EDS Awareness Month by Konnie Enos (and May Enos)

In looking for a topic for today’s post, I came across the information that May is EDS awareness month.

Now, I have one child diagnosed with EDS and we assume at least two others have it as well. (They have the symptoms but no doctor has diagnosed them.) We’re also fairly sure they got it from my side of the family. (The EDS specialist who diagnosed my daughter said I have at least a mild form of it.)

Since my daughter’s is not mild, I could expound on how it has affected her life. I could also explain how it affects her siblings. And in doing so I might bring some awareness to the illness.

But why would anyone take my word for it? At most, I can hyperextend a few joints. I don’t have all the other issues this illness can come with. So instead of reading what I have to say about it, I thought it’d be better to let you see, hear from young women who are dealing with EDS on a daily basis.

What follows are my daughter’s own words about EDS and a link she posted on Facebook to a YouTube video by another suffer from EDS and some of her friends with the condition.

May Enos’ Facebook post 5/25/20

My friend Cheyanne, put together this video for Ehlers Danlos Syndrome awareness month this year and I just thought I'd share it for anyone interested in learning about this genetic condition. The 2nd part is on her Youtube channel as well.

Ever since I was diagnosed I have had way too many conversations with my brother, sister and mom that shouldn't happen. People attack my character behind my back, to my family. Claiming that I'm not really as sick as I say I am and that I'm making it up. They call me a hypochondriac, crazy and say that I just heard about Ehlers Danlos Syndrome and now I'm trying to convince everyone that I have it...

The truth is, I knew as much about Ehlers Danlos Syndrome as many of you before I was diagnosed- that is absolutely nothing. I had never heard about it before my doctor diagnosed me 7 years ago and those first couple of years I thought my condition was mild and that EDS was not a big deal. Turns out I was wrong though, because it's affecting me a lot more than I ever imagined. Due to Ehlers-Danlos Syndrome I have Chiari Malformation, early onset degenerative disc disease with spinal instability, kyphosis, scoliosis and spinal cervical stenosis, Dysautonomia, heart valve issues, and I had an aortic aneurysm 2 years ago. I have Mast cell activation syndrome, and digestive tract paralysis (my diagnosis here have included gastroparesis, gastrointestinal dysmotility, and Chronic Intestinal Pseudo Obstruction among other things) where essentially my entire digestive tract from the esophagus to colon is paralyzed and I also have bladder paralysis. My abdominal organs are prolapsed by a condition called Visceroptosis which has been classified as a rare and severe complication of EDS. Along with these symptoms I also have daily joint subluxations (partial dislocations) and dislocations, soft velvety skin, stretchy skin, and easy bruising. I honestly could not make this stuff up if I tried.

My worst symptoms of EDS are the digestive issues (the paralysis and organ prolapse combined) and MCAS which has sent me into atypical anaphylactic reactions to so many different things. Essentially I'm allergic to life but my worst triggers have been nutrition (oral, enteral and parenteral nutrition) as well as various chemicals in medications- which is why I'm not on many medications right now.

Everyone with EDS and it's various comorbid conditions is different. This is just me. I didn't know about EDS before I was diagnosed and now I know more than most of my doctors. Though I never imagined my life would be like this I am grateful for my feeding tube, benadryl, and face masks (as well as my old central line) that have helped keep me alive as well as for my wheelchair, catheters, braces, ring splints, forearm crutches and heating pad. 🙂

I think the biggest lesson I have learned through all of this is that you have to believe in yourself. I had to learn to listen to my body because doctors studied medicine, but they only know textbook and I'm definitely NOT text book!

Now here is the link she gave in her post. My EDS stories/EDS Awareness

Now you are a little bit more aware.

Smile. Make the day a brighter day.

Instagram and Me by Bonnie Le Hamilton

Since when is Instagram a dating service?

This is a legitimate question. I really need to know, because I seem to have become the desire of every Tom, Dick, and Harry on Instagram. And this is why I changed my profile picture to include my wedding ring.

Yeah, I know, I’m a widow, but I’m also not looking.

Someone else might get bored living alone, or living with just one pet, like I do, but that someone isn’t me.

Hey, I don’t mind them following me, but messaging me? Especially messaging me like you already know me! This is not smart. I can see right through that. Though I also got one message from a guy who started right into giving me his bio, which included the fact that he owned two liquor stores. Clearly, he doesn’t know me.

Just for the benefit of everyone who thinks both that Instagram is a dating service, and that I, as a widow, am looking for a man, you lose me at the mention of things like coffee and alcohol. Because even if I were looking, which I am not, those things are against my religion, so, I’d never pick a guy like you.

Except there is the big issue of I AM NOT LOOKING!

Yes, I am a young widow. And yes, there is no taboo in my church about widows remarrying, but its personal choice. My choice is to stay single.

