Friday, August 31, 2018

Spike Waves and Online Reviews

I still don't know what's going on with my brain.

But I do have some sense of a...resolution.  

This afternoon we met with Sai Duvvuri, the manager of DFW Neurology.

He was very nice.

He tried to explain what's happening with me medically, though couldn't tell me much, because he, admittedly, is not a doctor. 

I have a form now with some information and some pictures from my EEG.

I don't think I have epilepsy.

But my brain waves are probably not exactly normal.

That's about all I can conclude from now.

Duvvuri apologized and more importantly...showed me that they were working hard to make changes based on my grievances. They've already hired more people so they're less understaffed, and they changed their website to make it easier for people to email.

So, that's awesome.  

I am having mixed feelings.

There's one delusional, idealistic side of me that images Tim and I will end up being BFF's with DFW Neurology. We'll invite each other to our children's weddings and while dancing to YMCA, we'll pause from the confusing arm movements and say, Hey remember when I wrote those bad reviews of you guys on Google.  

I don't think they've seen my blog.

I was wondering if I should delete my posts, but then I feel like I'm being silenced—by them and myself.  And...there's a side of me that's still angry.

I'm angry because it came down to having to write a review on Google. I think the manager was nice to me BECAUSE I gave his office a bad review.  And after writing the reviews, I got what I had wanted in the first place: a detailed EEG report (though not as detailed as I had originally wished), some snapshots-examples of my EEG, and apologies.

So what I would say to doctor's offices, restaurants, hotels, amusement parks, stores, schools, etc. if someone has a grievance, listen to them!  If their grievance is valid, apologize and try to fix things as best as possible. Don't just imagine that they're going to disappear. Don't wait for a bad review to put on your niceness.

Anyway...in case anyone is interested in medical stuff, I'm going to write down the abnormal stuff on my EEG.  And what I really mean by that is if a random neurologist happens to come across my blog, could you please tell me what's up with me?  Except I don't want to open up comments or my email.  So just think about it, and I'll try to use my magical brain spikes to read your thoughts.  

Here we go:

AWAKE EEG-Well organized and sustained posterior rhythm is seen at 10-11 Hz during waking and resting recording. Attenuation is noted with eye opening. Background is seen without slowing, focal or generalized abnormalities.  There were intermittent fast activity noted followed by spike wave on bilateral frontal and temporal regions. (especially F4 and T4) These are not followed by slow waves. This could be a seizure focus.  

SLEEP-Well...I'll just say they say everything was normal.  So I'm not having seizures in my sleep. I'm kind of disappointed in the normality.  Actually very disappointed. I want them to say something like, There are very unusual brain waves during sleep...something we've never seen before. 

I have such vivid, crazy dreams. I want my brain waves to show evidence of that!

Oh! You know what would have been cool. If my brain waves drew pictures on the EEG. Like all of a sudden the technician is reading all the little waves and lines; then suddenly a demon face appears.  Pazuzu!  

AUTOMATED SPIKE DETECTIONS -All automated spike detections were reviewed. Intermittent bilateral frontotemporal fast activity with spike waves. Spike did not correspond to the events noted on patient's diary. 

I can't understand my EEG images, but I'm hoping one day I might have a bit of a clue. The past few weeks, I've been watching EEG instructional videos on YouTube. If I keep working on it, maybe one day I'll be self-educated enough to understand a little bit more about what's going on.  Okay. I actually considered going to EEG school today, so I could read my own EEG. But then I decided, no. I don't want to have to glue things to other people's head. I'd likely mess up and ruin their hair for life.   

Eventually I'll see another neurologist and get another MRI so I can make sure my brain atrophy hasn't gone from mild to major. And I'll see what they think of my EEG. But I'm not in the mood to do that now.  I think I'd like to wait at least a year.  

I might change my mind.

I really don't know.  

Friday, August 17, 2018

Did You Go to the Donald Trump School For Customer Service?

Here is the email exchange I had today with the office manager of DFW Neurology.

I actually had a burst of anger at 3:00 or 4:00 in the morning and wrote it then. But when I woke up later and checked my emails, I saw it was still in draft form. You know how they say you should wait before sending an angry email. Well, I didn't plan to wait, but it happened anyway. And after reading the email, I felt no hesitation in sending it.  

So here's my email.

Dear Mr. Duvvuri, 

 I endured a 72 hour EEG with the idea that afterward I would have some answers about my symptoms and condition.Instead I am left even more confused than before. 

 On our first post-EEG meeting, Dr. de Jesus said I was having generalized seizures and needed medication. 

We pressed for more information.On the second meeting, Dr. de Jesus completely changed the diagnosis. She said I was having bilateral frontal-temporal...something. She said they were NOT seizures. She also said I could choose whether or not I want medication. 

 When we tried to get more information about my EEG, Dr.de Jesus said she didn't know how to get that information without the EEG technician, who was currently unavailable. 

 Dr. de Jesus provided no explanations or apologies for why my diagnosis was changed.It seems the doctor was hoping we'd be gaslighted and not notice or be bothered. 

 When I agreed to the EEG,I did so with trust and confidence that a well-trained person would be carefully reading the EEG. From what I am experiencing, this seems to be far from the case. It seems to me that your office is actively looking for gullible people to help reimburse the money paid for the fancy Caldwell equipment. 

This is not okay.It's a scam.It's medical negligence.How many people are being unnecessarily medicated or not being given the medication they need, because your office is not giving the time and expertise that their EEG deserves? How many people are being given unnecessary life-changing labels? 

Here is what I want from you. A) Apologies. I want apologizes for the EEG mistakes. And I want apologies for the fact that my MRI was never received, and no one noticed until I asked about the results. 

 B) I want enough data and information provided so I can seek out a second opinion. I am assuming it will be difficult to have someone read the entire EEG, because it needs special Caldwell software.In lieu of that, then, I would like a detailed report on the EEG sent to either us or the office of the next doctor. I would like this report to have the dates and times of ALL questionable brain activity. I want a list of the times that I pressed the button.I want to make sure that any meaningless artifacts corresponding with my eating diary are excluded. And I would like screenshots/photographs of at least some of these seizures so a second doctor can give me his/her opinion.I have an appointment with a second doctor on August 31. If you do not think you can have this information prior to that, please tell me in the next few days, so I can reschedule the appointment.

 C) I want to know who read my EEG in the first place and how much EEG training they had.Do your doctors consult with their colleagues for a second opinion when they see something suspicious? In other words, what does your office do to guard against mistakes? 

 D) I want a promise that your office is going to make improvements on their EEG policies and procedures. I don't want anyone else to endure the anger and helplessness I am feeling now. 

 Please do not have anyone respond to my email with a phone call. For now on, I want all correspondence between myself and your office to be in writing, so I can save it for my records.

Dina Roberts


Here is the first response from the office manager.

 Dear Ms. Dina Roberts, I am unable to verify you in the system as I cannot find "Dina Roberts". Also, we cannot communicate HIPAA sensitive information via non-secure e-mail. Please call or come to our office to discuss further. 

 Sincerely, Sai Duvvuri 

To be fair to Mr. Duvvuri, from my previous exchanges, they DO seem to have a policy against answering emails. I have emailed them multiple times, and each time my email received a phone call response rather than an email.

