#HAWMC #Sunday Selfie #Marriage #Caregiver

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 27 

“Sunday Selfie: Post your favorite picture of yourself. Don’t be shy, it’s time to shine!”

This is easy. My wedding day. Not a selfie. 

It’s my favorite picture of myself because I was young, healthy, vibrant and strong. Most of all, I was happy and content. This picture was taken on my wedding day. 1980. The world was my oyster. No physical boundaries, full of joy, hope and endless aspirations. On this day, there was no thought of sickness, heartache or trouble. No thought of loss, aging or untenable situations or impossible circumstances. The future was bright. We had freedom and exuberance. However, the marriage vows are for ” better and worse.” When the worse happens, that’s when you find out just how strong the marriage bond is. The man next to me became my caregiver and took my mother in to live with us. “For better or worse, for richer for poorer, in sickness and in health, till death do us part.” Amen. ❤️

Just to give you some perspective. This was written after a night filled with horrible pain from dystonia. I worked physically hard all day yesterday. It was unavoidable. I woke up feeling exhausted , but, it is time for my mother’s shower. As I help her take a shower, tears of pain fall from my eyes to the floor. They are indistinguishable from the drops of water coming from her body as we towel it dry. In spite of terrible circumstances, you can still create beautiful art. The pain is temporary. The art and memories last forever. 😀

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#HAWAC #Care Page for the newly diagnosed #TBI #brain injury patient.” by Janice Tindle 

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 26

“Time to use all your knowledge and experience as
an HA! Create a “Care Page” for newly diagnosed
patients. Pull together 5 of your own blogs that
could help a newly diagnosed patient and include 5
external resources you find helpful.”

I’m so glad for this writing challenge because it will be a very nice resource for anyone who has suffered a traumatic brain injury. I always try to “keep it real” by telling you my story and what worked or didn’t work for me. If you have a TBI and are new to my blog, this is the condensed version! Enjoy! 

1. Hope, Faith and Love. These are your most precious resources. Collect them up and always keep them within your sight and reach. 


2. You are still beautiful and valuable. 


3. How to get others to understand what you’re going through.


4. Do something, big or little, to make a difference in the lives of others with your condition. 



5. Contact, learn and heal with fellow sufferers. 


5 External Resources 






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#HAWAC #Healthcare Landscape Change; ” The 30 second judgement.”  by Janice Tindle 

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 25

“As health activists, we are on a mission to innovate healthcare. If you could change one thing in the healthcare landscape right now, what would it be?”

This is something that really annoys me. The 15 minutes you get for your doctor visit. It’s okay for you wait 1-2 hours in the waiting room, but, when the doctor, after making you wait, comes in and hurriedly makes a diagnosis and comment that goes into your permanent medical record, it hardly seems fair, does it? 

If you’re a patient with a chronic illness and you’ve been sitting and waiting that long, you’re tired, sick, and in pain. Maybe you’re a little anxious or at your wits end. After all, it’s been hours since you left your home. Maybe you’ve been listening to the conversations of other patients and their problems. Perhaps you’ve read one those health or medical magazines that tell you to “ask your doctor if this is right for you.” You have your list of questions and concerns and your trying to figure out how to get them all answered in 15 minutes. 

You know the drill. The nurse comes in and takes your vitals, asks what medications your on and why your there. They ask about changes from your last appointment. Then they leave. 

You sit there, on the exam table, legs dangling, waiting. You wait some more. You look at your phone. You’ve been here over two hours now.  You’re late for the next appointment. That doctor charges $25.00 for no shows and if you miss it, you’ll have to wait months for a new appointment. Should you call? The sign on the wall says, “Please turn off your cell phone.” Just then, the doctor comes in with a computer in hand. 

” So what brings you in today?” They sit down at the desk and begin to read and type. You’re asked the same questions that the nurse asked you a little while ago. You answer. The doctor types. More questions. More answers. The decision is made. 

You get a script. You try to address the questions you have on the crumbled up piece of paper that you’ve been clenching in your fist. There’s no time. The doctor gets up and moves towards the door. Except for the vitals, you were never touched. There was no physical exam. You try to voice a concern and the doctor’s hand goes on the door knob.

