Monday, December 31, 2007

Chronic Monday: How to say 'thank you' to our service people and how this relates to chronic illness

I thought this would be an appropriate blog post for New Year's Eve, 2007. Here's to a 2008 that is free of conflict that is unnecessary and unsanctioned by the people of these great United States of America.

How does this relate to the topic of ICI, you might ask. Here's a tie-in: Have you ever wondered what might become of you if there were actually a war in THIS country? Or am I the only morbid person with CI who envisions a life (if I lived through the initial attack) where I was suddenly on my own and off my meds? Meds, several of which say plainly that suddenly stopping could cause seizures and other uncomfortable sounding consequences. I'll stop the morbidity there, though I could go on envisioning what my life might become in the event of a war on American soil. I do understand that it's not all about me-me-me.

My New Year's resolution for 2008 is to wipe the clutter out of my home and my life, for good. I'm sure you'll be hearing more about it as the year progresses.

Best wishes for a joyful and peaceful holiday season now and for the joy and peace of the season to be with you and yours in the coming year.

Thursday, December 27, 2007

EVERgreen Photo by Broken Gargoyle aka Jim Misener

Host unlimited photos at slide.com for FREE!
Click the link above the picture for the sideshow of all his work.

The photographer's website has some interesting stuff:
The Gargoyle's Domain

Good "Pain" section

Monday, December 24, 2007

Chronic Monday: A patchwork of items on chronic illness and the holidays


Happy Hanukkah, Merry Christmas, Have A Kickin' Kwanza and a Happy New Year!

Here are a few items I'm looking at now:

Keep My Mind Focused on Good Health

O Lord, I find it hard to remember what it was like
to be healthy.
Help me keep my mind focused on good health
and strength.
Let me be positive about the course of treatment
I am undergoing.
And let me always have faith, great faith,
in your presence in my life
and your glory in my health.

From "Peace in the Storm: Meditations on Chronic Pain and Illness" by Maureen Pratt.

Psycmaster: Non-Denominational Spiritual Psychology and Mental Health

A Spiritual Approach to Holiday Blues
by Judy Marshall, PsychMaster.com

Positive Strategies for Dealing With Holiday Blues

Mental Illness: Coping With the Holidays - Brochure, applies well to any chronic illness.

NAMI Award Winners - books and DVDs recognized by NAMI for their outstanding contribution to public understanding of mental illness. I've never been steered wrong by their recommendations and these items make good gifts... if you're still shopping at this late date!

Feeling Grinchy? When Chronic Illness Threatens Your Holiday Joy

by Lisa Copen

The country it seemed

Liked Christmas a lot...

All was joy, red and green.

But the Grinch,

Who lived with illness,

And had a heart of the blues,

Did not like Christmas!

The Grinch dreaded Christmas!

The whole Christmas season!

So much to do, so little energy,

there were all kinds of reasons.

It could be said that the medicines

were making her mind feel like putty,

She went shopping at last,

and forgot why she had gone---how nutty.

But we think that the most likely reason of all,

May have been that her heart was hurting,

trying to find her place in it all.

But, whatever the reason,

Her heart or her head,

She laid there on Christmas morning,

with a feeling of dread.

Staring up at the ceiling from the bed, feeling very down,

She wondered how to make it through this day,

without even the hint of a frown.

For she knew every friend and family member around,

Would be arriving soon,

ready to open the gifts and paint the town.

"I just want to feel decent!" she snarled with a sneer.

"Today is Christmas! It's actually here!"

Then she growled, with her grinch fingers nervously drumming,

"I must find a way to keep the pain from coming!"

For, later she knew...

...All the relatives would arrive

They would bring with them her nieces and nephews who would make a


and tons of noise.

They'd rush for their toys!

And then! Oh, the noise! Oh, the noise!

Noise! Noise! Noise!

That's one thing she hated!


Then the family, young and old,

would sit down to a feast.

And they'd feast! And they'd feast!


They would start on pudding, and rare roast beef,

With her irritable bowel,

the Grinch couldn't eat these in the least!

And then they'd do something she liked least of all!

Every family member, the tall and the small,

Would stand close together, and say, "You look so great!"

They'd all tell her she needed to get back to work,

Stop lazing around in her pajamas so late!

