yourself to compassion and act for another. 

Tom Chantry Trial and ARBCA Coverup

I write through life to understand and find truth. As I craft my memoir, the following experience crossed up and out of the pages of my experience. Here are my thoughts and current conclusions.

VerdeNews, Aug. 18, 2018 "Throughout the trial, the Association of Reformed Baptist Churches’ investigation into Chantry’s misconduct was mentioned. During that investigation more than 20 years ago, nothing was reported to the police. Tuesday, Judge Astrowsky warned both counselors to not derail too much into ARBCA as they are not being tried in this case. 'If this were a trial of ARBCA, they’d be convicted,' he said. 'But that’s not what this trial is about.'"



This man, Tom Chantry, whom County Prosecutor Susan Eazer called a "sick, twisted, pedophile," ran from the church he pastored in Prescott, AZ, to my congregation where I attended for thirty years. There, not knowing his charges, he was welcomed, sat among us and our children, preached, and was sent on with blessings to work in an elementary school and eventually pastor another church in Wisconsin.

The Association of Reformed Baptist Churches of America investigated Chantry's crimes in AZ, sealed their findings which included his "punishing children for his own pleasure." They created a second, modified document and shared it with victims' parents. A criminal offense was committed when the police were not notified of Chantry's crimes by the association.

Illinois police have a documented case of physical assault against a five year old in the elementary school Chantry went to following his time in our congregation. The coverup enabled more victimization. 

I was told he was running from a misunderstanding: "It was just spankings." I was told, "He just needs a wife." 

The jury found Chantry guilty of two counts of physical assault. He was determined not guilty of molesting a four year old and not guilty in one count of assault. The four counts of molestation will be retried. It was originally reported one juror, with a prejudice against victims, falsely gained entry onto the jury and created the hung jury/mistrial. As well, AZ law does not consider rubbing the bare bottom of a child a sexual assault. I find this unbelievable.

Chantry has committed and been convicted of felonies. This is not "just spankings." He is not a saint suffering for upholding the Bible and the discipline of a child. He is not a Joseph, falsely accused and imprisoned. He is convicted, with more convictions possibly in the future.

I grieve for the victims who will have to once again take the stand. I'm thankful the prosecutor has not grown weary. I watch for civil suits to follow and more victims to possibly come forward as justice is restored. The State's Attorneys Office for Yavapai County, AZ is planning to prosecute the men in ARBCA who covered up the crimes.

So what do we need? We need to educate churches and leaders to care well for the victims of assault. We need a heart for the victims, an upholding of their value and worth. We need to listen and offer all resources for recovery. Along with justice, we need help for the perpetrators, so often victims themselves. There is no room for nepotism, denial, covering, or the end justifying the means. There is no room for error as these are souls, made in the image of God, and they have been hurt and are hurting. There is no room for silence. 

Rose of Jericho, a Resurrection Plant

My dear friend, Christie Waldron, brought me a rose of Jericho, a resurrection plant. What joy to see the symbolism of this beauty. From Wikipedia:

S. lepidophylla is noted for its ability to survive almost complete desiccation; during dry weather in its native habitat, its stems curl into a tight ball and uncurl only when exposed to moisture.

Truly, #beautyallaround and, "There's hope. Look."

Lovely, Dark, and Deep: Justina Chen

The beautiful dedication, a treasure

So how does it go when your bestie is asked by Scholastic, Arthur A. Levine Books, to write a story of a teen living a sun-limited life when you yourself, a YA author, have lupus? How is it for your award-winning YA author bestie who has walked beside you in the dark for years to write the work?

It is strange. Justina Chen has completed the beautiful Lovely, Dark, and Deep while I am working on my own memoir which will share life with multiple autoimmune diseases, including lupus. As Justina's book launches, I have not yet begun to write a YA novel featuring the journey of a teen with lupus, or RA, or Sjogren's. I'm still living the experiences and gathering meaning, but I wholeheartedly celebrate Justina's work. Here are four quotes I gathered while thinking through the experience:

One

With rheumatoid arthritis, lupus, and Sjogren’s syndrome among my autoimmune diseases, I am not defined by them, not denying, praising, or damning them. I am here looking for light and being filled.

Two

I hope the beautiful Lovely,Dark, and Deep shines into the darkest corridors readers pass through.

Three

As I complete my memoir, it was fascinating to have Justina, who has walked so lovingly and faithfully beside me in the dark, write about a teen adjusting to a sun-limited life. Justina is Zoe Washburne to my River Tam.

Four

It is imperative health care is available to all. Medications for autoimmune disease have exorbitant costs. Prices can prevent one from living and contributing to society with full potential. We can’t leave anyone in the dark alone.  