HOWEVER, the not-being-able to find me in the system bit? I think it's complete bullshit.  How did they find me in the system the other times I emailed?

I wrote back.

Do you have a my chart system in which we can communicate?

And a bit later.

You should be able to find me under your records as Adina Roberts

In the examining room, there are many signs for the patient to read as they're waiting. One advertised that they had a patient portal thing. So I was asking a question I sort of already knew the answer to.

We didn't know, though, if the sign was up to date. SO Tim called someone. I forgot who—some separate entity. (The powers-that-be) He asked if the clinic has MyChart. They contacted DFW Neurology and it was confirmed that, though they don't have MyChart specifically, they do have a patient portal.

So there is no reason, we couldn't have a written dialogue rather than a phone or in-person one.  

But it seems now they are trying to wipe their hands clean of me.

Here's the last email I received from the office manager.

Yes, we did. I was also able to verify that this e-mail address was indeed on your chart.

 Coming back to your e-mail, I reviewed the chart and spoke to Dr. de Jesus and the staff. At this point of time, we feel that we did everything we can and cannot do any further nor reply to any of your e-mails.

 We have your MRI report now and can share a copy of that along with your Video EEG CD and the report. To this effect, I have asked our EEG technician to prepare the CD and we will contact you when its ready to pick up along with the MRI report (should be next week but we will confirm).

 We wish you all the best and hope everything works out with the other neurologist.

 Sincerely, Sai Duvvuri


Yeah. That sounds real sincere.

I will match his insincerity with sincerity.

A) I think it's pathetic he couldn't manage to apologize and/or encourage his staff to apologize

B) I hope the clinic loses all their patients and the business fails

One thing I do feel bad for is... personality-wise, I DO like the doctor. I don't think she's a bad person. She seems very sweet. I rarely like doctor's personalities, but I did like hers. Yes, there's the gaslighting, and shame on her for that. But I have this feeling that she's been pressured by the manager not to ever admit mistakes or apologize.

I read a great editorial the other day about doctors and apologizing. I wish the office manager, the doctors, and the staff would read it.

Anyway....

We shall see what happens.

I'll be pleasantly amazed if we are promptly given the CD and MRI report. I do have my doubts.

I'm worried that the CD will be one that can't be read unless the medical center has the same software as the neurologist Hopefully it will still work.

In the meantime, I shall enjoy checking the Google reviews for the neurologist.  So far, there are 27 and the average score is 2.5.  Including mine, 16 of the reviews are one-starred.

Some of my favorite quotes from the reviews.

Hands down worst doctor we have seen unprofessional and rude. Also sent us a bill for a $25 dollars for a no show for an appointment that we never made

 Good luck getting a call back. I probably have a better chance of getting in touch with Obama  (LOL. I love that one)

I’ve been calling for 3 months to get my nerve test results and..... I’m always told I will get a call back. No call.

Dr seems nice but doesn’t really listen

Dont go there!!!!! (I wish I had followed that advice!)

Front desk staff never answers the phone or calls you back with results. Avoid this place as you can see with all the other reviews.

If I could give negative stars I would 

The doctor completely had no clue as to a huge side effect of hair loss. When we explained the amounts of hair she was losing the doctor gave no emotion or concern and blew off of how concerned we were. She point blank said she had never heard of that symptom, and that it was not related to the prescription. Not only did we have to do more research and call other sources, we then found out from the state board that the hair loss was in fact a symptom, and is also a permanent one and my girlfriend will continue losing her hair!

Do NOT use this practice!!! I have had a horrible experience with this physician, office and staff from the get go

I wish I had taken these reviews to heart before making the decision to go there. But I had the attitude that beggars can't be choosers, and a not-great neurologist is better than no-neurologist.

But now I believe no-neurologist is better than a bad-neurologist.

Wednesday, August 15, 2018

DFW Neurology

In my last medical-post, I said I would name and shame if things don't go well at my next neurology appointment.

Well...and here we are.

So....



Here's my story.

As I said in my last medical post, my MRI report was missing and we were not satisfied with what we were told regarding my EEG.

The doctor wouldn't tell us much. She just said I had general seizures. I asked her if I could go without medication, and she said no, medication was needed. I got a prescription for Keppra and started taking it.

I was frustrated with the briefness of our appointment and the lack of information provided.

Later better questions formed in my mind, and I wrote the DFW Neurology an email asking them to forward the questions to the doctor.

Here's the email I sent:

I had a 72 hour EEG on July 16. I've been told that seizure activity was seen, and I met briefly with Dr. de Jesus about this. I might be being over curious and picky about these things, but I am feeling dissatisfied with the information provided to me. I would really like to know more. I have another appointment with Dr de Jesus on August 15. I would really appreciate getting more information about my seizures.If you could pass on these questions to her before my appointment, I would DEEPLY appreciate it. 

 1. For the most part, did my seizure activity match up with when I pressed the little button (I usually pressed a minute or so after the "event") 

 2. Were there many times that I pressed the button and no seizure activity was seen?

 3. Were there times that I didn't press the button and seizure activity was seen? 

 4. Were seizures seen every day? If so, how often? Hourly? A few times? 

 5. Were there seizures seen during sleep? 

 6. Did most of the seizure activity look the same or were there variances? 

 7. Was any background slowing seen on the EEG? 

 8. I had an episode on Wednesday night (July 18) around 9 pm, and I would really like to know if that was a seizure. Was anything seen on the EEG? And if so, did it look different or more intense than other seizure activity? Thank you so much.I appreciate your time and effort.

This morning we had a follow up appointment. I will give the doctor credit. She DID try to answer the questions, and she was very personable. But we left even more confused than ever.

First of all, the diagnosis changed. Last week it was general seizures. This week she used the term bilateral frontal temporal...SOMETHING? And she said they were NOT seizures. She also said it's up to me whether or not I want medication.

WTF???!!!  

How and why did the diagnosis change?  Did the doctor give me the wrong report last week?

A part of me thinks maybe it's a lost-in-translation issue, because English doesn't seem to be the doctor's first language. Maybe for her, the word "seizure" should be applied only to general clonic tonic seizures (grand mal), and should not be used for partial seizures. 

OR was I misdiagnosed last week with seizures; my questions prompted the doctor to take a second look; and she then realized I wasn't having seizures after all?

As for the other questions. We never got clarification over whether the seizures happened during sleep. Nor did we get a clear idea of how often the not-seizures were happening. All she would say is that they DID happen every day, but they weren't happening all the time. So, what does that mean? Hourly? Once or twice a day? Three times a day?

And here's the most confusing thing. She said the abnormal activity did NOT correspond to when I pushed the button.

I pushed the button a lot, so it seems quite strange that if I was having multiple EEG abnormalities, it always occurred when I was not pressing the button.  I would think just by coincidence alone, sometimes the button pressing and the EEG spikes would happen simultaneously.

So here are the two conflicting theories I have.

A) The spikes come not from abnormal brain activity but eating. Tim is big on believing this theory. Victor Remmers, the tech guy, warned us that eating looks very much like a seizure. So I had to keep a diary that noted when I ate, when I took my birth control pills, and when I went to bed.  Now for the most part, I just marked down the beginning of a meal which for me is leisurely and sometimes includes breaks between eating. I might eat something; then wait for something to finish cooking; then eat again.

