Wednesday, October 28, 2009


Oh man. Frustrated isn't even a strong enough word to describe how I'm feeling right now. But I'm not sure if I can even come up with a word that IS strong enough.

This week has been the week from hell. And it's only Wednesday. It needs to stop. Like right now. I honestly don't know how much more of I can take. I just really really really don't know. I've been in SO much pain and SO tired and just generally miserable. It's been like this since Sunday. And today with the rain it's been even worse.

I went to the doctor today, which was not much help as usual. He is just stumped and doesn't know what else to do. I have either been on or am on everything he can think of, not just including FDA approved fibro meds.

Too much pain to even finish this. Just wanted to quickly update.


Friday, October 23, 2009

Unwell - Matchbox 20

[This song was not written about someone with a chronic illness, but if you look at it from that point of view, it definitely makes alot of sense. Or maybe that's just me.]

All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something

Hold on
Feeling like I'm headed for a breakdown
And I don't know why

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to

I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell

Monday, October 19, 2009

October 19, 2003

October 19, 2003. It was a bit over a month into my freshman year of High School, and it was the day my life would change forever.

It was my best friend's birthday. She had been going through a really hard time lately, and I was hoping that our birthday plans would cheer her up.It was a Sunday, so we had no school, but we agreed that I'd come over early and we'd get ready together. I went to her house, and knocked on the door. All I heard was screaming. Scared, I opened the door and went inside. There, I found her mother in hysterics. I asked what was wrong. She couldn't even speak, she just handed me a piece of paper.

I took the paper and hurriedly read what it said. I dropped to the floor and cried. It was a suicide note from my best friend. Apparently, her mom had found her upstairs only moments before I arrived. I couldn't believe it. I was in shock. Even though I knew her mother would never do such a thing, I still thought she was playing some kind of horrible, cruel joke on me. But of course, she wasn't.

I broke down. I just couldn't take it. My best friend was gone. The one who was always there. The one who helped me through everything. The one who always seemed so strong. The one who was always so happy. The one who had taught me so much about life, and had helped shape me into who I was. Gone. It wasn't fair. If she wasn't living, why should I? I have to admit, for a while after her death, I tried to follow in her footsteps.

Its been 6 years now, and the pain still hasn't ceased. To be honest, I don't think it ever will. I still have emotions of guilt, wondering why I couldn't save her.I'm still mad at myself for not knowing the situation was that bad and for not helping her. I still wonder why. But most of all, I just miss her and wish more then anything that she was still here.

And for those of you who say that I care too much, or am overbearing, maybe now you will know why. Having gone through this, it has made me very protective of my friends, and made me always try to help everyone, no matter what the situation. See, I am scared. I'm scared that it will happen again someday. It has taught me that you can never expect something like this. So THAT is why I am the way I am today.

RIP love, you will always have a special place in my heart, and I will never forget you. Without you having been here, I wouldn't be the person I am today. I can't wait to be with you again someday. I love you and miss you more then anything.

Friday, October 16, 2009

Lyrica/Neurontin Update

Well, I don't really know where to start here, but I guess I'm gonna start with Saturday. By Saturday, I was mostly recovered from the flu, but I was having horrible horrible pains in my legs, and it was more like nerve pain, completely with burning, tingling, etc. It was really bad and I didn't know what to do about it. I dealt with it on Saturday, but mainly because I just hoped it would go away because I didn't want to go the ER, because they usually just dismiss everything as fibro anyways.

But on Sunday, I woke up and it was even worse, and I just couldn't take it anymore, so I ended up in the ER anyways. The doctor said it did seem like nerve pain but he didn't know what to do for it since I was already on Lyrica. I basically told him that obviously the Lyrica wasn't working right and there had to be SOMETHING he could do. So then reluctantly (I say this because thats how he sounded) prescribed Neurontin. I went to Rite Aid to get it filled, and made sure I double checked with the pharmacist to make sure I could take both Lyrica and Neurontin at the same time, and it all checked out ok. So I started taking it that night, and woah what a difference! The pain got much better along with the other symptoms, and it even helped me sleep!

