Friday, January 28, 2011


Sometimes it's just easier this way.

Why is everything such a fight? I fight every day for a healthier way of life. I fight to get the exercise that my body needs. I fight so that I don't have to take pain medication to function and I fight the fog that seeps into my brain. 

I fight the fog and I fight the pain.

I fight to keep a smile on my face when every part of me wants give in to the feelings of anger toward the driver of this car. I know that I have to stop this. It's counter-productive and I realize it. I can't go forward while I'm still looking back. 

I actually thought I was making headway.
Now I get penalized for fighting.

I found out that I got denied by my employer's long term disability policy. I've got doctor's galore that have documented my case, however, when it comes to an insurance company paying well, that's another story. They took an "independent" medical examination and casually inserted false statements and denied me again. The added plus was that they have a real problem with Fibromyalgia. Now, a suit will probably have to be filed.

I used to pride myself on my ability to be a fighter. I had abilities and I was confident. Now I'm just tired of fighting. Now I have to continue to jump through their hoops so they'll see that I'm serious about pursuing this claim.  Most people, at this point, just give up and go away.

However, I'm not most people.

You pay premiums and they pry and pick through your life with the intention of connecting the dots so they point to denial. I do realize that there are many fraudulent claims out there and they must be thorough so that they are weeded out but when there is appropriate documentation and they discard it, well, that's just plain wrong. Now the attorneys that the insurance company has on retainer can justify their jobs and take this case to court.

Just great.

I hate fighting.

And it looks like I'll have to keep fighting.

I'm really tired of it.

Friday, January 21, 2011


I have been so very tired.
It's almost impossible to keep my eyes open.
Except now.
I'll probably be up all night.

I had never heard of the condition called alpha wave intrusion. I knew a little about brain waves, mostly in connection with biofeedback and meditation. I'd never heard about the intrusion part.

One of the problems with Fibromyalgia is that we are often plagued with poor sleep and insomnia. There are different brain waves associated with the different levels of sleep. Alpha waves are associated with an active, awake mind. Deep sleep is associated with delta waves. If and when we do manage to get to the delta level of sleep, people with Fibromyalgia usually have those pesky little alpha waves show up right in the middle of that deep, restorative delta sleep.

It's during those deep levels of sleep that the body, and more specifically, the muscles can repair themselves. I'm guessing that the stiffness of our muscles in the morning really can't be traced back to the sleep problems. Or can it? I don't know because even if I do take a sleep aid I still wake up with severe muscle stiffness. 

Anyway, I've spent the last few days sleeping. Maybe I'm just catching up on sleep but it seems that every time my head hits the pillow I want to sleep. Now, it's not for a great length of time, just a cat nap. 

So now, the dilemma. Do I give in to the extreme exhaustion and sleep or force myself to stay awake and then try not to get so tired that I can't sleep? Every article I read about sleep tells me not to sleep during the day so that I can sleep at night. That would be a great tip except it doesn't work that way for me.

I still don't sleep well no matter what.

Behavioral modification doesn't do much for my sleep. Believe me, I've tried it for more than one day. I wanted to give it a real shot at working. 

It didn't.

First of all, I shouldn't be in bed with my laptop or have the TV on. I tried this. I really did but when the pain is spiking laying in bed in the dark with nothing to distract me is a real recipe for disaster. Distraction by any means possible is a way to get through the pain. It really does help to have something else on which to focus. 

Even if I do wake up and go to sleep at the same time every day it seems to have nothing to do with the amount of sleep I get through the night. Even if I somehow manage to sleep through the night, I still don't have restful, recuperative sleep. Most of the time, no matter what kind of schedule I keep, I am awake most of the night. 

So what do I do?

I do the bath thing.

I do the aromatherapy thing.

I do the sleep mask thing.

I do the melatonin thing.

I just don't do the sleep thing.

Monday, January 17, 2011


"Some days even my lucky rocketship underpants don't help."
Calvin and Hobbes by Bill Watterson

I love Calvin and Hobbes. I always have. There's just the perfect mix of innocence and snark in this cartoon and it appeals to my sense of humor. 

It also has something for every occasion.
This is one of those times and one of those days.

I just don't know why the pain has taken up permanent residence. 2010 was a tough year for the people that I know. Fibromyalgia certainly kicked fanny last year and 2011 doesn't seem to have any changes in that arena. 

So when I wake up in the morning and it's more of the same it tends to get a tad disappointing. I want to go to the gym and, trust me, I'm going to force myself to do just that. It's just that I'm forcing myself and I'm not looking forward to the exercise that my body so desperately needs. I've walked and I've been in the pool. I have to say that the pool is definitely easier on my muscles but I'm not real keen on public pools. I guess I have turned into a little bit of a germophobe.