For example, I might say I ate at 7:23, but then my eating might have gone off and on for about 30 minutes after that.  

Could the doctor have not paid attention to the eating diary or misinterpreted it?

And you know what, if there's one time that I wouldn't be pressing the button, it would have been while eating.

B) The button pressing DOES correspond with the abnormalities on the EEG, but the doctor didn't understand that the button-pressing was usually delayed by a minute or two.

Really.

Am I supposed to believe my brain is abnormal, but this is not the cause of any of my symptoms?  I could go with SOME of my symptoms are not caused by an abnormality. It would make sense that I have seizures; then also some psychological symptoms. But how can it make sense that I'm having abnormal brain activity and not feeling anything? Yet at times that my brain is normal, I'm feeling things and having random body jerking?

Anyway....

I was bothered last week that we weren't shown the EEG. I wanted to see it with my own eyes. 

To my relief, this morning, the doctor showed us some of the EEG. But it didn't make me feel any less confused. Because it was just a brief sample out of 72 hours. I still don't know how many seizures I had...not even a remotely general idea. Nor do I know if I had them while asleep.

Oh wait. They aren't seizures. Right?

What the hell am I supposed to call them?

Does it matter?

Well, it DOES matter to me.

I don't think it matters to the doctor or the rest of the staff at DFW Neurology. I think they just wanted an excuse to use the expensive medical equipment they had purchased. For all I know, they just made up a random diagnosis; then had to backtrack when I started asking more questions.

Now onto the MRI story.

Last week, I asked for the results and the doctor couldn't find it.  She called me soon after the appointment with the results. I wanted to see these results for myself, so I asked for them this morning. The office staff person searched and couldn't find them. She said they weren't in my file.

By this time, I was so paranoid, I imagined the doctor had picked up random results from another patient and had read them over the phone to me.

To her credit, this wasn't the case.

Tim and I went to the imagining center; got the results; and they pretty much match what the doctor had told me.

In case anyone cares: here are the abnormal bits.

The ventricles and extra-axial spaces are slightly prominent for age. 

Prominent perivascular spaces are noted at the inferior extent of the basal ganglia on the right.  

There is a mild diffuse prominence of the ventricles and extra-axial spaces, slightly greater than expected for age and suggesting a component of nonspecific atrophy.

I'm not sure what any of that means, and Googling didn't help. But I feel somewhat reassured by the words "slightly" and "mild".

And to be fair and realistic, there are probably a LOT of people who don't get MRI's and if they did, they might end up seeing the same results.

I'm pretty sure I don't need to be completely freaking out.

So I'm not freaking out.

But I AM angry.

I am also feeling depressed.

And....I feel alone, lost, distrustful, and helpless.

I hate healthcare in America.

I really do.

Basically, I'm in a really bad headspace right now.

I think I'm going to take a break from blogging until I'm in a better headspace. Or until I at least know what the hell is going on inside my headspace.







 (8/31/18)- Deleted my naming and shaming, because I had a meeting with the office manager and we worked some stuff out.  

 (9/9/18) Went back to naming and shaming, because after careful consideration and subsequent interactions, I feel we really didn't work anything out after all. 

Tuesday, August 14, 2018

The Flowery Journal My Sister Gave Me (part 12)

More journal stuff.

Note: The blue is what was printed in the journal. The green was what I wrote (probably in 1996)



This page is about high school.

Where I went and when-North Springs in Atlanta 1987-1990
Hillsboro High School in Nashville 1990-1991.

I was a late 80's teen. It makes me feel kind of special, since 80's nostalgia is such a big thing now.  I feel like I should brag when watching things like Stranger Things. BUT so can millions of other people. Or billions?

Still. I feel kind of cool for being an 80's kid and teen.

Oh! And I also feel cool for living in Atlanta, since that was popularized by The Walking Dead

There were no zombies in my day.

Did I fit in? I fit in with all the other outcasts  No. Maybe I didn't fit in anywhere. I was too dumb for the gifted students and the other "slower" students thought I was some kind of genius. 

I think there's a trope in 80's stories where marginalized people find each other, form a group, and have a strong, beautiful bond.
Goonies

Stranger Things

It

I'm guessing there are others. AND I imagine the trope extends to other decades as well.

I didn't have that.

I didn't have some wonderful group that provided loving and consistent support.

I had friends, but the level of closeness and support depended on the year, month, day, etc.

Every so often, we'd form a group, but the group wouldn't last long. Maybe it's because we didn't have a treasure to find or an evil clown to fight.

As for what I said about intelligence.  It seems I felt I was too much in the middle to fit in anywhere.

I would go through the same thing in my early years of parenting, especially with homeschooling. 

We chose to do unschooling which made us seem like crazy radicals to those who chose traditional schooling for their kids.

But then when we'd encounter unschoolers, we felt so overly traditional. And the unschoolers were too out there for us. I wanted them to be our tribe, but they very much weren't.

That's often been my issue. I have struggled to find my tribe, and haven't managed to do it.

Maybe I'm too picky? Maybe I want people who are too similar? 

To be fair to myself, though. It's not just about me being picky. It's about feeling judged by potential tribe-members.

You know what, though. I think I've found contentment by lurking amongst tribes rather than trying to join.

I love looking at Disney accounts on Instagram. But I don't want to try to become one of them. I don't want to try to compete. I don't want to be judged for not going to Disney often enough or for going too often.

Also, I read a lot of epilepsy message boards. I did this even before the doctor told me my EEG showed seizure activity.  I like hearing about people's experiences. It makes me feel less alone, and sometimes I find valuable insight and/or information.  But I don't want to join in. Because then I'll feel judged. Then I'll get the, Oh you're so lucky. I wish I had your type of seizures! AKA I need 100% of the attention, so let's pretend you don't have problems, because I don't want you to steal any of my drama-limelight.  I hate dealing with that, and I also don't want to be bombarded with advice.  You should take this medicine. No, you should take that medicine. You're taking too big of a dose. You're not taking enough. You should go off medicine and try the natural approach.  Stop eating so much chocolate! 

Okay. Yeah. I'm rambling here. And I have even more to say.

Back when I was the big Australia-fan, I got an email from another Australia fan. Cool! My tribe.

Wait. No. Not quite.

She totally attacked me for not liking Australia as much as her. 

Yeah.  I got hate mail from another Australia fan.

Moving on.....

New responsibilities-I was now responsible for learning algebra. 

I'm still learning algebra.

I was doing it for homeschooling reasons, and now I'm mostly doing it for myself.

I feel it's good for my brain.

And new realities-My biggest introduction to that scary real world was was a fellow 9th grader friend who had been to drug rehab, lost her virginity in 8th grade, had belonged to a cult, and belonged to AA.

I've had vague memories of her. I didn't realize I knew her in 9th grade. For some reason, I thought it was later.

This was a case of someone totally NOT being in my tribe, but still...I think we enjoyed each other's company.

For some reason, I connect this friend with Pet Sematary.  Did we see it together?  I thought the movie came out later, though.

Maybe I was reading the book when I was friends with her?