” I’m sorry, but your time is up, you’ll have to discuss that at your next appointment or call the PA and make an appointment. ” As they complete the sentence, they close the door behind them. 

You feel frustrated, exasperated and dejected. Most of all, you still feel the same way as you did before you left the house. You don’t know what to do about your condition or how to improve. 

The nurse comes back in and hands you your script and check out papers. You’re directed to check out where they make your next appointment. You look at your diagnosis for today’s visit. All the same conditions are there except the doctor has added a new one. Anxiety. You leave, finish your day, go back to your home and fall into bed. 

These are the doctor appointments that I would like to see change for people with chronic illness. 

This was just a fictional scenario, but, it does still happen to patients in the healthcare system today. The business of illness has at times, overshadowed the life of the patient. 

Fortunately, for me, this doesn’t happen anymore. It doesn’t because I don’t go to doctors who are under this insurance and corporate fueled system of care.

When I was a little girl. I had to wait in a big waiting room to see the neighborhood family doctor. There were no appointments. You just showed up, took a seat, and waited. Sometimes my mother brought me lunch. Because I loved to read, I didn’t mind sitting there for hours. The difference was, when the doctor finally did see you, you got a full physical, all of his time and attention, and sometimes a procedure. He even stocked his medicine. I’ll be writing about him soon. He was worth the wait.  

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#HAWMC “Did you just say what I think you just said?”  by Janice Tindle 

The WEGOHEALTH Activist 30 Day Writing Challenge, Day 23

“Say WHAT?! What’s the most ridiculous thing
you’ve heard about health or your condition. Was
there any context? What did you think at the time
you heard it – and what do you think of it now?”

About a year after my traumatic brain injury, my rehabilitation therapist got me into a brand new study that was being done to diagnose brain injury. It has been written up and talked about quite a bit lately, but at the time, I was one of the first to experience a very small MRI that took fiber tracking images of the brain. The machine was very loud, it vibrated and I was in there a long time. That in itself would have been enough to rattle anyone, but it was especially difficult for me because I was in migraine when I went in, and in excruciating migraine when I came out. I remember praying the whole time saying, ” The Lords Prayer ” over and over just to keep myself from freaking out to the point of no return. I saw flashing lights, jagged lines, and bursts of exploding auras. My head felt like it was on fire. My body was sweating profusely and it felt like I could barely breathe. I tried not to think about how small the inside of that MRI was. I kept my arms clutched up against me and yet they still were touching the cold metal sides. 

Did I mention that I’m claustrophobic? 

I held on to the little ball that they give you to push if you get into trouble like it was a direct call button to God. I wanted to push it and get out, but I wanted something else even more. I wanted to be part of the reason and solution to understanding brain injury. I wanted the personal satisfaction that I helped bring an end to the suffering of those who aren’t believed about their brain injury. I wanted to be able to say that I was part of the first trials that enabled doctors to believe that when a person said they were having difficulty with memory, cognition, mood or bodily functions, there would a MRI that the doctors could order that would show them that the person was indeed, telling them the truth. A human lie detector to wipe out the lines between mental illness, malingering and brain damage. That’s how I looked it. I was proud of my courage. It was, and for reasons that I can’t explain fully, the bravest thing I’ve ever done in my life. 

It was probably the most I ever did during a migraine, but, I did it for humanity and I did it for myself. I wanted to put an end to my own mistreatment. The latter didn’t quite happen, but I can say that I did everything I could to help myself and other brain injured people in the best way I knew at the time.

When I came out of the MRI, I was dizzy, disoriented and my head was pounding like a locomotive with a engine full of fiery hot coal. It was on track into Hades and I was along for the ride. 

I was given an ice pack and a bottle of water. I took another Valium and a pain pill. And then it happened.  I was sitting in the inner waiting area shaking and spasmodic from my yet to be diagnosed dystonia and vestibular disorder. The nurse involved in the study was in the room with me along with my rehabilitation therapist. They were discussing my chronic, intense migraines. My therapist explained how severe and debilitating my migraines were to the nurse. She listened and then said to me,

” Janice, If I had as many migraines as you, I’d kill myself.”

