WHAT NOT TO SAY

People should know that we aren't faking it. 

This isn't a disease that an aspirin and a nap will fix.

So in the interest of those with Fibromyalgia and/or Chronic Fatigue, I offer these suggestions.

Please do not say:


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.


3. Everybody gets tired.
Yes, everyone does get tired. Again, thanks for reminding me that you and a lot of the medical community thinks we're crazy. Just for a point of information when we rest, we don't wake up refreshed.


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.


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.


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?


9. Oh come on, just get tough.
If you only knew how tough we really are to function and deal with this illness.


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


10. It's all in your head.
People have had enough of the medical community making us think we're crazy. We have to go from doctor to doctor until someone believes us when we say we're sick. We've put up with so many people thinking we're either whiners or neurotics  please don't add insult to injury.


Thanks for listening.

I JUST HAVE TO GET REALITY OFF MY CHEST

I love American Idol. 

I started watching it as one of my "can't miss" tv shows  in season 7 when I saw David Cook sing Hello by Lionel Richie. I had watched it a little bit before but usually right at the end to see who won. 

Then we got to Season 8. I liked Kris Allen. I thought he was great but the showman was Adam Lambert. What a talent!

Now here we are. Paula's gone and Simon's leaving. I know that TV moves on but American Idol was not just about the talent. I enjoyed seeing Paula get goofy and I respect Simon's sometimes harsh words.

So tonight "the girls" found some good in almost everyone, Randy Jackson was almost non-existent and Simon was subdued. 

I hope it get's better.

Too bad..........it used to work.


Now let's go to The Bachelor.

Jake.


I'll admit he's hot and he seems like a really nice guy. 


But who are these women?

I mean, who cries after the first date? Who is delusional enough to talk about MARRIAGE and CHILDREN before they've even met the guy? I don't understand that at all. They act like they are emotionally scarred from this experience. Very weird.


Then there are the REALLY spooky ones that look like they're one step away from a padded cell. If they're losing it before the season really gets underway what's going to happen when the cat fight really starts?


Well, let the games begin. It should be a real interesting season for reality TV.


I just want to see Pawn Stars. 

I want to see Million Dollar Listing.

I want to see Tabatha's Salon Makeover.

Geez,  I need a life.

MORE TYPE A

We're driven.


We're work-obsessed.


We're competitive.


Yeah? So what. It's going to wreak havoc on our bodies.

I am a time freak. I can break down the time I need to the minute to put on makeup and I have a real sense of how quickly it can pass.

I have high standards for myself and am extremely self-critical when I fail to reach the impossible. 

I don't show emotions because they can be interpreted as a sign of weakness and I hate to appear weak. The only people that see the "real" me are my closest family and friends.

It isn't that work is more important than relationships but one must be very responsible and sometimes that responsibility takes more hours than a normal workday.

It's not that I love money but it does represent security. Why I can't seem to save any must be an aberration of my personality type.

I am decisive in my work decisions but not so much in my personal life. 

I'm self-motivated.

I don't like unfairness and injustice in the workplace. It tends to make me come unglued. Unfortunately when that happens my mouth goes into hyperdrive and I don't care if it's the CEO I will tell them they're wrong.

I don't like sing-songy little people that go with the flow and wouldn't know stress if it jumped up and bit them. They are the people that drive too slow, take too long at the bank and wait until their groceries are totally rung up and then forget they have to pay. They take their time about EVERYTHING and just to get a full sentence out of their mouth makes you want to slap them silly.

Did I just give myself away?

Am I type A?

I've been told that more than once. 

More than once.

THE BRAIN, STRESS AND TYPE A...........OH MY!

Evidently, scientists are finding out that exposure to chronic stress affects, and can damage,  the hippocampus region of the brain. The researchers are also exploring the role of the hippocampus in regards to pain perception in people that have Fibromyalgia.

Flight or fight.

When your body perceives a threat the nervous system responds by sending hormones into the body.  These hormones put your body on alert. Muscles tighten, the heart beats faster, all your senses become sharper, blood pressure rises and you breathe a little faster. It is your bodies way of protecting you. It can help you rise to challenges and can keep you alert. It puts you in survival mode. 

Chronic stress is different from the "flight or fight" syndrome that the body produces when it experiences acute stress. Chronic stress can change the way the body functions because the body feels like it is constantly under stress. Stress hormones are released into the body at an unprecedented rate. For example, the heart is more susceptible to disease when an excessive amount of cortisol and adrenaline are released into the body. Brain function is also thought to be compromised and learning and memory can be affected. The immune system suffering under an onslaught of these hormones is suppressed. It's overworked and then does not respond well. You are at risk to fight off diseases and when you do get sick it's harder to recover from illness.

What happens when the body is under stress?

Cortisol is produced in the adrenal cortex is the adrenal gland. It regulates blood pressure. It regulates glucose metabolism, immune function and inflammatory response. In small amounts it can heighten memory functions, lower your sensitivity to pain, helps maintain homeostasis (internal equilibrium)  in the body and can give you a quick burst of energy. To turn it off, however, the body must switch on the relaxation response. If you don't switch it off, i.e. relax, the body doesn't have an opportunity to return to normal.

When the stress that you're under is greater than your body is able to tolerate, you are at risk of a stress related disorder.

The body doesn't differentiate between physical or emotional stress. Stress is stress. When you keep yourself in stress mode the body has a harder time shutting off the switch. When you think you thrive on stress and get the high from the stress that ultra Type A personality puts itself under; think again. 