They'd talk! And they'd advise.

And they'd think

they were so wise.

And the more the Grinch thought of the Christmas-Nice

The more the Grinch thought,

"I must stop this whole thing!

"Why for over five years I've put up with it now!

I must either deal with it or convince them somehow!"

...But HOW?"

Then she got an idea!

An awful idea!

The Grinch got a wonderful awful idea!

"I know just what to do!"

The Grinch laughed in her throat.

And she made a quick run to the closet

for her lounging coat.

And she chuckled, and clucked,

"What a great Grinchy trick!

"With this robe and my slippers,

I'll look just like I'm sick!"

"All I need is a sniffle, a cough, maybe a cane..."

The Grinch looked around.

But since canes are scarce, there was none to be found.

Did that stop the old Grinch...?

No! The Grinch simply said,

"If I can't find a cane, I'll just look sick instead!"

So she got out her pale makeup

and tried not to use anything pink,

She made sure the circles under her eyes,

were not covered up, but seen.

Then she threw on some sweats

And put her hair up in a twist

It didn't look fancy,

It looked like you do when you're sick.

Then the Grinch said, "I'm ready"

They can start to arrive,

I'll be nice to everyone,

But I'm not going to lie."

The family members arrived

and saw the Grinch arrive at the door.

"What's happened to her?" They whispered and more.

The Grinch said, "Hello, come in, how are you?"

And when they asked her she just said, "Today's not a good day.

It may be Christmas but I still feel a droop."

Then little Cindy-Lou arrived

dragging her noisy toy behind her.

This was more than the Grinch could take!

She couldn't allow that noise to batter.

The Grinch reached out and took the toy,

"let me have that, hon.."

She stared up at the Grinch as asked,

"Auntie, why are you taking away my toy? Why?"

But, you know, that old Grinch was so smart and so slick

She thought up a lie, and she thought it up quick!

"Why, my sweet little tot," the Grinch lied,

"There's a better one under the tree,

we have even more to surprise!

"So I'm taking this one away for now, my dear.

"I'll put it away for now, and later, bring it back here."

And her fib fooled the child. Then she patted her head

And sent her to the tree to open up a quiet puzzle instead.

The Grinch thought she had it all figured out,

At least people understood. There was no more doubt.

She expected to hear people talking about her,

In the kitchen they surely must all be worrying about.

"That's a noise," grinned the Grinch,

"That I simply must hear!"

So she paused. And the Grinch put a hand to her ear.

And she did hear a sound rising through the wall,

It was joy and fun, at first it wasn't concern at all!

The sound wasn't sad!

Why, this sound sounded merry!

It couldn't be so!

But it WAS merry! VERY!

She stared into the kitchen,

The Grinch popped her eyes!

Then she shook!

What she saw was a shocking surprise!

Cindy Lou sat in her mom's lap and said,

"What's wrong with Auntie?"

Her mom told her quietly, "She's a very special lady.

When we visit her, she often tries to look nice,

But she still hurts inside,

She just acts like she's fine."

"I love Auntie, I don't want her to hurt," said Cindy Lou.

"I know," said her mom, "We love her too."

Family members were still having a great time,

They weren't worried about her,

or even of her appearance surprised.

She hadn't made them concerned,

because they already were,

She just didn't know

that they didn't know what to say to her.

And the Grinch, with her grinch-feet ice-cold on the floor,

Stood puzzling and puzzling: "How could I be adored?

I look so awful, I'm in such a bad mood.

I've been such a fake hostess,

I even took away a gift from sweet

Cindy Lou!"

"I thought no one understood,

but I never thought to ask.

I listened to what they said,

and didn't try to explain.

I assumed they should just know how I felt

I let them pull my chain."

And she puzzled three hours,

`till her puzzler was sore.

Then the Grinch thought of something

she hadn't before!

"Maybe Christmas," she thought,

"doesn't come from feeling great.

Maybe Christmas...perhaps....

"comes from communicating straight!

Maybe Christmas comes from accepting the love

Of those all around us, friends, and God from above."

And what happened then...?

Well...in some parts they say

That the Grinch's small heart

Grew three sizes that day!

And the minute her heart didn't feel quite so slow,

She whizzed through the house, with a spirit that was no longer low.

The body still had aches, the pain didn't go away.

