The Flowery Journal My Sister Gave Me (Part 3)

So, here's more from my 1996 question/answer journal.

I first started school when I was 5 years old and went to John Muir Elementary School. 

The school still exists and has a website. 

I see that the school year begins on September 4. In Texas, it starts earlier—in August.  

But on balance, their year ends on June 11. Here, the year usually ends late May or the first few days of June.  

Now I'm looking at their policy for absences. I loved this school when I was a child, and I'm continuing to love it today.  What I usually see, when I look at schools, is very strict policies about kids missing school. The only excuses are illnesses and death in the immediate family.

In this Madison school district, they have pre-approved planned absences.  If the family gets permission beforehand, the school might approve absences due to family vacations, birthday!?, college visits, death outside of the immediate family, passport renewal....

When I was a student at John Muir, we took a trip to Disney World, and I vaguely remember that this was allowed by the school. I was asked to keep a journal of the trip as a way to keep up with my education. I've always thought it was really nice that the school allowed this. I love that the school still has this policy.  Now THAT is what I call having family values.  

Well, and not only does it help families spend time together. But it also helps popular tourist locations have a better balance of visitor rates throughout the year.  

Here's the latest issue of the school newspaper. 

On June 7, they had an alumni day. JMM seniors come back to visit. I'm not sure what JMM is. Maybe the middle school? 

John Muir has a community garden, and needs people to help with watering, weeding, and harvesting. That's quite lovely.

Well, I feel blessed that I spent my early childhood years at John Muir Elementary school. I wish we had stayed longer.  

What I've been told about my early school years-I was a quiet student.

See. Not all quiet, weird students become school shooters.  

Though, that being said. I didn't keep to myself. I wanted and had friends. But I'm sure there are also asocial kids who also don't end up being school shooters.  

Maybe it's not the quiet kid with friends who becomes a shooter; nor the asocial kid who doesn't want friends. Maybe it's the quiet, shy child who wants friends but can't find any strong, joyful connections.

Well, I think I've been THAT, as well, at times in my life.

How about the quiet, shy kid who wants friends but can't find any, AND who hates women (either secretly or openly)?

The first year of school I actually remember was Getting lost when Elizabeth didn't wait for me to go home. I had always followed her and didn't know the way by myself. Until that incident, no one realized I didn't know the way.

Oops. I answered that question wrong. They were asking what is the earliest year I remember. Instead I shared a specific memory. That particular memory was from kindergarten. I also remember a bit of preschool.  So, there's the correct answer to the journal question.

What I remember liking best-Probably recess. Silent reading.

I remember having fun on the tire swings. 

And what I liked least-Fractions, big projects.

Funny. I think even when I was a teacher, I didn't like big projects. Probably, it was mostly down to my own laziness.

But looking back to my school years, I remember a project where my dad did most of the work. He took control.  And I remember another project in which grades seemed quite dependent on how much your parents were willing to pay for materials.  

I'm sure, though, that big projects are sometimes very positive, helpful experiences. 

How I remember my primary school years-I remember liking it, but I don't remember much. I think 2nd and 3rd grade was my favorite. I think my favorite memory was playing on the tire swings at recess.

I swear. I didn't see that last bit before mentioning the tire swings above.

I guess tire swings were very important to me.  

I wonder if John Muir still has the tire swings.

How I remember feeling when I was at school-nervous, happy, stressed out. 

A variety of emotions. I'm sure that's normal...for most humans.

How I felt around other children-Scared, left out, happy sometimes.

I remember being happier in Madison. 

Maybe I'm looking back with rose-colored glasses.

Or maybe I was thinking about my later elementary school years (3rd-6th grade). In the middle of my 3rd grade year, we moved to St. Louis.  I was less happier there.

Teachers, activities, and event that left a lasting impression-Mrs. Skurah and Mr. Hagensen, the corn unit, Lien-Qui, 6th grade camp, Missouri project, dressing up as Eisenhower. Wait these are just memories. I think the whole experience impressed me.  

I'm wondering about my comprehension skills back in 1996. Did I not know there's a difference between leaving a lasting impression and being impressed?  I mean I guess those two things are somewhat connected, but...maybe not exactly.

I think if you can remember things in your life from 10-15 years ago...or more! Well, I'd say they definitely left an impression.

And now it's more than 30 years later, and I STILL remember those teachers, the corn unit, some of my friends, 6th grade camp, the Missouri project (this is the one that my dad helped me with) etc.

I have less memories of dressing up as Eisenhower, but it does seem vaguely familar.  

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online  a novel by Dina Roberts 

The Flowery Journal My Sister Gave Me (Part 2)

I'm reading more of my 1996 question and answer journal.

Now I'm on a page about early memories.

My first recalled memory is of-Pooping in my crib. Going to Sesame Street Live.

Now I've totally lost that memory. I don't remember it happening. Nor do I remember remembering it. If I hadn't written it down in this book, the memory might have been lost forever.

Strangely, I remember my sister's earliest memory. Though I'm not sure if I remember the event that she remembered or if I remember her talking about it as her earliest memory.

The memory involves a Christmas party and a little doll she received. I have vague memories of it. But I might have formed an image when she shared the memory, and now I'm confusing my imagination with memory.

What still remains vivid after all this time-Camp Shalom is extremely vivid for some reason. Cookies with fruit in the middle, the bucket of water to wash the sand off of our feet, the counselor who looked like an ape, the Tuesday night sleepovers.

I'm sure I didn't mean anything racist by the ape comment. I think all the counselors were white Jews.

It's probably also not wise to refer to Jewish people as apes.  But since I AM a Jew, do I get a pass?

Plus, scientifically ALL humans are apes anyway.

And no, I don't actually remember that particular counselor. Another erased memory.

I do remember the cookies, bucket, and sleepovers.

People and Places I Still Remember-Camp Shalom, John Muir school. Madison neighborhood. Laura S, Janine G, Elizabeth S. Alissa. The playground at the Madison zoo with the multiple type of swings. Devil's lake. Grandma's old apartment.  