Godspeed to Lovely, Dark, and Deep. May it alight in the hands of beloved readers and spark.

"A luminous read that will rekindle your faith in the indomitable human spirit." -- Matthew Quick, author of The Silver Linings Playbook

Lovely, Dark, and Deep

by Justina Chen

Arthur A. Levine Books, July 31, 2018

Dear Starbucks: Gold Star Marketing

In a world seeking light in the midst of lies, corruption, famine, and natural disaster, this pales, but I'm taking a sec to note it. This recent email is not helpful. In the least, it is not socially responsible marketing:

YOUR STATUS HAS CHANGED. 

YOU'RE BACK TO GREEN.

Since you didn't collect 300 stars in 12 months, you're at the green level again and your star count has been set to zero. 

You say I am no longer a Gold Star Member. You label me Green. I will buy coffee when I choose to buy coffee. This only makes me not want to buy coffee at Starbucks. I reject your label. I wish I had noticed this when you designated me Gold.

Yes, I wrote a book with the former President of Starbucks, Howard Behar, titled The Magic Cup. But I'll see you when I'd like to. Apparently, you can't see the gold star stuck to my forehead. I put it there, and you don't get to take it away. My status hasn't changed.

Roll your eyes, but rethink this marketing message. 

Lorie Ann Grover

#wordsmatter #Starbucks

Dry Eye: Solutions, Part Seven, True Tear

I tried a device called True Tear, that I wanted to share. It relies on neurostimulation. Essentially, it fits up your noise, zaps the nerve at the top of your nasal cavity which in turn makes your eyes tear.

It doesn't hurt, but it may be a tad uncomfortable. Side effects can be headache and nosebleeds. The cost for me was $1,200 with $100 new tips needed each month. Neither is covered by insurance. The aim is to replace the use of artificial tears. 

I'm returning the device within thirty days of purchase for a full refund as I didn't find my eyes were able to tear with Sjogren's and my past cancer treatment. Other people are having success though. Here are more details. 

Article

Video

Dry Eyes: Part Six, TearCare

So, I had a new procedure added to the effort. In living with lupus, Sjogrens, and RA, I tried out TearCare by Sight Sciences for dry eye. This was similar to LipiFlow, but I found faster results. 

After the sticky tabs heated, the doctor then used little metal tongs with flat ends to squeeze my oil glands. It was uncomfortable, at times painful, but the result was worth it. As a test subject, I wasn't charged, but the procedure may end up being about $1,000 or so. I expect for it to be repeated as needed.

I recommend this. Specialty Eyecare can help you out. Onward!

Top Shelf: A Higher Loyalty

Feed my soul. I walk instep with James Comey. Here was a man caught in a web doing the best he could. Yes, I was furious with him before the election, but I understand. (Why does no one hold Anthony Weiner responsible?) Well done, Mr. Comey.

"The higher loyalty is to lasting values, most important the truth."

"We are experiencing a dangerous time in our country, with a political environment where basic facts are disputed, fundamental truth is questioned, lying is normalized, and unethical behavior is ignored, excused, or rewarded."

"They must ask themselves to what, or to who, they hold a higher loyalty: to partisan interests or to the pillars of democracy? Their silence is complicity--it is a choice--and somewhere deep down they must know that."

A Higher Loyalty

by James Comey

Flatiron Books, 2018

Publishers Weekly: Rights Report, Wonderful Me

Celia Lee at Scholastic/Cartwheel has bought world rights to Lorie Ann Grover's self-empowerment board book series, Wonderful Me, illustrated by Cocoretto. The series begins with two books, I Love All of Me and I Know I Can. Publication is scheduled for 2019; the author represented herself, and Emily Coggins at Astound represented the illustrators.

Publishers Weekly

Woohoo! :) 

Dry Eyes: Solutions, Part Five, Amniotic Membrane Bandage, Prokera

AMNIOTIC MEMBRANES! In my eye! For $3,500, for one eye, I'm wearing this bandage ring for a week. (My insurance pays 80%) The membranes, harvested from generous women who have C-sections, are reducing my inflammation. It's not possible to see through the lens, especially as it clouds over time, so I am wearing a patch. The ring is uncomfortable.

The brand I am using is Prokera. The insertion and removal (I was checked midway) is simple. The contact is about the size of a quarter. If feasible, the other eye may be treated or this one repeated.

I've received several messages from folks seeking help for their eyes. Maybe this option will be useful to another, as well. I'll update when results are in.

Note: my treatment is for Sjogren's and Lupus, dry eye.