The ego, the soul and the social stream

The ego, the soul and the social stream

Social media.

Love it, hate it, need it, avoid it — we are all on there for various personal, social and professional reasons. And yeah, it’s got its challenges.

Making peace with this reality is neither easy nor quick, and lately it’s been top of mind for me as I go through my work day.

A couple days ago I made a comment on a friend’s post. He was really upset about something going on in the “larger” world — I could tell because of the giant black letters against a blood red background. I may not catch every nuance, but this one was pretty unmistakable.

And I believed he was wrong in how he was looking at the issue. I posted a civil response with my point of view, coming from my 20 years in the online publishing industry.

He deleted the comment, and made a comment about his right to do so. Okay.

At first my ego said “Ha! He knows I’m right; that’s why he deleted my comment.” Then I backed away, gave my ego a gentle but firm hug, and whispered “time out” in her ear.

I browsed through his timeline, reading some of the news sources he shared, trying to gain an understanding of where he was coming from with his opinions. Gradually I began to see what scared him — I could see where the fears were, and how they were being amplified. And I began to realize that his fears — loss of freedom, control, livelihood, ideals — aren’t that far from mine. In fact, they come down to fairly common fears and anxieties we all experience on one level or another.

The only apparent difference? The reasons — the people and policies that are exacerbating these fears in each of us.

In the larger dialogue, these differences can seem vast and insurmountable. But in that personal moment, the commonality of our human anxiety was what struck home. From that point of view, our differences didn’t seem that far off at all.

We all have a circle of immediate influence — in that circle, we can do good, do harm, make change or support the status quo. And then there’s the larger circle, in which we have a voice, sometimes a powerful voice, but changes comes more slowly.

And then there’s the social circle, in which we all have a voice but it often does little to advance our own intentions. It’s just adding noise.

Beyond making our own voice heard, however, is another powerful agent for change. Listening. Trying to truly discover where the other person is coming from, their fears, their motivations and intentions. It’s not easy to go there; but it’s critical if we expect to find long-lasting solutions to the problems that plague us.

 

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On Rituals … and the Value of Temporary Chaos

On Rituals … and the Value of Temporary Chaos

Rule #9 in 10 Little Rules for a Blissy Life is “Make Life a Ritual.”

There is a certain comfort in routine. The morning cup of coffee is a perfect example. While some view it as a chore or a necessity, I see it as a way to reconnect to the waking world.

So much of our lives rush by in a blur. We find ourselves doing the same things over and over again, like dropping the kids off at school, or tossing a load of laundry into the washer, dashing off emails to the clients, or paying the bills. It’s too easy to become automated, almost unthinking, as we scurry through our lives.

One way to bring more connection into my life has been through rituals. Growing up Catholic, we had plenty of proscribed rituals. Tuna noodle casserole became a Friday staple during lent. Even stopping for donuts after Sunday Mass, which explains my ongoing craving for a good jelly bismark one day a week.

I have found new joy in recognizing and celebrating the rituals in my life. Making the bed is now an opportunity to bring my bedroom back to a state of beauty, and prepare the space for another restful night. Checking the mail is gives me just a minute or two to think of someone I’d like to hear from, and plan to write or email them. Cooking dinner goes from being a chore to celebrating a healthy offering for my body.

But what happens when change interrupts our rituals?

The last two weeks have been all about chaos — sorting, packing, storing, selling our home and moving in with a friend while our new home is under construction. The comforting rituals are turned on their heads. And with it, my sense of balance. It’s no wonder I’ve had vertigo in the mornings, as my physical body expresses what’s in my heart and mind.

Yet overturning the familiar is where we find new joy. Creating new order out of the chaos — even though I know this too is temporary — restores my balance while allowing me to be open to new experiences.

My latest ritual? Morning coffee on the dock, feeding the baby turtles at my friend Melissa’s beautiful home. Who knew watching tiny little shell kids bob for food could be such bliss?

I may be out of my element, but that’s no reason to be out of my mind.

 

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FFS, Have a Little Faith, Woman

FFS, Have a Little Faith, Woman

It’s not that hard.