I still remember all that and have a huge soft spot, in my heart, for all of it.  I loved my Madison life.

I wonder if the Madison zoo still has that same playground

Here's the Trip Advisor page for the playground. I'm going to look at the photos and see if it sparks any memories.

Wait. Never mind. I think it's mostly pictures of the zoo itself.

I'm Googling for images. This blog has pictures of what must be the new playground. I don't remember it.

The happiest memory-Playing with my Jewish friends. Alissa, Deborah, Stacy G, etc.

Well...see... in the 1990's I went through a stage of being obsessed with my Jewish identity. So I think this was influencing my memories of the past.

And the saddest one-Moving away from Madison.

I'm still sad that we left.

Although I don't think I could handle the cold.

The memory that most captures my childhood was-Camp Shalom-Being afraid of the Jewish persecution games, capture the flags, sleepovers, etc. In other words, fear controlled my childhood.

I'm confused by the question and my answer.

And I can't believe I didn't mention my Exorcist drama.

I do agree that fear played a big part of my childhood. But I'm not sure how that connects to capture the flag and sleepovers.

Except I was scared to participate in the Tuesday night Camp Shalom sleepovers. I think there were a few times that I had intentions to stay but then ended up going home with my parents.

I do think the capture the flag game made me nervous.

As for the Jewish persecution game. This is what I remember: All the campers and counselors were in a building. They told us we were going to have to escape and that if we were hurt, the counselors wouldn't help us. I think they meant if we were mildly hurt. Like we skinned our knee. I don't think they'd force us to deal with a head injury or broken arm on our own.

I think we were supposed to escape through windows?

Then we had to go on canoes.

Another child and I sat there crying near the water.

It all sounds nuts.

A part of me thinks I must have twisted it wrongly in my head. But this was the the late 1970's or early 1980's.  It wouldn't surprise me if these kind of things went on back then.  Even now, teachers plan some crazy ass educational activities.

Okay. I just Googled and found something that gives me memory-validation.  It's about a film regarding the whole Jewish camp thing.  The site says: The story appealed to Zalutsky beyond just its cinematic qualities—it resonated with him on a personal level. He remembered a night at his own Jewish summer camp where the counselors turned the lights off in the rec hall and explained to the campers an activity in which they were refuseniks, the counselors would be KGB agents, and they had to make it out of the country. It was designed to engage them with the movement to aid Soviet Jewry, but it mostly just freaked them out. These are chilling scenarios to be thrust upon an idyllic summer camp experience, and that’s part of what drew Zalutsky to the project.

I'm looking at the film website now.

I'm very glad to know that other people have these memories.

I just watched the trailer, and the kids are wearing Camp Shalom t-shirts.

I wonder if it's the same Camp Shalom I went to.

How many Camp Shalom's are there?

Well, I Googled. There seems to be a lot of them.

Anyway...besides the scary bits, Camp Shalom was a ton of fun.

I loved that place.  

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

The Flowery Journal My Sister Gave Me (Part 1)

So...

I'm going to get back into my self-indulgent journal/diary posts.  

This next one is from 1996. I was no longer using the Hallmark lock and key diaries. This one was a question/answer journal.

I'm skimming through and seeing that I didn't answer every question, but I did answer quite a few.

By the way...speaking of journals. One of the reasons I went on hiatus is I wanted to spend extra time writing in a private journal. That decision was inspired by reading my old Livejournal entries and my old diaries.  

Because I've had experiences with gaslighting, I'm extremely grateful to my younger self for writing things down. It feels good to have verification of memories. Also, as I'm a victim of gaslighting, I'm also a victim of my own memory losses. When reading these private journals, I come across things I have somewhat forgotten or totally forgotten.  

I want to do for my older self what my younger self has done for my present self.  

This public blog helps a bit, but not as much. I know I seem overly open at times, but there's still a lot I hide...especially when it comes to bitching about other people.  And a lot of times I talk about things in vague-terms. I kind of make hints about the drama. Sometimes I can read an old post and know what I'm talking about. Other times I read an old post and think, what the hell was I referring to there? 

Anyway...onto the flowery journal.

Wow! I just saw something that's a bit sexist in the journal.

The book says, At the time, my father worked as a (blank) while my mother (blank).

Fuck the creators of this book.

Why is it assumed the father is working and not the mother?

Anyway, I liked how I answered. 

I said, My father worked as a law student while my mother worked very hard as a mother.  

I just realized the book is not very welcoming towards people who have single parents or people who have gay parents. Hopefully, people creating books like this today are being more careful to be inclusive.

More stuff....

How I got my name-I was named Adina after my great grandfather Arthur Propper. That's how they got the A. The rest was taken from a baby book.  

I stopped using Adina a long time ago. I didn't like the way it sounded when people said it.  I felt like they were saying, A Dina. Like...I'm not THE Dina. I'm A Dina.  Not that I needed to be THE Dina. I just wanted to be Dina. I didn't want an article in front of my name.

There have been times I've regretted not keeping the original name. For example, when Idina Menzel came into my radar. I like her, so it would have been cool to have a name that sounds like hers.

And also, now Adina kind of sounds exotic to me. 

Plus...my name would have the same first letter as Australia.  

What I've been told about my birth-My mom's pregnancy was predicted by a tarot card reader. I was born at 7:00 in the evening and I peed at the delivery so everyone thought I was a boy. I guess boy babies are expected to pee on everyone.

I love the tarot card thing. It makes me feel supernatural.

If my EEG says my brain is okay, and I don't feel like blaming it on psychology....I might go the supernatural avenue.  MAYBE my myoclonus is a precursor to getting my powers.  

As for the peeing thing. Did they not notice a lack of penis? On TV, when someone has a baby, they're so quick to announce the gender. Does that not happen in real life?  Did my urine block the view of my genitals?  

