Blog Award Recieved!

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

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

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

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

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

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.

"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

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...

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

(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

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?

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.

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.

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

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

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.

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

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

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

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