Sarah's Life - Living With (And Beyond) Fibro

Blog Award Recieved!

2011-08-30T17:27:00.001-04:00

As some of you may have noticed, there is now another image on the side of my blog. It is for being number 35 in their list of "100 Best Sites for Fibromyalgia and Chronic Fatigue Information." This was given to me by a company called VitaSciences. While although it appears they are trying to sell a product, it is also very wonderful that they took the time to make this list to help us find information.

It seems as though this list was compiled back in May in honor of Fibromyalgia Awareness Week. (I always thought it was just a day, but what do I know?) However, I did not get an email about this until just a few days ago.

Here is an excerpt from the page: "In honor of Fibromyalgia Awareness Week, we’ve scoured the web and compiled a list of 100 great websites for people who suffer from Chronic Fatigue Syndrome (CFS), Fibromyalgia and other chronic pain disorders. Below is a conglomeration of personal blogs, government sites, forums and medical pages- some are funny and insightful, some provide lots of great tips on coping with the pain in your life, and some are inspirational…all are gems that we know you will appreciate."

Lastly, here is where you will find the complete list: 100 Best Sites for Fibromyalgia and Chronic Fatigue Information

Stress Overload

2011-07-30T20:22:00.000-04:00

I am completely and 100% in stress overload mode. If there was something to go wrong, it has in the past few days.

The biggest problem, is, of course related to my medical care. My insurance copays are going up, like ridiculously. Some of my medications are going to be $75! My doctor copays are going up a lot too, different amounts depending on what type of doctor/specialist they are.

I have finally started to get a network of doctors/specialists and medications to get me feeling at least a bit better, and now I may lose all of that because I can't afford the huge copays. I already owe hundreds of dollars to various medical places.

I can not get any kind of assistance because I am a college student. (Apparently that makes you ineligible for anything and everything here in Maine.) I can not seem to find a job that I can physically handle.

This is just too upsetting. I've been depressed, stressed, and anxious since finding this out. I don't know what to do, and all I feel like doing lately is crying. It just isn't fair.

This is probably a crappy explanation of it all, but I just don't have enough in me right now to write a proper post. Feel free to ask questions. Or give advice, I'd greatly appreciate that!

The Wolf Story

2011-07-25T17:13:00.002-04:00

A man told his grandson, “A terrible fight, between two wolves, is going on inside of us. One is evil & represents hate, anger, arrogance, intolerance & superiority. The other is good and represents joy, peace, love, tolerance, understanding, humility, kindness, empathy, generosity & compassion.”

“Which wolf will win?”, the grandson asked.

The old man replied, “The one you feed.”

ER Trip and Another Worry

2011-07-20T15:21:00.000-04:00

So last night, after dinner, I had trouble breathing. It felt like my throat was swollen. I kept feeling like I had to swallow, and if I didn't, I felt like I was suffocating. But when I did swallow, it was nearly impossible to gain my breath back. After awhile, I was pretty much hyperventilating. So off to the ER we had to go. We get there and tell them what is going on. The ER was a madhouse and so I still had to wait for ages. I was getting dizzy and lightheaded. Eventually, (and seriously I had to wait longer then I should of when I couldn't freakin' breathe!) they got me back and into a bed. The visit was horrible and they were slower then ever before. But to make a long story short, there was some inflammation in my throat but nothing overly major. They gave me two days worth of Prednisone in order to bring the swelling down. They also gave me a nebulizer treatment which helped my breathing. Lastly, they gave me an albuterol inhaler to go home with, in case something like that happened again. (Of course, it took about 45 minutes to get the albuterol from their pharmacy.)

It feels better today. Swallowing is still a tiny but difficult, but much better then last night, and I can breathe normal again, which is obviously a good sign. Here's the funny thing though. I feel so much better in general. (With the exception of not much sleep last night, which they told me might happen due to the medicine in the nebulizer and the prednisone.) But I feel less pain, more energy, I feel less heat sensitive, etc. This actually scares me. The only connection I see is the prednisone, and that worries me that maybe I have something autoimmune. But then again, it's probably too soon to tell and it could just be a coincidence. Who knows.

On the good news side, I am seeing a new PNP on Monday, who is going to help me find a new PCP. Although I do still feel guilty about doing it, it's what I need to do for myself. It has just gotten to the point where I don't see any other options.

Well, that's it for now.

Hope everyone is having a spoonful day :)

Ch-Ch-Ch-Changes

2011-07-18T21:32:00.000-04:00

Hey everyone,

I've updated this blog a lot, including adding some pages! I also have a new template. Would you all mind checking it out and letting me know what you think? I also would love ideas/suggestions for new/different things!

Actual blog post coming soon.

Thanks,
Sarah

"healKick: Support and Friendship" - Guest Post by Rachael

2011-07-15T15:37:00.006-04:00

First of all, I want to thank Sarah for letting me hijack her blog today. My name is Rachael and I met Sarah at healKick.com which just so happens to be exactly what I want to talk to you about today! It’s a social network for young people who have neuro-immune illnesses like Fibromyalgia, it’s like a support group but it’s so much more.

Have you ever felt alone, like no one understands what you’re going through? Have you lost friends since becoming sick? Do you struggle to find peers you can relate to? This used to be the story of my life. I have been at least marginally sick for the majority of my life but the symptoms didn’t interfere with my life until I was 14. After being diagnosed with Fibro (and other conditions) it was hard not to feel completely different than my peers. After all, they could seemingly do whatever they wanted, whenever they wanted. They didn’t seem to suffer after a late night or ache for days after overdoing physical activity. I tried my hardest to fit in, to suck it up, to do what they did. In the end I had to take a step back and realize that in order to heal I had to take time off and let my body have a break. The hardest part for me was that this break involved giving up work and school, two things that previously defined me. Without them, I didn’t know who I was. Without them, I didn’t relate anymore and I lost the close friendships that I previously had.

I didn’t know if I was ever going to have close friends again until the day that I stumbled across healKick. I had tried other online groups before but never felt a connection to the usernames and comments. I wanted more human connection and I especially wanted to connect with people my own age on levels other than a shared medical problem. This site is so special to me because for the first time I feel like I am being validated as an entire person, not just a syndrome or condition. The site allows people to go beyond a conversation about shared symptoms or a new treatment and develop genuine friendships.

At the risk of sounding like an advertisement, I want to mention a few of the things that make healKick unique and wonderful. We have an instant messaging chat bar that allows you to talk to anyone on the site in a group chat or private chat. Recently we added a group voice/video chat feature that accommodates up to 20 members at the same time. You can choose the site’s language which allows users around the world to connect with one another. There is a member map you can search to find people in your area. Also there is a points system so you can earn prizes just by being an active member of the site. And every Friday we host a virtual movie night where everyone watches the same movie and then uses the IM feature to chat about it.

Like I said before, healKick is a social network for young adults 18 to 40 with neuro-immune illnesses. There are many people on the site with Fibro, but we also have members with ME/CFS, Chronic Lyme, Rheumatoid Arthritis, Lupus, Sarcoidosis, Reflex Sympathetic Dystrophy, Multiple Sclerosis, Multiple Chemical Sensitivity, and Mold-related Illness.

It’s a place that goes above and beyond a traditional support group by encouraging members to share about their lives beyond their illness and their personality rather than just their symptoms. Regular support group’s members are from all stages of life but have the same condition. HealKick is different because it brings together people with different but similar conditions who all are in the same stage of life.

If you have ever felt isolated because of your illness, you don’t have to anymore. Come join us today at healKick. It helped me and I hope it will help you just as much.

I can’t wait to meet you!

Rachael

Love This Quote.

