Thursday, November 18, 2010


Fulfillment. Something we all want in life. We want to feel like we are doing something with our lives. We want to feel like we are making a difference. We want to have some sort of rewarding experiences.

This is something I am struggling with lately. I feel like I am doing nothing in my life. I realize in some ways that this is not true, because I am going to school so that I can someday do something. I am going to become a counselor and I do believe that that will be a truly rewarding career.

But right now, I feel like I am doing nothing. I feel like I sit on my computer all day, and the most I ever seem to do is schoolwork. Sure, sometimes I hang out with my friends and all, but honestly, I really don't do much in general. I just feel so unfulfilled. I need a job I can handle, or a hobby, or just something. I want to feel like I am doing something with my life, I want to feel like I am making some sort of difference in one way or another.

Any helps/thoughts/tips?

Thursday, November 11, 2010

It's Been Awhile....

It's been awhile since I have written here. Over 2 months in fact. I just haven't had the time and/or energy to do so.

Let's see...what's new. Well, I finished my first term at Kaplan University with straight A's, so I have a 4.0 GPA so far. That is absolutely fantastic news. I never did that well back at USM, it just goes to show how much better this method of online learning really is for me. I'm really glad I made this choice and am finally doing this the right way for me.

On another note, my fatigue has been really bad lately. It's been to the point where I literally can't stay awake for more then a couple of hours without being so tired that I have to go lay down and take a nap. My doctor has prescribed photo-therapy which is like the blue light therapy. Amazingly enough, my insurance actually covered a unit for home use and it's even small enough that I can take it traveling with me. I have used it once so far this afternoon, and so far I'm staying awake. I'm definitely tired, but not so bad that I can't stay awake or anything. I just hope it does help long term, because I definitely need something.

We're going on a cruise in December with Dan's family which I am wicked excited about. We are leaving from NYC and going to Florida and the Bahamas. Just what we need to break up a dreary, cold Maine winter. Plus, I've always wanted to go on a cruise, so I'm very excited about this. I just hope it all goes well, with his family and all. But we shall see I guess.

Well, I guess that's it for now, just wanted to write a quick post since it's been so long.

Friday, August 27, 2010

"Misunderstood" by Mark Emmins (Fibro/CFS Song)

This is an amazing song called "Misunderstood" by Mark Emmins that he wrote for CFS/ME awareness. It applies to Fibro quite well too though. I wanted to share it with all of you, enjoy!

The scars may not show
But the wounds are so deep
Sometimes you never truly see
The pain someone feels
Trapped in the darkness in search of the light
Yet the soul needs to feed
Praying for life to return for me
It's no stranger to you and me
Just want security

It hurts to be touched
And our batteries drained
Confined to the house
Yet our hearts keep on beating
It's not in the mind as our life slips away
Just misunderstood
Just wish for the simple things in life
But you know that's so damn hard
It's so damn hard

Stuck in the darkness but seeking the light
Yet the soul needs to feed
Praying for life to return for me
Loss of hope and loss of friends
I long to be me again
Counted bricks on the walls a million times
Suffering souls
The thing to remember is we're not alone
A simple smile is a giant thing
I long to me again
I long to be free of pain
I long to be free again

It's not in the mind as our life slips away
Just misunderstood
You can't see from outside what's so deep within
Just want security
It's no stranger to you and me

Friday, August 13, 2010

Life goes on.

This has not been the funnest of weeks. I mean, there have been worse ones, but this one was just up there.

So, the worst part was Tuesday night. Tuesday night, I took all my nighttime meds as usually, including my Lunesta (sleeping pill) and went to bed. Unfortunately, sleep was just not in my cards apparently. It was bad. I laid in bed for hours, just trying to sleep, but it wouldn't happen. Then, after awhile, I ended up quite sick. Like vomitting sick. Apparently, when you take a sleeping pill and it doesn't wear off, it makes you quite sick. So that was not fun. Then, around 9am or so, I got even sicker. Like weak, dizzy, nauseous, exhausted, extreme pain, etc. And it was so bad that I all I could do was lay in bed, I could barely move. And I couldn't seem to fall asleep. Eventually, I did for like 2 hours. To say that the rest of Wednesdeay was a day from hell, would be an understatement.