I don't think the friendship lasted very long. I don't remember knowing her long.

And sadly, I don't even remember her name.

Well, I just Googled and saw that Pet Sematary came out in April 1989. I would have been in 10th grade then.

So, maybe I read the book when I was friends with her? Or I had a dream about the book when I was friends with her?

OR...maybe my memory had been a bit off when filling out the journal in 1996. Maybe I had been friends with her in 10th grade and NOT 9th grade.

What I learned-Not to trust people so easily.

I think this was in reference to my ouija board (fraud) drama, and not the friend with the wild, troubled life.

I don't think she broke my trust in any way.

Best times at school-Writing novels, talking to friends in class.

Though I didn't have a strong social life outside of school, I did have some classroom friends.  So, that's good at least.

And worst times-Having no one to go out with on the weekends. The ouija board and Dawn's accident. 

I think there were times I wanted the classroom friendships to extend to outside the classroom, and couldn't figure out how to do that.

How I began to change-Between 11th and 12th grade, I gained more confidence because I started writing my novels and my grades improved. 

What I'd like to say to the girl I was-Life will get better.

Ah, but not as good as you are hoping.

That girl expected to be a successful novelist.


Monday, August 13, 2018

The Flowery Journal My Sister Gave Me (Part 11)

More journal stuff.

Note: The blue is what was printed in the journal. The green is what I wrote as answers to the journal's questions (in 1996)



When I was a teenager, I felt that I was-ugly, unpopular, worthless, unimportant.

I think I went through some things as a teenager. I think I ALSO was going through something when I filled out these journal pages.

I'm wondering, was I having another bout of low self-esteem. Or my was self-esteem okay, and I was just realizing how low it had been as a teenager?

I'm getting the idea that I was angry. What I'm wondering is if that anger was directed inward. Or was it directed outward?

When I looked in the mirror, I saw-Myself.

Well, that' a relief.

How I thought others saw me-ugly, but I was beginning to understand that some people thought I was pretty. 

I'm not sure this was all about perception.

I think I actually did become more (physically) attractive at one point.

I think I went through an awkward stage from about 10-15. Then from ages 16-26, I was beautiful. From about 26-39, I had a mixture of beautiful and ugly days. Now these days, it's mostly days of ugliness.

Maybe I'll be pretty again when I'm in my 50's and 60's.

If not that, maybe in my 80's.

I'd love to be beautiful like Queen Elizabeth. And what is she, 90 something?

Okay. I just Googled. She's 92.

I miss being beautiful. And there are many elderly women who are beautiful. So I like having hope that I can be one of them.

Yeah. I know. It's vain and superficial.

So, be it.

What made me happiest was-Probably television. No, I take that back. It was when people complimented my writing.

I still like those things.

What I wanted most to change was-My fat tummy. My lack of boyfriends. My back deformity.

What I couldn't change about myself-My Shoe size.  

Yeah, but I also didn't really change my tummy or back deformity either. I still have both.

I think my greatest strengths were-my writing, my compassion, my height (when compared to my sister) my bra size (again when compared to my sister's).

And my greatest weaknesses-My weirdness. My inability to forgive my dad for making me watch the Exorcist when I was 6 (7) years old.

I absolutely hate that I wrote this.

I'm glad I embrace my weirdness now.

I'm also glad that I'm stronger and wiser now, and understand that I am NOT weak for not forgiving my dad.

I do love my dad, but he put me in a situation than terrified me.

What's worse than that, is he gaslighted me about the incident on multiple occasions.

I hate Donald Trump.

But I AM glad he brought the concept of gaslighting to the surface, and people are acknowledging how emotionally damaging it can be.

No one is ever obligated to forgive anyone. No one is weak for not forgiving someone. And this is especially the case, when the pain and/or mistakes have been coupled with lies, denials, dismissiveness, teasing, manipulation, and a lack of regret.

I am sad and angry that my 20-something self was feeling this way.  I guess I'm partly angry at her, but more so, I'm angry at whoever, or whatever, led her to believe that her way of dealing with emotional trauma was weak.  

The Flowery Journal My Sister Gave Me (part 10)

More Journal Stuff.

Note: The blue is what was printed in the journal and the green is what I wrote (in 1996, probably)




The most influential adults during my adolescence were-Stephen King, my teachers at Hillsboro High School. Steven Spielberg.

So I was greatly influenced by the Stevens. Though the teachers at my high school were not named Stephen. At least as far as I can remember. 

What I learned from them-Stephen King made me want to be a writer. Steven Spielberg made me want to be a filmmaker, and the teachers made me want to be both the filmmaker and writer and a teacher.

Huh? I don't remember wanting to be a teacher back when I was in high school.

Important friends-Jennifer K, Olga L, Marni S, Jennifer L.

I became most interested in-CF, the supernatural, writing, death, having a boyfriend, going to college.

Yeah. That seems about right.

And began to think about-Was everyone having sex but me?

I remember feeling that everyone else was MUCH more sexually experienced than me.

I'm guessing these days teens can go to various online message boards and be reassured that they're not alone regarding the things that make them feel like freaks.  Although then there's the risk that once they open up, they'll be viciously attacked for thinking and/or behaving outside the norm.  But...hopefully on balance, they'll find more support and companionship than hatred.

The role school played in my life-I hated it. High school, at least. Well Hillsboro was nice, but the North Springs experience was a complete high school.

Yet recently I had been confused when I went back and read my high school diaries, BECAUSE it seemed as if I had been fairly happy at North Springs.

I can't figure out if I had been in denial while in high school, or if something later clouded and soured my high school memories. 

Actually...you know what. I think it's a combination of both things.

I think I had a fairly bad time in high school, but lied to myself and imagined things were better than I wanted to admit. Then as years passed, I warped the bad memories into even worse memories.

Other important activities-CF camp, all the CF stuff.

Experiences that began to shape me-Seeing Alex the Life of a Child, the ouija board, having mono, the death of Jason M, reading the Spoof of Amityville Horror in Cracked Magazine, Dawn's accident.

I remembered and understood all those references EXCEPT for the Amityville Horror one. I was sitting here thinking, what????

But now I think I know.

I think what happened is I read the satire, and then that night had a dream that inspired me to write a short story.  After that, I wrote more short stories; then started writing novels and screenplays. So I think the story in Cracked Magazine is what sparked my whole writing thing. 

As for the other things, I feel I should explain them all. But I've already done so multiple times in this blog. If by some chance, someone is curious, they can do a search thingie.

Was I happy? No, definitely not. I was a miserable child. It is a complete miracle that I did not commit suicide. Yes, there were happy moments but they are overshadowed by the bad.

Yikes.

I'm thinking I was upset when I filled out that page, and that the present was clouding the past.

That's not to say there isn't truth to what I wrote. I was horribly miserable at times. 

I feel my childhood is full of contradiction.

In some ways, I feel I had a very idyllic childhood—especially the Madison, Wisconsin years.  Sometimes I can go on and on about the trivial, wonderful aspects about my childhood. But between all the good stuff, there was also some emotionally traumatic stuff. 

I guess, in a way, it's like my life now. There are things that are really bothering me and stressing me out. Yet I'm still having an enjoyable day—eating donuts, watching my TV shows, reading a fantastic book, spending time with my husband, son, and cats, etc. 