2011-07-13T22:31:00.003-04:00

"You know as well as I do it's not about what you look like, or your job, or how successful you are. It's about having people in your life that you love and who love you... that's all that matters." ~ Grey's Anatomy

Update On My Knee

2011-06-10T15:03:00.004-04:00

So as you all know, I have been having problems with my knee for forever now. It looks like they have finally figured out what it is, but it also looks like some of the problems may actually be chronic.

The official name of my diagnosis is Pes Anserine Bursitis. It basically means that the pes anserine bursa (located right below the knee) is inflamed. While although it can be calmed down, it can also flare again whenever it pleases. When it flares it is some of the worst pain I've ever been in, even worse then most of my fibro pain. It gets to the point where just bending and straightening my knee hurts, let alone walking.

My physical therapist, Scott, has been working hard on getting it to calm back now. I don't know the names of all the different kinds of treatments he has been trying, but they are seeming to help, at least some. I just hope I don't have to go back for a cortisone shot, those things kill me, in so many ways.

I'm really not excited...just another diagnosis to add to my list, and yet even another one that can flare whenever it wants....*sigh*

Rain, rain, go away...

2011-05-22T16:02:00.002-04:00

It's been raining here for the past week and is supposed to for at least another week as well. This rain is killing me. Not only am I in lots of pain, but I also have wicked fatigue, to the point where it's hard to stay awake. I've had it now for a few weeks, but of course the rain is making it even worse.

This having no energy thing is harder for me then the pain. I feel as if I can't do anything at all. Even sitting up on the couch for too long is hard on me. Dan and I really need to be doing some cleaning as we have friends coming over tomorrow night, but where is the energy for that?

I am so tired I just feel like crying. Like all the time. It's really messing with my emotions and it's driving me absolutely crazy. I don't know what to do. I really take Vitamin D3 and a B complex. I take iron as well. I don't know what else to do or try.

Anyone have any advice?

Fibromyalgia Awareness Day 2011

2011-05-13T12:38:00.006-04:00

(This was supposed to be posted yesterday, but due to blogger's issues, it couldn't be.)

Here it is again, May 12th. Fibromyalgia Awareness Day. Awareness is SO important because so many people don't know what these illnesses are, or have misconceptions about them. They are NOT psychological, though that is the common belief. Personally, I sometimes wish they were psychological, because then maybe I could just take a pill and see a psychiatrist and be cured. But no, it really isn't that easy. Another reason awareness is so important is because maybe it will help inspire people to do more research, and hopefully even find an effective treatment or cure. Awareness is also important because we have an "invisible illness" and people cannot tell we are sick just by looking at us, which often tends to make people believe that it is not real. Many doctors still don't believe it is real either, because there is no simple test to confirm Fibromyalgia, it is a diagnosis of elimination.

So, what did I do this year? Well, I did a couple of things. First of all, I wore my Fibromyalgia T-Shirt that I had gotten free from Vistaprint. I also participated in a balloon release. I only got three balloons, as I couldn't afford many, and also didn't want to do more harm to the environment. I wrote on them. They all said, on one side, "Fibromyalgia Awareness Day, May 12, 2011" and then each had their own writings on them. One was for Felicia Fibro because she wasn't able to do it herself, and her's said: "Hope is my future." I also had one that said "Hope for a cure" and the other one said "I long to be free again" which is a quote from a fantastic song written for awareness. Dan and I took them to the park and set them free. We clipped the strings from them, because I had read that those are the worst part for the environment. It was hard to take pictures of them as they flew away, but we did our best. Other then this adventure, I mostly posted lots of things on facebook and twitter.

Fibromyalgia is truly a debilitating disease. I am currently unable to find a job that my body can handle, and even though I now go to school online, that can be hard as well. The main parts of it are chronic fatigue and chronic pain, but honestly, that is just the beginning. Another big problem I have with it is the fibro fog. Someone can tell me something and I might forget it as soon as 5 minutes later, or sometimes something simple will really confuse me. It is very frustrating. I am only 22 years old and often feel as if I am at least 80. Fibromyalgia has taken many parts of my life away, and I can truly say that my life is not the same as it used to be.

Here is a link that might help you understand some symptoms: http://www.webmd.com/fibromyalgia/understanding-fibromyalgia-symptoms

Do you still have more questions? Ask me, I'm always here and willing to answer.

Also, if you or a loved one suffers from Fibro, what did YOU do for awareness today?

Last, but by no means least, I wanted to share a video I made for Fibromyalgia & CFS/ME Awareness. It looks better on youtube though, so here is the link: Fibromyalgia & CFS/ME Awareness Video.

The News of May 1, 2011 - My Thoughts

2011-05-02T15:15:00.003-04:00

Last night, I was bored and on twitter. I started seeing all these tweets about how President Obama was going to make a speech about a national security development at 1030pm. My first thought was, "what can be so important that he announces it late on a Sunday night?" Then my thoughts turned to fear. I wasn't sure what was going on, but I thought it couldn't be good, and must be some kind of emergency or something. I turned on CNN and started watching the news. The reporters were sounding like it was something huge, and that we should be prepared for whatever he has to say. My fear kicked in even more. After waiting over an hour, President Obama finally made his speech at 1130pm. He announced that Osama Bin Laden was dead, and that the US had completed a high risk mission in order to do this. I was still on twitter, and the amount of tweets I saw about this was astounding. Many people rejoiced, many people made jokes, and many people seemed outraged. I continued watching the news, and saw how people had gathered at the White House to celebrate and also at Ground Zero. People were chanting "USA! USA!" and were singing the national anthem. The amount of patriotism at the time was intense. I honestly kinda wished I was in either place to take part in this. I can only imagine how it must have felt to be in the middle of it. Several people spoke about how it finally brought some closure to the horrific event of 9/11.

I wish I could say that this is the end. But it's not. We still have to worry about Al Qadea planning a retaliation. I don't believe that they will take this sitting down. And honestly, that scares me to death. Obama said in his speech that they are preparing for it just in case, but honestly, how much can you prepare without knowing where they are going to strike?

Even if Al Qadea is too weak to plan a retaliation now, there is still terrorism. This is not going to end it. I wish it did, but it doesn't. It's also not the end of the war. I don't foresee them bringing our troops home because of this. The United States is always sticking their nose where it doesn't belong and always getting into wars.

This is big news for America, and don't get me wrong, I feel relieved that he is gone. But it just isn't the end, no matter how much we all want it to be.

Have you seen this?

2011-04-30T21:56:00.003-04:00

In case you haven't seen it, I wanted to show you all the tattoo I got for Fibromyalgia awareness. A purple ribbon with the word HOPE also in purple. We all need to keep hope, keep hope that one day there will be a cure. And of course, we all need to keep hope in general.

Update-ish.

2011-04-28T14:33:00.003-04:00

Well, I still seem to suck at updating this blog. Go figure, right?

So, my heart murmur is gone. Apparently it was the Trazadone that was causing it. Isn't that a scary thought? A medication that they gave me to help me sleep was screwing with my heart. I always knew that medications could be dangerous, but wow, I've never really had it happen to me.

A lot has gone on this month, and there is a lot that I really just don't want to talk about on here. Some of you know what's gone on, and I really want to thank those of you who have been there for me through it all. I really appreciate it. You all are the best! And in case you're wondering, I'm pretty sure things are getting better.

My friends Nicole & Jess came up this past weekend and it was a lot of fun. They live in NY/NJ so I don't get to see them very often. We did a lot of touristy stuff and had a good time. Boy did I pay for it afterwards though! I think I'm STILL in a bit of a fibro flare from it. But it really was worth it. I think that sometimes we have to do what we want/need and then pay for it later. I can't live my life doing nothing. I really think I would absolutely go crazy.

