Not asking for trouble... asking for help!

I understand that many people, if not most, will not understand my condition. I realize that it sometimes takes multiple rounds of explanation and neverending patience with my friends before they understand what kind of situation I'm dealing with. The same goes with work; I can't expect any coworker or boss to just 'understand' fibromyalgia/CFS and never question it... but when I do my best to bring it to their attention, with all proper documentation lined up, and with all of the information they could possibly need... only to be shut down.

My schedule change request was denied, which just means that I'm stuck on graveyard until someone else comes along and takes it. I realize it's not the easiest shift to hire someone into, and I would actually ENJOY the hours, if my body could handle the extra stress.

I have high levels of Epstein Barr in my system that occasionally spike up, causing me to have recurring bouts of Mono. It resides in my liver and will make me seriously ill if I get too little sleep, too much stress, or work my body too hard. All of which I'm accomplishing by working graveyard shifts. I'm killing myself without even trying!

I wish there were someone I could call for advice, or for support with this issue. Human Resources treats me like I'm a total waste of their time, and that I'm ridiculous for even asking for help. I have the EEOC contact process, but do I really want to escalate this issue to the state or federal level? I know retaliation is illegal, but PROVING retaliation is impossible, and I know it'll happen. It's happened to others before me, and I'm not so simple as to think she'll give me a break.

The facts are that I'm good at my job, I'm smart, and capable. This schedule diminishes my capabilities by about 50%, and makes me look simply adequate. If I got a good night's sleep, and settled into a regular schedule, I may have a shot at a normal life. Instead, I work overnight while others are sleeping, feeling my body get weaker and weaker, until I end up in the hospital for days. 

I'd really like to avoid sickness as much as I can... but there are some giant obstacles in my way. I work because I need the income, healthcare, and livelihood. I'm 27 years old and not about to bow out of the workplace due to an illness. I will get past this. I need to be given a fair opportunity to beat this, and then I can come back to work graveyards, if needed. I like my job, I like my team, and the company... but it goes to show, one person can really ruin it all. I'm somewhat appalled that the one person causing the stress hasn't been called on the carpet.

I'm all about accountability, and if something happens to me because I'm stuck between a rock and proverbial hard place... one person will be responsible.

Burden of Proof... sucks sometimes.

you don't -prove- fibromyalgia.

you only disprove everything else.

Sideways Cat says, "What's friendship?"

Wikipedia's definition of Friendship:

Friendship is a term used to denote co-operative and supportive behavior between two or more people. In this sense, the term connotes a relationship which involves mutual knowledge, esteem, and affection and respect along with a degree of rendering service to friends in times of need or crisis. Friends will welcome each other's company and exhibit loyalty towards each other, often to the point of altruism. Their tastes will usually be similar and may converge, and they will share enjoyable activities. They will also engage in mutually helping behavior, such as exchange of advice and the sharing of hardship. A friend is someone who may often demonstrate reciprocating and reflective behaviors. Yet for many, friendship is nothing more than the trust that someone or something will not harm them.

Interesting.

I like to think that I'm a pretty fair person. I'm fairly open-minded, I strive to be a good friend and listener, and I'm good people. I'm not vain or narcissistic, but I am confident. It may come across as cocky and arrogant sometimes, but when you realize that I'm actually humbled every day, by my chronic pain, you may feel differently about me. I fight my battle, and I think I'm allowed to be proud of myself for fighting the pain.

One of the things that I've focused most on, in the past year, has been cutting out relationships or people who have proven toxic to my life. I understand that there is no fail-safe way to avoid drama, it's in our human nature, I don't care what anyone says - we were born to gossip. I do my share, as I'm only human, and misery loves human flesh. Or is it company?  

Now, because I have a wide array of useless knowledge, I get along with quite a few people, and tend to make friends quickly and easily. Having a pretty face doesn't hurt the process, either... but I digress... I don't take enough time to truly get to know someone before I invest my time in a friendship (or any relationship, really) with them. It's something is new and fresh, and we can't get enough of it. We lust for it until it wilts and begins to rot due to neglect, it's not as fun anymore. The blame game begins - each blaming the other for the ruining the friendship. This has happened to me recently, and has really knocked me off balance.