Luckily, I've gotten more sleep since then. But everything is so damn stressful right now. Money issues would be the worst. We just don't have the money we need for everything. We're trying so hard, and we've gotten better at not "wasting" money, but still, ends never seem to meet. I need to find a job I can handle, preferably a work from home job, but this just does not seem to be happening, and it's SO damn frustrating. I just want things to work out.

I'm trying not to, but I feel like I am losing hope. I am losing in hope in ever feeling better. I am losing in hope in things working out finanically. I am losing hope in things working out period. But without hope, seriously, whatever am I going to do?

Thursday, July 22, 2010

Yesterday's Adventures

(Side note: This is my 50th blog post, go me.)

So yesterday, Dan and I went to Gorham to visit Kyndra and Mike. It was pretty warm out so we went swimming at the neighbor's pool. Not long after we got in, we heard thunder. We decided to risk our lives until it got really bad. So it was pouring and thundering and lightning, and we were still swimming. (Yes we are insane.) After about an hour or so, we went back inside and played some Wii. We had planned on having a barbeque and since that's still we had to eat, so we had one anyways. Poor Mike was out grilling in the pouring rain and thunderstorms. Afterwards, we went downstairs and played more Wii, until the power went out. Kyndra's mom called and told her that a tornado had touched down not far away at all. I checked the weather on my phone, and sure enough, we had a tornado warning. So we stayed in the basement til it passed. We were all ok, but it sure was scary! It was my first ever experience with a tornado, and trust me, it was enough for a lifetime!

So that was my adventures from yesterday. All the weather changes and such have sure wreaked havoc on my body. Pain is through the roof, and I've had such a headache from the pressure changes. Gotta love it, only not.

Not much else to say today really, just wanted to chronicle my eventful day.

Saturday, July 10, 2010

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Fibromyalgia, Chronic Fatigue Syndrome, Asthma, Migraines, Trigeminal Neuralgia, Hypothyroidism, TMJ, Anxiety.

2. I was diagnosed with it in the year:
Migraines 2004, Anxiety 2005, Chronic Fatigue 2007, Fibromyalgia 2008, Trigeminal Neuralgia 2009, Asthma 2009, TMJ 2010, Hypothyroidism 2010.

3. But I had symptoms since:
Some of them for as long as I can remember. I can't remember them all now though.

4. The biggest adjustment I’ve had to make is:
not being able to go out and do things I used to be able, not being able to do the things my friends do, etc.

5. Most people assume:
that it's all in my head, that i'm making it up, that it's not real, etc.

6. The hardest part about mornings are:
Waking up and actually staying awake, getting out of bed, getting ready for the day.

7. My favorite medical TV show is:
Grey's Anatomy and House.

8. A gadget I couldn’t live without is:
My blackberry.

9. The hardest part about nights are:
not being able to sleep, being in pain.

10. Each day I take __ pills & vitamins. (No comments, please)
I take 11 different prescription meds.

11. Regarding alternative treatments I:
go to acupuncture and the chiropractor when I can afford it, I also love reiki but can never afford it.

12. If I had to choose between an invisible illness or visible I would choose:
I'm not sure.

13. Regarding working and career:
I've tried and failed. Looking for something easier on my body.

14. People would be surprised to know:
That I DO NOT like having to rely on other people for things.

15. The hardest thing to accept about my new reality has been:
that it's not going to go away. That this is something I have to accept and live with for the rest of my life. That life is never going to be the same again.

16. Something I never thought I could do with my illness that I did was:
still have at least a bit of a life.

17. The commercials about my illness:
makes me so mad. They act like this medicine cures it and then you'll be fine. WRONG!

18. Something I really miss doing since I was diagnosed is:
going out and doing something with my friends or whoever. I can barely do it now, and when I do, I sure pay for it!

19. It was really hard to have to give up:
my life. Or at least the way it was.

20. A new hobby I have taken up since my diagnosis is:
talking more to my friends and family. Not really a hobby, but its true.

21. If I could have one day of feeling normal again I would:
Hang out with friends and family and have a BLAST!

22. My illness has taught me:
to live life to the fullest, treasure every moment, and help others the best you can. Sometimes all someone needs is a helping hand.

