invisible illness

I found this meme and decided I'd use it today. 

30 Things About My Invisible Illness You May Not Know


1. The illness I live with is: Chronic Epstein Barr Virus

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: 1993 or so.

4. The biggest adjustment I’ve had to make is: learning how to listen to my body. Discern when exercise is going to energize me and when it is going to wipe me out. Determine what I am able to do in a given day.

5. Most people assume: I have no idea. I know that I used to assume that people who had chronic fatigue were just lazy and making up a disease to excuse it. So, of course, that's what I'm afraid people assume about me.

6. The hardest part about mornings are: waking up feeling just as tired as when I went to bed.

7. My favorite medical TV show is: Don't really have one. Dr. Who? No, that doesn't count. I watch re-runs of Emergency now and then.

8. A gadget I couldn’t live without is: My heating pad.

9. The hardest part about nights are: The insomnia.

10. Each day I take __ pills & vitamins. Not as many as I should. There are supplements that can help, but I have a hard time getting into the routine. If I took everything it would be about 10.

11. Regarding alternative treatments I: am grateful. There is no help for CEBV outside of alternative medicine. Many main stream docs don't even believe in it. My doctor has provided some great information and treatments. Best of all, he finally diagnosed me. He's an MD, but uses alternative medicine, too.

12. If I had to choose between an invisible illness or visible I would choose: This is an interesting question. I'm not sure. I feel like I would get more understanding if it was visible. But I like that I look healthy on the days that I feel good.

13. Regarding working and career: I don't know how I could have a job if I needed to. I'm very thankful that I don't have to. I don't manage my work at home very well as it is.

14. People would be surprised to know: how relieved I was to get the diagnosis. Maybe. I don't know if that would surprise people or not. I can't think of a different answer.

15. The hardest thing to accept about my new reality has been: That it's permanent.

16. Something I never thought I could do with my illness that I did was: I have no idea. I would just erase this question, but then I'd have to re-do all the numbers!

17. The commercials about my illness: There are none. I wish there was more mainstream acceptance and information about it.

18. Something I really miss doing since I was diagnosed is: I've never had a lot of energy, but I miss being able to walk through the mall for hours or the zoo or museum without wanting to collapse into a puddle and cry.

19. It was really hard to have to give up: I don't know that I've given up anything. I just have to rearrange my schedule sometimes.

20. A new hobby I have taken up since my diagnosis is: Nothing.

21. If I could have one day of feeling normal again I would: Like I said, I've never had much energy. Before I got this virus I had chronic tonsillitis and that caused a lot of the same symptoms. I'm not sure I would know what to do with normal. I would probably go on a hike or something.

22. My illness has taught me: humility

23. Want to know a secret? One thing people say that gets under my skin is: you're just depressed. I don't get that now, but before I was diagnosed that's what every doctor told me.

24. But I love it when people: ask me how I feel and mean it. Realize that it is a real illness and give me grace when I can't follow through on something.

25. My favorite motto, scripture, quote that gets me through tough times is: They that wait on the LORD will renew their strength. They will rise up on wings like eagles. They will run and not grow weary. They will walk and not faint. 

26. When someone is diagnosed I’d like to tell them: aren't you relieved to finally have a diagnosis? I haven't actually met anyone who has been diagnosed since I was, but that's what I'd say. A person gets tired of being sick and not knowing why.

27. Something that has surprised me about living with an illness is: what a jerk I used to be about people with these kind of illnesses. I've been humbled a lot.

28. The nicest thing someone did for me when I wasn’t feeling well was: take up the slack. Unfortunately that falls on my husband most times. Poor guy has enough to do without doing my stuff, too.

what is real?

There's a lot of talk these days about authenticity. At least in my circle of friends.
It's an idea I've been meditating on for some time. What does it mean? It's something that I certainly can't cover in one post, so expect to be hearing more from me on the topic.