So on Tuesday, (Remember, Monday was a holiday) I called my neurologist's office to tell him about all that had happened. He didn't think it was necessary for me to be on both medications, and since he apparently likes Lyrica better, he decided to just up that. I wasn't very happy with that decision since the Neurontin seemed to be helping more, so I called yet again, and he finally agreed.

Tuesday night, I stop taking Lyrica and took Neurontin instead. Wednesday I slept most of the day, but don't really think much of it because that happens sometimes with my fibro flares. However, when I did end up being awake that evening, I was horribly depressed/anxious and wasn't even really sure why. And it was really bad, like including crying fits. And then I was like that on Thursday most of the day too. WTF?

Same with today. But today Dan and I realized that it must be the stopping of the Lyrica, and then it's like a withdrawal or something of some sort. I don't know. But its really bad, and tonight I just decided I couldn't take it anymore and took a Lyrica to see if the theory was correct. It was. I feel much better now, still upset about the same things as I was, but I'm not a wreck at all. Not sure what I am going to do about this for the rest of the weekend, but I know for a fact that I am calling my doctor next week to see what can be done.

Well, there's the update on my life. Hope all is well <3

Tuesday, October 13, 2009

Thought This Was Worth Sharing....

I found this online, and thought it was worth sharing:

"Sometimes people come into your life and you know right away that they were meant to be there, they serve some sort of purpose, teach you a lesson or help figure out who you are or who you want to become. You never know who these people may be; your roommate, neighbor, professor, long lost friend, lover or even a complete stranger who, when you lock eyes with them, you know that very moment that they will affect your life in some profound way. And sometimes things happen to you and at the time they may seem horrible, painful and unfair, but in reflection you realize that without overcoming those obstacles you would have never realized your potential strength will power or heart. Everything happens for a reason. Nothing happens by chance or by means of good or bad luck. Illness, injury, love, lost moments of true greatness and sheer stupidity all occur to test the limits of your soul. Without these small tests, if they be events, illnesses or relationships, life would be like a smoothly paved, straight, flat road to nowhere. Safe and comfortable but dull and utterly pointless. The people you meet who affect your life and the successes and downfalls you experience, they are the ones who create who you are. Even the bad experiences can be learned from, those lessons are the hardest and probably the most important ones. If someone hurts you, betrays you or breaks your heart, forgive them, for they have helped you learn about trust and the importance of being cautious to who you open your heart to. If someone loves you, love them back unconditionally, not only because they love you, but because they are teaching you to love and opening your heart and eyes to things you would have never seen or felt without them. Make every day count. Appreciate every moment and take from it everything that you possibly can, for you may never be able to experience it again. Talk to people you have never talked to before, and actually listen, let yourself fall in love, break free and set your sights high. Hold your head up because you have every right to. Tell yourself you are a great individual and believe in yourself, for if you don't believe in yourself, no one else will believe in you either. You can make of your life anything you wish. Create your own life and then go out and live it."

Thursday, October 8, 2009

Fibromyalgia - The Real Monster

Fibromyalgia - The Real Monster

Yep, a real monster. He steals away the things we use to take for granted. It is so real and yet so unbelievable. I am so tired of explaining to people what "is that"? It is still not known in the mainstream of society and still has false information floating around in spite of the efforts made by the many patients who suffer it.

I hate fibromyalgia. It is unpredictable, unbelievable, and invisibile. These three characteristics makes it the single most stigmatized illness on the planet. It makes us look like hypochondriacs because it has designed itself as such. It is a coward. It won't show its face. It won't leave us alone. It hurts both physically and emotionally.

The facts are never discussed which have come to light with recent research. I promise that more information is put on t.v and magazines about the common cold which is a short term inconvenience. No mention of the 10 to 15 million in the U.S. alone who suffer a disease which acts like the aches of 3 kinds of flu, being beaten with a 2 x 4 board, having our hands on fire and tingling, and leaving us in some constant state of exhaustion no matter how much we are able to "sleep". (Also, no mention shall be made of how a sleep disorder is attached which leaves us lacking or deficient in stage IV sleep).

