Sunday, August 30, 2015


I've learned a lot.
Taking it to heart?
Well.....not so fast.

Being in pain on a daily basis has taught me a lot. Not only has it taught me about my body but it's also taught me about my soul. 

So, what have I learned?

1. I've learned that chronic means forever. When I was first diagnosed I didn't know what it really meant. I knew there would be bad days but I actually thought I'd also have pain free days. What I've learned is that Fibromyalgia doesn't change. It's there with you in varying degrees of severity on a daily basis. Wishing it away doesn't work.

2. I've learned that trying to fix all of this sometimes doesn't work. I've jumped on every bandwagon out there. I'm not saying that a good diet doesn't help and I'm not putting down alternative medicine. I think there is a place for all of it. I, personally, just don't think that there is "the miracle cure for only $29.95" out there. I don't think all of this is a conspiracy of "big pharma." Having said that, I think the medications that have been approved for Fibromyalgia don't work for a lot of patients and, personally, I think the risks outweigh the benefits.

3. I've learned that we need to take responsibility for our actions. I can't reinvent the wheel. I was born with my Type A squared personality. I loved the stress of the job and the more on my plate the better I liked it. Your body was not meant to live in the "flight or fight" survival mode on a continual basis. You will burn out. I've come to realize that my excuses for not coming down off of hyperdrive were just that: excuses. We need to decompress not only for our mental well being but for our physical well being. Now, for the caveat. Just because we loved the lifestyle does not mean we did this to ourselves and if we just calm down it will go away. There is a switch that has been tripped and, hopefully, that is what researchers will try to figure out. Me? If I do anything I do it all the way. I work hard, play hard and rest hard. I also got sick hard. I guess I've been perfect at that as well. I wake up everyday thinking that I'll set these realistic boundaries for myself and once again I find a way to count everyone of my imperfections. I find a way to include just one more task, one more email or one more activity that I know will hurt me tomorrow. 

4. I've learned that I can't be in denial. It doesn't work. Trust me, I've been down that road too. If I just forget about it and push through it will be ok. Your body has a wonderful way to pay you back. I do it all the time because I don't listen to my own advice. I feel pretty good? Back to mach 2 until my body reaches up and slaps me as if to say, "you were acting stupid and I stopped you for your own good." Gee, I sound like my mother. 

5. I've learned to forgive myself. I know that we hear from articles and people all the time that we are the result of trauma and abuse or our own unresolved hurts and issues. Maybe it's true and maybe it isn't. I do know that I didn't hurt like this until I had a car rear-end mine in 2008 going about 35. Maybe I need to forgive him because NONE of this started until that moment. Then again, maybe that was just the trigger. I don't know. Here's what I think about forgiveness. I think asking forgiveness for those issues can be healing if you have had trauma or abuse and need to move forward from that. Forgiveness doesn't give carte blache for the act but what it does is tell the ones who have hurt us that they no longer hold any power. I think on another level we need to forgive our body for betraying us and changing our lives. I'm a natural cynic who has unyielding faith. Weird, isn't it?  I have an absolute faith in the tenet that God has never left me or forsaken me, no matter what my personal circumstance. Whatever I'm going through right now will take me to a different level; not only in my life but my faith. I've never faulted God for my personal circumstance. On the other hand, if I hear "suffering builds character" one more time I may scream.

6. I haven't learned that it helps to keep our minds positive. This one is the hardest for me. I am not Mary Sunshine. I tend to see the glass half empty and as far as human nature goes, well, I've never been disappointed. I like phrases like, "when you see the light at the end of the tunnel it's probably the train coming at you full speed."  So how do you do this? I don't think I'm a pessimist....I'm more of a realist. I have really tried to be optimistic but if any of you have some ideas I'd love to hear them. I want to be better at this, I really do. I only put this in here because I haven't learned this lesson yet.

7. I've learned that we need to trust our own judgment. There are all sorts of groups on social media out there. If you don't follow a gluten free diet you're going to be in pain. If you don't follow use alternative medicine you won't get well. If you go to a regular doctor you're an idiot. I've seen people used medical terminology and they have NO CLUE what it truly means. It does take awhile to find a doctor that will understand and listen. I'm not saying they are infallible but to trust social media isn't the way to go. We need to listen to our bodies, ourselves and our doctors.

8. I've learned that I need to let go. Life has a funny way of showing you another destiny than the one you carved out for yourself. What I did and had before is different now. I can't hold on to the past as desperately as I want to. It isn't good and I might miss opportunities that show up because of chronic pain. What does it take to reach a point of acceptance? Sometimes I think acceptance and resignation is the same as defeat. There we go again. Anything less than perfection is failure. In my head I know that I'm an imperfect being but the bar that I've set for myself is a different issue altogether.

9. I've learned that it's not a bad thing to be a little vulnerable. This one is hard for me as well. I've always equated vulnerable with weak when, actually, it's quite the opposite. It takes a great deal of strength to admit weakness. I've found out that sometimes I'm not as strong as I think I am. I've also learned that everyone else has weakness as well. We always think the other person has it all together. That's not necessarily true. I think it's more than that, though. I still say it makes me imperfect and weak. It makes me realize that I'm not as strong as I think I am and I can't take care of myself all the time. It's self-reliance and I may not be in total control of my destiny. I hate that.

10. I've learned that I don't have control. This one is a constant struggle. I've always liked to control the environment around me. That's a huge part of my personality. I've always felt that if I can control things then I won't get any nasty surprises. Well, I didn't say that it worked I just said I liked to operate that way! I've had to accept that I won't know what I'm dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I've had to let go and that isn't easy for me.  So many things haven't been easy and I've had a hard time dealing with that. I know it's something I have to learn to accept but it's that darn little word called control. I don't have it and it makes me crazy.

So here's the top ten lessons for the day.

What I've learned.

What I'm still learning.

And what I should give up.

As far as that last one?

I'm not big on giving up things!

Monday, August 24, 2015


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

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?? 


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


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 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............


I think we should settle here.

Thank goodness I wasn't around then.

They would have shot me.