If long term stress can rewire the brain, I must be severely rewired. Stress can creep up on you and before you know it our old friend stress feels warm and fuzzy. It feels normal and very familiar. You get used to it. It's sneaky. The price you pay for that familiar, over-achieving, perfectionistic feeling is a heavy toll on your body. 

What kind of toll?

The negative effects can impair your memory, lower the function of your thyroid, give you blood sugar issues, decrease in bone density and muscle tissue. It disables your immune system so you can possibly have a big bulls-eye on your back for germs in the environment. 

You don't sleep right, you don't eat right, you don't relax right and you think you're cruising through life: until................

The Domino Trips

Insomnia, anxiety, depression, illnesses, circulation problems, heart problems and sometimes autoimmune illness or worse.

Each of these illness has its own problems and when put all together you're on a merry-go-round that is real difficult to get off. Make no mistake. Stress can kill.

Put this together will a central nervous system dysfunction that researchers are finding in Fibromyalgia patients and you have a recipe for disaster.

I always loved high stress positions.

I loved being a Type A to the max. 

I thought I was invincible.

I was wrong.

Fibro Pain linked to Central Nervous System Dysfunction

NOW WHAT?

If there is one event that proves I'm not the same as I was, this is it. 

I was let go due to the fact that I could not achieve sales goals of 2-3 homes a month in a community in North Las Vegas. It didn't seem to matter that the traffic through the door was, on average, 2 people a week.  All I was asked is, "what are YOU doing to bring more traffic in the door?" 

If I sound angry, I am. This has not been an optimum position. There has been game playing and they effectively prevented me from earning a living. I had to have friends call and ask for me to see where the leads were going; and, trust me, they weren't coming to me.

So now I have to find something else. 

Back to my original premise. This would have NEVER happened before. Pain takes an unbelievable toll on your body, your personality and your stamina. I've said it before, how do you build a relationship with people that come through the door when everything in you really doesn't care what they do. All you want is for the pain to stop. 

This isn't the business to play around with personality issues. Your personality is what makes you money in this business. When something tinkers with that you lose money and now I'm not only losing money, I'm losing jobs. I don't have the stamina to deal with everything I have to deal with in this position. To top it all off, I have some clown in insurance telling me that I have the luxury of scheduling my appointments to accommodate my infirmity.

What a crock.

I'm still in pain only now I don't have an income.

Great.

Just great.

THE INVISIBILITY CLOAK

Pain  makes me want to be invisible.


I've gotten pretty good at it too.

My invisibility takes many forms. It can be the cloak that I hide behind so that only certain people can see the real me. It can also be the cloak that not only hides but protects me from hurt and pain. I can envelope myself in my cloak and it feels comfortable. Sometimes I concentrate so much on invisibility that I forget how much help I can be to even just one person. 

The Loretto Chapel in Santa Fe, New Mexico. It's said that the sisters prayed a novena to St. Joseph (the patron saint of carpenters)  for a carpenter to come to them to build a staircase. On the final day of prayers a man arrived looking for work on a donkey with some tools. Months later the man disappeared without thanks and without payment for his work.

This isn't just a staircase. It's a staircase without any visible means of support.

Did I mention that the staircase was also built without nails? It also  has two 360 degree turns.

In this life where fame is worth more than character a man built a staircase, a beautiful work of art, with no thought to himself. He left without telling the sisters his name so that he could be remembered so that all future generations would bear witness to his labor of love. He built his magnum opus not for what the world could see, but what God could see. He's invisible but what he left behind isn't invisible.

Maybe that's where we need to focus. What the world can see is temporal but what is inside, however scarred, is God's work of art. Pain makes us think inward when we should be thinking outward.

I've always said things could be a lot worse. Chronic pain is just that. It hurts to move, it hurts to think, it hurts to get out of bed, it hurts to sit down, it hurts to stand up, it hurts to type, it hurts to hold hands, it hurts to get hugged, it hurts to walk, it hurts to run, it hurts, it hurts, it hurts. However much it hurts it doesn't hurt nearly as bad as the person who is learning to take his first step again after a stroke or an accident. It doesn't hurt nearly as bad as a parent  who has lost a child and must take the painful steps to a grave site. It doesn't hurt nearly as bad as people that are so riddled with cancer that pain medication no longer helps and they pray for God to take them home.

So when I move toward my special form of invisibility, I will try to remember that it isn't as bad as it could be. When I start toward the reinvention of myself I will remember that it isn't what the world can see but what God is perfecting within me. We may not be able to see what He's done in this lifetime but we all have a legacy that will remain long after we're gone.

WHY NOT EMBEDA?

What to do about pain?

Is it because doctors are afraid of abuse that they allow people to remain in pain? If that is the case why not prescribe something that has a fail-safe method? 

Embeda,  FDA approved, is an extended relief pain killer that could be used for people with Fibromyalgia pain. Embeda (morphine sulfate and naltrexone hydrochloride) is designed to discourage abuse if the medication is chewed up, dissolved or crushed which is what happens when the medication is used to get high.

Inside the Embeda is a small capsule of naltrexone which breaks open and destroys the high if the pill is used recreationally as described above. When the pill is swallowed the naltrexone passes through the body and a small amount is absorbed.

That part is exceptionally interesting due to the fact that Fibromyalgia patients have found relief using small amounts of naltrexone. This drug has not been tested for Fibromyalgia patients but it sounds logical that if doctors are afraid of abuse this drug would limit a fair amount of it.

I'm adding a link to the article.


Embeda extended release for chronic pain