I'm starting back into counseling. I finally found a place that will help me out with my ridiculous copays. I met with Jodi today for the first time, and she seems awesome. She actually has Crohn's Disease herself, so she understands chronic illness, which is amazing. Not that I'm happy she's chronically sick herself, but it helps so much that she completely understands. I'm going to be seeing her weekly, and I'm actually happy about this. I hope to get myself feeling better.

Well, I guess that's it for now. Hope everyone is doing well!

There's Always More.

2011-04-01T15:05:00.003-04:00

Well, I've been having more issues, but really are we surprised here?

I ended up having to go to FirstCare the other day because I was quite sick. I was dizzy, lightheaded, nauseous, unsteady, weak, felt dehydrated, etc. The doctor first thought I had developed diabetes, but my blood sugar was in normal range, so they then decided it must be side effects from the trazadone, since it had only been a week since I started. So on their instruction, I stopped the trazadone that night. Since it didn't really help with my sleep anyways, it wasn't that big of a deal. I felt better the day after, but now I'm starting to feel like that again. I have no idea what is wrong with me this time. And to be quite honest, I don't think anyone else does either. Back to my regular dr I will have to go at some point, oh boy.

Also at this last appointment, the doctor discovered that I had a heart murmur. He obviously must not of thought that it was anything to be overly concerned about, because all he told me to do was talk to my regular dr about it. But still, seriously, another thing wrong with me? *sigh*

Not Quite As Bad As I Thought

2011-03-31T12:57:00.003-04:00

So my doctor appointment didn't go quite as bad as I thought, though it still wasn't great by any long stretch of the imagination. I told him that I was not ok with the thought of weight loss surgery, and that I would rather try to lose the weight on my own. He didn't seem too pleased, but he agreed. We have a 6 month goal, and I need to try to get to a certain number by then. If I haven't, he wants me to reconsider the surgery. I told him I would, but I still don't think I'll ever go with it.

So I'm gonna try doing my DDR workouts again. I love that they have the workout mode, because it shows progress that I'm making, plus it's not as boring as most exercising can be. I'm still not excited though, because last time I tried this it made me feel so crappy. But I'm gonna try to start out very slowly and slowly build up.

I still didn't get my referral to the rheumy though. But he didn't necessarily say no. What happened was that he didn't even give me the chance. Once we discussed the weight thing, he pretty much assumed the appointment was over and left. But, his receptionist came up with the idea that I should call the rheumy's office and have them send the paperwork down to the dr. So I did just that. Not sure if it's gonna do any good yet, but we'll see.

Keep your fingers crossed for me!

Nervousness

2011-03-22T18:36:00.003-04:00

My next appointment with my regular doctor is tomorrow. I'm not usually nervous about my appointments, but this one I am.

At my last appointment, I asked him for a referral to a rheumatologist because my fibro is not even close to under control. My fatigue is ridiculous, not much of anything helps me sleep, and I'm constantly in pain. I have to do something to try and feel better, as much as I can. He basically flat-out refused and just told me I needed to have weight loss surgery, and that would cure about 90% of my fibro issues. This is complete bullshit! There are people who are very skinny that still have fibro, and besides, I've been losing weight slowly on my own anyways, and that's the healthier way to do it. This has frustrated me to no end.

It made me think that I should find a new doctor, which I have been trying to do. But, different factors, mostly my insurance, is making it incredibly difficult. Only certain doctors are covered, plus I'd have to switch to the new doctor right away, before I even got to talk to them. That makes me completely uncomfortable. What if a new doctor would be just as bad or worse? And all my referrals would be missed up, my scripts would be messed up, etc. So basically my insurance is just making a difficult situation even more difficult.

So tomorrow is my appointment with him. I am going to tell him that I am not doing the weight loss surgery. I've heard enough about it to scare me. And apparently you can't take your meds for a while after? No way. I refuse. I'd never function then. I'd have migraines 24/7, my trigeminal neuralgia would flare constantly, my anxiety level would be insane, I'd have so much pain, and would never sleep. No, I absolutely refuse. I don't know what he'll say or do after I tell him this. I want to ask again for the referral, but I don't know how to go about it. I don't know to convince him. *sigh*

Update.

2011-03-14T15:37:00.003-04:00

So, I'm gonna try to do better at writing in this blog, let's see how it goes.

Physical therapy is going well. Scott is so knowledgeable and so great. He knows what he is doing, and actually takes the time to explain things. Not only that, he understands fibro, and has actually done a lot of research on it. It's very nice to have someone who understands. I told him that I wish he was a doctor so he could treat my fibro, lol. He's doing great work on my knee as well, I can tell a difference already.

Speaking of my knee, I am so annoyed at the orthopedic surgeon who I have been seeing for my knee. At my last appointment with him, he had told me that it was just bursitis, gave me a cortisone shot, and sent me to PT. Apparently, there is also another issue. My kneecap is out of alignment, meaning that when I bend and straighten my knee, it basically grinds against cartilage that it's not supposed to, hence the pain. The ortho wrote that it in the notes to Scott, but never told me. It annoys me to no end that he didn't tell me everything. Believe me, he's gonna hear about it at my next appointment with him.

I'm also thinking about trying to doctor search for a new primary care doctor, but with my insurance and everything else, it's way more complicated then it should be.

I guess that's about it for now, hope everyone is doing well!

Trying To Be Normal

2011-02-17T15:18:00.003-05:00

I've been trying to be "normal" lately, as in, doing all the things that other people can do. Dan and I have been doing some crazy cleaning because my mom is coming to visit. It's so exhausting. I've been way over-doing it lately, and seem to be in a flare most of the time. But what am I to do? Things have to get done whether I can do them or not. It doesn't matter. Dan can't do it all himself either. He has joint issues so he's in pain a lot too. We just have to do it, push ourselves, and end up making ourselves worse. It's my attempt at being normal, and I'm failing drastically.

In other news, I have been shaking a lot lately, like my fingers are shaking. I don't know what's up with that. Yesterday it was so bad that I actually felt sick. I ended up eating chocolate and drinking gatorade. I wasn't sure if it was low blood sugar or dehydration, so I tried them both. One or the other, or both, worked. My guess would be dehydration, because that happens to me a lot, plus I've never had trouble with blood sugar. So idk.

I'm back in PT for my knee. I'm seeing a new therapist because the last one was horrible and didn't even believe in fibro. This one believes in it and has experience in it, so I think it'll help. He wants to try this thing called "Instrument Assisted Soft Tissue Mobilization" because my tissue is all stuck and whatnot. Sure, I don't care at this point, just make me better lol.

Ok, I guess that's it for now. Sorry it's been so long since an update, I'll try to do better.

"How To Be Sick" - Review and Quotes

2011-01-24T15:55:00.003-05:00

I just finished reading "How To Be Sick" by Toni Bernhard. This book is a wonderful inspirational book for those of us who are chronically ill. It is based on a lot of Buddhist beliefs but even if you are not Buddhist it can still work for you. It applies to all of us. There are wonderful tips to help get us through this new life of our's. I highly recommend this book to anyone who is chronically ill. I'm gonna leave this with a few quotes from the book that I found especially inspiring.

"You know this is the way it is. You were born and are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the way it's happening to you."

"Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrances all over the universe?"

"I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can't control what thoughts arise in the mind (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they'll blow on through soon - after all, that's what they do."

"The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes."

"Just as we condition our bodies in different ways through exercise or lack of it, so we also condition our minds. Every mind state, thought, or emotion we experience repeatedly becomes stronger and more habituated. Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configuration we have cultivated."

"May I be peaceful. May I have ease of well-being. May I reach the end of suffering.....and be free."

"If someone curses us and we have no feelings of self the incident ends with the spoken words, and we do not suffer. If unpleasant feelings arise, we should let them stop there, realizing that the feelings are not us....if we do not stand up to the line of fire, we do not get shot, if there is no one to receive it, the letter is sent back."

