CAPTURING THE CROWN

I've just captured the crown.

"Miss Erable" 2012

It's been difficult to write lately. On several levels. Have you ever wanted to convey something but just couldn't find the words? Of course, we have Fibromyalgia. On the other hand, it gets tiring writing about hurting all the time. I'd love to write something uplifting but, right now, it's tough to lift my hands let alone my attitude.  

I've gone into hiding.

Hiding from pain. Hiding from the depression that pain seems to bring. Hiding to keep focus and hiding to try to get my life in order. I've said it in a number of prior posts. Ever since those wonderful epidural injections the pain has gone into hyper-drive and managing it is a full time job.

I will say this, I've tried to walk the straight and narrow. I have not stayed curled up in a fetal position even though that's precisely where I'd love to be. I continue to work out and, at the very least, walk at least four miles a day. It not only gives me the exercise I need but it also gives me time to reflect. I know I've said this before too; exercise does not help relieve my pain. What it does is keep my muscles moving but, for me, the pain is still in the background. 

Did I just say the pain is in the background?

Wrong. Let me rephrase. No matter what I do I am reminded that I am in constant pain. So, how do I deal with it more effectively without adding more medications to my ever-growing list of them? Should I try massage or acupuncture? I've become hesitant on both because it just hurts to be touched right now. Should I just tough it out? 

At least I have an outlet. Research seems to be what is holding it together for me. I've been reading interesting documents from Canada. It's probably the most comprehensive and accurate document that I've ever read concerning Fibromyalgia. I will include the link at the bottom of this post because I think everyone who has this or knows someone touched by this invisible disease should read it. 

So as I accept my crown for Miss Erable 2012,

I wish that I could be runner-up.

I take that back.

I wish I wasn't even in the competition.

Link:  Fibromyalgia Syndrome

AIN'T NO CURE FOR THE SUMMERTIME BLUES

It makes no sense.

I live in Las Vegas.

I hate the heat.

I have to say one thing about Fibromyalgia. The internal thermostat definitely doesn't work! I don't like it too hot and I don't like it too cold. I don't like it real windy. I love the rain but I hate the humidity. 

Mostly, I hate the heat.

Living in Las Vegas in the summer is like standing in front of a hair dryer. Just turn it on and point it at your face and voila! You're in virtual Vegas. We are almost to triple digits and I'm just not ready for it. The way I see it is that you can put on sweaters and jackets to stay warm but you can only strip down so far. The power company loves me. Or, in other words, the nickname for my home should be Antarctica.

Hot is hot.

And it sucks.

I guess we just can't regulate our thermostat. Usually we have problems with one extreme or the other. As you can guess, mine is the heat. I do much better when the weather is cooler. True to the general theme of Fibromyalgia, other people cannot tolerate the cold weather. Most of us do agree, however, on humidity. We don't perspire as easily either. Maybe that's why the heat really gets to me. Could this be due to a thyroid imbalance? Or is it just another symptom of our hypersensitivity?

Basically, it comes back to that pesky hypothalamus. The HPA axis seems to be popping up everywhere.  I guess the autonomic system is out of whack. Everything seems to point to a problem in this area. What triggers it is anyone's guess but when you trace back the symptoms that we have........well, it all seems to point back to this area of the brain. 

We have malfunctions in the two key areas of the brain. The autonomic system and the HPA axis. These two areas are the major pathways for the bodies response to stressful situations. Considering that we don't handle stress very well...........well, there you have it.

But back to the heat.

I hate it.

I'm sitting right in the middle of fort stinking desert.

And it hasn't even gotten started.

WALK MORE MILES IN MY SHOES

Fibromyalgia Awareness Day is May 12.

Walk more miles.

In my shoes.

Sigh.

Anyone who knows me knows that I LOVE shoes. My closet is filled with them and Nordstrom's anniversary sale was my nirvana. I'd go through those racks of shoes and with a huge smile on my face buy all sorts of heels (at least 3 inch because anything less was totally unacceptable) for me and for my daughter. So, for me, it is fitting to bring my shoes along to my Fibromyalgia Awareness Day post.

Gorgeous, black, sexy, high heel pumps. I don't know about anyone else but I felt like a million bucks when I wore them. If you look at them you'd never think that the feet inside those pumps hurt like hell. We wear our invisibility like those shoes. We might look fabulous but inside we wish we could crawl right back into bed. No one sees what it's like to crawl to the shower and almost cry as the water pounds your back. No one sees that lifting your arms to put on makeup takes as much energy as a 5 mile run. Forget about lifting the hair dryer. By the time we're done we might as well just stay home.

Most of us were typical Type A. I know that I thought that I thrived on stress. One of my favorite lines was from Top Gun. I did love going at (at least) Mach Two with my hair on fire. I worked hard, played hard and rested hard. Usually my game plan when I'd clean my house was to start early and work like a tornado and NEVER stop for a break. When I did stop it would take the jaws of life to move me from the couch. Come to think of it, I worked that way too. My co-workers would call me "the tornado" because I'd come in, rearrange the sales office and then when it was done; stop. Yes, I drove people crazy.

Now, it feels like aliens inhabit my body. What are all these strange pops and creaks? Why does every bone and muscle in my body go from a dull ache (on a good day) to blowing past 11 on the pain chart? Why am I better than a barometer and cringe in fear when I feel a storm coming? I used to love rainy days. Visually, I still do but I know I'm going to hurt like hell. Even my family calls me giving me weather forecasts. My hands start to ache with every tick of the humidity levels and I know what's coming and it isn't good.

It seems that all doctors want to do is throw more pills at us that don't work. They want to try to say that it's a Vitamin D deficiency or some other supplement that will "cure" the Fibromyalgia that they don't seem to believe in anyway. We've taken everything out there and none of it gets to the root of the problem. The research points to a central nervous system malfunction and we keep getting sent to rheumatolgists. Maybe we need a neurologist? 

When will someone try to figure out why the switch was suddenly flipped? There is too much Substance P (which heightens our awareness to pain)  in our spinal fluid. Our glutamate levels are abnormally high. Our internal amplifier is turned up full blast. Even the slightest touch can bring us to tears. The medications that are used have side effects that are worse than the symptoms we experience.

Why do we have tons of symptoms that ebb and flow with each passing second? Why do some people have more fatigue and others have more pain? Why is the IBS worse with others? We can all agree on the myriad of symptoms but some medications work for some and not others? Treatment and management are as different as the colors of the rainbow. Why do we feel foolish when describing our symptoms in an almost apologetic manner? We feel guilty for feeling sick. Sick and tired.

We feel like we are being labeled "lazy." We're tired of research for every other disease out there but when it comes to Fibromyalgia and Chronic Fatigue we are the proverbial red headed step child. The problem is we lose confidence because we don't recognize who we've become. We believe our own bad press: we feel lazy, whining and maybe, just maybe, if we get up and just DO SOMETHING we might feel better.

We are the wounded warriors.

We are invisible.

We are in pain.

We are tired.

And we don't know why.

Fibromyalgia Awareness Day.  May 12.