Relax! No New is Good News

I had my MRI in early June.

My doctor, Maria de Jesus, had told me she'd see me after my MRI and EEG were completed.

The EEG wasn't scheduled until July 16, so I figured it was likely that I wouldn't hear about my MRI until the not-yet-scheduled appointment later in the summer.

The exception would be, of course, if they saw something dramatically wrong. From what I read online, people are called immediately if they have a tumor. If you don't hear anything the evening of your MRI or a day or two after, you're probably tumor free.

I wasn't quite sure about serious problems that were less extreme. For example: MS. I imagined the doctor might call about that. Yet I also imagined they might decide to wait for all the tests; then give me the full picture. The former seems more kind, responsible, and reasonable, but I don't expect doctors and medical facilities to have those qualities.

Weeks passed. Then I had my EEG. Though I had expected to have my appointment and the results of all tests soon after that ordeal; I was told it would take 2-3 weeks to read the results.AND my appointment wasn't scheduled until August 13—about 3.5 weeks after the EEG.

Doctor de Jesus called exactly two weeks after the EEG to tell me she saw seizure activity. She left a message saying she wanted to put me on medication and that I should call back for an appointment. This was on Thursday afternoon. I called back DFW Neurology as soon as I got the message. No one answered. I left a message. They didn't call me back. I left an email on Friday morning and Tim called for me in the afternoon. Still, they did not call back.

Tim called again on Monday and finally reached them.

I don't know. Should it be that hard to speak to someone at a doctor's office after you've been given a phone message about having seizures?

Anyway....

So...Wednesday I had my appointment.

And okay, as for the MRI, one thing I imagined is that there might be something that SEEMED insignificant on my MRI, initially. But now that seizures were in the picture, it might be less insignificant than previously believed.

I thought it was possible that the doctor still wouldn't see it as significant despite the seizures. So my plan was to ask for the MRI report, so I could read it myself.

After a frustrating discussion about my seizures (which I'm not in the mood to talk about now. Maybe in the future?), I asked about my MRI. Dr. de Jesus started looking at her notes and said she never received it.

I wasn't shocked and angry because I've heard these things happen. I've heard that you shouldn't follow the mantra that no news is good news.

The doctor assured us that we would be called when they got a hold of the report.

Soon after the appointment, she called.

I can't give an accurate report of what she said, because it's a blur to me.

I got off the phone with the idea that my brain is small—smaller than it should be for a person in their 50's...but oh wait. You're even younger than that, aren't you?

From what I (sort of) understood, my brain is the size of an elderly person's. BUT this wouldn't cause symptoms and the doctor is not concerned.

So I shouldn't consider that my small brain and seizures could be connected?

Then an hour or so later after Googling shrinking brains, and seeing things like dementia, I started (maybe remembering) that the doctor has said something about my brain being big. I think that's how she started out, because I vaguely remember thinking, hydrocephalous!?

So it went from big to small? Or was it never small? Was it always big? But then why would I think small? What is wrong with me?!!! Why can't I remember a simple phone conversation.

I Googled larger-than-normal brains (outside of hydrocephalous) and found something about autistic boys having larger brains.

I then figured that my brain must be small not big. Because if I had a male-autistic brain, I could replay the phone conversation verbatim in my head. It would take a small, on-the-verge-of-dementia brain, that would get off the phone with the doctor and be thinking, Wait. What did she say? My brain is small? Big? Big and small? What the hell did the doctor tell me? 

And, sorry. I know I'm falling on autistic-stereotypes. It was pretty much just a joke.

 If there's ever a time to need dark humor, this was one of them.

Tim suggested it was not my brain size that made me confused. It was my heightened emotions. I agreed with him about that.

Well...anyway. Dr. de Jesus told me not to worry about my brain. But I'm not feeling at all trusting of this doctor, so her words aren't exactly reassuring.

The other thing is, I soon did start getting angry about the MRI.

My feeling is that it would be different if I called a week or so after the MRI, asked about my results, and the office told me they never received them. Unfortunately I do expect to be just a number to the doctor's office. I don't imagine them waiting around thinking, I'm sure concerned about Dina. I'm eager to see her results. Let's look out for those. Oh wait. Why haven't we gotten them yet?

I expect that when I leave that doctor's appointment, I'm soon forgotten.

I don't like that. I wish doctors truly cared about their patients. I wish that they DID think about us every-so-often once we've left the building. But I accept the reality.

What I don't accept is that Doctor de Jesus did not glance over my MRI results and EEG before my appointment last week. Simple pre-appointment preparation!!!!!!!  I don't think that's asking too much. But no.The doctor didn't know my MRI results were missing until I asked about them.

How could she look over my EEG results and not ask herself, so did the MRI show anything unusual?  

And how much time did she spend looking at the EEG? Three seconds? Do I even have epilepsy?

I have another appointment on Wednesday. I'd like to imagine I'm having this appointment because Dr. de Jesus cares and wants to make sure I'm doing okay on my medication. But it's probably more likely that the doctor wants more money from me...and our insurance company.

I emailed a list of questions about my EEG that I want answered, because the doctor was very cagey when we asked questions last time.

I'll see how the appointment goes.  There's a tiny chance, that there will be a great, happy change in the plot. The doctor might say things that make me feel more relaxed, trusting, and forgiving.

But in the chance that this doesn't happen, I'm going to start naming and shaming.  Because medical practices should NOT be able to get away with this shit. (And that I did, which included going back and re-editing my posts to include the naming and shaming 9/9/18)


Thursday, August 9, 2018

The Flowery Journal My Sister Gave Me (Part 9)

The journal continues.

Note: Blue is what is printed in the journal. Green is what I wrote (in 1996)



Oh wait!  I see on this page that I filled some things out AFTER 1996. I went back and said some things in 2001.

The first time I felt as if I were no longer a child was when-Hasn't happened yet. And still hasn't happened yet (April 2001) A few months after becoming a mother. 

I think I wrote the first sentence above in 1996 (or later), and then the other part was written in 2001.

As for now? How about I say, I feel like an adult who has a strong inner child.

Being older brought these changes in my lifeBetter self-esteem. Bigger breasts. Chubbier thighs. More intelligence. More confidence. More memories of the past. 

I was confused about the last line at first. But now I'm thinking I might have meant that the older you are, the longer your past is. And that would equal more memories.

When I was fifteen, I had memories of only about 12 years.  Now that I'm 45, I have memories from my earlier 40's, my 30's, 20's, teen years, and childhood. 

Important physical changes-dry skin, not as thin anymore. Bigger breasts, menstruation.

How I felt about these changes-I hated all of them.

I still struggle with the desire to be thin.

I still strongly hate menstruation.  

I'm fine with dry skin, because I have lotion to see me through the tough times.  

I was now aware of-the fact that Michael Jackson was not the decent human being I had learned him to be.

Really? But in an earlier diary, I had seemed totally fine with Woody Allen.

Maybe some racism there? 

It could have also been me being silly/sarcastic. I think the journal had wanted me to say something deep, but instead I wrote some random thing.

I don't really remember being caught up in the Michael Jackson pedophile drama. I don't think it ever strongly occupied my mind.

