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.

REWIRING THE CIRCUITS

My body is like the computer.

The hard drive isn't functioning.

I've had an interesting time lately. Ever since those fricking epidural shots my body has had a mind of its own. Every coping mechanism that I have used to control the pain hasn't worked. I had become a master of control. I even congratulated myself on that fact.  Even though the pain was ever-present, I had coping mechanisms that I would use to exert some sort of control over my body. Anything and everything would be tried and tested so that the days spent curled up in a fetal position would be minimized. I know that I would always have a level of pain but I thought I could control the levels. Control has always, always been my issue.

And I don't like being out of control.

Stupid me.

I haven't been sleeping real well. I mean, I do sleep but I am in that awful shadow of sleep. The one where you know you're asleep but it feels like you're awake? I know we have sleep issues but lately they're more pronounced. Why is it that all the articles on sleep fail to miss one important issue? If we lay in the dark and have nothing to distract us from the pain we will not drift off into blissful slumber. Instead, we will lay there in torture until we get up and do something else or have something else to help us pass the time.

Lack of sleep equals more pain and I understand that. Why do we have the alpha waves intruding into whatever possible sleep we might be able to get? Is the issue in sleep; not the actual sleep per say, but the ability for the heart rate to slow and the ability to breathe deeply enough to achieve that REM sleep that we need to replenish and restore our body?

There is an imbalance in the autonomic nervous system. 

The autonomic nervous system controls our unconscious bodily functions such as heart rate, breathing etc. There are two subsets: the sympathetic and parasympathetic. The sympathetic nervous system controls the flight or fight. Our bodies don't respond real well to stress and our cortisol levels are usually in overdrive as well. The parasympathetic system controls the quieter bodily systems such as digestion. So if this holds true, the sympathetic system gets us ready for flight and the parasympathetic gets us ready for rest. One or the other predominate inappropriately at inappropriate times.

We are screwed because neither one works.

We can't stop the flight and we can't rest.

Is it any wonder that we have pain?

So I guess when they find the "off" switch for the flight or fight and the "on" switch for the rest part of our brain we'll be fixed.

If they can flip the right switch.

MORE THAN A FEELING

Am I more than this illness?

There are days I'm not sure.

This is one of them.

Who was I before chronic illness? I know there were definite parts of my personality that have disappeared. I try hard to separate the two because it has been so long that I'm not really sure how to do it anymore. 

So who am I?

I'm still a cynic. I don't think that part of me will ever go away and I wouldn't want it to. That part of me keeps fighting the doctors who want me to just slug down a few pills and go away. The cynic that hates the invisibility and yet embraces it. The cynic that questions every thing and every one. The cynic that continues to look at this mysterious illness and that knows something is missing. 

Well, funding and research is missing but then again, when won't a few hundreds help anything?

Talking about hundreds, I'm a great shopper. That part of me probably won't change either. There is something so comforting about shopping. I don't care whether it's a grocery store, vitamin store or Nordstroms. Well, let me take that back. I do care whether it's Nordstroms because aside from Costco that is my favorite store. I remember the shoe sales with such fondness. Their anniversary sale is my favorite time of year.

I really don't think you can have too many shoes.

Well, at least I didn't think that. I look in my closet and remember the good old days. Days when I could throw on real high heels and run in them. I look at shoes with high platforms and remember the 70's. Remember those shoes? History really does repeat itself. I look at jeans with tears in the knees and laugh. Just looking at some of the clothing is crazy. 


Let's go back to the cynic. My sense of "snark" would come out constantly but frustration still takes over. I didn't have a lot of patience with stupidity before..... let alone now. My own stupidity makes it even worse. I get very frustrated with the fog. I hate it that I have to reread almost everything to make sure I'm getting it right. Even then, I'm not sure that I am. 


I want to think of myself as the same healthy woman that ran around with 4 inch heels. I'm still a computer geek who rubs her hands when I've been too long on the computer. I'm still a photography, movie and music buff. I'm a reader that finds it's a little tough to remember what I've just read. Most of all, I've had a tough time accepting that this is chronic. There are days that I look in the mirror and "I get it" and there are days that I don't. I run hot and cold and I swing to both ends of the spectrum. I guess what I'm trying to say is that I don't know who I am without Fibromyalgia. It sneaks into every part of my life. I don't try to let it but it does. 


Because the fatigue affects what I can or can't do for the day it has pushed its way in to my hobbies and career. Because the pain is ever-present on some level every day it has pushed its way in to the things that I love to do. For example, I found that Fibromyalgia had pushed its way into holiday cooking. I have paid for the desire to push past the pain and cook a holiday dinner. 


No matter what I say or do the pain and fatigue are the twins that want to accompany me in everything that I love to do or be. 


I can ignore them but like a two year old, the twins tug at my sleeves to let me know that they want attention.....AND THEY WANT IT NOW.


I just especially love it when the twins throw a doozy of a temper tantrum and refuse to stop until I give in and let them have their way.


So I'm still "me" with everything that I love to do with a healthy dose of Fibro thrown in for good measure.


Snarky, impatient, little old me.




**I forgot to add that this will be part of the blog carnival. Diana Lee at Somebody Heal Me graciously hosted this. Please stop by her blog and like her page on Facebook.