Monday, November 25, 2013


The holidays are coming!
Like everyone who writes about chronic issues,
there are hints and tips about getting through the holidays.
So, in the spirit of the day,
I also have helpful hints, observations, and a peek into my day.
Here goes!

First....Make all your grocery lists from bed. Give the list to your kids, spouse or significant other. Send them to the store. Assign the side dishes to the rest of the group.
Stay in bed.

Well, the house needs to be a roomba on the floor. Turn on the ceiling fan and watch the dust will rise to the ceiling. Look around and decide that it doesn't look too bad. Great!! 
Go back to bed.

Get on the phone to your local grocery. Most of the deli departments will make the turkey. Send someone down there to pay for it and make sure the store is open on Thanksgiving. It is? Great! If you're exhausted from making holiday arrangements roll over and put the pillow over your head.
Stay in bed.

It's the big day!! You'll need to get out of bed to get ready to greet guests. You definitely don't want to be stressed today. Since there's plenty of football on, just wear the sweats from your favorite team. This way you're game appropriate and in jammies at the same time! If you want to put on makeup start 5 hours ahead ... that should give you plenty of time. Shower and makeup done?
Get back in bed!

Have the turkey picked up or preferably delivered. This should be done a couple of hours before the guests arrive because the wonderful aroma from that glorious turkey needs to permeate the house.  Just an the turkey in a roasting pan and throw the ones from the store in the garbage cans outside. It helps to practice your exhausted-from-cooking look in the mirror. It also helps if you throw a little flour around the kitchen. Hold the cannister tightly otherwise you'll have flour everywhere. I learned this one the hard way. Also, I didn't realize how much my dog Buster loved flour. Yay! It's a game!!! I chased after him and had to clean the little flour paw prints that were throughout the house. After you're done cleaning the flour off the counters and sure to shake the flour out of your hair too....
Go back to bed.

I don't have to set the table. Why? Because I keep dining room table set year round. This way I don't have to worry about it. Quick tip? Just wipe the dust that has accumulated around the edges of the table. Practice your smile. have an hour before guests arrive?Better not push it...
Go back to bed.

Thanksgiving is here! The smells in the house are divine! Guests are arriving and bringing heavenly dishes for tasting! It's time to gather 'round the table grateful for each other and all blessings.....(Don't hold my hands too tight....that hurts!) I'm so thankful for my family and friends.......and my bed.

As we enjoy the glorious food and company, I've been reminded of the times of years past...I sigh wistfully.....or was that a snore? Damn.....I'm starting to go under from the tryptophan. It's the dreaded turkey coma! At least when dinner is over  I can curl up on the couch pretending to be interested in the game. Stay awake.....stay awake.....stay awake....
How many hours till I'm back in bed?

I rise from the table full with bones creaking and stiff. I've been sitting so long that the pain is making me dizzy. Or is that the wine? The couch is calling and the noise from the shouts of the lastest touchdown make my head hurt. Or is it the wine?  Maybe I should head back to the kitchen and help with the dishes. Really? It's all done?? Oh how wonderful!  I'm so thankful that everyone else has cleaned the kitchen! Where did all the time go?? Dishes are washed and glasses sparkling....The dining room table has been reset waiting for next year! Really? It's time to go already? You can't stay? Did I just totally zip on the day?? I don't remember.

So I shuffle back to the bedroom and climb in my comfy bed and cover myself with a nice warm comforter. It's been a long day and I'm ready to close my eyes in glorious slumber. 


Now, I can't sleep.

Happy Thanksgiving!

Monday, November 18, 2013


I don't have any.
But, that's about right.

The Romberg Test. I had no idea what it was until my neurologist started testing me years ago. It was one of the many tests that I flunked and the doctor wasn't surprised.

There are so many symptoms. I mean, there's the obvious pain and fatigue......or the twins, as I like to call them. The creepy little twins. The pain of Fibromyalgia can be as severe as the pain of Rhuematoid Arthritis. It can be low back pain with debiliating pain that shoots down your legs (I have this and it's not fun.) 