And about my babyhood-I think I was a good baby, as in easy. At least I was easier than my sister. I don't think I cried too much.  

I was easy as a baby, maybe.  As I got older, not so much. Though I was usually well-behaved, I had emotional issues, sensory issues, fine and gross motor issues, etc.

And...that's it for now.  

Click HERE for the index to my diary/journal posts.

Read my novel: The Dead are Online 

Flight Delay

I finally got around to watching Elin Ersson's dramatic airplane protest against a man being deported to Afghanistan.

I'm totally on the left, so I SHOULD be greatly touched by her actions. I should admire her. I should  feel compassion and support.

I feel the correct feelings when athletes kneel during "The Star Spangled Banner". And my blood boils when the MAGA cult manipulates the conversation into being about disrespecting the military rather than racial injustice.

So...what's going on?

I think a part of it is the awful fact that I have a selfish side.

I picture being on the plane; wanting to get where we need to go; and being delayed.

I hate long plane rides as it is. I wouldn't want them to be longer than they already need to be.

But of course. My inconvenience has much less importance than a man's life.

Obviously.

I wonder, though. Does my inconvenience have much less importance than a gesture that ultimately might not save a man's life?

Well, yes. Probably.

I have these conversations with myself after watching the video. Because I want to feel what the other left people are feeling.

I think of the Holocaust. Of course. I'm Jewish. We do that.

I tell myself airplanes are delayed for other reasons. Mechanical failure. Weather. Racist flight attendants. So what difference does it make?

And still I feel uneasy about it all.

Then I start to understand what it is.

It's the idea that not everyone goes on a plane for a business trip or for an adventure they can show off on Instagram.

Some people might be trying to get to a wedding.

They might be trying to get to a funeral.

And I think of a scene from the book and TV movie Alex: the Life of a Child.

At the age of 8, Alex Deford is living her last day of life. One of her last requests is to drink some root beer. Her father goes to the grocery store to pick some up. As he stands in line, the person at the register chats cheerfully with the customer in front of him. The transaction happens at a pace that's way too leisurely.

In normal situations, we're supposed to be patient about these things. We're not supposed to check the time on our phones. We're not supposed to groan. We're not supposed to roll our eyes. We're not supposed to speak up and say things like, I have an important meeting I need to get to.

But what if the person waiting is not in a normal situation?  What if their young daughter is dying at home?

So I think that's the main reason Elin Ersson's protest makes me uneasy. I picture dire situations. I picture people in a rush to get to a dying loved one.

A part of me is saying, well...isn't that a bit dramatic and far-fetched?

Another part of me is saying, Not really. Humans die on a very regular basis. I'm guessing there are a lot of people around the world, at every moment, rushing to get to their dying loved ones...or severely injured ones.

My parents rushed from Atlanta Georgia to Athens Georgia after learning that their daughter had been hit by a car and had a massive head injury. The drive was less than two hours, but what if a protester had made it much longer. What if the protester had stopped traffic?

Jack might end up going to a college that's far away. I want him to feel free to go as close by or as far away as he wants.  But I AM afraid.  One of my biggest fears is I'll experience what my parents experienced. I fear I'll get a dreaded late night phone call.  I'll want to be immediately by my child's side, but I can't.  Because I have to wait for a car or plane to take me there.  That whole story is terrifying and depressing on its own. The thought of being delayed because of a protest makes it even worse.

Still. Do I make sense? Is there a way to not be in love with Elin Ersson's actions and still be a compassionate, decent human being?

I hope so.

I'm not 100% sure.

I guess the thing to do is take myself out of the shoes of the imagined people who are in a rush to see a severely injured or dying child, and put myself in the shoes of asylum seekers.

What if someone I loved was on the plane being deported to a dangerous place?  Would I want people to fight back?

I definitely would if their actions had a strong chance of stopping the deportation indefinitely.

Or how about another scenario?  If my loved one was having a heart attack, would I want the plane to be delayed so my loved one could get medical help?

DEFINITELY, yes!

Though I'm sorry for anyone on the plane who is delayed from seeing THEIR very sick or injured loved one.

I'm 100% for actions that directly save lives.

I'm 100% for actions that indirectly or symbolically save lives, but not 100% for these actions if they might create significant hardships for other people.

But my emotional turmoil is far from over.

A name is peeping in my brain.

Rosa Parks...and the brave woman who came before her.

Were the buses delayed because of these women?

I'm assuming they were.

And a passenger on one of those buses might have had a desperate need to get where they were going.

But without Rosa Parks and other brave, strong-willed women?

Well, things are still horribly awful for black Americans. But without Rosa Parks, they'd likely be even worse.

Shit.

My mind is a mess.

I wish I could end this with a neat conclusion, but my thoughts and emotions are far from neat.

I don't like what Elin Ersson did. It doesn't make me feel warm and fuzzy inside. It makes me feel annoyed and anxious.  Yet I feel with all the shit in the world, there might NOT be a better way.

I'd like to live in a world where voting and non-confrontational protests make a big difference. But too often it seems like these things are not enough.

Life fucking sucks sometimes. There. That's my conclusion.  

What would our world be like if we

knew for sure there 

was life after death, and 

we could easily talk to our 

dearly-departed on the Internet?

The Dead are Online a novel by Dina Roberts 

On a Boat with Some Rafters and Toadie

I had a lot of dreaming last night.

Most of it seemed to have a The Silence of the Lambs aura or connection. And that is fitting, because we watched some of the movie last night.

There was a moment with looking for props from the movie and mention of fava beans.

There was also something with Anthony Hopkins on social media, and he used some kind of cool trick with a blue balloon.

There was a moment with looking for props from the movie, and a mention of fava beans.

AND....

I dreamed I was on a boat with some Aussie TV characters, including Dave Rafter and Rachel Rafter from Packed to the Rafters, and Toadie from Neighbours.

Rachel almost drowned, and in the process of saving her, Dave DID drown.