I got on Facebook and a friend of mine said that she's going to make today a positive day. Those words speak volumes to me in a bittersweet way. It's great that she's in a frame of mind to purpose in her heart positivity, however, she's in a frame of mind that she has to purpose to be positive. See what I mean here? There's no opening your eyes and being excited to greet the day. 

We open our eyes with fear and trepidation.

We open our eyes and gingerly move to see how our muscles are going to react. 

Are we just having a minor uprising or a full blown rebellion today?

The muscle twitches really are painful for me and those have been on a real rampage lately. So, I am also going to purpose in my heart to greet the day on a positive note. I have read the optimist's creed. Have you read it?

Promise Yourself
"To be so strong that nothing can disturb your peace of mind.
To talk health, happiness, and prosperity to every person you meet.
To make all your friends feel that there is something worthwhile in them.
To look at the sunny side of everything and make your optimism come true.
To think only of the best, to work only for the best and to expect only the best.
To be just as enthusiastic about the success of others as you are about your own.
To forget the mistakes of the past and press on to the greater achievements of the future.
To wear a cheerful expression at all times and give a smile to every living creature you meet.
To give so much time to improving yourself that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.
To think well of yourself and to proclaim this fact to the world, not in loud word, but in great deeds.
To live in the faith that the whole world is on your side, so long as you are true to the best that is in you."
The Optimist Creed was authored in 1912 by Christian D. Larson, in his book "Your Forces and How to Use Them."

I really try to read this without smiling but by the time I hit line four I know I'm in real trouble. How do you take a person that tends to see the glass half empty and have this really hit home? There are lines of this that are no trouble. I try to always make my friends feel worthwhile but I can't always see the sunny side of life. I guess I'll have to keep reading it over and over. Maybe then it will sink in.

I think I'm being optimistic when I quote things like, "when you see the light at the end of the tunnel it may be the train coming at you full speed." That way I'm never surprised or taken off guard. I've always been a bit snarky and a glass-half-empty type of person. The Fibromyalgia just pushed it over the edge.


I'm not being optimistic?

Maybe it's true.

My lucky rocketship underpants aren't helping today.

Thursday, January 13, 2011


Mirror, Mirror on the wall.
Who's the fairest of them all?

I look in the mirror and wonder, "who's that starring back? "  It's not the fact that I have a few lines around my eyes. I've never minded those, I figured that I've earned them. I'm also not the type to get Botox. I don't mind the lines on my forehead either.  Actually, I don't have wrinkles. I can chalk that up to genes and Retin-A. I've used Retin-A since I was in my 20's and since I don't have wrinkles, it must work.

It's not cosmetic that keeps me looking in the mirror. It's the look in my eyes that shouts, "this woman is in a lot of pain." It's the eyes that don't crinkle at the ends when you're happy. It's the smile that doesn't quite reach your eyes. It's called personality lipo because Fibromyalgia sucks all the personality out of you. You go through life on personality flat line and it really sucks. BORING!

It's a look that I don't like.

I know there are times that I could earn an Academy award for the portrayal of a woman who is on top of the world and free of pain. Only people that know me very, very well can read the pain behind my eyes. Maybe that's part of it. I don't like feeling weak and knowing that my loved ones can see how much pain I'm in, well, it makes me feel vulnerable and out of control.

It seems that it's been a very long time since I've been out of pain. I can't really remember what it's like to take a deep breath and feel the freedom of life without pain. I mean, I can remember the last day. It was in January of 2008. 

The infamous car accident.

I am still living in the aftermath. 

I haven't been to the gym to walk this week. The pain has been spiking and the pain medication isn't taking the edge off so I decided to take it easy this week. I know I need the exercise but to chug a couple of pain pills sounds like it would kind of be counter-productive.  I don't know what it's going to take for the pain to take a vacation. It seems like I haven't caught a break in that area in quite a while. 

Just as an aside, I'm watching TV and the Lyrica commercial is on. You know, I REALLY hate that commercial. I just wish they'd get someone who really had Fibromyalgia for that commercial.  Anyway....................

I thought these symptoms would be fluctuating not taking up residence on a continual basis. The only thing that is on ebb and flow is the anger. Obviously, today is an anger day. Because some clown can't drive without looking down at a cell phone and then crashes into my car, I have to have my whole existence turned upside down. I know, I could be worse. I understand that but right now the fact that I'm paying for his negligence irritates the crap out of me. 

Forget it, I'm going to the bath and turn on a movie. 

A couple of hours of swirling water should take the edge off.


Am I being a hope freak?

Monday, January 10, 2011


I used to say, "if it's too loud you're too old."
I used to say a lot of things.