Did you know that 40% of people with Fibromyalgia report that they have muscles spasms and leg cramps? Those aren't real fun either. Have you ever been wakened from sleep with one of those babies?

So more about balance and the Romberg test. The reason this came up?  A woman in our support group had a question regarding balance. Some of the people in our group didn't know that balance can be a problem in Fibromyalgia. So what is this test? Basically, it measures how different systems of your body work together to maintain balance. It's pretty simple to do:

1.  Stand up with your feet together. Have someone nearby just in case you have a strong reaction to this test. 
2.   Keep your eyes open for one full minute.
3.  Then stand with your eyes closed for one full minute.

A positve reaction to this test is if you sway or even fall over. A lot of times it doesn't even matter that your eyes are closed. Even when my eyes are open, if my feet are together, I tend to sway. But, let's get back to balance. It seems that most people with Fibromyalgia and Chronic Fatigue are unstable. For those of you who know me well......don't even go there...but it is true. We have trouble with body boundaries and gait tracking. When I first get up and I've been in a real sound sleep, I've been known to walk into walls. I've walked off the sidewalk and bumped into doorways.

That's why I don't drive on holidays.


If I was stopped, I'd NEVER pass a field sobriety test.

And I don't even drink!

Wednesday, November 13, 2013


I really had to laugh.
Fibromyalgia affects your love life?
Is it cold in here?

I've been asked to go to dinner by Mr. Dreamboat. I just can't wait....I've been looking forward to this for so long. I just need to get out of my house! My heart just skips a beat thinking about it...oh that him or atrial fibrillation?


The big day is here. I awake to the birds chirping just outside my window. As I open my eyes to the glorious sunshine, I shut them quickly because the light hurts my eyes and bury my head in the pillow. Ow. I moved too fast and the morning stiffness has set in. Like the tin man begging for an oil can fix, I make my way to the coffee maker. 

Great. I mean great! 
I'm really looking forward to it.

Just in case, I put fresh sheets on the bed. Now, I'm so exhausted that I have to lie down and take a short nap. I tell myself that this is good and I'll be nice and refreshed for the evening. I have a lovely lavender spray for the sheets but as the spray wafts through the air, I start sneezing uncontrollably. I'm sure the redness around my nose will go away by dinnertime.

Since dinner is around 7, I figure that I need to start getting ready for the evenings festivities around 3. This will give me plenty of time because it will take that long just to tie my shoes. Did I just say that? OMG, that won't work....I have to put on the torture device called heels tonight. I'll need another nap after I get out of the shower. 


I shouldn't have put on makeup yet. Now, I need to fix my mascara again because it's under my eyes after my nap. Crap. I will have to start over. At least I kept my hair in a towel. OK, makeup is washed off and I start over. It's now around 5:30 and I haven't even dried my hair. I hate this part because I have to stretch my arms up to use the round brushes.

Did I really agree to go out to dinner?
I don't look too bad but I'm starting to hurt. 
The stiffness and pain has returned with a vengeance and all I want to do is get in bed. 

Oh, knock it off. 
Just start smiling.

I'm asked if I feel good enough to go.  I manage to say, "oh yeah," with just the slight curl of my lips which look more like a snarl than a smile.

By the time I limp to the car I feel like crap. I pretend to look out the window because if I say anything I might give it away. Once in the restaurant I look at all the happy people and wish I could take a time machine back to before all of this attacked my body. The room sounds loud and the waiter bumps into my shoulder as he approaches the table. That's all I needed. Nothing looks good on the menu but, like the trooper I am, I manage to listen to the waiter blather on about the chef specials. 


I'm tired of the noise, I'm tired of looking at food that I really don't want and I'm tired of the waiter coming by every five minutes asking if I'm OK. 

