Thursday, May 26, 2011

I CAN FEEL IT










It started out as a twinge.


I went to the gym today to walk a little bit. First, it gets me out of the house and, second, I do need the exercise. 

If you don't move it you lose it.

So, I'm at the gym and I feel the old familiar twinge in my hands and it started to really hurt when I walked around the track. Great. I know what's coming and it isn't good. 

But I kept going anyway.
I knew I'd regret it.

I'm beginning to feel that I'm being sucked into this huge vortex. I've started the pain medication and I'm not going to be stubborn about it. I'll then take the muscle relaxers before bed. I can tell right now it's going to be a doozy of a night. I know the medication will not help me sleep and I should check and see what movies will be on cable. I'm going to need a few of them.

I don't understand why the pain strikes my hands and feet first. After that the old familiar body aches start building. I ran into an old friend the other day who reminded me to accept the pain and then move on. I can't seem to be able to wrap my head around that concept. To me, acceptance means defeat and I don't give up that easily. Then again, he's never gotten up in the morning in severe pain.

Could the pain have something to do with the new supplements I'm taking? 

My daughter got me started on the powder supplement called "Alive." I mix it with banana and almond milk and make a smoothie out of it. I've never been much of a breakfast person but she told me it would help with my energy levels. I figure it can't hurt me so I'm in. Actually I drink it after my morning coffee and diet coke. I need all the help I can get so I start the morning out with a good hit of caffeine. Then, I drink the smoothie. I guess I'll never really know how much it helps because of the caffeine but it's worth a try. It's better than slugging down a handful of vitamins in the morning. I know the diet coke isn't the best breakfast but there are things that I can give up and then there are the things I can't.

Caffeine is one of them.
I don't care what form it's in but it better be there.
Then the fog rolls in.

The fog is an other worldly experience in itself. I find myself searching for the right word or trying to remember why I just walked into the room. I have an iPhone and I put everything in the calendar. When I say everything I mean everything! I put events, appointments and even dinner with my daughter. I put that I need to go to the store and what to buy. If I don't I won't remember anything.

The problem is that I don't remember to check the calendar.

I keep trying to find the person inside. I can go out but all I want to do is go home and get into bed. When it spikes I just want to hide from the world. I hate the fact that this limits me so much. I hate the way I look right now and I hate the way that I feel. I hate the pain and I hate the fatigue. I hate the body aches.

I guess I don't like much right now.

Wrong..........

Right about now I'm liking my bed very much.











Wednesday, May 18, 2011

BORED.



I'm bored.
Nothing to do.
Bored.

I've written about this before. I need to re-invent myself and find something to do. Ever since the accident I've been limited physically and the subsequent Fibromyalgia just pushed me over the edge. Pain tends to make me a little bit of a recluse and yes, I'm being sarcastic. I think that's what is really bugging me. I'm feeling isolated.

So what to do?

I was speaking with an old friend from high school. He told me to put together a business plan just to get my mind moving again. That doesn't sound too bad but I keep coming back full circle. Even if my mind could pull a plan together, what kind of plan should I execute? 

So what to do?

I've never been the type to sit around and do nothing. That probably has something to do with the Fibromyalgia as well. Typical Type A personality crap. All I want to do is feel productive. I miss new home sales. I realize that I can't go back to it but I need to find something that I love equally as much. 

So what to do? 

Well, I like to write and I like to sell. I like to be an influence on people's lives. That's not too difficult is it? 

Yes, it is.

So I'm back to being bored. The weather has been cold and humid. By this weekend the temperature will fluctuate approximately 30 degrees so the pain will be having a real field day with my body. 

Great.

Bored.

Tired of watching TV.

In pain.

Can't sleep.

What's next?





Tuesday, May 10, 2011

WALK ONE MORE MILE IN MY SHOES










May 12.
It's Fibromyalgia Awareness Day.
Let's go for a walk.

We're invisible and we wear our cloak of invisibility like a dark shroud around our shoulders. It's distinctively different from the smile that masks a life full of pain. On the one hand we treasure our invisibility because we wouldn't want the outside to look like we do on the inside. On the other hand, we are not to be believed because we just don't look that bad.

To anyone else, that is.
After all, what is pain? 

It's no big deal, really. We are supposed to suck it up and not be such a wuss. Pain equals weakness and weakness is hated. For those of us who were Type A squared, the loss of control that has accompanied this illness has almost been as devastating as the illness itself. To top it all off, we don't know if we'll ever get it back. This illness takes a vital, ambitious and, excuse the language, balls to the wall woman and turns her into something that can't remember why she walked into a room. Everything that used to be precious to her life; her career, her mental acumen, her body and her confidence in herself and her abilities, are now a vague recollection. Even when you can remember all it does is make you cry for the person you used to be.




Can anyone understand that the tears we cry are not only for pain but for the endless frustration that we feel? We have a myriad of symptoms that are dismissed by doctors. Medications are hit and miss and most of them have side effects that are worse than the pain we feel. We've tried anti-depressants and anti-seizure medications. We've tried the opiates. We've tried muscle relaxers. We've tried vitamins, acupuncture and massage. If we complain too much, we're neurotic. If we try to keep it too ourselves, well, we must not really feel that bad.






How do you tell someone that you really miss the life you used to have? A life that was pain free and a life that could be lived without worrying about the inevitable crash to come? How do you express your pain in a way that's not dismissive and not pitied, but believed? How do convey the fact that you're not wallowing in your pain but that it is your reality and you're really doing the best you can to live with it?