"When people say, "Ajahn, let's go for a beautiful walk," fine I'll go. If they don't ask, that's fine too. I don't expect a walk to be any more satisfying than sitting alone. It could be hot or windy out there. If people bring me delicious food, great. If they don't, great. I need to diet anyway. If I'm feeling good, that's okay. If I'm sick, that's okay too. It's a great excuse to lie down."

"In mind, I understand that the essence of equanimity is accepting life as it comes to us without blaming anything or anyone - including ourselves."

"If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end."

"Thoughts are just there, like the air around us. They arise but are arbitrary and not reliable. Most of them are just rubbish, but we believe them anyway."

"Language...has created the word "loneliness" to express the pain of being alone. And it has created the word "solitude" to express the glory of being alone."

"If you're suffering due to being alone so much, it might help to recognize that being alone in and of itself is not necessarily a negative experience. It's a neutral state - to which we add the desire for things to be other than they are (for example, to have company)."

"Lonely is a funny thing. It's almost like another person. After a while it will keep you company if you let it."

"In sickness or in health, my heartfelt wish is that you be peaceful, have ease of well-being, reach the end of suffering, and be free."

A Few Cruise Pictures

2011-01-04T20:53:00.013-05:00

We got back from our cruise a few days ago...it was an awesome time! Florida and the Bahamas were great, and so was the ship in general. Warmer weather was nice too! I just thought I'd share a few of my many pictures with you all. :)

The pools and hot tubs on board the ship.

Dan and I at dinner one evening.

I absolutely love palm trees.

Look at how pretty and blue that water is!

Our ship - Norwegian Gem

Dan and I lounging at the beach in the Bahamas.

Beautiful sunset in the Bahamas.

A chocolate Norwegian Gem at the Chocoholic Buffet

The dolphin that I just had to buy - I love dolphins!

Dan & I on NYE...don't know why he has a funny face lol.

Like I said, that's just a few of my many pictures, if you'd like to see more, visit my facebook photo album. http://www.facebook.com/sarahbear9708

Fulfillment.

2010-11-18T17:08:00.004-05:00

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?

It's Been Awhile....

2010-11-11T17:56:00.003-05:00

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.

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

2010-08-27T15:46:00.003-04:00

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

Life goes on.

2010-08-13T13:30:00.003-04:00

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?

Yesterday's Adventures

2010-07-22T14:25:00.000-04:00

(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.

30 Things About My Invisible Illness You May Not Know

2010-07-10T23:04:00.002-04:00

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.

Always Waiting.

2010-06-23T14:20:00.004-04:00

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.

Venting.

2010-06-16T17:57:00.002-04:00

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.

Fibromyalgia Awareness Day

2010-05-12T17:05:00.003-04:00

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

Not Feeling It.

2010-04-20T18:26:00.000-04:00

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.

A Letter From Fibromyalgia

2010-02-28T14:44:00.001-05:00

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

My little cutie :)

2010-02-28T00:03:00.003-05:00

Good News!

2010-02-07T15:36:00.000-05:00

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! :)

One Thing After Another....

2010-01-26T21:06:00.004-05:00

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?

Butterfly (She Flies Alone) by Journey

2010-01-21T22:46:00.000-05:00

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

Fibro Feelings

2009-12-26T12:26:00.003-05:00

How Does FMS Make Me Feel?

From: http://oldghostshome.com/fibro.html

My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

My intolerance - I can't stand heat, either. Or humidity. If I am a man, I may sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

(I thought this was great and worth sharing!)

Seasonal Life

2009-12-13T19:39:00.003-05:00

Well, life is just the same really. I don't usually know what the difference is to be honest with you. I'm not even sure what I'm saying, so disregard these sentences.

I'm currently in Massachusetts until tomorrow. We came down for Hanukkah, so here we are. It's been nice...a little mini-vacation is always a plus. I've been so stressed out lately and so its needed I suppose. I'm not even really sure what's been wrong, I've just been really depressed and whatnot. And so has Dan, so that makes it even worse. When we both get upset, things just get even more magnified and worse.

Work has been a pain lately too. Only really because it's Christmas season and the place is absolutely insane. It's wearing and exhausting. As far as work goes, I really can't wait for the season to be over. Although, I will get less hours and the paychecks won't be as good...so that part sucks, but Idk. It's just a stressful situation.

I really can't wait to go home for Christmas. I haven't been to Eastport since July, and for some reason, I feel a bit homesick. Probably just because it's Christmastime, and it never really feels like it until I go home. Idk. Hard to figure out really.

My life....is...well, interesting right now I guess. I wonder if I really do have Seasonal Affective Disorder as well. Beats me, but what I do know right now is that I'm not feeling the best. Physically or emotionally. And of course, we all know that the two are related.

Well, just a short update. <3

Ignorance.

2009-11-30T14:58:00.002-05:00

So I had a Neurologist appointment today, and this is the guy who is supposed to be an "expert" in all of this sort of stuff, meaning fibro and all.

First off, I waited for 40 minutes because he was behind. (As per usual.) He finally comes in and asked me how I was doing and blah blah blah. He then told me to keep moving and keep pushing myself because my body will get used to it and build tolerance. And that was pretty much it. Literally a 5 minute appointment.

Now, the whole pushing yourself so that your body builds tolerance thing makes sense for the normal person. But let me say, if you know anything about fibro, you are NOT supposed to overdo it, because you can make yourself sicker. Or even worse, hurt yourself. What does this guy think? Does he really know NOTHING about fibro? Is he really that ignorant?

I guess its time to do some doctor searching again. *sigh*

I love this quote.

2009-11-18T19:22:00.000-05:00

Disappointed.

2009-11-04T13:23:00.002-05:00

Last night, I sat and watched/read the poll results as they came in. I saw in disbelief people in this state reject gay marriage. I watched the numbers creep in, and became more and more sick as they did.

I am disappointed in my state, the people in it. How can you be so cold? Does equality mean nothing to you? Do you really not think that everyone should be treated equal? Shouldn't mariage be more about love then what genders the couples are? And why should you even have a say as to whether someone can get married or not? What gives you that right anyways? How can you take away a right that everyone should be able to have? Do you not care how many hearts you are breaking? You know, when it comes right down to it, I think that's part of the problem. I really think you don't care. You're selfish. As long as it doesn't effect you, you just really don't care.

I've never been so ashamed to be from Maine. But rest assured, I DID #VoteNoOn1.

Frustrated

2009-10-28T17:21:00.004-04:00

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.

<3

Unwell - Matchbox 20

2009-10-23T01:41:00.003-04:00

[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 be...me

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

October 19, 2003

2009-10-19T13:32:00.001-04:00

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.

Lyrica/Neurontin Update

2009-10-16T22:16:00.003-04:00

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

Thought This Was Worth Sharing....

2009-10-13T16:55:00.002-04:00

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."

Fibromyalgia - The Real Monster

2009-10-08T11:41:00.003-04:00

Fibromyalgia - The Real Monster

ChronicPainConnection.com

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)

Gotta Love Life....

2009-10-04T15:08:00.001-04:00

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.

<3

Movie List

2009-10-02T15:43:00.003-04:00

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
4. RENT
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. :)

Savella and Pain Update

2009-09-29T16:22:00.003-04:00

Ok. So here is an update on I've been feeling and such lately.

The Savella has been interesting. When I first went up to full dose, I had weird side effects, and what I called a "shifty" feeling. It was a really horrible day. But it got better and started to go away, so I felt better and continued the dose.

I feel like the Savella is helping with the pain. I really do. It was rainy here the past couple of days and even that didn't make immense pain like it usually does. It could be a coincedence, but I really don't think it is. And even on normal days, I don't feel as much pain. I am still sore, but not really in pain as much, if that makes any sense.