What really scares me is the look on my honey's face. He's oblivious to the internal war I'm waging and I can just tell that he thinks the evening will last past dinner. He grabs my hands and the pain shoots up my shoulder. My eyes gave everything away. Plans after dinner??

Not only no.
But hell no.

I hurt from sitting in an uncomfortable chair making small talk that I am in no mood to make. We made it through dinner and I think he could tell by the way I flinched as he touched my shoulder that anything else he had in mind for the evening was going out the window.

Now, let's go back to the article. 

Who the heck wants to be caressed when every bone, muscle and fiber of your body is crying out. Even if it's a low pain day, it's AWAYS THERE and touch is difficult. Fibromyalgia and Chronic Fatigue make terrible bed mates. 

If it doesn't hurt...

you're too tired to care.

You just need to read the survey.

Wednesday, November 6, 2013


How dare they?
We should be up in arms.
Is anything real anymore?

I was reading an article about herbal supplements. A lot of us use them in conjunction with conventional medicine for relief from anything from colds to pain. And everything in-between. I was appalled to read an article where the DNA was tested and the herb was nowhere to be found in the bottles and if it was a highly diluted form.

It seems that greed has struck again.

This is a five BILLION dollar a year industry and what people have been buying is little more than powdered rice and weeds. Yes, it is unproven that these supplements can cure what ails us according to the FDA, but,  HOW DARE THEY???

Canadian researchers tested 44 bottles of supplements sold by 12 companies. If there was the actual herb in there it was often diluted or replaced with fillers like rice, soybean or wheat. 

Where is the oversight of this industry?

If you've used echinacea, St. John's Wort or ginkgo biloba the odds would say that you probably didn't get what you thought you were buying. Or there was a highly diluted substance being passed off as the real thing.

Just terrible.

How do we really know what we are purchasing?

I guess we don't.

Well, unless we run a lab.

I just have a eensie, weensie criticism of the article.


Friday, November 1, 2013


I guess it's true.
All in the way you write the report.

I was reading the AOL Home page for news and ended up in the Huffington Post, Healthy Living section.

I can't even believe this.

We are at risk of being labeled a somatic illness. To me, it sets the Fibromyalgia and Chronic Fatigue/ME fight back years. We have enough trouble being believed but stick us in the DSM-5 playbook and every doctor that thought we were being lazy neurotics will feel justified by throwing us a couple of antidepressants and shoving us out the door. 

Every invisible illness is at risk. If you even act, what they interpret, as too concerned about your symptoms or have them disrupt your daily life, you are categorized as having a mental disorder and catastrophizing. Well, that can be anything from chronic pain to cancer.

Victims of PTSD, chronic fatigue, fibromyalgia, Gulf War veterans, among others, have fought health and human services and the Institute of Medicine. These institutions have ignored research and tried to redefine the illnesses in purely psychological terms.  It has been a long fight and it isn't over yet. It's a ongoing, continual fight.

But get this..........

IN ORDER TO DESTIGMATIZE PEDOPHILIA, (yes, you got that right), the American Psychiatric Association in the Diagnostic and Statistical Manual of Mental Disorders, THE DSM-5....distinguishes pedophiles who have a mental disorder as those who act on those desires. The ones who just think about it (no matter how much) do not.

Are they fricking kidding me??????????

I'm going to link to the article here because I want to make sure I get this right. Click on "article."

Get this: "The difference (from the last edition of the DSM)  is you're not automatically saying that as soon as someone has a marked, unusual erotic interest that they have a mental disorder," said Ray Blanchard who co wrote the chapter on sexual disorders in the new DSM."

We have to claw and fight our way to be recognized and these "experts" in order to destigmatize pedophilia give these clowns a pass????????? Why in heavens name should these scumbags not have a stigma attached to this!


Let me get this straight......

If you have anything that isn't evidenced based (yet) you are at risk.

You can be labeled as having a mental disorder.

But sit in front of a computer and look at naked children and desire them....

Unless you act on it......


What a crock.

And it really pisses me off.