Is changing your profile photo helpful, or is it slactivism?

A few days ago I began noticing many of my FB and Twitter pals had changed their profile photos to cartoons. Many are from the sixties, seventies and even eighties. (I didn't watch cartoons after that, so maybe there are a few from that post era as well). Dork Ellen may have noticed, but didn't pick up that there was anything special going on.

Oy.

Yesterday a friend sent me an invitation to change my profile photo for the support of child abuse. Finally it all made sense. Today I found an interesting article on this that once again had me wondering -

Does changing your profile photo really accomplish anything, or is it slactivism at its best?

* Activism is when someone dedicated to a cause gets out there and does something about it. Something tangible and worthwhile.

* Slactivism (to me) is doing something easy that serves no real tangible purpose other than to make the writer feel good about what they've done.

So, what does changing my profile photo do? Does it change policy in Washington? Does it save a child from living a life of terror in their own home? Does it wipe the tears of a child that is being abused?

No.

I agree however with the author of the article.

Sometimes the least that we can do is activism when it helps to heal the heart of someone who has been hurt. If it supports someone and makes their life even temporarily better because we have told them we care, then it has served a purpose. It won't help prevent abuse from happening to another child, but it gets people talking, which is good for awareness and for the healing of those who have been hurt. It is a butterfly bandage over the gaping wound that will never completely heal... but even a butterfly bandage is better than leaving the wound open to become infected.

One of the truths of child abuse, is that when the evils are being perpetrated upon the child, no one is there to protect them. The fact is in most cases the child knows all too well that there are many people who are aware what is happening, yet choose to turn away because they don't want to get involved, leaving the child to feel abandoned, worthless, not worth the trouble... afraid and forgotten.

Changing a profile photo changes nothing physically for the child (who may now be an adult) but it does something mentally. Someone cares today. They may not know what else to do, but they are doing what they can. And it opens up the opportunity for dialogue, and talking about an issue is always good... and it often leads to true and powerful activism.

So, will you take the time to change your profile photo to show support for child abuse? Why or why not?

That leaves me feeling that I would like very much to post a cartoon photo from my childhood, but wondering which one I should choose...

Aaahhhh, now I know which one.

Curious what I've posted?

See my Facebook profile
See my Twitter profile

Doused by weed killer - what next?

One day my young children and I were outside on our farm in rural Missouri. We noticed our neighbor's tractor coming toward us, but since farmers often have their tractors out and about working their land this really was no surprise.

As the tractor growled its way toward us we could see a haze around it. It was dry, and the wind was blowing so I assumed the haze was dust from the dried field. The tractor got to the corner of the field and turned and I felt something damp hit my arm and face and I realized what was happening - the farmer was spraying something and the stiff wind was carrying it to us, soaking us and everything else in its path as we inhaled the fog.

I had no way to get my kids into the house as the plume of spray stood between us and the back door... and it was moving toward us. I rushed the kids into the barn and screamed for them to stay put while I closed the door and ran to bring in my pregnant mare and other horses and expectant ewe. I put the neck of my t-shirt over my mouth and ran. I got the horses haltered and ran to the barn, through the spray while trying desperately to flap my arms and yell to the farmer to stop. The neighbor looked at me and kept on his merry way, dousing me with whatever he was spraying.

In the past we had asked our neighbor to contact us whenever he planned to put anything on his field so we could put the horses in where they would be safe, and so we could be gone. He had agreed, making me a happy smiley neighbor. Despite that plea and my crazy waving and flapping and running with horses in hand he continued his task of dousing his field - and mine and everything in it - with chemicals.

When he had passed us, we waited for the spray to clear, then ran for the house. I was afraid to touch the car because it was damp with chemicals as was the door to the house. I grabbed the doorknob and stripped the kids to their underwear and ran them upstairs to the shower. When they were done I showered myself and wondered aloud what to do with our contaminated clothes.

Then it hit me - call the neighbor and find out what was being sprayed, and then call the university extension office to find out if I needed to rush my kids to the doctor or call poison control or what I should do.

The chemical I learned, was Roundup - a weedkiller and surfacant designed to kill nearly everything it touched.