We shall hear no mention of the research which shows the lowered levels of dopamine, no mention of the lowered levels of serotonin and norepinephrine or the increased levels of substance P in the spinal fluid. You will not see a special on t.v. today telling people that pain signals have been visualized on brain scans, and also no mention of the research indicating loss of grey matter in the brain with fibromyalgia.

However you may likely see how a recent study may show that "eggs and milk are bad for us". Then another mention on the news of how another study shows that "eggs and milk are good for us". You will hear all kinds of trivia such as this. However, no mention will be made today about how terrible the pain and exhaustion of fibromyalgia actually is. No comments on how many of us are in pain likened to that of cancer yet we will live a long life with the pain.

Yes, the National Fibromyalgia Association is always geared up for May 12th each year now. But do you see that on CNN? I don't think so. It seems that most of the speaking out is all in vain because the world would rather choose to see us as a bunch of underachieved lunatics who want attention.

I think I should not be so angry and not nearly as verbal if the disease was believed. If believed, would I seek sympathy? No. I would not. I still do not, even though we live in a world which still does not believe us for the most part. I speak not for myself, but for the millions who are not fortunate enough to have a doctor and family who believe them. I speak for those millions. I get angry each time I hear someone say that "Aunt Bessie thinks she is sick with some disease called fibromyalgia, but she is just a hypochondriac because that disease is not real". That is what angers me and gets me to punching keys here on the old pc.

I even have a very best friend with whom the subject of FM is taboo. I cannot say much about it until I can see that she is clearly trying to change the subject. She would rather believe that all the stiffness and knots in my back are "just a back problem". She would rather believe that I am simply "stressed out and anxious". But never that the disease called fibromyalgia is the miserable beast which causes the forementioned symptoms. I can deal with that. But I cannot deal with the disbelief which society and the medical community has in general. The nurse in me may well be much more angry than the patient in me.

So, until the day someone stands up loud and clear with me and joins together to speak to the world outloud, I will continue to write on the computer. It is, at this time, my only means of getting anything out to the masses. (that is, the few of the masses who will even read this).

By: Debra (a.k.a. learnFMnow)

Sunday, October 4, 2009

Gotta Love Life....

Yet again, I am not feeling life lately, but this time its because I have managed to come down with the flu. And trust me, the flu plus fibro is absolutely horrible and really just makes you wanna curl up in a ball and die. Or maybe that last part is just me. Who knows?

But anyway, I am currently on day 5 of this horrible thing and I def don't feel any better at all. And this is the weirdest flu I've ever had.The symptoms change, come and go, etc. In my memory, I've never had something like that. But I've had all the worst symptoms. Fever, headache, congestion, coughing, sore throat, dizziness, weakness, pain, stomachache, etc. You name it and I've prolly had it. And I'm pretty sure its making my fibro act up more too.

I'm pumping in the antioxidants, the vitamin c, other supplements, and fluids but nothing seems to help. I have not felt any better from day to day, and during some parts of the day I feel worse. Like I said, its a weird strain I have here.

To make matters worse, Dan is sick too, and we both have the hardest time getting things done. And I've had to take time off work, which absolutely sucks because we need the money. I'm supposed to go back tomorrow, and I think I'm going to even if I'm at death's door. We need the money that badly.

Ok I'm off. Sorry for the complaining. And sorry for any typos, I did this via my blackberry.


Friday, October 2, 2009

Movie List

So I've been told that I need to make a list of movies that have affected my life in one way or another. They could have taught me something, made me realize something, changed how I view something, or somehow changed who I am. I have compiled a list. However, these movies are in no particular order, and I'm almost positive I am missing some.

1. A Walk To Remember
2. The Green Mile
3. Freedom Writers
5. Pay It Forward
6. The Five People You Meet In Heaven
7. Beaches
8. Across The Universe
9. Tuesdays With Morrie
10. Pearl Harbor

There we go. :)