What had become important to me- Writing and finding a cure for CF

I'm guessing I was choosing to use this page to talk about my middle school years.  Even though I felt I hadn't left childhood when I started middle school.  I think I understood that this was the time period that he journal questions were referring to.  

But yeah. It was seventh grade when I became passionate about CF and writing.

What I liked doing most-Writing, reading, seeing movies. 

The hardest part of growing up-Not being able to play Barbies anymore. Getting clothes for Chanukah instead of toys.

I should have just kept playing Barbies.  

Now I'd probably prefer getting chocolate over toys AND clothes.

And I like make-up.  

But sometimes I like clothes and/or toys.  


Tuesday, August 7, 2018

The Flowery Journal My Sister Gave Me (Part 8)

More Journal Stuff.

Note: The blue is what was printed in the journal. The green is what I wrote (in 1996)



On this page, the journal pretty much asked me to write an essay on my thoughts about childhood.  I have this feeling that I wrote sarcastic things. But I might be wrong.

Childhood which I think of being the ages from 1.5-12 is a time when everything is blown out of proportion in both negative and positive ways. 

Yeah. Okay. But I think that applies to teenagers and adults as well.

Does it apply more to children? Maybe. I'm not so sure. 

A child is very easily hurt. Not getting to buy their favorite cereal can seem like a terrible tragedy to them. Being rejected by a friend in the form of not being invited to a birthday party is like the end of the world.

I can now handle not being able to buy my favorite cereal. If I was rejected or not invited? Well, it may not feel like the end of the world, but it would definitely hurt a lot.  At some point in the drama, it's likely I might wish I were dead.

Children also see trivial happenings as being superb triumphs. A compliment from a teacher can make them so happy. Getting a neat toy out of a cereal box can probably make them as happy as an old lady winning 10 million dollars.

Bless all the children and adults who can manage to get happy and excited over small things. And that does include myself.

What is mundane to an adult can be wonderful for a child. Then also what is a miracle to an adult can be dull to a child.  

Yeah. Sort of. Maybe.

When I was 19, my parents took my sisters and me to France and England. They wanted to show us a lot of history stuff, and we could hardly care less. My sisters and I were bored with all that. 

I think I had this idea that we'd change when we'd get older. We'd end up loving history tours like that. Well, I'm 45 now, and I'm still not fond of history tours. When I travel, I'd rather chill. I like to walk, eat, and enjoy the surroundings. I rarely like going on tours. 

Also, my parents have a close friend who greatly frustrated them in Paris by choosing to go to Disneyland instead of a history tour.   

So, although, I think age changes our interests and desires to some degree. I think it's mostly about personality. 

Adults like to find hidden assetts. Kids like to find Easter Eggs and dimes. Adults are awed by sunsets. Children are awed by giant playground and Showbiz Pizza. 

I probably would prefer to find hidden assets over dimes and easter eggs. Though I do love candy hunts.  I haven't had one of those in a LONG time.  Well, and I probably haven't been the hunter in an even longer time. 

I think maybe the last time we had Jack hunt for candy is when we celebrated Easter with friends in Australia.

I think I used to like sunsets, but then I saw too many photos of them and got sick of it. 

I'm not sure how I feel about playgrounds. I was more interested when Jack was young and wanted to play on them. Now I don't really notice them. I think a playground would have to be really spectacular to catch my attention.  Or controversial, like that one where no parents are allowed and the kids can start fires. 

Why Did I Feel So Sick Last Night?

I am full of medical mystery. I have mysterious unexplained pains. I have mysterious shitty, weird feelings. I have episodes where I spit up huge amounts of saliva.

I think there's a part of me that wants my seizure diagnosis to explain it all.

BUT I'm realizing it doesn't work that way, and I'm finding that frustrating.

I don't think there's a doctor that can say. Yes, that, that, and that. Those are all seizures.

We could argue that if I go on medication and particular symptoms don't disappear; then those symptoms are NOT seizures.  But I've been reading that medication doesn't always magically make all your seizures disappear. Some seizures can be stubborn.

So anyway. I might just have to live with the mystery. I can probably say only, This MIGHT be a seizure.

Last night is an example.  I got this feeling that I get occasionally.  I started to feel like I'm coming down with something.  As we watched our evening show, the feeling was vague. My throat felt  mildly scratchy, and I felt a bit run down. I took an elderberry pill. We've been taking those things every time we feel a bit off, and it seems to work miracles.

I went to bed feeling a little ill. I woke up around 10-11 to deal with cat stuff. I felt horrible.  I felt like I was in the midst of the flu.  I wasn't too worried, though, because I've been through this before.  I took another elderberry pill, went back to sleep, and when I woke up again around 1:30, I felt much better.

Now the feeling is totally gone.

This has happened to me many times. I don't always check my temperature, but when I have, my temperature is always normal.

So...what is it?

A) A seizure.  Epilepsy can cause a variety of weird feelings—both good and bad. Is this one of them?  Though I Googled and can't find much about people feeling like they have the flu.

B) A psychological thing. Some kind of reaction to stress or anxiety.

C) I get infected with things, and my body fights it off quickly.  The elderberry helps with that. And elderberry IS known to be good at fighting viruses.  On the other hand, it might also work well as a placebo if I was having psychogenic symptoms. .

D) These episodes are caused by some other disease or syndrome. I've read recently about how epilepsy has a lot of comorbidities. .

A part of me wants to go with C, because there have been incidents where the elderberry seemed to work miracles on Tim and/or Jack as well.

On the other hand, in the past, I've had miraculous recoveries without the elderberry.  There was a time in Australia where I thought for sure I was getting sick; then the next day it appeared to be a false alarm.

It could just be that our bodies can fight these infections (sometimes) without elderberry. Recently my sister worried she was getting sick and ended up not getting sick.

Well, I just read the blog post about that day in Australia.  It turns out that, although I didn't take elderberry, I did take some kind of immunity booster.

After thinking about this, I'm leaning towards infection. The only thing that makes me lean towards epilepsy (or something else) is the lack of fever.  My feeling of shittiness doesn't match my body temperature.

But...who knows.

I wish I did, but I don't.




Monday, August 6, 2018

The Flowery Journal My Sister Gave Me (Part 7)

More Journal Stuff.

Note: The blue is what is what is printed in the journal.  The green is how I filled it out (back around 1996)




How I would describe myself as a childshy, skinny, pretty, afraid.

And now has a 45-year-old woman, I'm less shy, less skinny, less pretty, and less afraid.

My most beloved possessionsSydney the mouse, Maxie the Moose, Winnie-the-Pooh, Koala, Polala, Savannah the clown, Sleepy.

I was really into stuffed animals. Sadly I don't have any of those favorites anymore. 

I remember I once made this powder out of soap. I put it in Savannah's hair; then sniffed it. The soap powder went up my nose. It really hurt!

Places that lifted my spirits-Disney World, The Barnum Circus place with that fun playground. Devil's lake.

The latter two were in Wisconsin.  I'll have to Google them.  I think we went to the circus place only once. We stayed in some cabins. I got sick in the cabins, but I guess my illness didn't ruin my fun or my happy memories of the place. 