I don't remember what Toadie was doing. I guess he was just there.

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-beloved to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

My EEG Experience (part 2)

So...here are more thoughts about my EEG worries (that I mentioned in a previous post)


Wishing For Symptoms

An EEG works best if you actually have the symptoms that concern you. I have symptoms every day, but on some days, I have hardly any symptoms and on other days, I have a lot.

With the myoclonus, I got the idea that the level of the symptoms were connected to my menstrual cycle.  It seemed like I was at a low level the week of my period and the week after; then things would be more intense in the two weeks after that.

BUT...then I changed birth control. Instead of having two weeks high and two weeks low, it seemed to be close to off.  I had tiny bits of myoclonus just a few times a day. It was close to nothing.

This was a bit confusing and frustrating, because it was at that time that I had my neurologist appointment.

Should you go to the doctor if your symptoms have disappeared or greatly reduced?

I decided to keep the appointment, since a) I was still having SOME symptoms b) I didn't know if the level of symptoms might change again. I figured maybe this birth control hadn't reduced my symptoms. Maybe it had just changed the schedule.

Sure enough. Soon after the doctor appointment, the myoclonus became more frequent. And now it seemed instead of two weeks on, two weeks off, I was on a schedule of one month off and one month on.

Though I wasn't quite sure about it, since I hadn't been on the pills long enough to know the actual pattern of it all.

But I worried that during the EEG, I wouldn't have enough symptoms, and the whole thing would end up being a waste of time and money.

I decided to do what I could to increase the symptoms.

I did a lot of Googling and learned how female hormones effect epilepsy. Apparently, estrogen increases the change of seizures and progestin decreases. Therefore I wanted to increase my estrogen.

I did more Googling in hopes I could find foods and drinks that might help me.

It was confusing, and I realized that some of the websites I was consulting seemed to be a bit of the pseudoscience sort. No...NOT the ones about epilepsy and hormones. I think those are legit. But the ones about food.....

Well, some of it seemed to be legit.

The conclusion I eventually came to was that soy might help me increase estrogen, and green tea might reduce it.

So for the weeks leading up to the test, I ate a lot of edamame and soy ice-cream and I avoided green tea.

Oh, and I also ate licorice, because...well, I guess I read something that convinced me this would work. 

Now when I say I ate a lot of soy, it's not like I overdosed. I probably ate what's normal for person in Asia and/or who's vegetarian.

I guess what I'd say is I didn't eat servings that were larger than usual. I just made sure to eat soy every day.  During other times, soy is more of a maybe thing. I eat it when I'm in the mood or we order from an Asian restaurant.

Anyway....

I'm not sure if my symptoms are truly related to my hormones. Nor do I know if the special diet worked.

But symptom-wise, things worked out quite well for me.

This could be because I DO have epilepsy, hormones play a part, and the foods I ate helped manipulate that. Or it could be a coincidence. Or it could have been some kind of placebo effect.

Either way....

I had a fair bit of myoclonus during the test. I don't think it's the most I've had, but it was enough to prevent me from thinking, Why the hell did I get this test when all I have is a few twitches now and then.

The crazily good thing is that on Wednesday I had major symptoms.

I have other symptoms besides the myoclonus. One of them is the worst symptom I have, but I fortunately don't have it too often.  This is where I get this weird/bad feeling which sometimes leads to a 1-2 minute episode where I spit up huge amounts of saliva. I've had this for years and have had no idea what the hell it is. I don't think I ever suspected epilepsy. But when I started looking into epilepsy because of the myoclonus. I started wondering if these episodes could be a type of seizure. Then recently I found an article about a man with symptoms that are somewhat similar to what I experience. And it turned out he has epilepsy.

I hadn't had an episode since April, so having one for the test seemed kind of lucky. Usually I hate having the episodes, but with this particular episode, I felt I had hit the jackpot.

AND another one of my brainy symptoms is hallucinations. I have had audio ones, usually when just waking up from sleep. But I hadn't had one in several months. On Wednesday night I had one. So that was cool.

The good thing about having symptoms is I can get a more accurate diagnosis.

I can find out if the symptoms are epileptic seizures...or if they're something else. Mental issues? Our house is haunted? I'm possessed? I'm an alien disguised as a human?  Those kinds of things.

If I didn't have all these symptoms, I'd be less satisfied with the results of the test. If it comes out negative, I might think, Well...so that myoclonus isn't epilepsy, but how about the spitting episode?

Financial Issues 

We're American, so we don't just have to worry about having health problems. We have to worry about having a financial disaster each time we have a health problem.

The (maybe) good news is that, with our current insurance, we chose to pay a high monthly fee and get a low deductible. With my MRI and some tests that Tim had done, we've already met our deductible.

I'm not sure if this means all our future tests this year are free; or if we have to pay a copayment percentage.  If I lived in a country with reasonable healthcare prices, the latter wouldn't be so worrisome. But in the US, you don't know what kind of price tag you're going to see. The doctor's office could decide they want to charge $30,000 for the EEG. And even if the insurance pays 80%, we'd still be stuck with a $6000 bill.

I'm thinking we should have asked the price of the EEG. We did make sure that the doctor's office checked to see if it would be covered by insurance. But we didn't ask the actual price.

Well, I just read something that made me feel a bit reassured.  This website says, without insurance, a 24 EEG would cost about $3000. So that might be $9000 for three days. If our copayment is 20% that would give us a price tag of $1800.

And that kind of sucks, because we could buy some good plane tickets with that money. BUT...it's better than some situations.

Now that I think of it, I think WE did ask Victor Remmers, the tech guy, how much it would cost. This, though, was when he was already at our house with the equipment. I wanted to know the difference between the EEG without video and with.

Unfortunately I don't remember his answer. I think I was too busy being annoyed that they seemed to be pushing the video on me. 

Cats

I had a slight worry that Yeti and Annie would be scared of the wired version of me.