The county Extension agent I spoke with chuckled at the urgency in my voice, telling me that Roundup was "non-toxic" and totally safe. Not only would it not harm either me or my children despite our dousing, but my pregnant animals would have no negative effects either. Don't worry about cleaning my car or my doorknobs etc, as it is designed to break down naturally, with no toxic residues.

So I did as I was told. We washed the laundry (I washed it twice just to be on the safe side) and did not go to the doctor. I called the neighbor and tried to be calm as I let him know how unhappy I was that my family and animals had been doused in his overspray. I reminded him that we'd asked for him to notify us when he planned to put chemicals on his field so we could protect our animals, but he suddenly saw no need to notify us of his plans stating what he'd sprayed was completely harmless.

In the following years that we lived there, we were heavily doused twice with Roundup and once lightly with ammonia. Each time I let the farmer know how much I appreciated our chemical bath and each time he insisted they were completely harmless.

Since that time several years ago, Monsanto has created genetically modified corn and soybeans that are resistant to the Roundup spray - called Roundup Ready Crops. This means that most of the food we eat has been sprayed with the chemical and surfacant combination.

According to this shocking physician's article - since that time several years ago, the chemicals in Roundup have been found to cause cell death within 24 hrs of exposure, as well as genetic damage. What's worse than that? The surfacant that is mixed with the chemicals is actually even more dangerous than the chemical itself. Put the two together and it's a double whammy. The active ingredient in Roundup - glyphosate - is the most commonly-reported cause of 'pesticide illness' among landscape maintenance workers in California. Residues from this chemical cocktail are apparently found in many of the foods we are eating, as well as the food the animals we consume are eating. Remember, you are what you eat.

So that leaves me wondering about the legacy of my 'chemical baths', and the 'baths' my children took with me. I am very sensitive to chemicals - I didn't start out like that. We have many similar illnesses. Granted many of those can be explained by a possible genetic connection. But if this stuff changes DNA and kills cells, that can't be good. I sit here 4 years or so into chronic bronchitis that has continued to worsen and I can't help but think about the fog I breathed into my sensitive tissues. Did it harm me? How will I know? In the past I have figured that what's done is done and can't be changed, and I've ignored it. But that was when I was assured the stuff was 100% harmless. Now I know differently.

Have you ever been exposed to toxic chemicals in a strange manner like this? What chemicals were they? What was the outcome? Do you experience lasting effects from the exposure?

This should be one of the easiest posts for me to write, but it's not.

It's one of the very hardest.

A long time ago I was taught that to write, one must begin. Just write and the words will come. So, here I go...

There is simply no way to narrow down the things I'm thankful for to 3, so I'm going to create 3 categories that my favorite things fit into:

1. The Challenges. Yes, it's shocking I know. It's not that I like living with adversity - no, not at all. It is the adversity in our lives that challenge us and make us grow. Bones are made stronger by use, muscles too. I think Health Activists become stronger with use, and I'm no exception to that rule. The hard stuff knocks me down, and the weak person inside me wants to just roll over and quit. Then that other part of me keeps nagging at me "Get up! Someone else could benefit from this. It's so selfish of you to keep this to yourself." And, I pull myself up and away I go. I'm not always very graceful about it when the chips are down, but I am stubborn (not to be confused with strong). Once I make up my mind, it's hard to convince me otherwise. I can't stand thinking that I am living through something this hard for nothing... so I make something of it!

2. The Work. I am disabled because I don't function very well. I can walk and talk, but to someone who is alone at home all day long who can't go outdoors, that really is a recipe for disaster. By all rights I should be angry, depressed, unhappy, unmotivated, sad... well, you get it. Being a Health Activist gives me purpose. Everyone needs a purpose. A reason to get up in the morning and something to do to contribute to their world. I don't like being sick, not one little bit. But I do love getting up in the morning and going to the computer to see what I can write about next, or what emails from which friends are waiting for me to answer. Even when I am stuck in bed the thought of the work ahead of me fills me with anticipation, enthusiasm, and with smiles. I tell everyone I have the best job in the world, and I mean it.