As for Disney World, I loved it as a child. Tim and I ended up getting married there, and Jack ended up being a huge Disney fan as well. We're definitely a Disney family.

Here is the website for Circus World. It's in the Wisconsin Dells. I have some memories of going to the Wisconsin Dells, but didn't know those memories were connected to the circus . I think I imagined they were two separate places.  But now I'm getting that the circus place was in the Wisconsin Dells. I do remember/know that the Wisconsin Dells is one of those places with a variety of tourist attractions. 

I wonder if the playground was at the circus place. Or it might have just been a random playground in the Wisconsin Dells.

I was thinking about the Wisconsin Dells and a similar place, Branson Missouri. They both have a bunch of tourist attractions.  I was wondering if Australia has a similar place to that.  Maybe the Gold Coast?  Though I think the Gold Coast might be more similar to Orlando.  The two theme parks there (Dreamworld and Movie World) remind me more of Disney World and Universal.

I think Branson and the Wisconsin Dells have more....

I don't know what to call it?

Smaller attractions?

I'm tempted to say Branson and the Wisconsin Dells have more tourist traps. But tourist trap is relative. I know some people would think of Disney World, Universal, Dreamworld, and Movie World as being tourist traps.

Now I'm looking at the Wisconsin Dells website. They're calling themselves the waterpark capitol of the world.  I wonder if they had water parks back in our day, and if we ever went to one.  I don't think we did.

I have vague memories of going to a water show.  And I connect this memory with hurting my toe in the car...like getting it caught in the seat.

There's something called the Tommy Bartlett Show. It has water skiers. Maybe that's what I'm remembering. 

I kind of remember colorful water and synchronized swimmers. 

I've blabbed on and on about the Wisconsin Dells, and just realized I've neglected Devil's Lake.  That was a fun place. I'm not sure how many times we went.  I remember going with my cousins and playing on colorful rafts. Though the rafts would probably look boring compared to all the rafts that are out there today! 

Okay.  I'm confused. I'm seeing that the Devil's Lake is in Baraboo Wisconsin. And I'm remembering that the circus place and cabin place was in Baraboo.  At least I think it was. Is Baraboo part of the Wisconsin Dells, or near it?  Or was I looking at the wrong circus place earlier? 

Ah. Never mind. I went back to the circus site. It says Baraboo right there on the site.

And it's NOT in the Wisconsin Dells. It's 15 minutes away.

I need to read more carefully next time I go Googling down memory lane.   

I'm looking at Google Maps now. 

Devil's Lake was about 45 minutes north of our house.  If we drove 15 minutes more north, we'd get to Circus World, and then the Wisconsin Dells is about 20 minutes further north. 

The childhood experience that changed me most-Moving in the middle of third grade.

I'm not sure that changed me that most.

I'm not sure I had any experience in my childhood that caused a great transformation.  I think there were just a bunch of medium and small things that caused small little growths...and emotional defects. 

If I could, what I would say to my childhood self-Be happy. One day you will have a close to perfect boyfriend. Don't go to film school. Stop worrying so much about having friends. You weren't born to socialize.

Major in education when you go to college. Do sit-ups. You'll need them.

Don't wear that Laura Ashley dress. It makes you look pregnant.

A big surprise will happen to you when your'e older. You will actually start cleaning your room. You will be a neat freak instead of a slob. 

Last but not least, one day you will feel loved and you will feel special.  

Oye.

So here's what my 45-year-old self would say to my 23-year-old self.

A) Don't tell people to be happy...especially children. Life is about having a variety of emotion. Sometimes you'll be happy. But other times you'll be bored, angry, sad, worried, etc. And that's okay.

B) Your boyfriend is great, but he's not perfect. The more you're with someone, the more you'll see their imperfections.

C) There will be times you'll regret dropping out of film school.

D) You're probably right about the friend thing. You'll worry less and less about being popular and having friends as you get older.

E) You're going to end up spending a ton of money to get a bachelor's degree; then a master's degree. And you will hardly use them.  I'm not telling you what to do...just saying what's going to happen.

Actually, No. I'd take that back. I DO have advice.  I'd say drop the teaching; go back to working for the temp agency, and write in your spare time. 

And...TRAVEL!!!

(That's not so say I didn't love teaching.  I did love being a preschool teacher in NYC. It's one of my fondest memories.  I'm just not sure it was worth it—money-wise.  On the other hand, I think having a teacher degree does give me more self-confidence when it comes to homeschooling.  I don't think it was actually needed, and I think parents can do fine without the degree. But still. It's that little extra thing that reduces some of the self-doubt). 

E) They say sit-ups don't actually help that much.

Eventually you'll maybe look a bit less pregnant. Or it won't bother you as much.

Actually, I think it's just when you're bloated that you look pregnant. So, watch out for that.

F) The neat thing won't last forever.  And you'll live in a messy house because that so-called perfect boyfriend is also a slob, and so is the son you made together.

You'll do some cleaning. You'll do some organizing. But you'll keep failing to keep up with it all. 

G) There will be moments where you feel loved, but there will also be times where you feel lonely, unloved, second-place, rejected, ignored, neglected, worthless, a failure, etc.  Those feelings are just part of life. And you know who probably doesn't ever feel that way?  DONALD TRUMP. 

So...yeah.

What I'm trying to say is, it's OKAY to feel like shit sometimes. It's okay to have self-doubt. It's okay to have an imperfect body, and it's okay to have a messy house. All of that is better than being an ignorant narcissist with too much power.
 



Hugh Sheridan's Singing Career and also the Oscars

I dreamed about the actor Hugh Sheridan last night.

I'm inside a building watching Packed to the Rafters. Then I decide to watch one of Hugh Sheridan's music videos. I see that he has joined a band. It seems to maybe be an American band. I walk as I listen and end up passing Hugh Sheridan. I tell him I'm watching his video.

Sheridan seems sad and insecure. He asks me if if I've watched this other video of his. I get the feeling that this video he mentions is from back when he was doing music independently. 

The idea I got was that Sheridan was unhappy with the band and wanted affirmation for his solo career.

I also dreamed about watching the Oscars with people and having ideas for future shows.

Here are some of them.

A) Instead of having a In Memoriam montage, have a montage of people still with us. Now it wouldn't show every living person in the film industry. Of course. But it could show people that we've kind of forgotten—the ones that might surprise us by still being alive.

B) Let go of the whole fashion aspect of the Oscars and have everyone wear their pajamas. BUT then I started thinking what if there's a person who's always dreamed of dressing up and attending the Oscars. Then when it finally happens, they're robbed of the chance. SO...my amended idea is that the Oscars go half and half.  For part of the night, everyone gets dressed up. Then they have an intermission where everyone changes into their pajamas.

This morning when I thought about it, I realized it wouldn't be as good as I imagine. I thought of bras. Women would probably wear those, and that would greatly decrease the comfort aspect. Of course, they could choose not to. But then it would be noticed by viewers. There'd be all kinds of nasty comments. Then there'd be fights about the comments.

But you know what. I just realized. It would probably lead to a protest at the next award ceremony, and NO women would wear a bra. They'd all be comfortable.

Oh shit. No, that wouldn't work. What about women who are more comfortable in a bra?  I'm wondering if this happens for women who have really big breasts. Do bras make them more comfortable or less so?