We live in a world where it's difficult to detect what is real and what isn't. Vocalists are auto-tuned so that can't tell what their real voices sound like. Even I could sound good with that technology!
Photos are manipulated to show any variety of things. Some are obvious, but others are quite deceptive. I could whittle myself down to a size 5 and erase every sign of aging if I had the right computer program.
These days, you can't even believe your own eyes or ears.

And in the midst of this there is a desire for authenticity. People want to know that what they see is what they get. People are tired of hypocrisy, (I suppose they always have been, I mean, who likes a hypocrite?) and games, and facades.

But do we even know what that looks like anymore? Authenticity, I mean. Do we know what it means to be real?

i'd like a side of dexatrim, please

My husband shared this article with me this morning. I laughed. I choked. I snorted, I got a tummy ache. I cried.
I'm not sure why it struck me so funny apart from the pure lunacy of it. The fact that anyone would even suggest such a thing and actually be taken seriously. Then put it in the American Journal of Cardiology?! It is utterly ridiculous. Asinine. Ludicrous. *Add your own synonym here.*

My favorite part:"These companies already have an infrastructure for providing a variety of condiments... A generic statin could be added to the panoply of items in the self-service tray at little additional cost."


Soon, we will have no need for any personal responsibility. I think they should include diet pills, and Glucophage in the little packets. Cover all the possibilities, you know?

scary movie

I already shared this on Facebook, but it tickles me, so I'm sharing it here, too.
Angie Hunt shared this site on her blog. You type in a script and the computer turns it into a movie. You can also choose characters, voices, camera angles, background noise, etc. It's fun.
This is my first movie. I spent a lot of time making a second one that came out much better, but then I was informed that I had to spend money in order to publish any more.
So, if you make one make it your best effort! LOL

a what of writers?

A dazzle of zebras. Photo from morguefile.com.

We all know cattle come in herds.
Geese come in gaggles.
A group of crows is a murder.
But have you heard of an exaltation of larks?
Or a shiver of sharks?
What about an implausibility of gnus?
A seething of eels.
A rhumba of rattlesnakes.
A busyness of ferrets.
A pulchritude of peacock.
A boogle of weasels, a scurry of squirrels.
I could go on and on with these wonderful words. But you can go look for yourself at this site I found.

This all comes of my friend Bonnie Doran asking what a group of writers is called. She got some good suggestions: an anthology, a rabble, a prattle.
What do you suggest?

grandma's house

My grandparent's house on my dad's side smelled like:
wet sand
hot shale
warm cotton
creosote
wood
Kool aid
and grass outside
bacon
maple syrup
pipe smoke
Pledge
Downy
and Caress inside.

My grandma's house on my mom's side smelled like:
sidewalk
train tracks
and elm trees outside
peppers
cantaloupe
chicken broth
tomatoes
apple pie
un-salted bread
and peaches inside.

Any time I smell any of these it takes me right back.

Your turn...
It doesn't have to be a grandparent's house. Just anything.

writing stuff

In case you've wondered, I am still writing. 

Some things have changed a bit, though. 

My intention in the beginning was to not write at all as some of you may remember. But when it became obvious that I was supposed to, I decided to write beautiful moving fiction for women. I started two different novels and had ideas and bits of a couple more.

Writing was difficult and painful.

In November I did the National Novel Writing Month (NaNo) challenge and wrote 50,000 words in a month. They were words that came out of my head without much interference from my actual mind. They were, in essence, mindless. But I ended up with a pretty interesting story, or mess of several stories. And there was nothing beautiful or moving about it. 

But it was FUN!

So, I decided to work on that mess and make it into a book. I took it with me to the Glen Eyrie Writers' Summit in June to see what could be done with it.

My instructor, Kathy Mackel, mentioned that perhaps I could turn it into a Middle Reader--for 10-14 year-olds. I rebelled. I don't want to write kids' books. I want to write beautiful moving fiction for women. I'm willing to write kookie funny fiction for adults. I don't want to write for kids.

Guess what I'm doing.

Yep. I'm writing a middle reader. And Guess what else. 

It's FUN!

P.S. My story is about a boy named Match.