Once a friend has poisioned the well, and has created drama and upset for the people surrounding them, they deserve whatever karma has in store for them. I believe "forgive, but never forget" applies in this situation, and I believe that people generally deserve what they get, in the long run. Of course, I'm speaking about someone and something specific, but attempting to relate it to the bigger picture that is my life...

I wish people would think. REALLY think about what they're going to say before they say it. If you have actually done the same thing to me that you are complaining about, then I'm not going to have sympathy, and I'm probably gonna get angry. When you whined about someone not paying rent, crashing on your couch, not complying to your 'requests', and not contributing to housework... I'd like you to take a moment to remember last March, and I'd like you to make sure that you weren't doing those exact same things to me.

 Until you realize how your actions and words can affect someone, you need to shut your mouth. You need to think really, really hard about why things went wrong, and where they went wrong, and what part YOU took in the situation. Stop blaming everyone else for your circumstances; they're nobody's fault except your own. I rarely say 'I told you so' - but with that guy, I told you so. He lied, was irresponsible, led two girls on at once, and was an ugly piece of dirt. I picked it up right away, and I was never shy about expressing my opinion, so I don't understand why you're surprised in the least. It may seem unsympathetic, but it's true, and sometimes the truth sucks.

I don't know how I can be friends with someone who thinks I'm being overly dramatic about my pain. People lack compassion for the invisible illnesses - until someone they love is affected. Then, the world is an unfair and unjust place, where only bad things happen to good people... woe is you. I have my days where I'm down in the dumps and not feeling good, but I try not to wallow in my self-pity. The "poor me" pity party thing used to work in high school, but it doesn't get you far as an adult. At some point, I had to learn to manage a full-time life on top of a full-time illness, and I just keep moving along - one foot in front of the other. There really is no other option, the way I see it. 

=)

Amendmendt to the ADA Act - January 1st!

From www.about.com:

On September 25, 2008, the President signed the Americans with Disabilities Act Amendments Act of 2008 ("ADA Amendments Act" or "Act"). The Act makes important changes to the definition of the term "disability" by rejecting the holdings in several Supreme Court decisions and portions of EEOC's ADA regulations. The Act retains the ADA's basic definition of "disability" as an impairment that substantially limits one or more major life activities, a record of such an impairment, or being regarded as having such an impairment. However, it changes the way that these statutory terms should be interpreted in several ways. Most significantly, the Act:

• directs EEOC to revise that portion of its regulations defining the term "substantially limits";
• expands the definition of "major life activities" by including two non-exhaustive lists:
  • the first list includes many activities that the EEOC has recognized (e.g., walking) as well as activities that EEOC has not specifically recognized (e.g., reading, bending, and communicating);
  • the second list includes major bodily functions (e.g., "functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions");
• states that mitigating measures other than "ordinary eyeglasses or contact lenses" shall not be considered in assessing whether an individual has a disability;
• clarifies that an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active;
• provides that an individual subjected to an action prohibited by the ADA (e.g., failure to hire) because of an actual or perceived impairment will meet the "regarded as" definition of disability, unless the impairment is transitory and minor;
• provides that individuals covered only under the "regarded as" prong are not entitled to reasonable accommodation; and
• emphasizes that the definition of "disability" should be interpreted broadly.

EEOC will be evaluating the impact of these changes on its enforcement guidances and other publications addressing the ADA.

Effective Date:

The ADA Amendments Act is effective as of January 1, 2009.

JFK could see the future!

"We stand at the edge of a New Frontier—the frontier of unfulfilled hopes and dreams, a frontier of unknown opportunities and beliefs in peril. Beyond that frontier are uncharted areas of science and space, unsolved problems of peace and war, unconquered problems of ignorance and prejudice, unanswered questions of poverty and surplus."

-John F Kennedy

JFK, you could read the future!
That's why the aliens had to destroy you via assasination!!

...Obviously.

Seriously, have we learned NOTHING since 1960?

Ok, I'll give you the civil rights movement (and act, that LBJ later signed into law). We learned our lesson there.

Or did we, California?!?!? - voting down Prop 8? Really?!?
I know I'm not the only one still outraged about it, but what can we do?