We get what we put out there. Our external life echoes the thoughts we have running through our heads. If our thoughts are chaotic and uncontrolled, we get chaos. If our thoughts are fear-based, we get a life filled with anxious moments. If we have a million conflicting dreams and desires, we experience unfilled wishes. And if our thoughts are calm and centered? Yep, we find our lives are calm, more in control, and we are better able to cope.

Of course that doesn’t mean bad things won’t happen. Parents will get sick; kids will have crises; partners will flip out and leave; houses will burn down — literally or figuratively. These things will continue to happen — but our experience of those things will be vastly different, depending on the state of our inner mind.

Now, when we get really good at maintaining that mindful balance, we are able to focus our thoughts and intentions on what we truly want — far beyond just surviving the day, making it through the next crisis. We are able to spend time seeing the future we want for ourselves.

When we can do that, it suddenly becomes clear what step to take next. We take that step in trust, in faith, knowing that mistakes will be made (it’s how we learn), and setbacks may occur. But we move forward — in faith — knowing that how we experience our own lives it up to us. Entirely up to us.

Much love.

 

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Rare, pshaw. Hardly!

Rare, pshaw. Hardly!

According to Apfed, Eosinophilic Esophagitis, a RARE DISEASE, affects 1 in 2,000 people. So, in the city of Ann Arbor, MI, where there are approximately 121,000 people living, we can hypothesize that there could be 60 people, who have eoe, walking through that college town of only 28.7 square miles.

That is the most math I have done in quite a while, please don’t expect that of me again.

 

So what is my point with all of this?

My dudes (yes, I talk like this in real life and yupper, I am nearly 40), we’re not alone. None of us are. Last week, I received a message through one of my social media platforms. It made my day, that someone came to me with questions. This young lady was freshly diagnosed and, rightly so, was distressed. It was a relief to her to find our story and to find someone else with this link. Hank may be rare, but he isn’t the only one in the neighborhood! So, how do we go about finding others in our same boat?

Social Media: Through Instagram, you can find other families like mine. Families that document their daily lives and struggles, triumphs and wins. Head over to Facebook and not only can you also find us, you can join support boards that cover the world, your state or possibly your county, province or city. And if you can’t, you can start your own! Connect with these families, engage in conversation, ask questions. I have found that most people will answer your questions and lend support. So, ask away!

APFED.com: I love this group, here, you can find local, volunteer-led support groups. This page will also connect you with their online support group.

Your doctor: Who better to know of your local resources than the men and women who are helping you navigate this situation? Ask there for suggestions as well. The bonus here, is that they may be able to recommend a therapist for better one on one support.

I, personally, respond to all (appropriate) questions that are sent to me and usually have the time to dedicate for a conversation. I am not an expert and I don’t sugar coat our experiences. But I am also available for an extra shoulder.

 

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The Traveling Circus

The Traveling Circus

Sit back, friends, it is story time.

Finding ourselves completely burnt out, the Hubs and I decided that we needed a vacation. It had been years since we had gotten away and we needed to do it again. We decided to travel down to North Carolina to visit with my mother-in-law and do all of the fun things along the way. Mammoth Caves. Check. Gatlinburg. Check. Driving over the Smoky Mountains. Check. Spending time in Cherokee (my favorite place, ever). Check. Then over to the coast for ocean living. Bliss. I am a planner and I am cheap, so I took a calendar and literally wrote out all of our destinations and reserved motel rooms and hotel rooms in advance and cost shopped around. Folks, right here is where your English teacher would be pointing out the foreshadowing. Right. Here.

I already knew that we needed to get creative in order to make it out alive. In a large tote, I packed a ton of food that was Hank-Safe for the occasions when we might not be able to find food that he could have. In that tote, I also packed the cups that he uses to drink his medical food and the accessories need to wash them. I packed a large cooler with his rice milk and his refrigerated medications. Then, the clothing. Little dude needs to have many changes of clothing, as the resident puker of the family, I had to make sure that he could be clothed at all times and that meant a lot of clothes and a bottle of laundry detergent.