Fortunately, the cats ended up being totally fine.

They didn't treat me any differently.

I still got an ample supply of feline-affection.

The other worry was that the cats would chew on the colorful wires. They didn't.

Yeti went after the backpack straps a couple of times. That's about it.

REMOVAL

The wires were attached to my scalp with glue.

I assumed Remmers would put the stuff on AND take it off.

The day Remmers came to put it on, I learned I would be taking it off.

He said we should use coconut oil or acetone.

I had this bad feeling that the removal would be easier said than done.

It ended up not being so terrible.

The best thing is Tim was absolutely wonderful. I expected to have to go at it alone, but he insisted on helping. He actually did more work than me...at least in the initial stages.

Well...and he he Googled to get insight and instructions about the situation. And I hadn't. (which is so uncharacteristic of me!)

I'm thinking...

You know that whole love language thing?

Maybe Google is my love language.

I think if someone Googles to learn more about me or something I'm enduring, it's a sign of love.

Or at least it shows they care or are interested.

So anyway....

Tim Googled. He helped put the coconut oil in my hair, and he helped pull off the tape and wires.

Getting the wires off my head went smoothly.

Getting the actual glue out of my scalp was a little more difficult.

A little came off in the shower. A lot came off when I brushed my hair. Quite a bit stayed in my hair.

Another issue: I put too much coconut oil in my hair and didn't do a good job removing it.  I didn't quite realize this until hours later when I saw my hair still looked wet. I realized my hair wasn't wet with water. It was still soaked with coconut oil.  This is probably also about the time that I realized I still had quite a bit of glue in my hair. It looked like dandruff, and we had gone out to dinner with me like this.  I wonder if the waitress noticed!  Hopefully she wasn't the most observant person, and hopefully it was at the level where you'd have to look close at my scalp to see.

Now I'm four showers past the ordeal. My hair is soft rather than greasy I don't see any more glue, and my scalp is less sensitive (it had been a bit sore this past weekend).

Negative Isn't Always Completely Positive 

When you have a medical test, it seems the proper thing to do is hope and pray that it comes out negative.

Yet there is a big part of me that would prefer the test to come out positive.

Judging from what I've read on message boards, I'm not alone.

I think if you're having symptoms, there's relief in knowing that there's physical evidence proving that these symptoms are real.

When I go to the doctor...if she says, your tests came out completely normal, I think I'm going to be embarrassed.

I'll be embarrassed that I told my family about my issues.

I'll be embarrassed that I got angry at some members of my family for not acting like they cared that much.

I'll be embarrassed that I blogged about it.

I'll be embarrassed that I went to the doctor's office for it.

I'll be embarrassed that I paid for all these tests.

Faking vs. Emotional Distress

When I first learned that my symptoms might be psychological, I was quite upset.

Slowly as I read more and more, I started to accept the whole idea.

I think one problem a lot of us have is that we blame ourselves for things that are not our fault.

Even if the issue is biological/medical, I think there can be some shame.  I remember in high school being petrified when I had to be tested for diabetes.  I'm sure some of the fear was about potential treatments and lifestyle changes. But I'm guessing a lot of the fear was also about shame. Stigma.

Even with basic things we feel embarrassment or shame. We're embarrassed if we have to shit in a public toilet. We're embarrassed when we fart. We're embarrassed about our periods.

So no. I don't think it will be that surprising if I end up being embarrassed or ashamed about having a psychogenic disorder.  And I don't think I should feel ashamed for feeling ashamed.

But I AM working on being less ashamed.

One thing I have told myself is that I can NOT control my self-conscious mind. And if this is a psychological disorder, the subconscious mind is what's causing the symptoms.

 It would be kind of like dreaming.  Just as I can't tell myself NOT to dream about a certain person, I also can't tell my toes, shoulders, legs, arms, face, etc. to not move.

This whole dream comparison. Well, when I thought it up, I thought this is how I'd explain things to my family. And then MAYBE they'd understand.

But I'm trying to come to terms with the likelihood that no matter how many analogies I provide and no matter how many articles I send, my family is going to feel that I've been faking it for attention. They're going to think I'm being overdramatic and silly.

For those who are reading this and think I should be more positive...I'll just say that it's already happened to some degree.

I told one family member that there's a chance it could be psychological. The response was something like, I don't get it! Why would you fake it? 

I tried to explain that I wasn't faking it, but I don't think I got through to the family member.

Also....

There's the fact that when I told my mom I was worried about having an eating disorder relapse if I went on a diet, she scoffed at the whole thing and told me I never had an eating disorder.  She said people with eating disorders are in the hospital and weigh 40 pounds. She said I had just been yo-yo dieting.

It hurts to not be believed. It hurts to not be taken seriously.

I have had a lifetime of psychological invalidation. When trying to communicate my fears, needs, thoughts, emotions, etc...I've so often been giving the message that I'm too dramatic, too silly, too picky, too negative, too sensitive, etc.

So with all that, I can't be expected to expect my family to be understanding.

And also with all that, I can't say I'd be surprised to get a psychological diagnosis.

My brain waves might be okay.  But all this invalidation and other shit has really fucked up my head.

Even if I get diagnosed with epilepsy, I am pretty sure that some of my symptoms ARE psychogenic.

Medication Fears

If my EEG comes out positive, I'll have the wonderful validation that comes from having a real medical disorder that can be detected with tests.

But if that happens, I'll probably have to go on medication.

Medication costs money. So that's one shitty thing. Though I think insurance will help a bit with that. Hopefully.

What bothers me most about medicine is the side effects.

Sometimes I read about side effects and I think, what the hell? I don't get it. The side effects sound worse, or just as bad, as the original symptoms!

Early on in this myoclonus drama, I thought to myself that I would fight against being medicated. The exception would be if taking medicine could prevent the problems from getting worse.  If all I have is some mild twitching and jerking, I think I'd prefer that over drowsiness, fatigue, vomiting, weight gain, liver problems, rashes, headache, etc.