The problem I have found with stopping the Cymbalta to switch to Savella though has been my emotions. I'm like a rollercoaster. Not an extreme one though. But sometimes I just seem to get really anxious or whatever, and up freaking out/crying. I've always had anxiety though, and I think the Cymbalta was helping it. The Buspar I'm on doesn't seem to do much of anything for my anxiety anymore. But I don't like these random crying "fits," they aren't like me at all.

So there's the update on how I've been feeling and such. Have a doctor appointment tomorrow. Dr. Winn wants to check my fibro tender points and see if the Savella is helping, and he is gonna give me some free samples of it to save me money. I'm so glad he's so good with giving me samples!

That's it for now...hope everyone is doing well! <3

Fibromyalgia Pronounced "Real Disease"

2009-09-27T22:30:00.001-04:00

Fibromyalgia Pronounced "Real Disease"

Neurologic signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo

NEW YORK (Reuters Health) - Fibromyalgia isn't
all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body
of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms.

In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.

These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that
much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

Copyright © 2009 Reuters Limited.

Quotes

2009-09-26T12:06:00.003-04:00

Since I've been realllly bad and not updated my quotes journal in forever, and nobody probably checks it anymore, I think I'm just gonna post some quotes here. Enjoy!

"A true friend never gets in your way unless you happen to be going down." ~ Arnold H. Glasgow

" Everybody is gifted; it's just that some people never open the package." ~ Unknown

"You can fail so very often. But you are not a failure until you give up."

"Never be afraid to try, remember...Amateurs built the ark, Professionals built the Titanic." – Unknown

"A hug can lift pain and worries from the heart. Bringing hope and love back into the heart". - Nicole Strange

"Go for it now. The future is promised to no one." - Wayne Dyer

"Why are trying so hard to fit in, when you're born to stand out" — Oliver James

"God gives us dreams a size too big so that we can grow in them." ~Unknown

"It's hard to beat a person who never gives up." ~ Babe Ruth

"Love is not finding someone to live with. It's finding someone you can't live without." — Rafael Ortiz

"Never let anyone tell you that you can't; show them that you can." — Gloria Mallette

"Love is not blind; it simply allows us to see the beauty in everything."— Michelle D. Pierce

"There is nothing more beautiful than believing in yourself."— Sam Kao

"When you love someone you let them take care of you."— Jodi Picoult

"Problems are not stop signs, they are guidelines." ~ Robert H. Schuller

"Anyone can hide. Facing up to things, working through them, that's what makes you strong." — Sarah Dessen

“If you really want to do something, you’ll find a way; if you don’t, you’ll find an excuse.” - Frank Banks

"There is no exercise better for the heart than reaching down and lifting people up." — John Holmes

"Life isn't a matter of milestones, but of moments." - Rose Kennedy

“Just as hope rings through laughter, it can also shine through tears.” ~ Maya Angelou

So Bad At This...

2009-09-21T23:09:00.003-04:00

I'm so bad at updating this blog lately. I'm just so exhausted and don't ever seem to have the time or energy to do it. But it's been long enough now, so here it goes.

I got a job. I'm now a Sales Associate at Toys R Us. As far as that type of job goes, it's pretty cool, and I absolutely love the people I work with. Everyone is good friends and talks and jokes and whatnot. Makes the work environment much better, especially compared to my last job at East Coast Marketing. The only downside though is that it is EXHAUSTING me. I feel dead after every shift, and usually end up feeling sick during work. I get so tired. And tonight, my pain has been extreme. But there really isn't much I can do about it. We need the money, so I have to endure.

My doctor has put me on Savella, which I'm hoping will make some kind of difference. So far I'm not on the normal dosage yet, I'm still on the increasing dosages. Or however you word that. I haven't noticed too much change yet, though I haven't felt any negative side effects either, so that's a plus. I just hope it really does make some sort of positive difference, because honestly, I'm going crazy.

I'm also really upset that my facebook group hasn't taken off like I had hoped for it too. Don't get me wrong, many people have joined, but donations are at a minimum. I know times are hard, but I'm just so frustrated. I really really really want/need this treatment, and I just have no way of getting it. I'm not mad at anyone, just at the situation. I don't feel like its fair that I can't get the treatment that I need in order to live my life.

Well, that's it for now. Just a short update.

<3 you all!

Complaining

2009-09-12T16:17:00.003-04:00

Ok, so this post needs to be done, because I can't stop complaining lately it seems, so maybe if I get it out on here, it will help me shut up about it! lol.

But seriously, I just haven't been feeling life lately. I feel so crappy most of the time, whether its extreme fatigue, extreme pain, or both. I feel like my body and my life is not my own anymore. It's like it has been taken over by some horrible creature or something. I have so many ambitions for things I want to do, and then never ever seem to have the energy to complete them. Sometimes even simple things like getting out of bed is too much for me. What kind of life is this? Seriously, what did I do to deserve such a horrible thing happening to me?

I'm not one who wants people to feel sorry for me, or to pity me, I'm really not. But sometimes I just wish people would understand. People just don't understand what its like. And so many people think that its just all in our heads. I WISH! I wish it was something all in my head so that I could just go to a psychiatrist, get counseling and medication, and then it would all be gone! That's so much better then knowing you have to live with this for the rest of your life.

And while I'm on that topic, isn't that just a cheery thought? I have no real hope for this to get better or to go away. I try to remain hope that they will find a cure or just an effect treatment in my lifetime, but really, what if they don't? I have to live like this the rest of my life? How is that even living? I know I sure don't feel like I'm living most of the time.

I want help, and I need help. I need to go see specialists. Too bad that the closest one to me is forever away and not covered by insurance. No way in this world I can afford that. So oh well. I'm just stuck. Stuck living a life that I don't want. Honestly, all I really want is my life back, is that really too much to ask?

When You See Me - Fibro Poem

2009-09-05T18:29:00.001-04:00

WHEN YOU SEE ME

by Mary Hastings

written May 2003

When you see me on a "good day"

I may look as if nothing's wrong,

But I, myself, am very aware

That the energy won't last long.

You may think that I am lazy,

Or I just don't like to try,

Or maybe I am just depressed,

When sometimes you see me cry.

You may not understand me,

It's not easy to explain,

The struggles that I so often endure,

As I live each day in pain.

People may offer their opinions,

Thinking that I just need some advise,

Yet they don't really comprehend,

Although they are trying to be nice.

What for some may be so easy,

Is almost impossible to me,

But because I may look healthy,

Many around me fail to see.

Perhaps it seems that I'm sloppy,

If I would only take more pride,

It's sad that many don't stop to see,

The person who is inside.

Planning things is so hard to do,

With each day uncertain fate,

The best that I can do is try,

And oftentimes I have to wait.

Life can be so stressful,

Even when you have your health,

Many people cannot even imagine,

Giving up their dreams and wealth.

While some people may worry,

How to fit everything into each day,

Others of us must struggle,

To even find a way.

So often misunderstood,

Some say that is must be "in my head,"

Yet there are days that it takes all I have

To even get out of bed.

You'd think that if one is weary,

Then why not just take a nap,

But the fatigue at times is so severe,

That nothing seems to help.

I guess it would be a better thing,

If there were a little more support,

Everyone longs for acceptance and love,

As they keep their life in sort.

If I could make the world aware,

Help them to see things in a new light,

Be careful on what they base their view,

That they may receive a new insight.

Then maybe when someone else comes along,

Who is going through something unknown,

They may not feel so hopeless and scared,

And will know that they're not alone.

Whether it be a terminal thing,

Or something chronic with no known cure,

There are many processes that will be faced

In this we can rest assured.

The grieving over loss is hard,

Whatever the loss may be.