Well, I just Googled. And from what I'm seeing, the answer might be no. For example, there's this article which is titled, "How Going Braless for a Week Taught Me to Love My DD Breasts." And here's another article about how to go braless if you have large breasts.

I'm thinking my pajama party oscars will be braless!  For the most part. If some attendees choose to wear a bra, I hope no one will shame them. And vice versa.

The other thing I worry about is that the pajamas will become a fashion show in itself.  I hope not. I hope people wear pajamas they picked up at Goodwill, Target or a department store.  Or I hope they go the T-shirt and shorts route, and the T-shirt is something fun they picked up on their trip to Thailand. Or something like that.

I hope the pajama thing doesn't become a showcase for fashion designers.  Well, no. You can't get around that. Because all clothes are created by a designer. Maybe instead I should say, I hope designers don't create pajamas specifically for the event. I hope it's more casual...with attendees buying off the rack kind of stuff.  Or they could just search through their closet to find something. 

Oh...by the way.  I got a call from the doctor on Thursday. She left a message. I don't know much, because they haven't yet returned my return call or email.  All I know is that I AM having some type of seizure, and they want me on medication.  I've been reading about common seizure medications and some of them have the side effect of vivid dreams.  Most people online seem to describe these dreams as being terrifying. Yet I can't help but be sort of excited. I've always loved vivid, crazy dreams.  Though I'm trying to tell myself that I'm going to regret this eagerness, because the dreams actually sound kind of like insanity.  People say the dreams seem so real, and they have trouble distinguishing the dreams from reality.

Is my life going to turn into Jacob's Ladder or something?

Then again, I talked to someone, who I know personally, that's on those meds. She says she doesn't have crazy dreams. I don't know if I should feel reassured or disappointed by that.

Well, I guess one reassuring thing is that the people on the message boards don't sound at all crazy. They sound very lucid. So I think it's only at night and in the morning when they're confused.

Anyway, what I was trying to say before I rambled on and on again is that if I DO end up on these particular drugs and my dreams DO get even more crazy, then I'll probably have even more annoying dream posts. 

Thursday, August 2, 2018

The Flowery Journal My Sister Gave Me (part 6)

 More journal stuff.

Note: The blue is what's printed in the book.  The green is what I filled in.  The book is from 1996.




What I wished for most as a child-To be very rich and to live in a huge mansion like the Madison capital building.

I vaguely remember that. 

Dumb question: Do people live in capital buildings? Like the governor? Or is it just a workplace?  

Here's the website of the Madison capitol building. They celebrated 100 years last year (2017).  Back when I was living in Madison, and coveting that building, it would have been about 63 years old.  

Now I'm looking at photos.  It's quite lovely.

Well...I Googled and learned the governor lives in a governor's mansion.  Here's a website for that building. It looks nice too, but I think I prefer the capital building. I'm betting my younger self would agree with me.  

What I loved to imagine-That I was Peter Pan's girlfriend. That I was poor like Laura Ingalls Wilder. That I was a child loved by many.  

How about: I'm Laura Ingalls Wilder. I end up in Neverland and start dating Peter Pan. Then somehow we get rich and move into the capitol building in Madison. OR maybe we somehow shrink into tiny people and live in the mouse holes.  

And as for being loved by many. I bet the tourists would love us. Who wouldn't love seeing tiny people running around a capitol building?  Plus, maybe they'd recognize that we were THE Peter Pan and Laura Ingalls Wilder.  

In my dreams, how my life would change-I'd get a lot of money and probably a lot of toys.

I think my 22-year-old self saw my early childhood self as being very materialistic.

And she was probably right.

I think I once had a vomit-inducing tantrum because I wanted a toy school bus.

In my dreams, how would I changeI'd be more popular, cuter.

Besides the money and toy thing, being loved was also important to me.

Of course I was loved as a child. 

Well, I shouldn't say "of course" because sadly not all children are loved.

But anyway, I think what I didn't have is that feeling of being adored. I don't mean adored in a spoiled-worship kind of way.  It's more like that strong love that makes your heart sing, or where you think someone is so damn adorable.  

As a child, I think I felt that people loved me because they were obligated to, or because it was the custom to do so.   

How my dreams were important to me-I existed in this dream world. It seemed much better than the real world.

In other words, I preferred fantasy to reality.

How my childhood dreams shaped me-I still live in a fantasy world. I feel much better thinking about going out and partying than actually partying. As for being poor like Laura Ingalls, I still am plagued by the notion that poor is noble. As for the dreams of being rich, buying all the lottery tickets probably proves I'm not over that wish.  

I'm still that way—the fantasy world thing, at least.

I prefer seeing people have exciting lives on TV over having excitement myself.

I'm happy to have a few intense social events a year. And when I say intense, I mean like a Bat Mitzvah or a large family get-together.  Not all night clubbing.

I do greatly enjoy some things that are not on a screen or in a novel.

I like traveling.  I like going out to eat. I like taking walks. 

But in terms of social excitement, I'd usually prefer watching a TV show.  


Speaking of dreams....

I'm assuming the book was referring to wish-dreams and not sleep-dreams.  But when it comes to sleep dreams, I think that might be one of the reasons I'm socially lazy.  I have a LOT of socializing in my dreams.  So I think in my waking life, I'm content with just Tim, Jack, my immediate family, my cats, and the conversations I have on Twitter.  

I think it's also an age thing.  I did like socializing in college...a LOT.

You know how characters joke on TV shows about how they're getting old, going to bed early, and not being exciting anymore?

Well, that's totally me. I usually start getting ready for bed at 9, and am usually asleep by 10. I get nervous when people want me to do something that has me going to bed later than that.

The Flowery Journal My Sister Gave Me (Part 5)

The journal stuff continues....

Note: Stuff written in blue is what was printed in the journal. The stuff in green is what I filled in.

I received the journal in 1996, and I'm guessing what I filled in was mostly done in that year.



The most influential people during my childhood were probably authors such as Caroline Haywood, Beverley Cleary, Sydney Taylor Roald Dahl, Judy Blume, etc. 

That makes sense. I was a bookworm. Though, I think that at the time I was filling out the journal, my career dream was to be an author of children's books. So that's probably why writers came to my mind when answering the question.  

The differences they made in my life-They gave me a world to escape to, to learn from, and probably influenced me to be a writer.

Yep. I definitely had writing careers on my mind. 

When I was small, I confided in Melissa.

That's my younger sister, the one who gave me the journal.

I confide in her less now but still do sometimes.  

My source of comfort was Melissa, but probably my stuffed animals more so. 

I think I'm still the same way. Well, Melissa is probably not my main source of human comfort. Though she's probably in the top 10.  

BUT I still find more comfort from non-human sources—books, TV shows, cats, my blankets, food, trees, tiny spiders, etc.

And I felt most protected by I guess my parents. Maybe also the crosswalk guard.  

I wonder what I saw as threats when I was a child. 

I know I had strong fears, but I'm not sure I often felt deeply threatened by those fears.  

What types of things worried me, and did I feel my parents would be willing and able to protect me?  

Did I worry about disease? war? death? getting lost? being kidnapped?  

I don't know.....