3. The Rewards. When I stop to think what my life was like before I became a Health Activist, it seems like another lifetime ago. I was a different person. I was the one that gave up. I literally crawled into a ball and suffered because I thought that was my only choice. If the doctors couldn't help me, I was sunk. Now I look at my computer and the office and home around me and realize how rich I am. No, I don't have a spare dime to my name, but I have friends I've never met who send me Christmas presents and call me when I've missed a few days online. No matter where I go anymore, there's someone I can meet for lunch, or just an airport meeting and a hug. I have handmade thank you cards on a bulletin board to my left - I can't help it, my favorites are from kids. And when my children, now all grown up, come into the house with their noisy voices and their laughter, I remember what it was like when they were sick and the doctors told us they'd done all they knew to do for them too. My mom, my FIL, my hubs, my brother, my childhood friends, my neighbors. Their smiles and hugs mean the world to me. When things are especially rough I cling to those thoughts. They don't realize that I am the one that should thank them because when they asked for help they gave me purpose. They gave me a reason to keep on fighting and living and smiling.

Without these three things I wouldn't be a Health Activist...

My #1 gift pick for Autoimmunies and chronic pain patients

Black Friday shopping is always a challenge. There are so many awesome deals out there to be had, if one can only get up early enough, get to the stores and wade through the waves of anxious shoppers to find their treasures.

I don't often brave the crowds of Black Friday, but this year I did. I found some awesome deals I will talk about in later posts, but I wanted to be sure and start the season off by presenting my favorite Black Friday find:

The Soothing Squooshy Conair hand held massager in ice blue

Introducing, Conair's Soothing Squooshy hand held massager!

The super-soft microfiber plushy unit is slightly larger than my medium sized hand and comes with a unique elastic band that allows you to 'wear' it when needed. The bottom of the unit sports an easy to press button to turn the unit on, and a zippered access to the massager unit and batteries. The massager itself is powered by 2 AA batteries that are included in the unit at purchase. I purchased my two massagers at Menards for $4.99 which I believe is their regular price. Color choices included animal prints, ice blue and a pale lavender.

The things that make this unit special is its size, price, and that elastic band in combination with a softish massaging vibration that did not set off my Raynaud's, even after a couple hours continual use.

When I got my massagers home I climbed in bed and took my shoes off. I put the units on my very painful feet and clicked the on button. To my delight, the vibration was not too harsh. For me, vibrations or the sensation of shaking can set my legs into serious dystonic spasms, as well as trigger an episode of vessel constriction due to my autoimmune related Raynaud's syndrome. I did not have either problem with these units. Even the noise (perhaps muffled by the plushy stuffing?) was minimal.

For my first use, I left them on my feet about a half an hour. Although I didn't feel tremendous relief at the beginning of my experiment, but the time I took the units off, the relief was marked. The second time I used them, I put them on the soles of my feet and a heating pad on the tops of my feet. I centered the Squooshy's first under the ball of my feet and let 'er rip. Eventually my heel and instep were more painful than the ball of my foot, so I easily adjusted them. I also spent some time with the units on the tops of my feet. No matter where I put them, after a few minutes I felt relief. I did not have to twist my foot or keep them at otherwise unnatural positions, because I had two units and I was strapped in for the duration.

That first night I strapped my new best friends to my feet and tried as usual to go to sleep. Normally my feet are so horribly painful at night that I sleep very fitfully. This night I accidentally fell asleep with the units buzzing away and only awakened when the cheap batteries they contained at purchase, died. I was able to sleep the rest of the night in much less pain. My hubs didn't even wake up to tell me to shut them off - they were very quiet (especially under the covers) and the vibrations weren't strong enough to conduct themselves through the springs of the bed we slept on.

Last night, I went to bed with my Squooshy's on, and hubs woke me up (as I'd asked him to do) to remind me to shut them off. When I woke up in the morning, I immediately put them on and turned them on to see if they would ease my severe morning pain before I had to actually stand on them to walk to the bathroom for morning meds. I am pleased to announce that it did help me.

For kicks and giggles I've put the Squooshy's on my hands, wrists, elbows and even a shoulder. They've seen action on my feet, ankles and knees too. I even laid on one in the small of my back to see if it would ease my back pain without making me uncomfortable as most other units I own do.

This was the best $4.99 X 2 I've spent in a long, long time.

I want to add that the tag on my Squooshy's do give a warning, and each patient must speak to their doctor and make up their own minds how or if they want to use them. I am just a patient wanting to spread the word about a good product I've discovered that helps me. It's up to each individual to seek counseling from their own doctors who knows their health history before deciding to purchase or use one.