What may be just a bump for you,

Could seem like a mountain to me.

For I faithfully trust in God above,

And no matter what the future may bring,

I know that He is holding my hand,

And He's in control of EVERYTHING.

Pain....and other things...

2009-08-30T19:11:00.003-04:00

Ok, so I suppose its time for a new update, since it's been awhile.

Last week was pretty much same 'ol same 'ol. I ended up going to First Care at Maine Med for my knee on Wednesday night. They took x-rays and such and couldn't find anything. The doctor then did an exam, and he said that he thought I had bruised the bone. They wrapped it in an ace bandage, told me it would be 2-3 days til it felt better, and then sent me on my way. Oh man was I in pain.

We got notice from Dan's insurance company that his car was totalled. Not good news at all. So on Thursday we went up to Richmond to get everything out of it, which was actually alot of stuff. I didn't even realize we had that much stuff in his car! And man was that painful on my knee doing all of that work. But Dan was good as usual and didn't make me do more then I felt I could handle. Unfortunately, what I "thought I could handle" was more then what I really could.

We then went to South China for a couple of days since we were right there anyways. We stayed until Saturday and then came back to Portland. During which, my knee was still killing me, and the ace bandage wasn't helping any....in fact I feel like it was making it worse because it was cutting into the skin. (And I didn't even have it that tight!)

This morning I woke up and my knee hurt even WORSE. And it had been 4 days. I knew something wasn't right, so I decided to go back and see another doctor, because I just wasn't ok. So we went to Mercy's FirstCare and saw a doctor. She said the other doctor WAS right, that is a bruised bone, but that it def wouldn't heal within 2-3 days. She said it may be a few weeks. She then gave me a knee immobilizer to use and crutches to use in extreme circumstances. I'm glad that it was nothing serious, and that this doctor had a clue. But man oh man, the pain is so extreme and I don't have anything for it. It's worse then my fibro pain I think. But then again it's hard to tell, because it is probably both acting up.

Sooo on Wednesday I have a doctor appointment. After talking to some people, I have decided that I am SO going to put my foot down and demand a referral to a pain specialist. I don't care that he thinks I don't need to see one. I have been in so much pain for so long now, and none of the fibro meds seem to be helping, so I NEED to do something. And as much as I would hate to do so, if he doesn't oblige I will start looking for another doctor, although like I said, I would hate it if it came down to that.

Well, I guess thats it for now. I hope everyone is doing well! <3

Open Letter to Normals About Fibromyalgia

2009-08-29T18:18:00.002-04:00

There are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!".

I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean that I can stand ten minutes, or an hour. It's likely that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".

If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.

Life continued....

2009-08-25T18:57:00.003-04:00

So let's see, what is new in my life?

Well, the heat nearly killed me. I felt so sick, and I passed out numerous times. Luckily, it rained this weekend and that cooled me down some. One night, Dan and I went for a walk in the rain in the park. It was amazing, and it made me feel so much better.

I went to the neurologist on Monday, and that wasn't a huge help. But seriously, why am I surprised? He did up my Lyrica though...I'm now on 225mg twice a day. I wonder if it will help? I feel like nothing ever does. I've been in so much pain lately and so tired. My knee has still been bothering me. I fell on it like 2 weeks ago, and it still bothers me alot. I don't know if I actually did some sort of damage or not, but it def feels like it.

Umm. Mike and Shawn came to visit today, and that was nice. Our friendships have been strained numerous times, but its still there, and thats always a good thing. I really do miss them on occasion, so it was really nice to see them and catch up and everything. And reminscing about old times. As much as I love the present, sometimes I really do miss the past. Sometimes I really wish I could go back. But I do love the present. Ah. It's hard to explain.

I am going to take some classes at SMCC this semester. I am taking some online classes because attendance is really hurting my grades, and with online classes I can do my work even if I am sick in bed. So I think its a good plan. Because I really don't want to give up school, no matter how hard it really is most of the time.

Ok, thats it for now. <3

Herbs That Provide Natural Pain Relief

2009-08-22T16:19:00.002-04:00

Herbs That Provide Natural Pain Relief

By: Jacob Teitelbaum

Many natural therapies can be very helpful for pain. My three favorite pain relieving herbals are willow bark, boswellia, and tart cherry. All three of these can be found in combination in the End Fatigue Pain Formula by Integrative Therapeutics. Begin with 2-4 tabs 2-3 times a day as needed until maximum benefit is achieved (approximately 4-6 weeks) and then you can use the lowest effective dose. Let's look at these three herbals.

Willow bark is the original source of aspirin, but when used as the entire herb it has been found to be much safer and quite effective. The active ingredient is salicin, and willow bark has been shown to be effective in both osteoarthritis and back pain. People who are severely allergic to aspirin (e.g., aspirin induced asthma or anaphylaxes — which is very unusual) should not use willow bark. Like aspirin and Celebrex, it acts as a COX (Cyclooxygenase enzyme) inhibitor, decreasing inflammation. There are clearly a combination of other factors in willow bark that markedly enhance its effectiveness and safety—which can be a major benefit over aspirin and NSAIDs (e.g., Motrin®) which cause an enormous amount of gastritis and ulcer bleeding, to the point of killing 15,000-20,000 Americans yearly! The studies on willow bark are quite consistent in their effectiveness in reducing pain. Let's look at some of the research.

In one study, 210 patients with severe chronic low back pain were randomly assigned to receive an oral willow bark extract with either 120 mg (low dose) or 240 mg (high dose) of salicin, or placebo, in a 4-week blinded trial. In the last week of treatment, 39 still showing benefit at the end of 12 months despite having stopped the treatment. That lipoic acid helps in several kinds of neuropathies suggest that it is worth trying in others as well, as it is quite benign and not very expensive.

SAM-e is a nutrient produced from trimethylglycine (betaine) in combination with multiple nutrients including B vitamins, folate, and inositol. It was initially tested and found to be effective in treating depression. Researchers also noted as an aside that it improved patients' arthritis as effectively as anti-inflammatory medications (NSAIDS). A number of studies were done including one which gave 600 mg a day for 2 weeks followed by 400 mg daily for 2 years. Pain and stiffness decreased within one week and the improvement continued throughout the two-year trial. A study which reviewed seven other studies was inconclusive. A major problem with SAM-e is that it is not stable and breaks down easily, with many products not really delivering what they claim. In addition, it is quite expensive. An alternative that I prefer is to use the nutrients needed to make SAM-e in your body. Doing this in several patients (using the nutrients found in the Energy Revitalization System vitamin powder) resulted in increased blood levels of SAM-e similar to those found by taking 400-800 milligrams daily.

What Else Should I Keep in Mind for Pain?

As noted above, pain is the body's way of trying to get your attention. In addition to asking for nutritional support, pain also can be a sign that the patient needs 8+ hours of deep sleep a night, hormonal support, and to treat any underlying infections (especially yeast, parasites, and sinusitis). These and a host of other natural remedies (and how to tailor them to specific situations) are discussed at length in my book Pain Free 1-2-3! and previous articles. See our SHINE Treatment Protocol for more information on over 200 available treatments (by category), including dosing and other patient instructions. This will give you detailed information on the different therapies available for each problem and how to use them.

With so many safe and effective natural remedies available for pain, it is no longer necessary for over 50 million Americans to be in chronic pain, and tens of thousands to die each year from NSAIDs and other pain medications! Isn't it time for you to be Pain Free?

That's The Way It Is....