When the majority speaks, and the majority is a bunch of conservative ignorant people, I think it's time to build a new majority. Someday logic and empathy will rule in harmony, but until then, we're just another bag of bones shuffling through the lunch line.

"When God gives you lemons... FIND A NEW GOD."
-Powerthirst Commercial

What we aren't told about Gaza...

I found this interesting article about Gaza at the following link:

http://www.nytimes.com/2009/01/08/opinion/08khalidi.html?_r=1&ref=opinion

It's a great overview of the history and conflict, on a very basic level.

"NEARLY everything you’ve been led to believe about Gaza is wrong. Below are a few essential points that seem to be missing from the conversation, much of which has taken place in the press, about Israel’s attack on the Gaza Strip.

THE GAZANS Most of the people living in Gaza are not there by choice. The majority of the 1.5 million people crammed into the roughly 140 square miles of the Gaza Strip belong to families that came from towns and villages outside Gaza like Ashkelon and Beersheba. They were driven to Gaza by the Israeli Army in 1948.

THE OCCUPATION The Gazans have lived under Israeli occupation since the Six-Day War in 1967. Israel is still widely considered to be an occupying power, even though it removed its troops and settlers from the strip in 2005. Israel still controls access to the area, imports and exports, and the movement of people in and out. Israel has control over Gaza’s air space and sea coast, and its forces enter the area at will. As the occupying power, Israel has the responsibility under the Fourth Geneva Convention to see to the welfare of the civilian population of the Gaza Strip.

THE BLOCKADE Israel’s blockade of the strip, with the support of the United States and the European Union, has grown increasingly stringent since Hamas won the Palestinian Legislative Council elections in January 2006. Fuel, electricity, imports, exports and the movement of people in and out of the Strip have been slowly choked off, leading to life-threatening problems of sanitation, health, water supply and transportation.

The blockade has subjected many to unemployment, penury and malnutrition. This amounts to the collective punishment — with the tacit support of the United States — of a civilian population for exercising its democratic rights.

THE CEASE-FIRE Lifting the blockade, along with a cessation of rocket fire, was one of the key terms of the June cease-fire between Israel and Hamas. This accord led to a reduction in rockets fired from Gaza from hundreds in May and June to a total of less than 20 in the subsequent four months (according to Israeli government figures). The cease-fire broke down when Israeli forces launched major air and ground attacks in early November; six Hamas operatives were reported killed.

WAR CRIMES The targeting of civilians, whether by Hamas or by Israel, is potentially a war crime. Every human life is precious. But the numbers speak for themselves: Nearly 700 Palestinians, most of them civilians, have been killed since the conflict broke out at the end of last year. In contrast, there have been around a dozen Israelis killed, many of them soldiers. Negotiation is a much more effective way to deal with rockets and other forms of violence. This might have been able to happen had Israel fulfilled the terms of the June cease-fire and lifted its blockade of the Gaza Strip.

This war on the people of Gaza isn’t really about rockets. Nor is it about “restoring Israel’s deterrence,” as the Israeli press might have you believe. Far more revealing are the words of Moshe Yaalon, then the Israeli Defense Forces chief of staff, in 2002: “The Palestinians must be made to understand in the deepest recesses of their consciousness that they are a defeated people.”

I know someone who needs this advice!!!

http://www.cnn.com/2008/LIVING/worklife/12/22/cb.7.surprising.work.habits/index.html

Riegel says that many people "procrastinate because they are perfectionists. They put off getting started on projects because they want all the conditions to be perfect."

Workers need to remember that perfection isn't always possible and to do the best they can without getting bogged down in unrealistic expectations. Trista Harris, executive director of the Headwaters Foundation for Justice, has a simple suggestion: "Learn to let things be good enough."

Movies are so depressing...

I'm watching 27 Dresses... and I secretly love it. I have hope for my own wedding as I watch this, even though I've never really thought about what my wedding will be like. I've never been a girl who dreams about her wedding day, but movies always give me dangerous ideas.

I guess I'd get married on a beach, since I love the water and sand, the surf and nature... I'd wear a dress, because that's kind of how things go... but I don't know about white. I love red, so maybe a red dress? My mom would kill me.

