Sunday, May 24, 2015

GIVING UP CONTROL...HM....NOT SO FAST







Are we so in control that we're out of control?
What are we really dealing with here?
Control and Perfection.
And I can't have either.


I have control issues. I fully admit it, revel in it and have even tried to fix it. I think I came out of the birth canal with control issues.

Let's actually start there.

I weighed 2 lbs. when I was born. Back in 1952 my survival rate wasn't real high. Given my birth weight I was probably about 29 weeks when I was born. I was in a incubator for 3 months and only allowed to go home when I reached five pounds. Knowing what I do about premature babies there were all sorts of health issues that I could have had but didn't. I must have started fighting at birth.

One of the earliest memories I have is falling face first into a glass bowl filled with potato chips when I was four. All around me was chaos. No one knew if the glass was in my eyes and blood was streaming down my face. Someone had gone to get the doctor that lived across the street but I wanted "to see me bleed." The doctor came over and stitched me up right on the table. He threatened that if I moved I was going to the hospital. Evidently, I didn't move a muscle. My brother told me the only one who was in control that night was me.

Control morphed into perfection issues and organization issues. I would alphabetize my records and subsequently videos and then DVD's. I created my own Dewey Decimal system for my books. Even the spices in my spice cabinet were in alphabetical order. When I got into new home sales I would be like a whirlwind creating the perfect organizational system for my office.

Where did this get me?
Nowhere.

I have been rocked to the core when I found out about chronic illness. Suddenly, after a car accident that I couldn't control, I found out that my body was not under my control anymore either. I always know that it could be a lot worse. The pain that I feel on a daily basis is nowhere near the pain of cancer and the subsequent therapy that goes with it. It's nothing like the emotional pain that people deal with when they experience the trauma of great loss. This is more like a constant, nagging pain that reaches up to slap you in the face every time you get a moment of life that is pain free. This pain never wants you to forget that it's still around and will take every opportunity that it can to steal your joy. 

I think from the moment I opened my eyes for the first time I was engaged in battle. It was a control issue for my life and to this day I think control means survival. To let go of the control means I am at the mercy of God and I don't think I've ever done that. I don't mean that you let caution go to the wind and figure everything will be fine. I cannot see myself as Pollyanna; I mean, it's just not me. I'm definitely not made that way, however, I have to learn to see the bigger picture.

Life experiences bring all those traits we were born with to the forefront. The loss of control makes me feel imperfect and weak but isn't that what humanity is really all about? We are really perfect in our imperfection. This constant quest for perfection ultimately ends in never finding it. Even if we think we have it will never be quite good enough. I think part of letting up, even a little bit, is becoming flexible. Did I say I trouble with that as well? 

Usually people who tell you change is good are the very same people who came up with the whole idea to change something that worked perfectly.  I have never been big on it because it always meant something icky was going to happen. Life is filled with things that are out of our control. I've lived that and you'd think I would have learned that lesson by now. 

I didn't. 

So what did I do?

I freaked.

Then I attended my pity party for one.

I denied it.

I got mad at it.

But I still haven't accepted it. 

(i'm working on it.)

(Kinda)








Tuesday, May 12, 2015

INVISIBILITY ISN'T A SUPERPOWER













Chronic pain.
It makes you invisible.
It's Fibromyalgia Awareness Day


Sometimes it isn't wise to be strong. Sometimes we shouldn't pretend that we feel "fine." Sometimes the smile shouldn't reach our eyes. Sometimes we should just let it all out.

I know it goes against everything that we used to be. Everything in us tells us that we need to mask the pain. We are better than that and it cannot win. We have too much to do to be sick.  We were movers and shakers. We were the typical Type A that plans all, thinks all, and believes that we can do all things and leap tall buildings in a single bound. 

We were Superwoman or men.

Limitations. This is a word that we don't like. Maybe because deep down we think we shouldn't have them. We actually feel bad that we have to describe a shopping cart full of symptoms to anyone, whether it be doctors, friends or family. Limitations should not be synonymous with weakness. I'll admit that I have trouble making that distinction. I forget that the words determination, perseverance and an incredible pain tolerance also come into view. 