Now up to that point, I had been sitting there trying to collect more courage for the long ride home in the bright sun. I was telling myself that I had just done something very important. I was telling myself that I if could survive that experience, I could survive anything. I was telling myself that I was stronger than my pain. I was thanking God for getting me through that MRI and asking that it please not be for nothing. Please let me just get home to bed.

And then I heard her say that. I don’t know, maybe she went to medical school with the same doctor who told me, ” You should be better by now.” The one who rolled his eyes, threw his hands up and wrote me off as a mental patient. I mean, the big deal health system had several doctors who said some really horrific things to me. Me, a brain injured woman with dystonia, vitamin D deficiency, Hasimoto’s disease, hypothyroidism, fibromyalgia, trigeminmal neuralgia and inner ear damage and all the symptoms with go along with those conditions. Me, a middle-aged woman with a double-fused cervical spine, osteoporosis, osteochrondropathy, osteoarthritis and several healed fractures. Me, a person living with many legitimate reasons for chronic pain, being psychologically abused by misdiagnosis,mismanagement and mistreatment. And yet, here I was, in a TBI study. One of two actually, at the same time.

And I’m told,

“If I had as many migraines as you, I’d kill myself.” 

Yes, she really did say that, a nurse, to me, after I had just volunteered in a study that might end up changing the way brain injury is diagnosed and treated.

No graditude. No compassion. No sympathy or support. Possibly the worst nurse ever.

But, I went back and I did it all again because they asked me. I did everything they asked of me.

When I got my first report, I had to meet  the neurosurgeon who was in charge of the study. My husband and I waited a very long time, because as he later told us, ” I’m a busy dude, man.” Anyway, he walked in and said, ”  You’re not crazy. You have a brain injury.” He then went on to show us the four areas of my brain that were damaged. They were the four areas in which  I had said I was having trouble. Of course, this was a preliminary study, so that’s why I went back for the second one. The next time, the MRI was bigger and not as loud, but I had to be in it for 45 more minutes past the time because they had to do some pictures over. 

However, I didn’t end up getting the pictures they said I would, so I’m not exactly sure what happened. 

I’m told the MRI will be available in a few years as a tool to diagnose and treat brain injury. I’m so glad. 

I still continue to have the same problems that I had then. I still get migraines. Every eighty-four days, I get Botox injections in my head, neck and shoulders. But I’m still here, so clearly, I’m a lot stronger than that nurse. 

In case you’re curious about what it’s like to get Botox for migraine and dystonia, I made a video. https://youtu.be/LKYNQtWpATA https://youtu.be/qmrUyxTKPgw

Don’t say things like that to people living with migraine . Especially to someone who is giving it their all everyday just to get through to the next one. Instead, thank them for their courage and offer a helping hand any way you can. 

We are all in this together. Let’s try to act that way, shall we? 

Janice Tindle holding a magazine with an article discussing the kind of study in which Janice participated.

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#HAWMC ” #TipTuesday is #Giving like a wee #philanthropist  by Janice Tindle 

The WEGOHEALTH Activist 39 Day Writing Challenge, Day 22

“Tip Tuesday! Have you mastered the hashtag? Figured out the Instagram algorithm? Or maybe you have a few tips to increase your blog followers. Whatever it is, share your expertise with your fellow HA’s- it’ll only make our community stronger!” 

This one has me stumped. I am really undereducated on these things and that’s why I don’t have more blog followers. I need help in this area myself! I haven’t had time to learn social media marketing in depth as I should. I want to, but this is the part of my brain injury that makes daily learning difficult. I do better if someone shows me rather then reading directions. Several times I did take the time to learn some things. I got them set up and working, but, the system was changed and I wasn’t able to adapt to the new format. Also, a lot of things need to be done on the computer and I have problems with my hands, so it’s hen-n-peck with one finger most of the time. That takes time and effort, so I try to compensate by writing something with substance and I hope for the best. 

Lame, I know. But that’s all I have on the technical side of things. ☹️️

What I’d love to talk about is actually a good tip for anyone. Giving. Not just of yourself and your time, which is an invaluable gift, but actually giving money to those in a crisis with a big immediate need. 

I’m talking about gifting an individual who has no other resources available to acquire something that will save their life or make it worth living. They need a transplant, a machine to keep them alive, expensive medicine, a device or a vehicle. Maybe they need caregivers or nurses, a special home or an adaptation to stay in their own home. Maybe they need a service animal or help paying the mountain of bills that have been accumulating because there just isn’t enough money. 