BUT I have other issues besides the myoclonus and if those issues are seizures, that's another story.

I have this thing where I wake up in the middle of the night and have this awful feeling of weirdness. I can't describe it well. This happens to me almost every night. If this is a seizure and medicine will put a stop to it, will it be worth enduring the possible side effects? Or should I just keep my own problems and not trade them in for new ones?

Then there's winter. I've been starting to put the puzzle together. Whatever I have, it seems to get worse then I'm cold.  It seems I feel awful all winter from later afternoon onwards.  If that comes from messed up brain circuitry, I should probably say yes to the medication. I should probably skip the fight against it.

 It's when I think about all this that I start to think the psychogenic diagnosis might not be so bad after all.  I can skip the medicine and just hope that my subconscious stops trying to mess with me. Maybe I'll get some therapy to help with the process.

The Scary Stuff

When the myoclonus began, I considered some scary, fatal possibilities—brain cancer, Creutzfeldt-Jacob disease, Multiple System Atrophy, etc.

As months went by and I didn't spiral into a dreadful, scary level of disability, it seemed likely I didn't have the worst things out there.

After I had the MRI and didn't hear anything back from the doctor, it seemed reasonable to also rule out moderately dreadful stuff like MS and benign slow-growing brain tumors.

Then a few weeks ago, I was looking for information on myoclonus and EEG reports and I ended up reading a bit about the progressive myoclonic epilepsies. I had seen them mentioned before, but for some reason, I kind of skipped over it.  I think I thought it was something that happened to children, and since I was an adult this seemed unlikely to be the diagnosis.

But I learned recently that it can happen to adults.

The thing that stops me from totally freaking out is that these diseases are rare.

But that's not 100% reassuring. Because rare is not impossible.

What scares me the most about it is the genetic aspects. And that's all I'm going to say there because it's something I don't like to think about...or write about.

Diagnostic Mistakes

This would all be easier if I had 100% faith in doctors and medical technicians.

But I don't.

I'm a bit paranoid...partly because I'm a distrustful person and mostly because I've read horror stories.

My mind is swimming with what-ifs.

What if I have a tumor and it was too hard to see on the MRI because the imagining center didn't use contrast?

What if I have something serious on my MRI, and the results were misplaced?

What if the technician is playing a video game while looking at my EEG results and misses something?

What if something is seen on the MRI or EEG, but it's small, and the doctor decides it doesn't need to be mentioned.  I'll think I have a psychogenic problem until years later I end up getting another MRI and learn I had a problem growing all this time.

What if, because of medical misogyny, my tests are given little attention because it's assumed I'm just a typical woman with hysteria.

What if I don't have epilepsy, but something is over-interpreted, and I end up having to take medications I don't need?

I think I worry less about a false positive, because I've educated myself enough to fight back against that.

For example, I would know not to accept a diagnosis of epilepsy based on symptoms alone.  I feel lucky to be aware that some seizures-like episodes are actually psychological.  If the doctor ended up saying something like, Well, you're EEG came out negative but with these symptoms you're having, I'm still guessing it's epilepsy.  Let's try this medication here; I think I'd have the knowledge and courage to speak up and argue.

I can't say I'd have the courage to say things like, Are you sure you read my EEG carefully enough? Are you sure those were my MRI results?  Could you have gotten the wrong ones?  Are you sure there's not anything strange on my MRI that you're keeping secret from me? 

Well, anyway...that's about it for now.

I shall hopefully have more information in the next few weeks. I might not fully trust the information, but at least I'll have it.

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

The Unrealistic Solution to the Ticket Dilemma

I've been watching My Little Pony: Friendship is Magic.

I just finished watching episode 3—"The Ticket Master",

It annoyed me.

In the episode, Twilight Sparkle (Tara Strong) gets invited to some kind of fancy event. She also gets an extra ticket, so she can invite a friend.

The problem is, she has many horse friends, and they all want to go to the event with her.

Twilight Sparkle has a huge, stressful decision. To makes things even more difficult, some of her friends try to bribe her with favors. Twilight Sparkle, admirably, recognizes the bribing for what it is, and puts her foot (hoof) down instead of accepting the perks.

I did wonder how the show would resolve the issue. I had no idea what I'd do. And who knows...the answer might come in handy for me someday.

Well...no. Probably not. I don't really get invited to honorable events—much less get an extra ticket that people are going to fight over. BUT a realistic and helpful answer might have helped other viewers.

One idea I had is that Twilight Sparkle could invite her longtime friend Spike, the dragon (Cathy Weseluck). To me, it seemed the most logical and fair solution. The other friends were new to Twilight Sparkle's life. Spike had more time to prove his loyalty.

But no. Instead of inviting Spike, Twilight Sparkle declared if she couldn't take all her friends, she wasn't going to the event. She ordered Spike to return the two tickets for her.

I think that's way too self-sacrificing. Why should someone miss out on something important because they have over-eager, selfish, and demanding friends.

I imagine a screenwriter getting an invite to the Oscars. A bunch of friends fight over being her plus-one. They beg. They bribe.

Should this writer not go to the Oscars because she's afraid of offending one of her friends.

I think not.

BUT everything worked out quite well for Twilight Sparkle...too well, actually.

She gets to go to the event. After sending the letter refusing the ticket, she gets a letter back. The letter includes tickets for ALL her friends.

Now what's that episode saying to the child whose parents promise to take her and one friend to Disneyland for the day? If you use some clever passive-aggressiveness, you'll get to take ALL your friends? Well, not only will you be able to take your friends but also the people temporarily pretending to be your friend.

That might work for parents and other folks with unlimited funds. But it won't work for most people.

I'm thinking now of other solutions that might have been more viable.

Besides the Spike idea....

Twilight Sparkle could have said, sorry, no to all her friends and gone alone. The problem with that is she might have been lonely at the event and resented by ALL her friends.