Now I just want to find a someone special to fit into the picture. If only they were easy to find... or I were easier to date... or I were healthier... so many "if only"...

It's so stressful, I wonder how anyone gets married at all... I'd be so stressed out and so... manic... I'd probably lose my other half in the process. heh.

Awareness... is sexy.

This is my type of awareness...

http://polkadotgals.com/index.html

All proceeds go to benefit Fibromyalgia awareness and research.

Amazing. I'm so, so thrilled that this is finally getting press.

I no longer feel like I'm alone and insane!

Fibromyalgia Awareness!

Fibromyalgia has been recognized by the WHO as a disease since 1992, as mentioned in the list ICO-10, M-79-7, even though it is still questioned by a number of medical professionals. Fibromyalgia is a condition which is characterized by chronic pain and many other symptoms; such as morning myo-acampsia (morning stiffness), sleep disorder, chronic fatigue, and overall fatigue of muscle groups.

Now the fight is happening in Europe, but amongst the entire union. America ignores this disease, doctors treat me like I'm insane, and then they recommend clinical trials that are a) impossible to get into and b) offer no relief to at least half of the participants due to placebo replacements. I can't imagine being on a placebo for six months, with no other meds, as they require. Absolutely absurd!

I encourage anyone aware of this disease to sign the following petition, even if not living in the European union. It's a beginning, somewhere to start, and if Europe is mecca for fibro patients, then it may be time for me to make the trek home. :)

The saddest thing to me is how far behind the US is compared to the rest of the world, yet we consider ourselves to be a leader. We're no leader. We're sheep to the rest of the world. Our current president has been a prime example of a retarded sheep, though I don't want to insult livestock, so I take it back. It's just time for change, and I'm tired of waiting for it, so I'm making it happen for myself.

The website for the European petition is at: http://www.enfa-europe.eu/indexpet.php

The reality of this situation, which affects all the European countries, is that the right of people affected by a chronic disease to have a good quality of life is being ignored. It is therefore called on the medical community, national and European policy makers:

• To fight against the skepticism around this disease
• To improve the quality of patients' lives
• To put in place an individual and interdisciplinary support programmes which allows the patient to stay economically and socially independent, and further avert any form of isolation
• To ensure in-depth training of this subject in the mandatory courses of medical experts and medical professionals
• To support and assist awareness programmes that will facilitate early diagnosis and early treatment, as well as access to care at any time.
• To allocate the adequate aid for scientific research against this pathology
• To put in place an EU programme on the exchange of best practices on Fibromyalgia

With this petition, I am signing for a European Union in which the rights of 14 million people affected by Fibromyalgia are recognized.

Dear Doctor...

Dear Doctors,

First I have to say, not all doctors are included in my anger. Primarily Group Health doctors; particularly Urgent Care doctors [not nurses!]. There have been two separate nurses that actually treated me like I was human, and I find that to be the common theme. The nurses will actually LISTEN to me, while you "doctors" simply read chart notes and make assumptions about my character from there. I know the look on your face, before you open your "educated" mouth, and it sends me on the warpath.

I love proving you wrong. I love being stronger than you think I am. I love that you look at my prescription list and assume I'm a narcotic 'addict' when I'm prescribed ONE narcotic for breakthrough pain... narcotics (morphine, fentanyl, percocet, vicodin) are considered failed attempts at treatment for me. I do not get high from narcotics. I do not have a normal body. If the narcotics addressed my pain, we wouldn't be in this situation.

Then, I come down with -probably the worst- flu I've ever had. I was unable to keep anything in my stomach for SIX days. I know you're aware of how bad the flu affects a normal patient.

Do you understand that I'm not a normal patient? You sent me home -still throwing up- THREE TIMES IN ONE WEEK! Admit me to the hospital if I'm having to come back everyday just to get [2-3 liters of] fluids, you morons. I guess all of that education didn't really pay off - you're just playing by the rules of your HMO at this point. It's not about my health, it's about how much money I'm costing the hospital. Well, TREAT ME AND GET ME HEALTHY AGAIN, and I won't waste your time.

Secondly. Stop looking at me like I'm imagining my pain. If I could imagine my pain, then I could theoretically imagine it away, and trust me, it doesn't work that way.