23. Want to know a secret? One thing people say that gets under my skin is:
You just have to (insert something crazy). It's all in your head. (Insert something else here) will cure it.

24. But I love it when people:
when believe I am sick, and treat me that way.

25. My favorite motto, scripture, quote that gets me through tough times is:
I don't know, I have a few.

26. When someone is diagnosed I’d like to tell them:
to do lots of research because doctors DO NOT know it all. And find help and support, it's what will get you through this.

27. Something that has surprised me about living with an illness is:
how hard it is, and yet how it's changed me. And how I've made some amazing friends through the ordeal

28. The nicest thing someone did for me when I wasn’t feeling well was:
just believe me, know I'm not making it up, and helping me in any way possible.

29. I’m involved with Invisible Illness Week because:
I want people to understand that just because someone doesn't look sick, it doesn't mean that they aren't!

30. The fact that you read this list makes me feel:
really good. I hope you understand better now. Thanks.

Wednesday, June 23, 2010

Always Waiting.

I feel like lately, I am always waiting. Always waiting for something to happen, for something to work out, for something to become ok. Always waiting.

One thing I am waiting for is for my manager to find us a new contract so I can get back to work. It sucks that our candidate didn't win in the elections and therefore we lost our contract. I really hope he finds something...if he doesn't I don't know what I will do. This job is perfect for me, it's a work from home and I can basically build my own hours. It's perfect for a spoonie. But I just don't know how much longer I can wait. We don't have any money, and things are getting tough. I've looked at "regular" jobs, but I just don't see myself being able to handle any of them. *sigh*

One thing I'm waiting for money for is to get a membership at a pool or a season pass to the beach. Everyone says that swimming is great exercise for fibro, and easier on the body then most other exercises. I need exercise so bad. My body is so weak, and I've gained alot of weight. I need to do something, and I feel like this is the best bet. I just wish it wasn't so damn expensive to do so. Has anyone had any luck finding cheaper ways of doing this? Will you share please?

Another thing I'm waiting for is my thyroid medication to get in and work. I was told it can take 4-6 weeks, and it's been 3 weeks today. There are some days I think it is working, because I can stay up for the whole day....but there are other days when I sleep so much it's ridiculous. I mean sure, I know I'm still going to have some fatigue due to Fibro, but my doctor seems convinced that this is going to actually make a difference, so I'm holding on to the hope. And waiting.

And as much of a downer as this makes me know what I'm waiting for the most? For things to get better. That's really all I want.

Wednesday, June 16, 2010


Ugh. I'm just so sick and tired of living my life like this. Like what, you may ask? Living it with fibromyalgia and all the other diagnoses I have. I honestly do feel bad saying all of this, because I know there are many people in this world who are worse off then me, and it makes me feel guilty, but at this point, I just can't help it.

I'm sick and tired of being sick and tired. I'm tired of people not understanding what I'm going through and not believing that there is nothing wrong with me. I'm tired of being 21 and feeling like I am at least 80 most days. I'm tired of not being able to go out and have a good time without paying for it later. I'm tired of constantly being in so much pain. I'm tired of being so tired that sometimes I can't even get out of bed. I'm just so worn out...both physically and emotionally.

My life really isn't my own anymore. It's like its been taken over by some kind of horrible monster, and it's left me with this, which some days I really can't even call a life. And I try to hold on to hope that someday it will get better, and maybe someday they will find some kind of effective treatment. But really, what if they don't? Do I really have to live like this for the rest of my life? I don't want to. I really want my life back, is that really too much to ask? Sometimes I feel like it is, since it never happens.

I try to be a positive person, I really do. And I try to stay strong. But it's hard to do these things when you're faced with all of this. Sometimes, I just can't help but get down about it. I mean, who wouldn't? It's so hard to be upbeat and act like everything is going to be ok when you really don't know that. Sure some things will be ok but I will always have these problems. It will always be like this for me. How can that NOT get me down?

I'm trying, I really am. But sometimes, I just feel like I'm not strong enough for all of this anymore.

Wednesday, May 12, 2010

Fibromyalgia Awareness Day

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

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.

Sunday, February 28, 2010

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),


My little cutie :)

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! :)

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?

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

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