Category Archives: Random


I am part of a prayer and support group on Facebook. It’s been awesome. A place to come together and pray for each other and share concerns. But now I’m heated and have been getting on less. There are a few new members who preach fire and brimstone. Apparently we just need to cleanse our bodies with certain foods, read the Bible more, go to church more, pray more, and just do better and we will feel better. Apparently the devil is lurking over our shoulders ready to pounce on us. The group is such a special place I hate that these people feel it necessary to troll a Christian gathering.

So being me, I asked one if she is a chronically ill person. Its been almost a week and I’m still waiting.

There is another troll just like that on my Psychosis support group. Its just now helpful.

The support group for Chronically pain people is Rest Ministries Sunroom, it really is a nice group for sharing and praying together.

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Filed under migraine/headache, Random, tolerance

Down the Rabbit Hole

It’s been almost 3 weeks since my last post. That is how many days I was falling down the rabbit holasian-korean-disney-remake-illustration-na-young-wu-7e. I don’t think I experienced Alice in Wonderland Syndrome, it only refers to feeling that things are smaller and bigger, like when Alice eats. I am comparing my awful last 20 odd days to the things Alice experienced down the rabbit hole: no control, alone, no idea where she is going or how long it will take, its dark, thinking about weird stuff, there is nothing to do. Finally a break, she has to hurry after the White Rabbit before she gets lost in the next long dark passage. The Walt Disney presentation of Alice falling includes more symptoms These are things I felt at some point, not all of them in one day but a few.

  • I have not known my up from down for days straight.
  • I was on a roller coaster that turned upside down, sent you flying, and did curlicues.
  • I was on a skate board rolling back and forth: bouncing off of springs to bash my head on a wall then sliding back to do it again.
  • I was convinced if anyone touched me I was going to explode. I fell and laying on the floor I started screaming that at everyone and the dog.
  • I was doing somersaults
  • Played on a Pogo stick
  • jumped on a trampling while sitting on one of those balls with a handle
  • My bed was rocking, like a swing. I held on for dear life.
  • The table and chairs moved, all on there own.
  • I was there, but I wasn’t. maybe like watching myself on TV what you are doing while I’m doing it? Is that really right there? So I have to touch it just to be sure.
  • Someone was pulling my hair. I think the boogie man was the culprit.
  • The pain had personalities of their own and they were having a party.
    • Over on the right side of the tracks: DJ Ring scratches some records. “Tingle would you like to this dance?” “Oh why yes Pressure.” “Oh there you go Pressure, using Duress to get the ladies!” “Take this out back!” Miss Ache chimed in.
  • Water. Falling water? Keep that stuff to yourself sunshine.
  • and sunshine. Could not stand any amount of light. It was to bright. At the worst of it was afraid of the light.
  • Hey Mom, there is more of you to love! Because there are three of you!
  • Overly emotional
  • Weird sleep.
    Sometimes I couldn’t sleep at all, like for three days at a time. Then I would sleep for a whole day with little 15 minute breaks every few hours.
  • I threw up about everything I ate. I was saltine and water girl. My Mom was excited when I asked for rice. I lived on the bathroom floor. Really, I had a pillow and blanket.
  • My depth perception was awful at times
  • I started telling jokes. What did the floor say to migrainer? I’ll always be there for you. All of my senses were screaming at me for no reason. It made me very sad.

Slowly, impatiently, frightfully, and clumsily is how I went. Somehow I have gone plop for a brief moment. We will see how long my simple ache holds on.

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We Exchange Words

I play Words With Friends. My sister asked me if I played earlier:

Little Sis: These are crap letters.
Sis: Do you have the Words App?
Me: Why yes I do…I feel it a great way to exchange words with people. Even strangers since they added the play with random people feature.
Sis: Oh, so you use it to talk with people with the chat and keep connected with friends as a social media.
Me: It is a great avenue to exchange words.
Sis: That’s great!
Little Sis: It is a great place to exchange words…like Qintar. She breaks out in laughter.
Sis: Oh, playing scrabble together is not communicating or being social. I should call your doctor, tell him you live in a box and don’t talk to anyone!