Better idea....

Twilight Sparkle could have created a lottery. I think then there'd be disappointment, perhaps. But there'd be less anger, resentment, begging, bribing, etc.

Yeah. I think that solution would have been fair and much more feasible than the solution offered on the show.

My EEG Experience (Part 1)

Here are the things that worried me most about my 72 hour EEG. And some things still have me worried, because the entire experience isn't over yet.

1. That the doctors, at DFW Neurology, would insist I'd have to be videotaped during the EEG

2. That I'd feel absolutely disgusting because I wouldn't be allowed to take a shower for 72 hours.

3. That I'd not have enough of my symptoms during the EGG

4. That the EEG would end up being ridiculously expensive, and our wallets and bank accounts would be much thinner.

5. That my cats would be afraid of me while I was wearing all these wires.

6. That I'd have a horribly difficult time removing the wires and glue from my hair

7. That after all this drama, my test would will come out negative. I'll be stuck with mysterious symptoms that are probably "all in my head".

8. That if my symptoms are psychological, my family won't accept or understand that it's out of my control; that they'll believe I've made it all up.

9. That the test would come out positive and I'll end up having to take medication that gives me dreadful side effects.

10. That I'll end up having a horrible epilepsy that gets worse and worse. And worse than those worses; the epilepsy ends up being genetic and some of my genetic-loved-ones get the disease as well.

11. That my EEG report won't be read carefully, and I'll get a false positive or a false negative.

And now I'm going to blab on and on about all these things.

The Video EEG

When Dr. de Jesus suggested I get a 72 hour EEG, I was so relieved that she wanted me to have an EEG, in the first place, and that I was skipping the routine EEG; I didn't pay attention to the video bit.

One of my fears (that I forgot to mention above and I'm too lazy to mess with renumbering) is that I'd encounter a doctor who was completely dismissive and would assume, without any testing, that I have a psychogenic problem.

The first neurologist I saw wasn't dismissive and ordered a routine EEG. That was much better than nothing. But....

The problem with a routine EEG is there are a lot of false negatives. From what I've heard, the test is less than an hour. A lot of people don't have seizures on an hourly basis. I have hours where I don't have myoclonus.

Some people have weird brain waves even if they don't have a seizure during the test. But that's not the case for all.

I never had the routine EEG, because we switched insurances and switched doctors.

Doctor de Jesus jumped straight to the ambulatory EEG. I liked that.

It wasn't until hours or days later that I started remembering that the word "video" might have been included in the order.

I wasn't happy about that. I had told her my myoclonus is small. It's hard to see, and as far as I know, no one has noticed it. I'm not sure how a video would see it. Plus, a lot of the myoclonus happens in my toes. Unless they were going to point a camera at my feet, the camera would probably not pick up on anything.

Then I looked at DFW Neurology website and saw that they were promoting the fact that they now have video EEGs. I got this paranoid (or not) idea that the clinic had invested in these new machines and they now needed to find gullible patients to agree to using them.

The main reasons I didn't want a video EEG: invasion of privacy and wasted cost.

I don't want a tech hearing our family conversations. More importantly, I tend to have a lot of gas at night. I really didn't want to struggle to hold in all my farts in fear that a tech would end up hearing it all.

Though...now that I think of it, I'm not sure if the video also included audio.  If it was silent, maybe it wouldn't have been so bad.

But still...I don't think there'd be anything to see.

Anyway I played about two weeks worth of email and phone tag with DFW Neurology and eventually got the assurance that I'd not have to have a video EEG.

Then, when Victor Remmers, the EEG tech, came to our house, he had the video device with him! Remmers said we didn't have to use it. But he felt better keeping it with the rest of the equipment. He wanted us to keep it at our house. We didn't need to turn it on.

I got very suspicious and started asking Remmers if we'd still have to pay for the video bit. He said something like, No. Don't worry. The insurance will take care of it. WTF?! I don't think the insurance is going to pay for the whole thing. Besides that...as much as I hate insurance companies, I don't think it's right for them to have to pay for unnecessary (and actually unused) tests. Right?

I did a bit more questioning.  In the end, Remmers  decided to take the video recorder back with him. My feeling is they DID plan to charge me for the test and then realized I wasn't going to be that easily scammed.  Though he did say, at one point, that if the camera wasn't turned on, I wouldn't be charged.  I HOPE that's the case. I hope they weren't trying to trick me and the insurance company into paying more than needed.

 (Edited to add 7/11/19: Things turned out much worse than I would have ever expected. Read here for more info about that)

Three Days with No Shower

You are not allowed to take a shower during an EEG.

I was actually at an advantage here, because I take a shower every other day rather than every day. So I figured I'd have only one day of feeling gross rather than two days.

What about people who take multiple showers a day? They'd really be suffering!

I think, though, that I might have OCD-the contamination version. I wash my hands a lot and get grossed out by vomit, feces, and stuff like that.  I also have come to the point where I worry I'm going to contaminate other people with my own stuff. Like I'll wash my hands if I just touch the edge of my nostril, and sometimes the same goes for when I rub my eye.

I also do this thing where I wash my hands, dry my hands with a towel; then worry I didn't wash my hands good enough, and put the towel in the laundry.  Then I wash my hands again.

So yeah. I worried something gross would happen, and I'd have a huge need for a shower.

For example, if there was human vomiting...I'd need like 10 showers before I'd feel sort of clean again.

With cat vomiting, I can deal a bit better.  But I'd still prefer a shower.

Well...anyway, it turned out okay.

I never felt contaminated enough that I needed a shower. I felt only slight bits of contamination and that mental state was relieved fairly well with wipes.

I think what also helped is I avoided cleaning jobs that would make me literally dirty. I think this happens when I do things like dusting.  I think a bit of the dust ends up going on me, and I start to feel the literal dirt on my skin.

I also avoided sweating by doing much less stair-climbing exercises. And I cranked up the air-conditioning to avoid night sweats.