I was sent home just as sick as I had arrived - every time I went to Group Health. I was told that I was withdrawing from narcotics and that's why I was sick. Guess what? YOU WERE DEAD WRONG. I saw 12 doctors in 3 days, and was treated like a junkie by every single one of you, and you're SUPPOSED to be here to help!

To have to fight for fair treatment in hospitals at 27 years old... I never thought my life would be like this. We all have dreams and aspirations, but I feel like mine have been erased or put on hold due to this illness. I realize I have to live with this for either the rest of my life, or until they find a cure. You doctors are supposed to be compassionate and caring, helpful but not prying. I've never experienced that with a doctor. I'm used to them hearing fibromyalgia and laughing at me.

Just because you don't "believe" in a condition - that doesn't make it any less valid. I realize that this is the problem with the American healthcare system. Even though you have insurance, doctors still reserve the right to berate and belittle any patient at any time. Human rights seem to go out the window when you're ill, and I find that to be a little... backward. All I want is to be treated with dignity and respect, and all I get is questioned and told "you need to stop taking the only medication you've ever found that will help you". Yes, dilaudid is a narcotic. I take 0-16 mg per day, depending on pain. I refrain at work because it can cloud my judgment, and I try to remain clear-headed - at least while working.

I'm sick of it. Not just because I'm tired of being ill; but because I'm tired of being treated like a hypochondriac by the medical professionals that I approach for help. My own parents didn't understand my disease until Friday night, when we got in a fight about it. I had to yell about it and reference the internet twice before they "believed" the amount of pain I was fighting through. When you have to fight your own family, it feels like any safety net or acceptance goes right out the window. It's more painful than I even realized.

I'm miserable. I'm stuck in a body I can't use properly, and I'm at the mercy of my pain - EVERY day I wake up. Eventually, just waking up is exhausting, and I just want it all to go away. I'd be a great candidate for alien abduction - maybe they can fix what's wrong with me - since you seem to fail at every turn.

I only have so much patience left. It's worn thin from everyday activities and everything I've been through, but I have a tiny bit left. I reserve it for my friends, family, coworkers, and bosses. I keep none for myself. If people took the time to really understand me, and my condition, maybe the landscape wouldn't seem so hopeless.

So, doctors, get your shit together. I'm not going to be a pleasant patient anymore. I'm going to be a bitch, and you're going to deal with it. I've dealt with your criticism, doubt, and I'm finished understanding. This is a whole new level of stress and pain I'm experiencing, and it has broken me down so, so badly... I'm a fraction of who I used to be. If my doctors refuse to help, then I'll have no choice but to start some lawsuits that I know the hospital would like to avoid.

I'm not asking for miracles, just a little understanding and hope... because right now, it seems so dark.

Respectfully,
Bitch on wheels (your patient)

En Espanol

Quiero ser amado... finalmente...

--like I deserve!--

Bad news...

We lost my Aunt Vicky today.

She was my Mom's older sister; and suffered with chronic illness for most of her life. I know that her struggle was long and difficult, and I'm just trying to be at peace with the fact that she is no longer... here. Even though I live far from my Mom's family, I remember the connection we had when I was a kid and carry that with me to this day.

Family is family. It may not be important to some, but to me, it's everything. I'd be nothing without my family. I thank the powers that be for them everyday, but days like today REALLY make you stand up and take notice of what is important in life.

Vicky, you will be missed. You have left an impact on your friends and family that will not soon be forgotten. For me, you will never be forgotten. Please know that I always loved you, even from far away, and that your final peace will bring me great peace.

Now I have to be strong for my Mom - losing her second sister now - she will be distraught. I'm going to try to make the trip to LA with them, if they can go. I think it would do me good to see the rest of my family now. I really, really miss them, and realize that time is precious, especially in moments like these.

Thanks for all of your support, and understanding while I'm laying low for a few days.

[silent scream]

I can't spell a scream.

But I wish I could.

I feel like screaming until I lose my voice.

I'm so tired of being unheard and being treated like I'm crazy.

You can only go so long being treated like a mental patient... before you believe you actually are a mental patient.