When my daughter and I went to Phantom of the Opera I noticed that the noise of the casino was really getting to me. Plus, I didn't like the crowds of people. They were talking loudly and then there was the inevitable coughing and sneezing.

Now, I'm a germaphobe.

Funnily enough, I can turn my ipod up and it doesn't bother me, but, put me in a room of loud people and the noise really bothers me. I know that noise sensitivity is a marker for Chronic Fatigue and Fibromyalgia. It's as if the brain goes on overload and the increase in pain almost causes widespread panic. I have to tell you, as much as I loved seeing Phantom, the volume in that room was another issue all together.

It's almost as if the volume settles in my spinal cord and works it's way up to the brain, all the while increasing in intensity. 

I noticed it as well in the gym today. It was noisier than usual. Fortunately, the walking path is on the perimeter so I'm away from it. As I got closer to the area with the treadmills it got louder and louder. This isn't anything new but today I noticed it more than ever.

Does the sensitivity to noise and light fluctuate in the same way that our symptoms do?

Studies have been done and the results showed that Fibromyalgia patients have an increased and exaggerated  response to noxious stimuli as compared to the control group. Another survey found that there could be an aggravation of the symptoms due to weather, noise, light and stress.

I'm used to a lot of stimuli. I used to study and read with the TV on or had music playing. Couple that with being interrupted with questions or comments. Hey, it was no big deal. Actually I found it difficult to have it real quiet. Now, all bets are off.

It sounds to me like we have a central nervous system issue involving sensory amplification and that amplification causes pain.

Does a magnesium deficiency cause the noise sensitivity or tinnitus? Would it help to take more magnesium?

I guess the only thing to do is to remove myself from the noise. 

Quiet is good.

I could be wrong.

Just sayin..........

Saturday, January 8, 2011


What the heck is going on?
I'm speechless.
For me, that's saying quite a bit.

What has happened to courtesy? Common or otherwise?  It's been an amazing couple of days for me and the whipped cream with the cherry on top is the shooting of Congresswoman Giffords in Tuscon, Arizona.

Let me go back a day or so.

I got an email from a friend of mine who is working to help get research on the XMRV retrovirus. He suffers from Chronic Fatigue and Fibromyalgia and has worked very hard to get funding for research. He happened to mention it on a forum and from that moment on his life has been a living hell. I have never read such vile attacks as those I read on a Chronic Fatigue forum by their members. What kind of people are these? As I wrote back to him, rabid attack dogs are kinder than those people. 

There is ABSOLUTELY no room in forums for people like this. Research is limited at best. Funding dollars haven't exactly been thrown at researchers for Chronic Fatigue/ME or Fibromyalgia. After reading what I read I wouldn't want to spend my dollars to help finding a cure for these people. It sounds like they'd still have a problem even if they didn't have this disease. I know I sound very, VERY harsh, but, I hate this kind of garbage. I hate injustice and their vile attacks on someone who is trying to do something good and to pay it forward is unwarranted.

Why can't people just say thank you?
Why can't we just agree to disagree?
Why can't we all just get along?
I sound like Rodney King.

I am on the more conservative side of the fence and I have many friends that tend to be on the more liberal side. Do we agree on every issue? No. Would I ever question their intentions? Absolutely not. 

I was raised to believe that I should treat people with kindness. Not everyone will respond in kind, however, that had no bearing on the way I should act or react, for that matter.  I was raised with class and dignity and will say right here and now that people that use this forum to say vile and hateful things are classless. 

There is a way to disagree with civility.

Things can get heated because issues that are near and dear to our hearts cause us to get quite passionate. That is understandable. To resort to rhetorical or physical violence is hard for me to fathom. What have we done as a society that caused us to bypass discipline when raising our children? What have we done as a society when accountability for our actions accuses us of being intolerant or not "politically correct?"

How do people justify their actions? What warped and twisted rationale is used to say that this is the appropriate way to voice their opinion?

I'm watching CNN and I'm appalled by the shooting of Congresswoman Giffords. Again, I will never understand actions like this. 

It's becoming acceptable to become verbally abusive and to write vile comments when we disagree. 

Physical violence has, sadly, become a part of our everyday lives. 

We only need to turn on the TV and be bombarded.

I pray for a society that doesn't know how to exercise control over our mouths or our actions.

Thursday, January 6, 2011


A beautiful love story.
The agony of living behind the mask.

My daughter and I love Phantom of the Opera. When the movie came out we spent endless hours watching it over and over and now, finally, we got to see it at the Venetian Hotel. It was very well done! I could watch that production over and over again! The Venetian built a room specifically for this and it was perfect. No expense was spared and it looked every inch the Opera Populaire.