I have a cat for companionship and I have family nearby, why do I need some man to share my home?

So, what could be prompting these men into thinking I’m searching for a man?

It can’t be financial, because while I do have money, I’m barely making ends meet, and what money I do have is all tied to being Tom’s widow. Meaning, if I remarry, I would lose all my income and my health insurance. No thank you.

And, just a word of warning, with my health issues, and bills, no sane man would want to take all that on.

Or maybe they think I’m looking because I’m a widow and a romance writer. Both are mentioned in my Facebook profile. But there is no rule saying a romance author has to have a romantic life, and well, I am an author. We're more like hermits. We like to be alone. It’s easier to write that way.

What’s really confusing me is the ages of these guys. Some of the messages I’ve gotten come from guys who seem to be in their twenties by their profile picture. Twenties? Really? Come on, I turned twenty in 1982. My identical twin sister’s youngest is nineteen.

Even if I were looking, I wouldn’t be looking that young.

And liquor store guy? Well, he informed me right off that he’s 45! That would mean he was born in like 1975. Guess what, so was my middle brother. I used to change his diapers.

I was a teenager when Ben was born. So, if I’m old enough to have changed the diapers of someone your age, I’M TOO OLD FOR YOU!

And yeah, I have considered that all these men might actually be scammers. Some may not even be men. I am fully aware of what Catfishing is. And I have watched Dr. Phil on this topic.

So, it probably boils down the money issue or they think I’m gullible.

Honestly, I almost got taken in by one guy. But he started out about some bracelets I’d made and posted on Facebook. Ok, cool. I thought he wanted to purchase one.

First, he wanted a color I didn’t have.

No problem, he could wait for me to make that color.

Then things got weird.

He started messaging me constantly, talking like we were dating or something, and how he wanted to meet me. The thing is, at one point he said he was from Salt Lake – just a couple of hours drive from me, but when I mentioned having plans to go to Salt Lake, he wasn’t there, he was stuck out of the country at the moment because of his job. Sounds fishy to me. As in cat-fishy.

Yeah, I ended up blocking him.

But the messages are still coming, so I sort of hoped changing my profile picture to show my wedding would help.

Men, FYI, a widow who doesn’t take her wedding ring off, is not ready, or willing, to date.

My wedding ring is firmly in place and I have no intention of taking it off.

Now to the topic of writing. I haven’t gotten a lot done in the last couple of weeks. Actually, I’ve managed no writing at all since my last blog, but I finally finished editing “Mathias’s Dilemma”!   

Anyway, happy writing everyone!

My Rant by Konnie Enos

As a writer, I hear a lot about self-publishing. Going this way used to mean you weren’t a good enough writer to make it in the big leagues. I’ve heard this isn’t the case anymore but I’m beginning to wonder if the vast availability of new books/authors is making our reading choices less.

It’s not that there aren’t more books out there; it’s that there are fewer and fewer well written and edited books offered. I’m also starting to discover how well written a book has little to do with the author's experience or whether or not it’s self-published.

Recently I read some books that weren’t self-published and weren’t the author's first books.

One of the stories I found compelling and it kept me reading but in the end, I felt cheated. She carefully crafted the story where one young woman was in a new relationship with ALL the red flags and her four friends were worried about her but would not listen to them when they tried to voice their concerns. She ended up running off and eloping with this man and then moving to another country in Europe. Through all of this, her friends are worried about her and trying to find ways to make sure she is okay or rescue her if needed.

My problem is, in the end, the author just drops it. Leaving this woman as happily married without ever giving the reader any reasons why the marriage isn’t abusive. If you’re going to put in all those red flags then you had better tell the reader why they were false indicators or they are going to assume the young woman is still in an abusive relationship and you didn’t finish the story.

Another story I read was about a young man who experienced both abuse and bullying growing up. The abuse was bad enough the local cops were quite familiar with his family. Eventually, during one of his father’s drunken rampages, the young man managed to hit his father just hard enough to unbalance him, causing him to crash down the stairs and through a banister to his death.

The problem is the whole premise of the story is the young man thought he’d gotten away with murder so know he’s going to kill his bullies too.

One, I can’t think of a soul who wouldn’t have seen his father’s death for what it was. Self-defense. Two, in fourteen years he killed only two of his bullies and in the same way. Then he killed one lady and attempted on another (again the same way) before making three very different attempts on one lady and another attempt on a different lady all in a matter of months. Yes, killers escalate, but drastically changing his timeline and M.O.?

I also had problems with the cops taking over a decade to figure out the first attempt was murder and another couple of years to decide who his targets were while they never realized the second and third murder had anything to do with the case and never, in fourteen years, figured out who was doing it. The clues were in the story. The entire world is not so dense they can’t figure it out.