The warning says:

CAUTIONS This massager should not be used in the following cases: Tuberculosis, benign and malignant tumors, hemorrhages, inflammations of the skin, phlebitis and thrombosis, open and fresh wounds, bruises, broken skin or varicose veins, undetermined calf pain, or joint pain.

I do have varicose veins in my legs, so I did not use them where those veins are an issue. I was using them for joint pain, but both my chiropractor and my osteopath suggested a massager for some of my joint pain issues. Because of my Raynaud's (not mentioned on the tag) I will always have to be very careful about how I use them, but for now they are giving me a great deal of relief when used in concert with my anti-inflammatories and some common sense.

Who is your digital heir?

Have you ever stopped to contemplate what will happen to your digital or online information when you are gone? Thinking to yourself, my spouse has my passwords and knows my accounts, so there's no issue?

You may be wrong.

According to The Economic Times, there may be rules and regulations in place that will determine what happens to all your hard work online should you die. Although the site is Indian, I think it's smart to look at what they are saying...

Think about it a moment - what activities do you participate in online or on your computer? For me, there are emails, financial records, legal and medical records, blogs, communities, photos, poems, stories, music, online banking, online bill paying, records, well - you get it. I work very hard every day as a Health Activist and I want that work carefully guarded and passed along should I die. I have carefully recorded my passwords, and my important links are stored in my computer (okay, maybe not the smartest thing to rely on).

So, what does this mean?

I assume then that, should I die, my extremely computer savvy hubs will spend a few moments mourning my passing and then go online and use my email accounts and addys to tell all my dear friends and family that I have gone. In my mind I see him some weekend later sitting at my messy desk perusing the folders while peering at my enormous monitor. I imagine him shaking his head at one thing, and smiling at another.

But he won't have a clue what to do past that point!

In my various folders are letters to friends and family that I would like them to receive after I've gone. It's a silly little thing I do when I'm feeling particularly sentimental some days. I'm okay with my hubs reading them, but does he know that I want those letters passed along to their addressees? No.

So, I need a digital will.

To create a digital will, The Economic Times tells us we must first create an inventory. The next step is to get my digital signature authenticated. Then with this information, my digital will can be created. Once created it may be stored online (complete with links) or in a more solid form. The digital will does not take precedence over your last will and testament, but is apparently designed to work in concert with it.

Did you know service providers have different policies about your accounts after your death? It's true. For example, while google may give access to relatives, Yahoo's policy is to terminate the account. Period.

What about information you DON'T want passed on?

Many people might consider what they want to live and be passed on after their death, but what about those things you want to die with you? In order to prevent someone from gaining access you will also need your digital will, or an "account guardian service" (Who knew such a thing existed?!) whose job is to keep your secrets secret by allowing you to upload all of it to their site and tell them who you want to have it. You can also opt in for an account incinerator service and upon your death *poof* it's all gone.

Last messages

There are sites that are designed to give your loved ones your digital will or last words. One of them is called The Last Messages Club.

Have you thought about what will happen to your information when you die? Have you made any arrangements to be sure that those you want or do not want to have access to your information are aware of your wishes?

Do you share your human side?

This weekend has already been eventful for many reasons. For example, I got a twitter DM from someone asking about another Health Activist who wrote an uncharacteristically depressed post. When I read it, I feared for the author because the emotions were raw, and the depths of the depression were as impossible to deny as the warning signals it held.

I am a 'helper', but I knew I was unable to help my friend and this upset me. Not knowing what else to do from such a distance, I urged the author to call me so we could talk. #1 I wanted to be sure my friend was okay. #2 I wanted to touch bases with my friend so we could talk. I couldn't be there to give the author a physical hug, but I hoped hearing the voice of someone who understood at the other end of the phone would be cathartic.

As we spoke, my friend told me why the post was written... the author was experiencing what every chronically ill person experiences at some point, and they wanted to share it, not only for themselves, but for everyone else as well. The author was also burdened that patients looked up to them as somehow infallible or as a person that holds all the answers, when in fact this is far from the truth. The author's experience and weaknesses with their disease is no different than the experiences of those reading the post, and they wanted to share that process.

After all, we are human - right? As Health Activists, we are more than leaders or educators. We are more than supporters. To many, we represent the illnesses with which we deal each day. When someone comes to a community and sees positive, encouraging words, this means something to them. It gives them hope, and we all need a healthy daily dose of that. Yes, it makes them feel better about their situation.