Cooling off

Now, right here, I know that you are thinking, ‘Good Feta, woman! There are stores all over the country that carry rice milk, that carry laundry detergent, that carry food!’ But I am a planner and I was worried that it would be late and I would need something and I wouldn’t be able to leave to get what was needed.

Day one into the trip was lovely. We stopped at rest areas and ate packed lunches from the magical food tote. We ran around play areas and did yoga in the grass to stretch our legs and backs. We drove to our first hotel. We planned the first stop to land us near the Newport Aquarium in Kentucky. If you are ever in that area, you need to do yourself a solid and visit. It was here, in a parking lot, I realized that you shouldn’t leave your parking ticket on a magnet. Paid for a whole day instead of the 3 hours. A little salty, I was.

Day two, was Mammoth Caves! Oh it was glorious. The stalactites, the formations, the crying kids, the seized back muscles the Hubs got. Wait. What? Yeah. Something that I didn’t count on is how scary this wonder of the world would be on young kids. In their fear, they needed special hand holding and coddling. Twenty steps down into the cave, found the hubs, walking down, leaning forward and holding a kid’s hand. Forty steps down, he was able to stand up. His back, however, was not able.

We did not mean to spend more than two nights in that area, and therefore, I had booked the campiest motel that I could. It didn’t have a playground, working air conditioning or a pool – but that was ok, the next hotel we were scheduled to stay at was a super nice place with a massive pool. But now, I had a Hubs in the ER for the night and two kids with NOTHING to do. We were to hike around the caves for a few days, but they “noped” that activity after the first five steps into the cave. We checked out of the motel and checked into a hotel with a pool. Canceled the following night’s hotel in Gatlinburg. I could totally see the lost money flying out of my purse.

Day three, we swam. We waited. We went to the drug store and bought Pokémon cards. We finally got the Hubs back.

Day four, I drove Over the Mountains while the Hubs slept with his muscle relaxer.

Days Five, Six and Seven, we realized something that was golden and a simple internet search would have told me this, but did you know that the South is sort of famous for their BBQ?

This is where the ‘Laugh’ sign gets lit for the audience.

I wish that I had thought to research all the BBQ restaurants that were on the route of where we were going. If nothing else, this kid can and will survive on pulled pork. Even more, whereas a BBQ chef won’t tell me what is in his secret family rub, he will tell you if your allergens are in it. The relief was so strong, that I thought about leaving the very bulky food tote in a motel and driving off. I didn’t.

The rest of the vacation was uneventful and full of relaxation and bliss. We did find all of the local BBQ joints, we ate our way through the south, and we ended up coming home with a nearly full food tote.

Mining For Gold in Cherokee, NC

What did I learn for from all of this? I can’t plan everything out. It just won’t happen that smoothly. I learned that the one family member that I was most worried about was the least trouble. I learned that the world has options that we can use.  I learned that planning the vacation to stay inexpensive is like poking the proverbial bear.

Oh, and Cherokee is where I ended up spending my birthday. At the base of the mountains, with the scent of flowers and green in the air, I spent the twilight of my 38th drinking a water on a shared motel balcony with a motorcycle club. 12/10 would do again.

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School, the Germ Factory

School, the Germ Factory

So, it is common knowledge that schools have kids in them (seriously! They do!) And I think that we all know that kids have germs. Put those two things together and suddenly, you have mass produced illnesses. But, for these illnesses to take hold, you need something to carry it around. THE KIDS! It is a vicious cycle, folks.

Sending Hank to school was a scary prospect for us. We had seen his brother come home with everything under the sun during the first year and, in turn, infect us like he was being paid to do it. And he was healthy! Hank’s compromised immune system has seen him more sick than healthy this year. We had never had the croup in the house until this year and now we’re up to three times. The flu once, and cold after cold after cold. Right now, we have – what we think – is the stomach flu. Sleepless night and nothing staying in (and I stopped drinking caffeine?!? What is wrong with me?) coupled with being warm and floppy means another few days of sitting on the couch with the puke bucket.