I think I help perpetuate the viewpoint that this is an invisible illness. Because I consider some of my limitations as weakness, I have a problem letting people see the pain that I live with on a daily basis. I want people to see me the way I used to be. I know that's not right but I also hate appearing weak. When I do have a good day, I like to make the most of it. I break the cardinal rule of chronic illness all the time.

If you push you will pay.

I've always felt I could control my body. Well, not only my body. I love control. Whether it be my body or the environment around me....control is me. That is a huge part of my personality and that has been the hardest part to relinquish. I've had to realize that I can control my body about as much as I can control the weather. 

Speaking of...........I hate humidity.

But I digress. I hate the invisibility of this illness but I also wrap it around myself like a cloak. I'm not defined by this illness but the struggles of it all are tough. Just when I think I've moved into the stage of acceptance I find that I still struggle. I struggle with the fact that there will be days when the pain takes over. I struggle with the fact that technically I am disabled (whew, that was tough to write). I still struggle with the fact that my memory is not what it used to be (it isn't even close). I struggle with the muscle spasms that hit me mostly at night. I struggle with the feeling that I'm a slug.

Mostly, I struggle with being afraid of my own body.

Maybe it's time to take stock of those big girl panties.

Maybe it's not time to put them on.

Maybe it's time to take them off.






Saturday, May 2, 2015

CHRONIC CASUALTIES








Why?
Societal pressure?
Weakness?


Sometimes we are our own worst enemy. Every day we have to fight a war. War against pain, war against fatigue, war against an invisible illness that most don't understand, war against indifferent doctors and war against pharmacies just trying to fill our prescriptions.

Why then do we turn the war on ourselves?

I've been to support meetings and read blogs and hear people talk about medication. Some even seem proud that they don't and haven't given in to prescription medication. That's good if it works for them but to make anyone else feel less than human for taking them is wrong. Using medication that you might become physically dependent upon isn't a sign of weakness. That is an unfortunate side effect of maybe feeling normal and productive. I know I am intensely aware of the fact that I am dependent upon them. 

Dependent not addicted.
We, however, err on the side of the addict.

Maybe we're trained to believe that it's greedy and selfish to want something for ourselves. All I know is every time I swallow a pill I feel weak. 

And that, my friends, is stupid.

If we are responsible and knowledgeable about the power of the pills, if we "follow the rules" then there shouldn't be any self-loathing about using narcotics or pills that help us get the restorative sleep we need or take away intense pain. When did it become the norm that suffering is noble? 

It isn't.

We can do so much more when pain isn't creating havoc in our bodies. If we can sleep then maybe, just maybe, we won't be as stiff and sore in the morning. If that happens maybe, just maybe, we can get the exercise that we need. Don't people get it? It's a vicious cycle. We need exercise but it just hurts too much to start. There are days that I'm at the gym with tears running down my face. 

I think we need to like ourselves a little bit more and not look at medication as weakness. There are a lot of therapies out there and every one of us need to tweak them for our own use.  I don't think we should feel bad if we use medication to feel better. Having said that, there is a fine line between believing the pill will keep us out of pain and knowing that it will never eradicate the pain. The difference between a tool and a crutch is huge.

We fight a war every single day.

And sometimes it feels like we should give up.

We can't.

And we shouldn't be one of the civilian casualties.



Friday, April 24, 2015

SEROTONIN SYNDROME: THE POISON APPLE












Things are not always as they seem.
The first appearance can deceive many.

A friend of mine disappeared from view for awhile. I was concerned but I understood. Chronic pain makes it very easy to hide. You want to curl up and pull the mantle of pain very close to you; like an old comfy sweater pulled tight. Sometimes it's such an effort to interact. It pulls the plug on whatever energy you have left. Plus, when pain is a constant, it's easier to be alone.

We have a hard time putting this on anyone else. Geez, we don't even like ourselves at this point.