What can YOU do for ONE of those people? Hold a fundraiser, share their information with others, do a walk drive? Yes. You can do those things. It would be wonderful if you picked someone and made them your mission. But you’re in need yourself. You’re struggling too, you are stressed out and can’t take on one more thing, so now what? 

Well, almost everyone can spare $5.00. Almost everyone can miss a cup of coffee or a desert. Almost everyone can not buy that meaningless trinket at the $1.00 shop. I could recommend an organization, but this isn’t a solicitation. I know that if your a HA, chances are you already personally know someone who needs monatary assistance. 

So here’s my tip, and it’s just my personal opinion, because the WEGOHEALTH Writing Challenge asked, I feel that in order to be a good health activist or advocate you should experience giving on all levels. They don’t have be high levels. Little levels are okay. It will make you well-rounded and whole. 

There it is, my #TipTuesday advice, HA’s, find a person in monetary need and gift them something from your change purse because all those something’s add up and pretty soon they are healthier than they were before the gift. Isn’t that what’s it all about? 

Posted in brain cancer, brain tumor, caregiving, duty, honesty, hospice, human interest, humanity, inspirational, life changing events, motivational, people, rare disorder, thought provoking, tindle, traumatic brain injury | Tagged , , | Leave a comment

#HAWMC #TBI  #Writing  ” I write, therefore I am.”   by Janice Tindle 

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 20 

“What has been the highlight of your health activist journey? We want to hear all about it, perhaps a conference, a podcast or meeting a fellow HA. What made this experience so special?”

The highlight of my Health Activist journey is glaringly obvious. Writing. I have been a writer all my life, but, it never had a real meaning.  I have always wanted to become an author, but I had nothing really exciting to say. 

My love of writing began when I read my first book, ” Dick and Jane.” I loved that book. I read it over and over. I loved the illustrations. I loved the characters of Dick, Jane, Sally, Spot and Puff. I even named my first cat Puff because he reminded me of the orange tabby in the book. I loved that book because that was the book in which I learned to read. 

So, as soon I learned to read, I started writing. I submitted a poem to Jack and Jill magazine and to my astoundment, it was published! I taped it up on the wall of my bedroom. Sadly, the poem was lost. I have no memory of what it said, but I do remember how being published made me feel. It made me feel…heard. I felt validated and proud. I don’t recall my family making a big deal over it, but my teacher did. She encouraged me to write. She told me that all good writers read. So I read. A lot. I bought books with my allowance and I kept them neatly on the bookshelf in my room. I wrote, but I never submitted another thing to Jack and Jill magazine. I’m not sure why. Could have been a lack of encouragement. Or confidence. 

I became the librarian’s helper and by the time I finished grade school, I was the only one in the school that had read every single book in the library. One hundred and five books. At graduation, I received the Principal’s Award for that accomplishment. I still have that pin. To this day, it makes me proud because I was the only one that completed that task. I have to thank my teacher, Mrs. Fullerton, who was the librarian and music teacher, for being such an encouragement to me. She adored me. For a shy girl with thick glasses and skinny limbs, she was a lifesaver. She put me in all the music programs where I fit and always gave me a solo. At my eight grade graduation, my solo, “IF” by David Gates of Bread, got a standing ovation. I realized there too, of the power and excitement in artistic expression. I learned that for a few minutes, a few very important minutes, I could get people to listen to me. 

In high school, I wrote stories for assignments that were so real, one about epilepsy, for example, that I got called to the Principal’s office because  I had captured the experience of being an epileptic so well, they thought I had the condition! I explained that I was writing in ” the first person” for effect. I guess it worked! 

Flash forward to 2010. A car accident. A brain injury. A shaken brain and a lost soul. No more singing. No more recognizable personality. No more…me. I had to rebuild my life one section of myself at a time. It’s a terrible thing to lose yourself. To not feel comfortable in your own skin, to be lonely for your yourself, your thoughts, feelings, likes, expressions. To mourn your creative soul because in its place is this big mountain of confusion and pain. It’s like someone just came up to you, put a vacuum next to your brain and sucked you out. All of a sudden, there you are, just a hollow soul looking for all your bits and pieces and wondering, ” Where did I go?” ” Am I ever coming back?” ” Will I ever be the same again?” Suddenly, you’re Humpty Dumpty and no one can put you back together again. 