We did pay for our tease, a five minute lecture on the importance on keeping me connected with friends and family. Now I think she is stalking my Facebook and finding out my last status update (I wrote something not posted or re-posted) was July 22 but before that is was the beginning of May. And I lost the website address to the online pain support group. I’m looking for it. I might be in trouble tomorrow.

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This Must Be Serious

I often see “everyone remembers exactly when the pain began.” What they were doing, day, minute, even to the second.

But do you remember the day when the seriousness of what was happening hit you? A moment of clarity. When you realized you were screwed over by your own body?

That moment is clearer to me then the day the pain began.  Which is understandable I suppose because the pain made me pass out.

I have a twin brother. We did everything together growing up, almost inseparable. I was the crazy imaginative irrational rascal and he the stoic rational calm brat. We made a great team. When something was amiss Mom and Dad automatically yelled for the “twins”.

Collage and the Air Force separated us for the first time. I had been trying to call my brother since my first seizure with no avail (time zones, phone tag), so a week later I e-mailed my brother the details of my adventures and warned him that I needed to speak with him the evening of my first neurologist appointment and to call me with no regards to the time. The appointment did not go well.

Brother demanded a full account of my pain and why he wasn’t told the seriousness of it. He sounded angry,  he never sounded angry. He was talking fast and rambling a little. That is what I do when I get emotional. He has a facial expression and a slight tone, not a slightly raised voice and short pauses.  I hadn’t even told him how awful the appointment had gone yet. When the time came that he paused for that account I was surprised by my calm tone and reassurances that we had a game plan. It would not do. I needed to transfer to university down the road and live with him. He needed to care for me. Suddenly I am reminding him that he was awaiting orders to ship out. That the plan is irrational. For the first time my brother said something irrational and had deviated from his calm air. For the first time I told my brother no without being persuaded or reaching a compromise. (If he was not awaiting orders I would have transferred.)

My brother was scared and at a loss of what to do. It scared me. It made everything that was happening sink in. I realized that my internal dialog was referring to myself in third person. I wasn’t going through this, it was “Crystal” from “The story of her life.” I was confused, why did my brother just behave so?  Why do did we to go against our characters? I wanted to go but couldn’t, he should have said that. It was the first battle lost to my illness. I realized my illness is forcing my relationships to change. The illness had taken a few things away, this made me acutely aware of them. That brought it all together. The reality, seriousness, gravity, life changing tragedy that has darkened the doorstep of my family.   This moment was worse then the moment the pain started. The wave of emotions set off a migraine and I cried myself to sleep.


To give you an idea, I remember him loosing his calm and treat me this way only once before. I almost drowned while white water rafting when I was about 8 years old. He pulled me out of the water and when I woke up he was rebuking me. I did not respond with rationality.  I saw I lost my oar, afraid of getting in trouble, I tried to go back into the water to retrieve it.


Filed under epilepsy, migraine/headache, Random

FreeRice, fighting hunger


This is a cool website. It has educational quizzes. As you take the quizzes the owners donate rice for every question you get right. it is pretty awesome. They cover a variety of topics, including languages, math, humanities, science, geography, chemistry, and SAT prep.

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Dyslexie Font: Awesome

I found the best font to use for anything. It is Dyslexie. Dyslexie was designed for dyslexic people. On the website you can read how Christian Boer invented it. (

I have a the type of dyslexia that the letters move and get jumbled around. So, instead of two letters being switched or a letter being upside down, I see the letters swimming off the page while randomly doing flips and playing do-si-do. Before I became ill it was always very slow, but now the speed is controlled by my migraines.

Mr. Boer achieved his goal. It makes it easier to read even when I am experiencing some harsher symptoms. I think the font is worth a try for people who need to be able to read while having minor visual troubles. None of these letters look the same. This font has made the arches and erratic spaces between letters and words that make reading difficult easier to overcome.

I would like the stress that I think it would more helpful with minor visual side-effects of migraine. It is not going to help if you are seeing in triplicate (I have been there) but if things are a little blurry I think it would help. Also, it could be a life saver for a dyslexic person.

It is free for personal use. The draw-back is that it is expensive for any other kind of use.

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