When we express our deepest emotions and raw vulnerability, this means something to them too. It means validation of their own feelings of depression and inadequacy. It means they are not alone.

Depression is an incredibly lonely disease, especially when it is triggered by a chronic illness that may be "invisible" or misunderstood. Sometimes the depths of that depression fall so low that it is impossible to see anyone else but ourselves. But sometimes reading something like my friend's post makes us feel validated, especially when that friend is venerated as a leader in the community at large. Unlike talking to another person across a room or on the phone, we can read and re-read it and think about those words. We can go back to it later. Seeing other patients reply to posts like that further validates those feelings almost as much as if those comments are directed at that reader instead of the original author.

How do you handle the human side of your chronic health condition? Do you open yourself up and let the raw emotion and feelings flow, or do you think it's more important to keep those things hidden? Why did you choose to do that?

Love Beats Hate - a blogging event

While people sometimes use the internet to spread hateful messages
about marginalized groups, including people with chronic illnesses, we
want to show that love is more powerful than hate.

The Love Beats Hate blogging event (November 17, 2010) is an opportunity to share the ways
in which you've seen the support of online communities enrich your life
or the lives of others.


Once upon a time...

... there was a little family. There was a Daddy, a Mommy, and 2 little children - a boy and a girl. The Mommy was very sick. She had a medical condition that made her hurt, and it made her tired.

The Daddy tried very hard to make the Mommy feel better. Sometimes he got mad, and sometimes he was sad, but he always tried. The little boy and the little girl couldn't remember a time when their Mommy wasn't sick. They knew she was different, even if they weren't really sure why.

One day, the Mommy went very far away to a doctor, and when she came back she was very quiet.

"What's wrong Mommy? Why are you crying?" said the little girl as she softly placed the palm of one hand on her mother's cheek, and the other under her chin. The mother looked at her little girl's eyes and saw that she was crying too.

"Why do you ask me that, sweetheart?" she replied.

"Because your eyes look wet and your face is so sad."

"I'm sad because the doctor said he couldn't help me anymore, Baby."

"Can I help you Mommy? Can I help make you feel better?"

The Mommy thought about it for a while. She pulled down the corner of the blanket on the bed where she was lying down and said "Climb in here with me so I can hug you, and you can keep me company then."

The Mommy felt the warmth of her daughter's body next to her, and smelled her soft baby scented hair and her sweet little girl breath, and she did feel better.

"I love you Mommy. I love you so-o-o-o-o-o-o-o much. I love the whole wurl-d."

Many years passed, and the little girl grew up. Like her brother, she got sick too. This made the mother very sad. One day the little girl was in her bed with the lights turned off and the mother could hear her softly crying into her pillow.

"Baby, what's wrong?" she said.

"I don't feel well." said the daughter. But the mother already knew. She knew that her son and daughter had the same disease that she had, and knowing that made her feel very, very sad.

"What can I do to make you feel better?" asked the mom.

"Would you come and lay with me for a little bit until I fall asleep?"

The mother crawled under the covers. She held her daughter and softly stroked her face. At first she wanted to cry with sadness, but she didn't. When her almost grown-up girl had fallen asleep, she climbed out of bed and went to the computer in the next room. She sat there a few moments, thinking. She had given up trying to help herself, but she knew she had to find help now that her children were sick too.

The mother was afraid. She didn't know where to begin or who to talk to. She found a group of people with the same disease, and she began to write them. The people in the group were kind and they sent her many virtual ((hugs)). Best of all, the people helped her learn about her disease so she could go to their doctors and fight to get better.

Sometimes the doctors didn't like the mom very much. Sometimes friends and family hurt the mom because they didn't understand. But the mom and the children began to get better.

The mother was so thankful to the people that helped her family, that she decided to help too. She began working in many online communities to help other patients understand and manage their diseases and learn
to work with their doctors to get the very best treatments.

Pretty soon there were many friends the mother could talk to any time she wanted, just by going to her computer. She even got to hug and thank some of them in person. She had lost many friends because of her
disease, but she had found many, many more for the same reason.

One day the almost grown-up little girl hugged her mommy and kissed her on the cheek.

"Thank you for not giving up" she said.