Okay, I'm on Phantom overload!

When I got up this morning I had such high hopes for the day, however, those hopes quickly disappeared. By 10:00 I was in the bath with hot swirling water and I stayed there until noon. I was still walking hunched over like an old lady so I just got in bed and stayed there until 3:00. At three I crawled into the shower and managed to get ready just in time for my daughter to pick me up. She was arriving at 4:30 so I wanted to leave plenty of time because I was moving very, very slowly.

I also took pain medication.

There was no way that I would have disappointed my daughter or myself. We had so looked forward to this evening together. I just knew it was going to be rough.

What a fitting show. 
Who's really hiding behind the mask?

She asked how I was doing and I, of course, minimized the pain. I hate to hide but I also hate to see her in distress. Seeing me in pain hurts her as much as it hurts me.

We had a wonderful dinner and I decided the shoes were coming off. I walked through the casino holding my shoes. The doors opened at 6:30 and we found our seats and sat down. The chairs weren't real comfortable but at that point it wouldn't have mattered if it was a tempur-pedic chair. I was in pain and there wasn't a whole lot that I could do about it.

By the time I got home I knew tonight was going to be a bad night.  I've already been in the bath, more pain medication and muscle relaxers and it hasn't taken the edge off. I'm in bed with my heating pad watching Phantom again to distract myself but, so far, nothing is working.

Every bone in my body aches. 

Deep down bone-chilling pain and aches.

I wish I could go to sleep so I could be out of my misery for awhile.

Where's the baseball bat when you need it?

Sunday, January 2, 2011


Blue Rose.

I thought I'd be starting off the New Year in a better frame of mind and less pain. See, that's what happens when I think too much.

I don't know if it's the cold weather or the humidity but I'm just feeling like crapola. I'm either in bed or the bathtub. Now, I love my bath bombs but I'm going through them like there's no tomorrow. The only cool thing is that I found my portable DVD player that I got as a Christmas gift from KB Home years ago and now I can watch movies while I'm in the tub. Just add a diet coke (I know..I know....caffeine is bad) and I'm in heaven.

So what to do? Right now I'm in bitchy mode. I hate the fact that I have to take pain medication to function without pain getting the better of me. The kicker is that they only take the edge off the pain. I am really afraid to take enough to be completely out of pain. I honestly don't know how much it would take to do that. The way I feel, it would probably be enough to make me a zombie. I've upped the magnesium and calcium. Still taking the Vitamin D and B vitamins. I like the liquid because I think it gets into my system faster. Does it help?  Who knows..........

I'm taking so many supplements that food sounds icky too. Now, you would think I'd be real happy about that. Well, I would be happy about it if it would result in weight loss but zippo on that fact too. That's the other thing. I can't lose one fricking pound! I have a real bad attitude toward food. If I eat, I gain weight. Even if I eat 1200 calories a day and walk at the gym; I don't lose weight.

See? I told you I was in bitch mode.


Let's try and make something positive out of this post. 

What did I learn from 2010? 

I learned how to look backward in time with objectivity. I cannot change the past but I can examine it, learn why and how and, hopefully, learn how to let  go and move forward. I'm learning that the phrase, "that doesn't work for me," can help me say no gracefully and without guilt. I learned that it's very difficult for me to receive help from other people. I don't know how to receive  without feeling weak and helpless. Those emotions are very difficult for me to deal with. I've always been in control and this illness makes me feel so very out of control. 

I've learned that one simple act isn't actually simple. The domino effect from a simple car accident has caused my life to spiral out of control. I'm still dealing with the emotions of anger because of that. Because one person didn't look where they were going I've lost a great deal and I don't know when the bleeder from all of this will be tied off. I keep telling myself that it could have been worse, and I know it could have been physically worse, but for me it's cut me off at those proverbial knees. I did partially define myself by my career and I still struggle with the loss but I'm not sure how to re-define myself and I struggle with that too.

I've learned so much about chronic pain and illness. I've made so many friends through this process and I don't feel so cut off and isolated. The problem is that I still hate the telephone. It's difficult to hold and it's difficult for me to talk. Let me rephrase. It's not difficult to talk, it's difficult to answer. It's difficult to answer questions about how I feel or how I'm doing. It's that feeling of being out of control and feeling vulnerable. I know that's my weak point and I know those emotions aren't real comfortable for me.

So for 2011 I know that I need to work on releasing my anger about the accident and working on my control issues. I know that I'll be spending a lot of time in bed with the pain and I know that my daughter better by stock in Basin White so I can keep up my stock of bath bombs. 

I actually do some of my best thinking in the tub.

If that's the case I may never get out of the bath.

Prune city hear I come.