I really didn't feel too dirty by the third day. I thought I'd be rushing to take a shower, but it wasn't like that.

What WAS hard-but I survived-is the EEG backpack. The wires on my head were attached to a backpack that I could not separate from. I had to take that backpack into the bathroom with me.  This might be fine with some people, but I'm the kind of person who doesn't want to wear my jacket in the bathroom because I'm afraid it will touch the toilet seat.

When I poo, if possible, I take off my shirt because I'm afraid I'm going to end up touching my shirt between the wiping and the hand washing.

Yeah. I'm that bad.

And now suddenly I had a backpack stuck on me. I had to wear it while on the toilet.

I'm proud to say I mentally survived the experience. And maybe in the long run, it made me stronger.

It did help to have wipes available. I'd wipe the backpack down after most bathroom trips.

On top of all that, I didn't have a complete nervous breakdown over the idea that this backpack very likely had accompanied other people on their bowel movement adventures.  Sometimes I'd reassure myself with the idea that DFW Neurology decontaminates the backpack and equipment after each use. But knowing what I know about the medical profession and the spread of germs, I was pretty sure my reassurances were delusional.

So then I'd go the comparison route. How many times have I checked out library books that were once held by people taking a shit?  Before my maybe-OCD got this bad, I even read library books on the toilet.  I read most of Cold Mountain while suffering with a gastro illness. I don't think I cleaned the book before returning it to the library.

Anyway...to be continued.  

How would our world change if we knew for sure there was life after death, and it was easy for our dearly-departed to talk to us via the Internet?   

The Dead are Online, a novel by Dina Roberts 

Taking a Hiatus From My Hiatus

I feel awkward about writing this post.

Should I just jump in and pretend I didn't take a break for a few weeks?

Should I dramatically announce my return?

The latter would make more sense if I had a lot of people regularly reading my blog.

But I think I have about about 3 or less people that come on a regular basis.

Well...anyway. I'm back.  I might be back for a long time...and on a consistent basis. I might be back but with sporadic posts. I might end up saying screw this and take another hiatus after this post. Or this could be my very last post.  I have no idea.

Anyway...I thought I'd post some updates and random thoughts.

1. I still hate Trump and most of the Republican party

2. I ended up NOT having to wait a long time to see a neurologist.  I ended up with an appointment in early June. I had an MRI. I never heard back about that, so I'm guessing my brain looked unremarkable. Last week I had a three day EEG test. I'm supposed to get those results in August. I might write more about that in another post.

3. Our two cats (Annie and Yeti) are getting along decently. There's a fight with rolling, hissing, and growling at least once a day.  BUT most of the time they're sitting peacefully in the same room together, playing together, etc

Here's a lovely video of the same moment captured in the above photograph.  If anyone is interested.

And what kind of insane person would NOT be interested in watching a cat video???!!!! Huh?  I hope it's not YOU!

4. We watched season 2 of Westworld. That led us to needing to re-watch season 1. And then we ended up watching part of season 2 again!  I became quite obsessed. I love that show.  I don't remember loving it so much the first time.

5. Tim helped me define something I've liked for a long time: Midcentury Modern. I had no idea there was a name for it.  The conversation started when Jack told me The Brady Bunch house was for sale. I got very excited as he expected I would. I guess I then also mentioned loving that certain scene in Westworld.  Tim ended up telling me there was a name for that kind of style.  Well...this is something else I might have to do a separate post on.

6. We watched the It movie, and I thought it was pretty much crap. Though I did like Bill Skarsgard as Pennywise. I watched a bit of him in interviews, and I think he's adorable.

What I hated most is what they did with Beverly.

After we watched the movie, we went and re-watched the miniseries. Or really. I watched it. Tim ended up sleeping through the majority of it.

The miniseries is corny, but I like it a lot.

7. I watched the last season of Packed to the Rafters. The dementia storyline was incredibly sad, and I think quite well done.  I think it's the first time I've encountered a story where a character we've grown to know and like/love loses their memory. Usually I see things where we see a character struggling with a loved one, but we haven't personally gotten to know their loved one. I end up feeling sympathy for the character, but with Packed to the Rafters I felt my own sort of grief.

8. I watched the first season of Steven Universe, which is one of Jack's favorite shows. It was hard for me to get into it, and I daydreamed through the first several episodes. But, by the end, I loved it.

9.  I'm still watching Coronation Street. Pat Phelan (Connor McIntyre) is very dead, but the show is giving me someone new to despise. I'm talking about you, Johnny Connor (Richard Harley)!  Actually I'm pretty much hating the whole Connor family...except for the recently, tragically deceased Aidan (Shayne Ward)

10. I watched some of Stella, Call the Midwife, The 4400, and Doc Marten.  I enjoyed my time with all those shows and look forward to watching more.

Doc Marten made me want to go to Cornwall!

11. We watched the first two episodes of Sharp Objects. I'm bored by it, but am going to give it a few more episodes.  The only thing I have found interesting so far is when the guy pulled the teeth. But I also found that to be unbearably disgusting.

12. We watched the first episode of Who is America. The gun stuff was disgusting, evil, shocking, and amazingly done. The other stuff, I think, is entertaining, but makes me feel a bit uncomfortable.  If you embarrass a politician, lobbyist, etc. I think you're contributing greatly to society...especially if you get them to reveal the dark things they've been trying to hide. But if you end up humiliating a decent person just for shock value....

Well, that's a different story.

13. Our most recent show is Outcast. I'm loving it. I have this idea that although we're supposed to think it's about demonic possession, something else is actually going on. Like...aliens? Or time travelers.

Though I love stories about demonic possession, now that I have the alternate idea in my head, I think I'm going to be disappointed if it ends up being a possession thing.

What would our world be like if we

knew for sure there 

was life after death, and 

we could easily talk to our 

dearly-departed on the Internet?

The Dead are Online a novel by Dina Roberts