Nesting with the Flu

Yes, I said it, the puke bucket. A trusty friend to flare ups, colds and whatever we are currently dealing with. I saw once, on one of my social media support group boards, that one common theme was the puke bucket. Nearly everyone had one. And I thought that we were so clever.

It is a glamorous life, the mother of an allergy kid. I would say an EOE kid, but, hey I think that everyone could use a puke bucket in their lives. OK, that was mean.

How do you avoid bringing these germs into the haven that is your home? This is what we do:

  • We enjoy a multitude of soaps at every sink. Take your pick! We have antibacterial liquid and foams, fancy homemade bar soaps and even a few tiny hotel styles from the Husband’s many adventures. I have noticed that sometimes a kid won’t wash their hands after the bathroom if you just have a plain container or a plain boring bar. Seriously. We’re finding fun here through the buffet of soaps.
  • We also utilize a complete housekeeping service here in our household. They come every day and focus on the entire house. Ok, it is me. I clean daily. When I first left my job, I experimented with making my own cleaning products. But now, I fall back on the convenient and premade manufactured brands that jam enough bleach into every wipe that they eliminate everything. I hate to think of all the illnesses that we are not getting because I walk around wiping everything down a few times a week.
  • Changing out furnace filters monthly is a basic household necessity, but it also allows for better air flow which help eliminate mold and dust.
  • Vacuuming everything. I hate this chore. HATE it. I hate lugging the vacuum through the house, but that feeling when I dump the canister is one breeching on victory.
  • Oh dear. Laundry. It is a never-ending cycle, but staying on top of sheets, shirts and those rando socks all over the house helps keep germs and sickness at bay.

Seriously, I am chuckling to myself right now. I am talking about all the cleaning and care that we do just to avoid illness when we have SOMETHING almost weekly.

Honestly, the best way to make it through the illnesses is to invest in a quality thermometer, many “trash” towels to clean up the never-ending puke and a beverage that helps rehydrate your sickos. For recipes on making your own, head over to Pinterest and see what you can find. For us, we’re lucky to be able to use Gatorade.

Do you have any suggestions that I haven’t thought of? Please, share them! Remember, you are a part of the family now.

 

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Scopes and Other Uses for Nail Polish

Scopes and Other Uses for Nail Polish

On the day that my oldest son started kindergarten, me, the husband, and Hank took him to school and snapped his picture as he stood in front of his classroom door, looking tall and proud. Once the building had him for the day, the three of us switched modes and scurried to an outpatient surgical center for Hank’s first endoscopy. We didn’t even have time to freak out that our first born was now a man of the world, taking on the educational system. We were now in the medical zone. That first scope was awful. I was overly freaking out that we were going to get a horrible diagnosis, it was going to change our lives and it was going to be awful. Well, we did, it did … and it isn’t always awful, but it is always trying.

Small and afraid to eat, he just didn’t care.

For endoscopies, the patient can’t have liquids or solids after midnight the night before. This was more of an issue for me. I thought that I would invoke solidarity with my small son. But, he didn’t care. Small and afraid to eat, he just didn’t care. We sat and waited for him to be called back. We played with flashcards and toys that the nurses had on hand and waited. As it became time to have him go back, we were accosted by the head of Anesthesiology. He was awful. Why were we forcing him to have this procedure, who would have ordered it, why couldn’t we just avoid his allergens? My husband and I were so taken aback that we were shaking. When facing that, we’ve learned it is best to repeat who your doctor is and he can go and talk to him.

Hank’s First Scope

For the first two scopes, we were allowed to go back into the room with Hank. This is a bad idea. It took several people to hold down this tiny little thing of a kid. We have learned that discussing the procedure and age has made this transition down the corridor much easier. For his last scope, Hank walked down to the room, hand in hand with his doctor. He was ready. I was ready. His esophagus was not.

Hank walked down to the room, hand in hand with his doctor.