My writing started up again with emails to my attorney. Strange, angry, repetitive emails about my life and what was happening to me. They read like a diary and to this day, I can’t bare to read them because the pain and confusion is just so heartbreaking. I was very, very lost. 

However, my rehabilitation therapist encouraged me to write. She got me online and in touch with the world of the brain injured. That’s when things started to take shape. I realized pretty quickly that this was going to be an uphill battle. The day I discovered, from my point of view, that brain injured people were getting the short end of the health care stick, so, without even realizing it, I became a Health Activist/Advocate. I needed a constructive outlet for my anger and righteous indignation. My therapist gave the suggestion, and I started writing. 

One night, after a week of being on  a drug some doctors like to give to brain injury survivors, I sat down and wrote, ” Three Is All You Need.” It was beautiful. 

The drug unfortunately, was not for me. It kept me from sleeping and increased my migraine. It felt like I was drinking caffeinated drinks all day long. So after a week of that, I had to stop just to get some sleep. 

My therapist loved what I had written. She asked if it could go in their newsletter. She said that it would help a lot of people. So I agreed. Then, with her encouragement, I submitted it to my favorite magazine, Today’s Caregiver. They loved it. So much so, that it went on their online magazine, Fearless Caregiver and later, they made it the title and focus of another issue. I was very proud. It felt just like that day, as a little girl, that my poem was published in Jack and Jill magazine. http://todays-caregiver.tumblr.com/post/115938371066/three-is-all-you-need-by-janice-tindle-ive

I had a purpose again. I had a talent and a skill. Where everything else, including my singing voice and my social skills seemed to have disappeared, there was this one thing, this precious part of me that the vacuum had missed. This was profound because it meant I was still in there, at least in part. I had something to build on. And build, I did. 

I teamed up with a beautiful, sweet soul by the name of Trina Chambers-Bradlee.  We had met in a Facebook support group, became friends, and together we made The Traumatic Brain Injury Resources Page. This was because I couldn’t navigate the computer and World Wide Web to find services for myself. I thought it would be helpful if there was one place, like a FB page, where TBI survivors and their caregivers could go to find financial resources. Trina loved the idea, and since she had the know-how and experience as a support group administrator and seemed pretty good at the computer, I suggested she do it. She was very generous with me in sharing the acknowledgement of its creation. I posted everything I could find as well. Today, there are over a thousand people who use the page. When you consider that it was because I saw a hole in the system and Trina helped me fill it, that’s pretty wonderful. I then learned to make pages on Facebook and I made five others. Each one has been a wonderful experience. I’m leaving Facebook at the end of the year, but I leave feeling very good about what I’ve done to help other people with the same problems as me. 

I started three groups as well on Facebook, and although, as I said, I’ve decided to move on, those groups are still there, each a small, separate niche’ for those who feel alone. 

My writing continued on so that I became a contributor to themighty.com and I continue to blog and write in other places. My article, ” 7 Ways To Support A Loved One With A Traumatic Brain Injury,” was first published on the mighty.com. It has been very well received. I’m equally proud of that article because it has helped so many. https://themighty.com/2016/05/how-to-support-a-loved-one-with-traumatic-brain-injury/

But before themighty.com, I  was humbled to be chosen in 2015 for the very first issue of TBI Hope and Inspiration Magazine. I then became a contributor as well. http://www.tbihopeandinspiration.com/march2015.pdf

And yes, there will be a book. There will be several books. When the time is right, when my responsibilities as a caregiver ease, and when I’ve grown to be what I invision for myself, there will be a wonderful book that I will be proud to have sit on the shelf where maybe some shy, skinny girl or boy with thick glasses and a love for reading will find it. If I do it right, they will become inspired to find that little piece of themselves that the world vacuum can’t suck out. It won’t be a fairy tale, or nursery rhyme. No Dick and Jane primer either, but perhaps it will take hold in just the same way, so they too will  find their inner form of Rene’ Descartes quote and say, ” I _____, therefore, I am.” 

