Monday, August 24, 2015

UNDERMINED AND DEFINED









It's who I am.
What I did.
What I got.
How I deal.
Huh???



I know that I shouldn't be defined by an illness or a circumstance but I'm still struggling with that concept. I am definitely not the same as I was seven years ago.  Pain doesn't turn off and leave you alone at designated times. It's much more devious than that. I was not a stranger to pain but it would only show up once or twice a year if I pulled out my back. After a car accident in 2008 I became intimately involved with my new friend, "PAIN" and it is a relationship that has stayed with me and will probably always stay with me until I leave this earth. 

I struggle with the concept of Fibromyalgia. Sometimes there is nothing more that I'd like to do and put the covers over my head and give in. I'd throw myself the biggest pity party ever seen. Then I come back to my senses and shove it in the background and push past the pain. 

But that usually doesn't end up well either.
But that's another thing that I do.
I push and I pay.
But I hate being fearful of my body and I hate being betrayed by my body.

Well, lets get back to pain. Pain is truly a four letter word and I don't mean that in just the literal sense (although it's that too). It permeates your being and consumes your daily life. Just when you think you've gotten used to one level it spikes and hits you with something else or it will just jab you so you know that it will not go away gracefully. Pain sucks. I don't care whether it's physical, emotional or spiritual pain. Pain of any kind robs you of your life. It robs you of true joy. It's a nasty little reminder that your happiness can be taken away in one fell swoop. You have a good day and start to relax?? 

Wrong.


I struggle with the loss of brain cells and I struggle when I read the back of a cereal box and find that challenges my intellect. I used to pride myself on my memory.....not anymore.

I struggle with the fact that I won't be selling new homes again. I loved selling new homes. There was nothing quite like being, what I called, the mayor of my own little city. I've lost the ability to function in the workplace. The medications are a liability as well. I know I say I want my life back all the time because I'm struggling with it. I do want my life back and it's not something that can happen just because I wish it. I still haven't fully accepted what I am after this car accident. The pain, the Fibromyalgia; you spend your days feeling like you got hit with a baseball bat and see how perky you are. 

I'm not dealing with this well, am I? 
It's the notion that life isn't always fair. 
I've always hated injustice and applying it to myself isn't easy. 

So, how do you deal with an invisible disease that wants to rob you of your life? 
You take one day at a time.

I try to remember that it could always be worse. I'm not saying that's an easy thing to do when pain has wrapped itself around you and refuses to respond to any medication or modification. At the worst times I have to concentrate on something better because it has the power to feel endless. I find that blogging has saved me. Writing down my feelings about this wretched thing called Fibromyalgia helps me get rid of the negative feelings. I've also learned that isolation is probably the worst thing we can do to ourselves. 

I know that we have to become more tolerant.

Of our bodies and ourselves.

I know we don't like it but we must admit our weakness.

Only then can we begin to become strong.





Saturday, August 22, 2015

THE NATIONAL PAIN REPORT










You never know.
I mean that.
You really just never know.


Several months ago I was approached by Laura Colontrelle-Radocaj of Dian Griesel, Int'l. She asked me if I'd be interested in speaking with Dr. Seth Lederman of Tonix Pharmaceuticals. I knew the clinical trials were going on so I looked forward to speaking with him. As the time approached for the call I wrote out all of my questions so I wouldn't look like a moron.

So what happened?
I missed the call.

After we got the time zones in line I went on to speak with Dr. Lederman and it was a wonderful call. We spoke about 45 minutes.

A few months later I got an email from Laura and she had someone who wanted to write about Fibromyalgia from the perspective of a 40ish year old. I laughed at that one because I haven't seen 40 in 20(ish) years. She said she would keep me in mind if another opportunity arose.

Well, it did.

She put me in touch with the Editor in Chief of the National Pain Report. His name is Ed Coghlan and we spoke on the phone about the report expanding the Fibromyalgia section and would I be interested in writing from a patient perspective. 

Oh yes I would!
It's a fabulous opportunity to be on the ground floor of this expansion. 

The National Pain Report looks at all aspects of pain and has Doctors, journalists and patients all writing about pain and how it affects their lives. It looks at how pain is treated and diagnosed and alternative therapies that can be used for relief. 

I hope that you will all go to the site and support it. 

It really is informative.

And it is true.

What you don't know can hurt you.





Friday, August 7, 2015

I NEED TO BE IN ALASKA









I know.
I did say it was a dry heat.
Who cares?
It's still hot.


It must be summer because all the articles about heat intolerance have been popping up. I know there are both ends of the spectrum but I'd much rather have cold intolerance because you can always put on gloves, sweaters and jackets. You can only take off so much and then you're still hot. It never goes away.

I live with someone who doesn't get hot when the thermostat is at 80. It's not easy to live with. It's a never ending battle just turning it down to about 76. I know that the a/c bills in the summer are high but, on the other hand, I don't use much heat in the winter so it balances itself out.

You'd think.

I have to sleep with covers. I need the weight of them to feel comfortable enough to sleep. I also have a portable evaporative cooler that I put ice in every night so I have cold air also coming into the room and blowing on my face. If the thermostat is ONE DEGREE over 76 it's so hot that I can't sleep. I'm just one of those people that cannot take the heat.