2009-08-20T17:12:00.000-04:00

Soooo I left off with Friday night being in South China after the car accident. For those of you who didn't see, here is what the car looked like after the accident:

So as you can see, that was pretty horrific. Anyways, the rest of the weekend in South China was alright. It was nice to be there, because I have so many memories of my childhood days there, but it wasn't very relaxing this time, even though that was what I truly needed. My dad just doesn't seem to grasp the concept that I am actually sick, and that I really can't do everything he expects me to do. Everytime I was trying to rest, he'd get me up and have me do something. It got quite annoying quite fast, and it really didn't help my fibro any, that's for sure. But on the positive side of life, I did get to see some friends and family that I don't get to see very often, and of course, that's always nice.

Mom came back to Portland with us so we would have a car and could get places. Her, Jackie, and I went to the mall one day, and that was fun. It was like a girls' day which is always nice. Other then that, we didn't get too much accomplished, but what did we need to get done?

The heat is killing me. It makes me feel so sick and just so blah. I literally can't take it. It's been way too much for me lately. I passed out again last night, but thankfully I didn't hit my head or anything this time. I guess there is a positive in every situation, lol.

Job search is going alright. I have some interviews lined up and such, so hopefully something works out, and hopefully I can find something that I can handle with this damn fibro! Gotta love it....only not.

I feel like I probably have alot more to say, but I just don't have the energy for now, so I'm gonna end this here.

An open letter to anyone who has a fibromyalgia patient in his or her life.

2009-08-16T23:06:00.005-04:00

An open letter to anyone who has a fibromyalgia patient in his or her life.

By Karen Lee Richards

If you are reading this, someone close to you lives with and suffers from fibromyalgia (FM). Since FM is invisible, many find it hard to believe that it is a real illness or that anyone could really hurt that much all the time. Unfortunately, this is one of the main reasons that fibromyalgia is so often misunderstood, misdiagnosed and not properly treated.

Fibromyalgia is a central nervous system disorder that has three primary components: pain, fatigue and sleep problems. (1) Pain – The pain may vary in intensity and location, but it is present most, if not all, of the time. (2) Fatigue – The fatigue is not like the tiredness you might feel after working too hard or overdoing it on a sports field. It's a pervasive, all-encompassing exhaustion – like someone pulled the plug on your energy source. (3) Sleep – The person with FM usually has difficulty sleeping. And even when they do finally sleep, they never reach that deep REM stage of sleep where the body refreshes and restores itself.

The root cause of fibromyalgia remains a mystery, however, it is usually triggered by some kind of trauma to the body, such as an injury or illness. In some cases, it can also be triggered by a severe emotional trauma. Regardless the source, FM devastates the life it touches. Unrelenting pain and fatigue reduces a person's ability to concentrate, perform daily tasks, work, socialize, exercise and sleep. The more severe the symptoms, the more incapacitating it can be. Fibromyalgia often leads to depression, isolation and loss of self-esteem. Sadly, people whose FM is poorly controlled may also be at increased risk for suicide.

There are four main things someone with fibromyalgia needs you to understand:

1. What they are feeling and experiencing.

If you have a difficult time imagining what it must be like to live with the pain of fibromyalgia, I'd like to challenge you to try an experiment. Take a wooden clothespin – the kind with the spring that works by pinching one end together and clamping the other end to the clothesline – only instead of attaching it to a clothesline, clamp it to the end of one of your fingers. Now go about your business and see how long you can leave it on. While you still have the clothespin attached to your finger, try to imagine how it would feel if you knew you couldn't take it off when the pain got to be too much. What would it be like to have that non-stop pain all over your body? Now think about what it would feel like to have the flu at the same time – the kind of flu where every muscle in your body aches and it takes every ounce of energy you can muster just to drag yourself out of bed. Finally, imagine that the pain and fatigue doesn't just continue for a day, or a week, or even a month, but goes on for year after year with little hope that it will end. If you can imagine that, then you have a small inkling of what your loved one lives with each and every day.

2. What they are not.

Fibromyalgia is not a psychological disorder – it is an all too real physical illness. Those who have it are not hypochondriacs; nor are they lazy, overly sensitive or just trying to get attention. And they are not simply depressed. Although depression may or may not accompany FM, it is not the cause of it. The percentage of people with FM who also have depression is no greater than for any other chronic illness.

3. Every fibromyaglia patient is different.

The differences in FM patients exist on a couple of levels. One is the severity of their symptoms. While one patient may be able to continue working, another may be severely disabled and in some cases, even confined to a wheelchair. Just because you may know someone else with FM who is functioning fairly well doesn't mean your loved one is faking or not trying hard enough. It simply means they have a more severe case.

Another big difference is how various treatments options work. What helps one person with FM doesn't necessarily help another. Also, people with FM tend to have a lot of sensitivities to medications, so it often takes much trial and error to find something that will help. We find that what works best for most FM patients is some combination of medication, gentle exercise, lifestyle changes, and often some kind of complementary treatment like massage therapy, acupuncture, supplements, etc. Unfortunately, it can take a long time to find that ideal combination.

4. What you can do.

The main thing your friend or family member needs from you is your understanding, support and encouragement. They know you can't take their pain away. They just want you to listen without judging them and let them know you care. Often people with fibromyalgia have told me that the emotional pain of having loved ones question the validity of their illness or accuse them of just being lazy is, in many ways, worse than the physical pain they have to deal with. They already struggle with feelings of guilt because sometimes they can't “be there” for family and friends as much as they'd like to be. Try to reassure them that you care about them for who they are, not just what they can physically do for you.

If you'd like to know some other ways you can help, there's a very nice and inexpensive little book that is chock-full of suggestions. Read my review of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend for a sampling of its contents.

Finally, if you'd like to learn more about FM, please check out our Fibromyalgia page at ChronicPainConnection.com and feel free to ask questions.

Best regards,

Karen Lee Richards

ChronicPainConnection Expert

My Life Gets Oh So Much Better....

2009-08-14T23:59:00.001-04:00

Well my life has just continued to get even better. But let's start with the beginning.

Thursday was an ok day. I went to that job interview, and I think it went pretty well, but I still don't feel very confident about it. I didn't realize it from the ad, but its a really high-end luxury store. And I just think it wouldn't be a good fit for me, nor am I sure I could deal with such a stuffy environment. Idk, we'll wait and see if I actually get a position and worry about it then. In the meantime, I'm applying for more jobs.

Other then that, Thursday was a pretty quiet day, which was actually quite nice.

This morning I got up and went to my Reiki session. It was amazing as always. I can't get over how much better it always makes me feel, and Leslie herself is just amazing as well. She's so helpful and so great to talk to. After that, Dan and I started packing for our weekend in South China.

We got on the road and things were going fine. We were a bit over halfway there when things changed. We were just driving along on the highway and there was a car fully stopped ahead of us. No matter how hard we tried, we just could not stop in time. The brakes were slammed on but it still just wasn't enough. We hit the car in front of us which happened to be a big pickup truck. Luckily by then, we were not going TOO fast. The impact was still strong though, but luckily we weren't hurt.

To make a long story short, the towing guy took us to the garage too, and my mom came to pick us up and brought us back to South China. So now we are here, trying to make the best out of what's left of our weekend away, and trying to relax a bit before we have to deal with everything on Monday.

Well, I'm off, I'm beyond exhausted! Maybe I will actually get some sleep tonight?!

As Life Goes On....

2009-08-12T22:15:00.001-04:00

So I ended my last post Monday evening. Things were going good at that point, until later on that evening. It got really hot and humid, and it made me incredibly sick. I hate having such bad heat sensitivity. It was alright for a while because Dan got me an extra box fan in addition to the ceiling fan we have in the bedroom. But then I had to get up and go in the other room for something. On my way back, the heat really got to me and I passed out. I hit my head when I went down. When I woke up, I had a wicked headache, and was dizzy for a few minutes. I was nauseous as well. But I felt better within a few mins so things were ok.