My writing journal made by my cousin, Deborah Kropp

Posted in brain injury, caregiving, coping skills, disability, honesty, human interest, humanity, inspirational, Inspiring, life changing, motivational, musings, people, poetry, prose, self, spiritual, support groups, thought provoking, tindle, traumatic brain injury | Tagged , , | 2 Comments

#HAWMC #Beauty #Writer                                      ” I am uniquely beautiful.”     by Janice Tindle 

The WEGOHEALTH Activist 30-Day Writing Challenge, Day 21

“Monday Motivation: What’s your life slogan? Explain what words or mantra that keep you going.”

So if you have been reading all month, then you know that my mantra is, ” I never give up.” I already discussed that, so I’ll tell you my new mantra for 2017. 

It is….you guessed it, ” I am uniquely beautiful.” 


Because as I look over the past 55 years of my life, I see a very imperfect person who has made some really stupid decisions. But who hasn’t, right? I think though that the biggest mistake I made was forgetting what I just told you; 

” I am uniquely beautiful.” 

If I had remembered that, I would have absolutely made less mistakes and been happier. It was when I tried to conform and “fit in” that I ended up being unhappy. 

When I was a little girl, my mother wrote to me in my autograph book, a quote from Shakesphere’s Hamlet, Polonius’ words;

“This above all: to thine own self be true,

And it must follow, as the night the day,

Thou canst not then be false to any man.”

That was actually excellent advice. 

I also had on my bedroom door a plaque that I made with the words of  Henry David Thoreau. It said; 

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.”

I made that plaque because I loved reading Thoreau and I related to that quote because that was how I felt. I was unique. Unique as in not like the rest of the children my age. I liked to read, listen to the adults discuss things and ponder over what I learned. I preferred the company of adults over children, most of the time. I enjoyed my own company even more. I was happy to be in my room all day writing, reading, crafting, playing, singing, or rearranging my things. 

I tried to improve myself because, one, I wanted too, and two, people seemed to be discontent with how I was. 

I got bullied at school over my looks, my thick glasses and my beliefs. I grew to hate school, but I didn’t hate learning. If home schooling had been an option in those days, I probably would have really flourished because my mother was a good teacher and most of the time, I enjoyed her. 

When I turned sixteen, over the summer, I got contact lenses, my body got curves, and my hair got curly. When I went back to school, the boys, the same boys that terrorized me in grade school, suddenly became very interested. I was supposed to be flattered. I was not. I was the same Janice on the inside that I had always been. But they didn’t see it. They didn’t see my unique beauty. And because they didn’t see it, they made me feel ugly. That was wrong. So try as they might, they did not get my attention, because they still, did not see me. 

I think we spend far too much time paying attention to what’s on the outside of a person. Outward beauty will eventually change, but inward beauty rarely does. That’s why we love our grandparents and our parents. We love them for who they are, not for what they looked like when they were young. And they love us, not for the babies we were, but for the adults we became. 

So getting back to my mantra for this year, ” I am uniquely beautiful,” it’s because I am. And you are too. We are all uniquely beautiful. The sooner we realize that and the sooner we stop trying to fit into manmade boxes of what acceptable beauty is, the happier we will become. 

I’m talking about the way God sees us. He doesn’t see cookie-cutter people. He looks into the heart and soul of the individual and sees their POTENTIAL. He sees what they are capable of becoming. He knows each and every one of us. We are all born beautiful. 

Psalms 139:13-18 says; 

“13 For you produced my kidneys;

You kept me screened off in my mother’s womb.

14 I praise you because in an awe-inspiring way I am wonderfully made.

Your works are wonderful,

I know this very well.

15 My bones were not hidden from you

When I was made in secret,

When I was woven in the depths of the earth.

16 Your eyes even saw me as an embryo;

All its parts were written in your book

Regarding the days when they were formed,

Before any of them existed.

17 So to me, how precious your thoughts are!

O God, how vast is the sum of them!

18 If I try to count them, they outnumber the grains of sand.

When I awake, I am still with you.” 
That’s what He wants us to understand. So I’m going to work on that and go in that direction and I’m not going to deviate. 

Janice Tindle, 1962

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