Yeah, I live in Vegas.
Ironic, isn't it?
Go figure.

It has been a couple of months where the temperature index ranges somewhere between OMG and WTF. Yes, it has been that hot. I wanted a fountain diet coke and the thermometer in the car read 119. People with Fibromyalgia have an intolerance to either heat or cold. Mine just happens to be heat and I live in the middle of the desert.

I will NEVER understand it.

Who the hell came to the desert 100 years ago....(I'm actually glad they did)

Looked around.........

In the middle of nowhere...........

Hotter than hell............

And said............

Yessiree...................

I think we should settle here.

Thank goodness I wasn't around then.

They would have shot me.






Thursday, July 30, 2015

IT'S 5 O'CLOCK SOMEWHERE UPDATE









So..........
moderate drinking eases Fibromyalgia.
Gee, ya think???
They needed a study for this??


I published this post a couple of years ago but another study has surfaced and maybe it's time for me to dust this one off again. I guess it's been shown that people that drink have less trouble with the symptoms of Fibromyalgia and a better quality of life. Now, I'm not Einstein but I don't think you have to be a Mensa candidate to figure this one out.

Moderate drinking is categorized as more than three but less than seven drinks a week. Okay, so if I knock down a few after dinner I guess I'll be able to handle the pain in a more ladylike fashion. Here's the trouble......

I have NO tolerance for alcohol.

This started after I had my daughter. In college my girlfriend and I used to win shot contests and still be standing straight. Something happened to my body after I had Danielle. I get buzzed really, really fast.

Buzzed?
I've been known to drunk dial after one.

It doesn't help that I really don't like the taste of liquor. I have to hide it in fru-fru drinks like Mudslides or Pina Coladas or, if I was back in the old college days, Everclear 151 and fruit punch. If I can't taste it and the rest of the drink tastes good I'm in trouble. I forget the stuff is in there.

So, back to the study.
Who wastes time with this??

Of course, if you're half lit you're going to be able to tolerate the pain that bombards our bodies. It's interesting that some of the patients reported that they also cannot tolerate alcohol so that is why they abstain. Also, there are medications that absolutely should NOT be taken while drinking. 

If you're in a lot of pain and take opioids, you should DEFINITELY NOT resort to moderate drinking to relieve symptoms. People with Fibromyalgia have low GABA levels (gamma-aminobutyric acid). GABA slows down the activity of the nerve cells in the brain. Alcohol increases the action of the GABA receptor. This may be a reason that the pain volume is turned way up in people with Fibromyalgia. Low GABA, high pain, huh?

Like I said.....if you're half lit......who cares??

Of the 2200 people (and over 57% of them were women) who participated in the study it was founds that they had lower BMI (I guess if you drink you don't eat) lower unemployment and higher education. (You can tell that from a margarita?) At least the U.S. researchers said it was the wrong approach to take for dealing with pain.

They urged people not to start drinking to relieve pain.

They couldn't figure out why the alcohol helped with the pain.

They actually studied this???

I have to stop writing....

my margarita is waiting for me.

After one of them I won't even be able to spell margarita.

They call this "an alternative experience."

I'm still shaking my head.......


Here's the link......you've got to read it.  Study on Drinking






Tuesday, July 28, 2015

I CAN'T BELIEVE YOU JUST SAID THAT!










In these times of not wanting to offend.
In these times of political correctness.
I thought I'd add a few things
that you shouldn't say to chronic patients.



1. You don't look sick.
No, I don't look sick. If I looked like I felt I'd scare dogs and little children but thanks for telling me that I should look sick if I want to be taken seriously.

2. You should exercise more - you'd feel better.
I guess it would be o.k. if I fell asleep on the treadmill. I especially like it the next day when I can't move any part of my body due to the pain of the glorious exercise I did the day before. I understand that you have to move but you can't overdo it.

3. Everybody gets tired.
Yes, everyone does get tired but not to the point where you fall asleep after being awake for an hour.

4. You just need to have a better attitude.
Gee, I thought I did have a good attitude. If my attitude reflected the pain it might kill you.

5. It can't be that bad.
In the same vein no, it can't be that bad. I'll just take a baseball bat and beat the crap out of you and see how you feel the next day. Live like that for years and then tell me it can't be that bad.

6. I wish I had time to take a nap too.
Yep, I'm just a whining little princess who naps and eats bon-bon's all day and pretends to be sick. Hmmmm.....great idea!!!

7. If you'd just get out more.
I love being locked in my ivory tower. I definitely should get out more. That makes me feel SO much better now. So, what happens? I get out and it takes me a few days to recover.

8. You're just depressed.
Well, what tipped you off to that one? If you live with chronic pain and fatigue don't you think you might get a tad depressed? It's not where I want to live, trust me.

9. Oh come on, just get tough.
If you only knew how tough we really are to function and deal with this illness. Fibromyalgia isn't for sissies.

and my favorite...................

10. It's all in your head.
You're absolutely right. It is all in our heads. It's called a problem with the central nervous system.

Thanks for listening and feel free to add more in the comments!!