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.
Thursday, November 11, 2010
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
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?
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.
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.
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 sound...you know what I'm waiting for the most? For things to get better. That's really all I want.
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 sound...you know what I'm waiting for the most? For things to get better. That's really all I want.
Wednesday, June 16, 2010
Venting.
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.
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.
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