So, today is May 12th, Fibromyalgia Awareness Day. (And as a sidenote, I'm annoyed that I just had to add fibromyalgia to my computer's dictionary.)
I'm not doing much for awareness this year. I have my awareness t-shirt on, but I'm not really leaving the house today. I have no real need to. Last year, I cut up ribbons and made purple ribbons and passed them out to various places. Could of done that this year, but quite frankly, I just don't have the energy.
Ahhh fibro. What to say about it? What to say about a disease that has literally taken my life away? A disease that has made me feel much older then I am? A disease that has changed everything I've ever known?
It has completely and absolutely changed everything for me. I'm 21 years old, and most days I feel like I am at least 80. I have a hard time going out or doing fun things that I used to do, my body just can't handle it. I'm in constant pain, worse pain then I could have ever even imagined before it, and am so exhausted, no matter how much or how little I sleep. My life is not my own anymore, it has been taken over by some kind of horrible monster. A monster who has taken my life away, and left me with this, which sometimes I can't even call a life. Most days it just doesn't feel like it.
But I'm not gonna give up. I can do this. There is hope. I must remember that. Someday, things will get better. Right?
#Fibromyalgia Awareness Day 2010
Wednesday, May 12, 2010
Tuesday, April 20, 2010
Not Feeling It.
I haven't written in here in forever. This is very hard to keep up with, I don't know why. But I just never seem to have the time or energy to write in this.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Anyways, I had tremendous nerve pain for a while, my I had a tooth where a piece was broken off and the nerve was exposed. It caused the worst pain I have ever had in my life. I even ended up in the ER one night because the pain was so bad. They numbed the nerve which was the best thing for me. It gave me one night of sleep at least. I didn't sleep for like a week because the pain was so bad. Anyways, today I finally had the tooth pulled, so I'm hoping that'll be the end of the pain.
Work is getting too much for me, physically. I am in so much pain and so exhausted after a shift. And I don't know what to do about it. I can't stop working, because if I do we won't have enough money to live. But if I keep working, I just keep getting sicker and sicker. Fibro is not usually a condition that worsens, but I'm convinced mine is. What I really need is some sort of desk job or work at home job or something, but I'll be damned if I find anything.
*sighs* I'm just not happy with the way life is going lately.
Sunday, February 28, 2010
A Letter From Fibromyalgia
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.
Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!
In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.
Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!
In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Fibromyalgia
Sunday, February 7, 2010
Good News!
Soooooo I have some good news. I don't need surgery on my knee! It looks like it's just a minor tear that should heal on its own. I do need physical therapy, but that's nothing compared to needing surgery! And my MRI looked good, so that's a positive thing too. Thank God! I am SO relieved! I was so scared and so stressed and just ahhh! It's about time I finally get some good news!
That's really all I have to say today, just wanted everyone to know the good news! :)
That's really all I have to say today, just wanted everyone to know the good news! :)
Tuesday, January 26, 2010
One Thing After Another....
Wow, I haven't actually updated this in SO long. I feel like it has just become more of a chore than an enjoyment. I don't know why, it just seems that way. It's weird really, because when I first started this thing, I absolutely loved it and used it all the time.
Anyways, I left off right before Christmas. Dan and I went to my parents' house for Christmas, which was nice. It didn't feel nearly as much like Christmas as it usually does, and I think its just because I am growing up, and while Christmas is still nice of course, it just isn't the same as when I was younger.
While I was there, I started having some extreme pain in the left side of my face, which I thought was my trigeminal neuralgia flaring. It was beyond painful, and NOTHING got rid of it. I actually ended up in the ER once because the pain was just THAT bad, and they gave me hydromorphone (which is like synthetic morphine) and even that didn't work, that's how bad it was. After like a week or two of being in pain, it was finally discovered that it was actually TMJ, and that it was setting off my trigeminal neuralgia as well. My doctor put me on short-term prednisone (which made me soooo sick) but calmed it down, and it's been better since, thankfully. That was such bad pain.
So a little bit more time goes by, and I'm feeling horrible, so exhausted, sick feeling, etc. I thought it was just the fibro acting up, so I just let it be for awhile. But it got worse, and got to the point where I knew it was more then just fibro, so back to the doctor I go. Turns out I had gotten mono somewhere along the line. That was just wonderful. Let me tell you, fibro plus mono is absolutely horrible. I have never felt so exhausted or so sick in my whole life. It was so intense. Actually, I think I still have a bout of it, but I do believe that it is getting at least a bit better. While I'm def still tired, it's not as bad as it was.