On top of the issues with chronic pain she brought to light a little issue called serotonin poisoning. I'd never heard about it and started researching it. All I can say is, "oh my goodness!" I can't believe what I found and the more I read, the more scared I became.

What scares me the most is that it could happen to any of us.

First of all serotonin is a neurotransmitter that helps regulate many of the functions of the body. Research is showing that people with Fibromyalgia may have low levels of serotonin. Low levels of this neurotransmitter could include: fatigue, sleep problems, headaches, irritability, depression, mood issues, muscle cramps, emotional or behavioral outbursts and bowel and bladder problems. Some illnesses improve when you raise the serotonin levels. Then there is the other end of the spectrum: high levels, and it isn't good.  In fact, it can be fatal.


Part of the problem is that there are pills for everything and we get a lot of them prescribed to us. Compound that with over the counter medications and alternative medicine supplements. There are the antidepressants, the opiates, stimulants, herbs and even something as simple as cough medicine containing dextromethorphan. 

Serotonin poisoning or Serotonin Syndrome can occur in patients that have taken a combination of medications that increase these levels. We tend to forget that supplements can interact with our medications. We take supplements and herbal solutions and don't think twice about it. I know I'll try just about anything to feel better. We need to tell the pharmacist exactly what we're taking and make sure there aren't any problems. There is a website as well where you can list our medications and it will tell you of potential risks. It's called Medscape. Just click on the word "Medscape" and it will link you to the site.

Symptoms of serotonin poisoning are increased heart rate, shivering, sweating, dilated pupils, myoclonus (muscle tremors or twitching), high blood pressure, fever and this can progress to high fever above 106, seizures, renal failure, coma and, in rare cases, death.

If you're on antidepressants, please......please......please be careful and monitor all your medications carefully.

Watch everything. For example, a combination of antidepressant medication, an opioid for pain, taking a stimulant like phentermine and then going to Whole Foods and picking up some Yohimbe or St. Johns Wort can put you at risk for something like this. The problem can come alone in high doses or like the example of taking a combination of medications.

Just be careful.

We have enough issues that we have to deal with.

We don't need any more of them.

All these medications may seem like a pretty apple that will give us what we desire,

but it can be a carefully crafted, dangerous illusion.




Thursday, April 23, 2015

LYRICA: ONE AND DONE









It doesn't matter.
Every time I watch it.
Every single time.
I get really ticked off.


What am I talking about? I am talking about the truly amazing Lyrica commercial that's on TV. I can be in another room and hear, "I used to be active," in the pseudo-pain-filled voice designed to elicit a poor-pitiful-me response and I can feel my blood pressure start to rise.




Lyrica is Pfizer's number one selling drug and generates approximately 5.2 billion dollars in revenue for the company. I really don't understand how it got approved for Fibromyalgia. The side effects are frightening. I don't want to tell people not to take Lyrica. Some people have been helped and experience very mild side effects. I don't want to tick people off so maybe I should stick to the commercial. I would, however, like to see the women accurately portray the pain. Maybe one of the actors should look like something the cat dragged in. 

One of my favorites is the female architect. She's in full makeup and smiling. She puts on her hard hat, gathers her plans and sails out the door. Now, I used to work in new homes and would have to go on-site in homes that were anywhere from framed to complete. Sorry, but Lyrica just wouldn't cut it.

And I wouldn't be smiling.
Snarling is more like it.

Anyway, I noticed that the women, with the exception of the architect, on the commercial aren't thin. Does that mean that they've already experienced the weight gain from Lyrica or are they just starting out? Then, the commercial seems to tell the public that these poor people who are experiencing horrible pain can just take one of their pills and all will be right with the world. Does that mean if we don't take Lyrica we cannot be well? Or, if we choose not to, then maybe we want to be sick? 

Imagine that. 

You can flick that pesky fly of pain off your shoulder with just a little pill.

All the pain will go away and your life will resume.

Oh joy.

Everyone will get better.

But I still hate that fricking commercial.

By the way, here's the link to the FDA flyer on Lyrica. 

Click here.    http://www.fda.gov/downloads/Drugs/DrugSafety/UCM152825.pdf