The time when your child is back with a camera down his throat is an interesting time. The first time, I was fidgety and nervous. The second time, I cried. The last time, I sat in the waiting room, a lone mother bear, drinking hot and burnt coffee while watching other people and their support systems. I glared openly at the mother who was eating, with a spoon, out of a peanut butter tub. Like, seriously, a 55 gallon drum of allergens. In a hospital. There was the poor middle age man who had to bring his mother and she was clearly hamming it up for the others in the room. I knew my time at the zoo was coming to an end when I could hear my child waking up from anesthesia. Guess what? It’s painful and disorienting and freaky to be a small child, hooked up to a drip line without a parent nearby. So the best way to handle it is to be as loud as possible. It also acts as a beacon for your parent to easily find you.

Within a few minutes, I can collect my child, but first, like any fun ride at the amusement park, there are photos! Though ours always turn out like a weird pink and white tunnel of acid, saliva and white cells. It’s a numbers game after that. How high or low is the eosinophil count and where were they found? Hank tends to hoard these in the esophagus, though some patients have them spread out through their whole GI track.

Hank and I paint his toe nails before his procedure.

There are a few things that we do to make this whole process more … I want to say fun, but that is just mean. Bearable? That might be a better word. Hank and I paint his toe nails before his procedure. It makes the nursing staff giggle, makes him feel better and it is a fun release. As he is getting older, at the ripe old age of 6, we’re nearing the end of this tradition. He has become more self-aware and more opinionated. So, we need to think of something else.

Hank’s Last Scope

Since Hank’s GI shares the same common name of a ferocious animal, we found leggings from LuLaRoe in his size, with that animal on them. He proudly showed his doctor and again, made the nurses giggle. Being silly in a non-silly time is ok.

Right? Right.

And for those still following along? David’s first day of kindergarten was possibly his favorite day of his whole life.

Dave’s First Day of School

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Hungry + Angry + Hank = Hankgry

Hungry + Angry + Hank = Hankgry

Picture it: Sicily, 1932. Wait. It’s 2018 and we live in the Midwest and my name isn’t Sophia.

Ok. Picture it: it’s 3:52 in the afternoon – school is out and the lunch box with the carefully packed Hank-safe food still in it. The snack is still nestled into the bottom of the backpack, with the library books on top, making the Cheerios a fine dusting. Very bluntly, you have approximately three minutes before the monster appears and takes over for this child who currently is so happy that you are there to pick him up from Kindergarten.

Minute one: Child launches himself at you. Hugs, forehead kisses and a 45 second sentence about his day. Fifteen seconds to look at the uneaten lunch and know that a whole minute has passed and you are running out of time.

Minute two: Child sees his older brother walking from the back of the building and RUNS to greet him. You mentally start to calculate if this is going to work down the three minutes faster.

Minute three:  Herd the kids to the car where there are drinks and snacks waiting. Lift up the back of the truck to allow climbing in from the back (it’s a bribe for 30 extra seconds). Get kids buckled and start rummaging through the snack bin.

Offer Cheerios. Yeah, no. Offer carob chips. No sir. Offer jerky, snack sausage, chips, cookies, bread sticks*, everything in the bin. They are all a no-go.

The seconds tick down. 3 … 2 … 1.

There is now a monster in the back seat. He’s hungry, he’s angry and he’s here to stay.

Reasoning with the monster and trying to get actual words becomes the next task as you start to drive them home. After 10 minutes of yelling, singing, seat kicking and raspberries, it comes out. He would like breakfast sausage. NOW. Of course you are in the car, not in your home, not at the grocery where the actual sausage lives.

The temper tantrum lasts for a while. You may have to run to catch him as he makes a break for it – bolting as fast as he can down the sidewalk, you may have to carry a struggling 6-year-old up to his special chair for a medical formula food. You may have to become a slap stick comedian. But finally. FINALLY. The yelling stops, the smile returns and the belly becomes full again.

A hug is given and a sad little sentence: Sorry, mom.  I was Hankgry.

*finding Hank-safe food is a task. Finding items like bread sticks without wheat, egg, dairy and soy is a wonderful thing.

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