On Tuesday, I went to the chiropractor again, which was a miracle because my neck was really messed up, I'm assuming from the fall, but I'm not really sure at all. But yet again, it helped tremendously and I'm glad I went. Tuesday night Dan's parents came up for a visit. They came over and saw our new apartment, they seem to really like it. They then took us out to dinner. I had chicken alfredo, and it was really good as usual. I'm such an alfredo person.

I didn't get sleep last night. Or if I did, it surely wasn't enough. I have been so exhausted all day. Today I cut up my credit cards after making payment arrangements and such. This is the beginning of my trying to get out from under my debt. I'm working with Credit Solutions. Hopefully this will work out. I'm still really stressed out about the whole financial situation though. I have so many bills that I just can't afford right now. And its so hard to keep up with everything. And of course, for those of you with fibro, you know how stress makes everything worse. Oh man.

Ok, well Dan and I are watching a movie, so I'm off to enjoy that. Later. :)

Because I can't get this to work anywhere else...

2009-08-12T17:15:00.001-04:00

So I'm bad at this already...

2009-08-10T18:30:00.004-04:00

So it looks as though I am bad at keeping up with this blog already, as I have missed a few days. But I'm really really really gonna try with this one, so here's another post.

I've been sick over the weekend. At first I thought it was just some cold sort of thing, because thats what the symptoms were. But then on Sunday I seemed to have a fever. According to Dan I also passed out for like 20 minutes. WTF? Why did I do that? I guess my body just couldn't handle it anymore. I seem to be feeling better in that sense today though, so thats always a plus. I'm having a high pain day though, which isn't any fun whatsoever. I really wish I had some pain meds for it. I mean, don't get me wrong, I am scared of them because I really don't want to become addicted, but I can't deal with this pain either. It's making me pretty much bedridden, and I hate that more then anything. Next time I see Dr. Winn, I am putting my foot down and demanding he does a referral for a pain specialist. I just can't take this anymore.

Nice rant there, eh? I feel like so many of my blog posts have been rants, and in some ways I hate that, but seriously, where else am I supposed to bitch and moan? Well, ok, I do it on Twitter too. ;)

Other then pain, things seem to be ok. Dan and I are doing wonderfully. He always takes care of me and I don't know what I would do without him. I'm so lucky to have him. I couldn't ask for anyone better, and I couldn't ask for someone more helpful or caring. Even as I write this, he is making dinner. :)

Had a chiropractor appointment today, and things feel better then they did. I can definitely feel that my body is back in alignment where it should be, and I feel more balanced and even. I love how it feels right after the appointment, I just wish it would last longer and do more for the pain.

I have a job interview for Thursday. It's for a part time sales associate job. I'm not even sure if I can handle it, but all I know is that we desperately need the money, and if we don't do something soon we're gonna be in bigggg trouble. So I'm gonna try this. I really hope I get the job, and I really hope that I will be able to keep it.

Well, that's it for now I guess, time for some yummy dinner that Dan made. :)

Just not feeling it....

2009-08-07T22:19:00.003-04:00

So, this morning I woke up early, (for me), and headed to Yarmouth for my Reiki session. It was amazing as always, and again, as usual, I felt so much better. I really can't believe how much Reiki really does do for me. Anyways, I bought some isotonix mixes too, which are natural supplements to help your body. I'm glad I did it, because we all know that my body can use any help it can get, but oh man, I shouldn't of because I can't afford it at all. I wrote a check for 135 dollars and some odd cents, and there was definitely not that much money in my bank account. Why did I do such a thing? Simple. Because I want to feel better. I'm sick and tired of feeling like shit all the time. I'm sick of not really "living." (And yes, the money is now in my account, no worries.)

But seriously. I'm not sure how much more of this I can take. It sucks being only 20 years old and not being able to do things people my age do. It sucks being bedridden some days and not have a life. I'm sick and tired of being sick and tired. I hate not feeling like myself anymore and not being able to do things I used to be able. I'm only 2o years old and sometimes I feel like my life is over. This just isn't fair. I know life isn't fair, but I feel like I really can't handle this anymore. It's just really started to get me depressed. I just wish, more then anything, that I could feel better, and at least feel a bit more back to normal...that would be so nice.

So other then that rant, I'm doing alright. I'm just sorta having a down sort of night.

For those of you who don't believe.....

2009-08-07T00:35:00.002-04:00

For those of you who don't believe in holistic things, such as Reiki and Chakras, here is the story of the past 24 hours or so of my life.

Around 1230 or so last night, my friend Jackie called me in a panic. She told me this story of how this woman came into her work, and how she was looking at crystals and such. This woman picked one out and was telling Jackie how she knew alot about holistic healing, and asked Jackie if she would like her chakras opened. Not really believing in this stuff, but wanting to be nice and polite to this woman, she agreed. The woman told her that she was going to open her third eye chakra. After she did it, Jackie had a severe burning sensation in her head, and was seeing different color lights. She got home from work and felt weak. She kept seeing those lights, and she kept seeing things like black shadows and such. She felt like she wasn't even inside her body. She was freaking out and was scared to go to sleep. I looked up the third eye chakra online, and found that was she was experiencing was normal for it. It also said though that the lady had done it wrong, which was a very scary thing. Jackie finally went to sleep. She had horrid, vivid dreams that including her loved ones dying and weird things happening, and she could feel the pain in her head while she was sleeping.When she woke up, she felt like she hadn't slept at all, and that burning pain was still in her head. She felt like she was sick as well, like she had the flu or something. Enough was enough, so I called my Reiki practioner and talked the whole thing over with her. She said she would be able to see Jackie that day. So I took Jackie to Pura Vida Reiki (www.puravidareiki.com) in Yarmouth, and she had a session there. Leslie, the Reiki practioner, said that Jackie had way too much energy in her third eye, and removed the excess and balanced out her chakras. After the session, Jackie felt much better and back to normal! She even felt better then normal. She felt really relaxed and had no pain. She was astonished herself at what had happened, and is now a believe of holistic healing.

Still don't believe? Ask me about my Reiki stories.

Fibromyalgia

2009-08-06T00:13:00.002-04:00

Fibromyalgia-
The name is so complicated
And so is the disease.
Chronic pain, chronic fatigue,
Those are just the beginning.
Do you know what it feels like
To wake up and feel so much older then you are?
Do you know what it feels like
To not be able to do things everyone else does?
Do you know what it feels like
To not be able to do things you once used to?
Do you know what it feels like
To have the littlest things
Wear you out completely?
Do you know what it feels like
To have no one believe you are sick?
These are all things
That I feel every day.
My body is not my own anymore,
Something horrible has taken it over.
Can I ever win it back again?
Will I ever feel ok?
Will I ever feel normal again?

2009-08-05T17:44:00.000-04:00

This is my new blog. To write, vent, quote, etc. I'm not usually very good at keeping up with these things, but I'm gonna try! Here is my intro:

I'm Sarah.

I'm 20 years old.

I attend the University of Southern Maine.

I am a psychology major.

No I don't know whats wrong with you.

I grew up in the middle of nowhere.

But I'm slowly getting cultured.

I have fibromyalgia and anxiety.

But it's not gonna stop me.

I love my friends and family.

I would do anything for them.

I'm in love with an amazing guy.

I consider myself lucky to have him.

I worry alot, but at least you know I care.

I'm addicted to the internet and aim.

I'm a redhead, but I have my blonde moments.

I'm a perfectionist.

I do not like change.

I'm scared of the unknown.

But I do like new things.

I need more reassurance then people think I do.

I tend to bottle up my feelings and emotions.

I love to help people.

I like to travel and see new things.

I believe in seizing the day and living life to its fullest.

I'm pretty easy-going for the most part.

I believe things happen for a reason.

I also believe that whats meant to be will find its way.

I can be a complex person, but I try not to be.

If you want to know anything else, just ask.