I’m just tired of reading published stories with clear flaws in their storyline or huge plot holes, clear telling, redundancies, echo, and grammatical errors. However, what really irritates me is published books with extra or missing words. Well, that irritates me in drafts too but authors should edit well enough to eliminate this issue. They should also know their craft well enough to not have plot holes, telling, redundancies, echo, and grammatical errors in their finished product.

So I’m wondering how writers go about editing their books that they are missing these issues. Do they rely on the same handful of people who can’t get these problems fixed in their work? Do they not hire a professional editor?

I’m still unpublished, but I know I need to correct any and all of the errors mentioned above so I don’t know how or why published authors aren’t making the same effort. Yes, I’ve read books by well-known authors with an error or two, which I forgive. Somehow, they missed it in the editing. But those are small, a missed or extra word here or there. One story has a wrong name in one place (confusing but oh well, it’s just one error).

I find the ones with large, glaring errors annoying.

Since I’m still unpublished, what tips do you have, for other writers, to find and eliminate these issues in their works in progress?

Let’s work together to make our writing better.

My Thoughts by Bonnie Le Hamilton

I hate all the “May the fourth be with you,” and “Happy Cinco de Mayo,” stupidity. Star Wars is fictional and Cinco de Mayo is to celebrate being Mexican as in they are proud of being Mexican rather than American, but they live in America!

And I do understand why they live here. Better standard of living, a better job and education opportunities, but it’s like the scripture that says, “No man can serve two masters.” If you love one country, you hate the other.

Yeah, that may be an unpopular opinion, but it is true.

I’ve actually started to think St. Patrick’s Day falls into the same category as Cinco de Mayo, both are celebrated more here in America then in their so-called countries of origin, and both are about celebrating the heritage of the people who immigrated from those countries.

Yeah, St. Patrick’s Day has been around longer, but to be honest, it started in America to celebrate being Irish. But what happened to being part of the American melting pot? What happened to unity? Why can’t we all just be American? Not African-American, not Irish-American, not Hispanic-American, not whatever else, just American!

I don’t consider myself Native-Dutch-English-Welch-Scottish-Irish-American, but technically I am. And I don’t look at my neighbors and see race. I see my fellow American citizens, nothing more, nothing less. And I don’t care about their skin color either.

Not that I haven’t been accused of being a racist.

I have been a couple of times.

The first time happened while I still lived at home.  

We lived on a corner, at the beginning of a cul-de-sac and I spent a lot of time watching the three youngest members of our family. I always told them to stay in our yard, and not go into the street, or outdoor playtime would be over.

And I had to haul them in from the street several times, but one time, I discovered them up the street playing with the grandkids of an older couple that lived there.

Well, they broke the rule, so I hauled them inside for breaking that rule.

The next day that couple called me racist, which is when I learned they weren’t in the street alone. I hadn’t noticed those other kids, just Ben, Dan, and Patty, that’s all. Three little kids (only the oldest was in school at the time) playing in the street! The street where cars could be, and they were too short to be seen. That was the only thing on my mind, not the fact that they were people of color.

Years later as a Navy spouse living in base housing. Think townhouses, four in a row, thin walls. I lived in the next to the last one.

I had lots of problems with noise from the neighbors blasting their stereos. Once it was my neighbors on either side trying to drown out each other, and I was caught in the middle.

I walked over to the office and complained.

A few days later I was returning home from the store when the neighbor on the end walked over and blocked my path to my door.

He looked me right in the face and said I was racist.

I asked him what proof he had.

“First, you hate rap music.”

Excuse me? I couldn’t figure out how repeatedly complaining about his loud stereo equates to him knowing I hate rap music. It couldn’t be about the complaints because the neighbors on the other side were blasting music I like! I still complained about them, almost as often as this fellow.

“Second, you’re white.”

Wait. What? “That’s a prejudicial statement in and of itself.”

“I can’t be prejudiced, I’m black.”

Behind him, his wife had buried her face in her hand shaking her head slowly. Yeah, she was smart enough to realize how dumb her husband was.

Later I talked to her about it, including asking her how she could allow her husband (the stepfather of her FOUR young daughters) to play that crap around her children.

She shrugged. “It’s just entertainment.”

“Have you listened to the words?” I know it’s changed since then, but back then, that kind stuff was mostly about degrading and raping women. It was sick.

She didn’t know what to say at the time, but a day or two later she informed me she made him move his stereo off our shared wall. I never heard that crap again. Though I have no idea if she realized that wasn’t decent stuff to be listening to, especially around impressionable children.

And I can’t be the only one who has experienced this kind of reverse discrimination since I’ve seen examples of this on social media quite recently. Do any of you have such examples?

Happy writing everyone.