How do we ourselves understand the new crop of symptoms that seem to appear daily? For some it's sensitivity to smells, noise or chemicals. For others it might be a mysterious ache or pain that suddenly appears in a different part of our body. How do we know what is going on in our bodies? We can't have a doctor on speed dial and we fear looking foolish, even to ourselves. Our body seems to be betraying us and we just can't seem to get a handle on it. We feel overwhelmed and then feel stupid because what we used to handle would cause most people to burn out quickly.




We feel isolated even around our dearest friends and family. Chronic pain loves to play with our  emotions and it plays us like the virtuoso that it is. We doubt our bodies and ourselves. The confidence that we had with life is now diminished so that we don't even recognize the person we've become. Sometimes even we believe the bad press;  think we are whiners and if we'd just get up and move around we'd feel better. 





Our brains are in a constant state of fog. The overpowering fatigue and pain. Imagine living with the worst flu you've ever had and then imagine that it NEVER goes away. Year, after year, after year. How do you think you'd feel given that life sentence? Yes, there are good days but good days mean the edge is off the pain and fatigue. It never really goes away. Your body has limitations and we've learned to listen.


When will researchers try to figure out why the switch was flipped?  I feel that this is a neurological disorder. Where others feel a touch, we feel pain. There is too much Substance P (this heightens the awareness to pain) in our spinal fluid. We have abnormally high levels of glutamate (and excitatory neurotransmitter) which means our neurotransmitters are on overdrive. Our internal amplifier is turned up full blast.  In other words, THERE IS SOMETHING WRONG.





Let's also not forget the sleep disorder that is also one of the lovely symptoms of Fibromyalgia. Alpha wave intrusion. The nice, sweet sounding term for our "awake" brain waves that keep saying hello to us in the middle of the night so that deep, restorative sleep is an impossibility. The fatigue we experience is overpowering, however, we cannot find the sleep that our body so desperately needs. Our brains will not allow it.


There are lists and lists of symptoms. There are the intestinal woes, thyroid and other hormonal issues. Even I look at the list and think it's no wonder people think we're crazy. I haven't even touched on the emotional issues that are inevitable when you live with chronic pain. 





It's so difficult to find the acceptance we crave. On one hand we do accept our physical and emotional limitations but one the other we keep fighting. We are the wounded warriors that want to fight the good fight until this illness is defeated. 

But sometimes we can't.


Sometimes it just hurts too much.


And sometimes we're just too, too tired.











Monday, May 9, 2011

WHICH MOVIE AM I IN?









I feel the need,
the need for rest!!!!!!!
Top Gun...
Superman.....
Which movie am I in???

I have to tell you, basically, I'm a slug. The problem with your body when you have Fibromyalgia is that a lot of movement tends to make you feel like roadkill. Trust me, after this last weekend I'm definitely in roadkill mode. To top it all off, Saturday was hotter than holy hell and today I'm dealing with thunderstorms. 

Great, just add a tiara!

I do have to say one thing that makes it all go away.

My kids got married this weekend. I have to say it's an unreal feeling as a parent. We talk about milestones in our lives but, this one, was absolutely amazing! I really thought I was ready, I really did. 

Wrong.

I walked into the hotel and saw her and just lost it. I've never seen her more calm and more beautiful. She had a focus and a purpose and it was simple. All she wanted to do was walk down that aisle and marry the man of her dreams. The wedding was simple, elegant and intimate. 

No one came up to me and mentioned the flowers or the centerpieces. The comments were how much they loved the looks on their faces. You could absolutely see them smiling from ear to ear and they were having the time of their lives. 

Just as it should be.

By the way, they love Top Gun and he's her Superman!! That's how the title of this post came about. I just thought I should mention it before you think I'm a crazy woman! So after the wedding I am trashed. I'm staying in bed and unwinding. I'm trying to process my feelings. You know, they've been together for awhile and the two of them seem so right and natural but, somehow, the ceremony changes things. It's really an unbelievable feeling.

I've got a new son and a married daughter.

Now, I'm smiling from ear to ear.







Sunday, May 1, 2011

A NOTE TO OSAMA FROM MARK TWAIN










"I didn't go to the funeral.
But I sent a nice note saying
 I approved of it."
Mark Twain


I never intended to use this blog as a venue for any political stance. I'm pretty much middle of the road on issues. There are some issues that I lean toward the left and some I am definitely on the right. If we take the averages........that's where the middle of the road comes in.

I think that some issues transcend politics and the killing of Osama Bin Laden is one of those issues. It filled me with pride watching people gather outside the White House and singing the Star Spangled Banner. There has been a lot of division and this will serve, at least for a little while, to bring the nation together.

We've got so many diverse opinions and sometimes we state them very loudly. That's the cool thing about democracy. We are able to do this without fear of being arrested or killed. It's a freedom we sometimes take for granted. My dad came over from Russia after Czar Nicholas was killed. He never took his freedom granted, he put his hand over his heart when he heard the Pledge of Allegiance and he loved this country so much that he became a citizen. I will never forget when I came home from college and I'd sewn a flag on the back pocket of my jeans. Needless to say, I had to take it off. He thought it was very disrespectful. I can only imagine what he'd think of some of the things said on network news!

So now we've cut the head off one cockroach but, unfortunately, another will take it's place. I'm also afraid that we may need to be very vigilant because there might be some sort of retaliation by his followers. I'm just so glad that there is finally justice for the families that lost loved ones on September 11. I still shudder when I watch those planes go into the twin towers and the Pentagon. I feel the same way today as I did almost ten years ago. He will probably become a martyr but, to me, he's just a thug and a murderer.

Are we going to take bets on the virgins?

I think he and Adolph should be roommate's.


I hope it's real hot down there.