Sooo there's that. But then this past Friday, I fell on the ice in my driveway on my bad knee (the one I hurt back in August). The pain was so bad. I ended up going to the Brighton FirstCare on Saturday night because the pain was just so intense and I knew something must be wrong. So they referred me to an orthopedic doctor who I saw yesterday. He thinks I might have torn *insert medical jargon here.* I don't know what exactly it was. But anyways, I have an MRI next Wednesday to figure out what exactly is wrong, and then we will see what needs to be done. I may need surgery or I may not, we don't know yet. In the meantime, I'm in a knee immobilizer and am supposed to be using crutches if I'm gonna be on it alot. Oh fun.
Oh and I have a cold now too.
So this is my life....see what I mean when I say it's one thing after another?
Anyways, I left off right before Christmas. Dan and I went to my parents' house for Christmas, which was nice. It didn't feel nearly as much like Christmas as it usually does, and I think its just because I am growing up, and while Christmas is still nice of course, it just isn't the same as when I was younger.
While I was there, I started having some extreme pain in the left side of my face, which I thought was my trigeminal neuralgia flaring. It was beyond painful, and NOTHING got rid of it. I actually ended up in the ER once because the pain was just THAT bad, and they gave me hydromorphone (which is like synthetic morphine) and even that didn't work, that's how bad it was. After like a week or two of being in pain, it was finally discovered that it was actually TMJ, and that it was setting off my trigeminal neuralgia as well. My doctor put me on short-term prednisone (which made me soooo sick) but calmed it down, and it's been better since, thankfully. That was such bad pain.
So a little bit more time goes by, and I'm feeling horrible, so exhausted, sick feeling, etc. I thought it was just the fibro acting up, so I just let it be for awhile. But it got worse, and got to the point where I knew it was more then just fibro, so back to the doctor I go. Turns out I had gotten mono somewhere along the line. That was just wonderful. Let me tell you, fibro plus mono is absolutely horrible. I have never felt so exhausted or so sick in my whole life. It was so intense. Actually, I think I still have a bout of it, but I do believe that it is getting at least a bit better. While I'm def still tired, it's not as bad as it was.
Sooo there's that. But then this past Friday, I fell on the ice in my driveway on my bad knee (the one I hurt back in August). The pain was so bad. I ended up going to the Brighton FirstCare on Saturday night because the pain was just so intense and I knew something must be wrong. So they referred me to an orthopedic doctor who I saw yesterday. He thinks I might have torn *insert medical jargon here.* I don't know what exactly it was. But anyways, I have an MRI next Wednesday to figure out what exactly is wrong, and then we will see what needs to be done. I may need surgery or I may not, we don't know yet. In the meantime, I'm in a knee immobilizer and am supposed to be using crutches if I'm gonna be on it alot. Oh fun.
Oh and I have a cold now too.
So this is my life....see what I mean when I say it's one thing after another?
Thursday, January 21, 2010
Butterfly (She Flies Alone) by Journey
She never knew the meaning of the word
Or ever heard or felt of freedom
All she knew was looking out from windows
Streaked with her own tears and her own shadows
Within a cage, tried to escape
The silent rage
Cause no one ever listened
Behind her back, she's both wings tied
She will break free
She will not be denied
And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Sweet butterfly
Counting every second, minutes turn to hours
Seems like years
The wait's eternal
Finally passed the point of all lost hope
She will break free
She will not be denied, oh no
And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Like a butterfly, oh
Yeah
Within a cage
Tried to escape the silent rage
But no one ever listened
Behind her back
She's both wings tied
She will break free
She will not be denied
So she
She flies alone
High into the great unknown
She don't need me to tell her where to go
Sweet little butterfly
So she
She flies alone
Up into the great unknown
She don't need me to tell her where she goes
So she flies
Within a cage
Tried to escape the silent rage
Where no one ever listened
Behind her back
She's both wings tied
She will break free
She will break free
Sweet butterfly
Or ever heard or felt of freedom
All she knew was looking out from windows
Streaked with her own tears and her own shadows
Within a cage, tried to escape
The silent rage
Cause no one ever listened
Behind her back, she's both wings tied
She will break free
She will not be denied
And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Sweet butterfly
Counting every second, minutes turn to hours
Seems like years
The wait's eternal
Finally passed the point of all lost hope
She will break free
She will not be denied, oh no
And so she
She flies alone
High into the great unknown
And no one there to tell her where to go
So she flies
Like a butterfly, oh
Yeah
Within a cage
Tried to escape the silent rage
But no one ever listened
Behind her back
She's both wings tied
She will break free
She will not be denied
So she
She flies alone
High into the great unknown
She don't need me to tell her where to go
Sweet little butterfly
So she
She flies alone
Up into the great unknown
She don't need me to tell her where she goes
So she flies
Within a cage
Tried to escape the silent rage
Where no one ever listened
Behind her back
She's both wings tied
She will break free
She will break free
Sweet butterfly
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