But the rest of the afternoon, her spirit felt at play.

Prayer for Those in Physical Pain

Oh Lord, help me to feel your calming hand upon me
when I am in pain.
Let your ever-loving comfort enfold me,
And give me the heart to see
that in my suffering, I am becoming
closer to you...
and more divine.

From "Peace in the Storm: Meditations on Chronic Pain and Illness" by Maureen Pratt.

Sunday, December 23, 2007

Chronic Monday Taking Leave ...

of Absence, Sickness, Holiday? Take your pick. More when I'm able, and I apologize for missing last Monday with no explanation.

Thanks for checking in!

1/5/07 Update - Turned out I didn't have to take any more Mondays off. I'm thankful for that.

Monday, December 10, 2007

Chronic Monday: Seven Random Things Meme

My new cyber friend, Aviva Brandt, author of the Sick Momma Blog, honored me this week by tagging me for the "7 Random Things" meme. In her link to my page on the ICIE, where she officially "tags" me, she says
"The hardest part of illnesses like mine and so many other people is that we don't look sick so people often don't realize how hard our illnesses hit us. Her (my - Sherril's) blog makes me think about that aspect of my illness. She's also the one who I first saw mention NaBloPoMo, which was a positive experience for me. Mostly."
I think Aviva's blog is excellent, and I don't even have any kids.

This is the first time I've been "tagged." For anyone else out there who doesn't know what some of this stuff means, here's how I got my education on the topic of the "meme."

What IS a Meme???
The Daily Meme definition
The more esoteric Wikipedia definition
And the best explanation imho, from How to Cope With Pain Blog

Oh, OK, one more (this one's funny & rated PG-13) from Raiméis (Irish Gaelic for "nonsense")

So with no further ado, here are seven things you wouldn't necessarily know about me from reading this blog:

1. I like elephants.

2. I collect aprons. Apron Memories

3. The first things I ever wanted to do were to sew and to dance.
Dancing her Prayers, by Shiloh McCloud

4. I used to sell Singer (mostly) sewing machines and accessories in a Jo-Ann's Fabrics store in Denton, Texas.
This looks to be the latest and greatest in cabinets, by Koala.

5. I used to be an Academic Advisor in the College Of Business Administration of the University of North Texas. I can still tell a business major on sight. They usually don't even have to speak.

6. I have a B.A. in Political Science with a minor in Computer Science from the University of North Texas. And lots of Spanish credits. In other words, I'm a hard core arts & sciences person. I spent many a night in this I.S. building running my computer science programs FROM PUNCH CARDS...

unt_isb, originally uploaded by fei2.0.

7. I'm a Unitarian Universalist.
Unitarian Universalist Association

Here's where I tag 7 other people to do the Seven Random Things Meme:

1. Invisible Illness CFIDS/FMS, "Allow yourself to share your experience with this invisible illness and help yourself and others too", because Viv seems like a very nice and interesting person and I'd like to know more about her.

2. Urikalization, computers - biology - philosophy - mythology - physics - math - & science fiction, because this guy is fascinating! And because he was born with that gene that makes him able to arch just one eyebrow at a time...

3. Mad Goat Lady because she's in Australia and she's mad and... English Toy Boy husband, indeed!

4. The Art of Healing Dolls
Cause she's the guru of healing dolls and I believe I've mentioned how very cool I think they are.

5. Chronic Holiday because he is SO FUNNY!

6. Technomadic Packrat because he seems like a really nice guy and I'd like to know more good (or otherwise) stuff about him.

7. 30 Days Clean and Sober because I can't help but wonder about this guy... mostly I wonder if he really one day woke up in a pool of his own urine on his living room floor not for the first time, if he is really a psychologist who during the day helps people deal with addictions but when the last forms are filled out and he shuts the door to his office he is as disturbed as any of patients maybe more so, and if he really overcame severe alcoholism in 30 days as he blogged about it - like he says he did. Or if he's just telling a story. Sorry dude, but I WONDER.

The rules:

1) Link to the person that tagged you, and post the rules on your blog.

2) Share 7 random and/or weird facts about yourself.

3) Tag 7 random people at the end of your post, and include links to their blogs.

4) Let each person know that they have been tagged by sending an email and/or leaving a comment on their blog.

Saturday, December 8, 2007

Response to Sick Momma'a Blog Post "Why Is It So Hard To Sleep When I'm So Darn Tired?"

"Fence" by David S. Bell, MD

Maybe this isn't so much an answer to the question as a possible solution. I had already found that Clonazepam greatly helped me to sleep, especially when I was having one of those "mind racing" kind of nights that just wouldn't quit. When I found this article in Dr. David Bell's Lyndonville News, I knew why:

Clinical Notes

The clinical notes for this newsletter is kindly suggested by a reader who sent information to the website. It is extraordinary how much knowledge and information is available, and really needs to be collected and presented. It is because of this that I would like to re-organize the research group (see below).

For years I have said that clonazepam is perhaps the most useful medication in ME/CFS, and because of the notes of a reader, I now understand why. Clonazepam is a medication distantly in the anti-seizure and benzodiazepine class. I say distantly because it is different from Xanax™ or Valium™. Clonazepam has a long duration of action, and is more gentle. It has no euphoria and I have never seen anyone become addicted to it. In some patients and in the right dose it improves the symptoms of ME/CFS, particularly sleep and general malaise; for some, it increases energy and activity.

The effect in reducing fatigue has always been confusing, as it is a medication that should cause tiredness. Persons with ME/CFS should not be able to tolerate it. There are two broad categories of ME/CFS; one is the “heavy as a log” tiredness where it is easy to fall asleep, and persons drink coffee to stay awake. This type of CFS is milder, and relatively easy to treat. Clonazepam does not help in this type. The second type is the “wired and frazzled” where despite exhaustion, persons cannot sleep and they are unable to take any stimulants. Clonazepam can help in this type and it is not because of the simple explanation of anxiety. This type of ME/CFS is neuro-excitatory, and it may be that the benefit is related to effects of clonazepam on the sympathetic nervous system. My thanks to the kind reader who sent in the information and references.

Dr. Bell's Lyndonville News website is nothing less than great. And not only does he take really good pictures, he shares them freely.

Sunday, December 2, 2007

Chronic Monday: Sleep Study Last Night

I got the idea to take pics of my sleep study from this pictorial description of a study at Stanford U. Sleep Disorders Clinic, on the talkaboutsleep.com website. Here is the link where they describe what all goes into a sleep study: View A Sleep Study. Please refer there for more nitty gritty details.

So, here's my View of a Sleep Study, taken at the Tift Regional Medical Center Sleep Center in Tifton, GA.

This is the main desk where I guess they watch all the feedback from the gizmos they had me hooked up to.

The bed!

The room.

The bathroom was small but nice. It seemed to be for my own private use. I never saw any trace of anyone else being in there; matter of fact I never once saw either of the other two patients who were also having studies done last night.

Mom by the nice TV. I watched Part I of Tin Man, the new Wizard of Oz movie on the SciFi channel. They even let me watch when I got in bed. LVN Dennis put the TV on a timer; I was asleep before the TV shut off.

I've read a lot about controversy over whether sleep clinics will allow a person to take their sleep meds the night of the study. Well, this one does. LVN Dennis explained it to me but I'm sure I can't do his explanation justice. Something like if you have a problem you're going to have it even though you take your meds, whether you know it or not. But if you don't sleep for a good 6 to 8 hours so they can do a good observation, they won't even be able to see the problem because - YOU DIDN'T SLEEP! I was actually quite worried about this on the day of the test. Actually, I was a basket case. Mom drove me to the test so I could take half of an anti-anxiety pill that afternoon, and I took maximum meds that night.

My room had a palm tree decor throughout. Very nice.

The clock on the wall that doesn't work (LVN Dennis assured me that yes, that is significant) and the camera. They filmed me sleeping all night.

Me in the palm tree upholstered chair.

All the wires and stuff after LVN Dennis took them off of me in the morning.

A close up of the control box that the wires all plugged into.

LVN Dennis took my picture while I was all hooked up. This is not me. This girl from the Talk About Sleep page is quite cute. I was not. This is just to show you what you might look like.

The building as I left about 6 a.m. LVN Dennis woke me up at 5:30. He let me sleep an extra half hour because I was "sleeping good."

I hope to get the results of the study next week.

12/27/12 Update:  Sleep Study results


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