I swear, I wake up in a psychological haze that I can't shake for the life of me. I know there's something happening, or someone talking to me, but I won't remember that later. I'll just remember being woken up by a group of Sand People singing the macarena. (Which was just my deluded perception of Korby waking me up... to ask something about a grocery shop... heyyyyy macarena).

No wonder I feel crazy. I feel things that aren't there, I see things move when they're not, and I have feelings that seemingly pop out of nowhere. Like this one. Did you know I have absolutely no hope for a better life?

Me either. I didn't know I had that one inside me until it came out in plain conversation. I was able to say that I hope for the end of all of this... without a single emotion passing through my head. I find that a little bit disturbing. Shouldn't I at least care if I survive this?

This is a really, really scary adjustment period to these new medications. I know they're the reason I'm all messed up, but then I start to think what I'd be like without them... and then wonder if I'm messed up because of the meds, or taking the meds because I'm messed up. The cycle bleeds together at some point, and I can no longer distinguish between what is me and what is medication.

I do things that are... completely out of character. I'm emotionally unstable, and can't seem to find the happy medium anymore. I'm frustrated, medicated, and feeling like there aren't a lot of options left.

It's really, really dark in here, and pretty lonely sometimes. I try not to drag normal people into my shadows, but sometimes caring people get sucked into helping me, and I can't stop them. I guess I'm the type A personality that won't let anyone care, so they have to be even stronger type A personality in order to care about me. It takes one to know one, I suppose...

I hope that this helps someone. I know when I read about others' personal struggles, it helps me identify my own, even when I'm not sure what I'm feeling. So, I'm putting my misery to use by writing about it.

What good is misery if I can't exploit it occasionally?

I hope the world at large is in a better state than my mind, but I sincerely doubt it.

[I need to include my thanks to Dan, for giving me good news. A boy like that... damn. I had a permanent smile. You have no idea. I so love you.]

What did I miss?

I have a friend who is... unreliable at best. She is flighty, non-committal, and I will often go weeks without hearing from her. She grew up with her own issues - I won't discount or belittle her seemingly perfect life - we all have our demons.

However, this friend, after spending the night at my house last week, took my last 100 bill out of my wallet without asking, and left a post-it on my wallet saying she'd bring me 100 back that night (it was Sunday so the banks were closed). If the money had come back that night, I don't think I would have been so stressed.

Starting early Monday morning, I began throwing up, had a fever, etc... and went to the Urgent Care unit to get help. Needless to say, I was totally weak and stressed, and on top of that, had lost my debit card and my 'friend' took the last of my cash. On top of THAT, the doctors sent me home still vomiting. Still had a fever, and was complaining of dizziness (BP = 148/101).

I used my credit cards to get me through (having to charge and borrow money from my parents was not in my plan...). I went back to Urgent Care the next day since I was still sick, and again, they sent me home without relief. I was still vomiting, had a fever, and high blood pressure. They gave me fluids, but I had been unable to keep any medicine in my stomach AT ALL for four days. I started to withdrawl from some of the fibro drugs, as well.

I saw my General Doc on Wednesday, where I didn't get any new answers. Was sent home sick again. I was so frustrated. I was tired, sick, and pissed at doctors in general. If a patient is in pain, and they can't keep their meds down, and there is an IV version available... then they should push it, in my opinion. But, no.

So I went to Overlake Emergency. Yep, that will be an excellent bill to pay... but they treated me like I was a human being! They treated me for pain, nausea, and gave me anti-anxiety meds as well, so I could finally get a full night (or day) of sleep. I was thankful to the doctors and staff there - even though I just received the treatment that I SHOULD have received from ANY doctor.

I ended up in Urgent Care again the next night, hoping that my visit to the ER would show them that they weren't doing their job. But no, the doctor treated me like I was seeking narcotics and was there for that reason alone. (I only complained of abdominal pain, headache, and vomiting when admitted).

I never asked for drugs, I asked for HELP. Doctors read my chart notes and decide that I'm an addict and I'm just itching for that next high. Too bad I don't get high from pain pills. Maybe they should consider that my body doesn't really act normally to drugs... I usually require 2x the doses of any medication, compared to 'normal' patients.

By Friday night, I was feeling better (yeah, almost five days of continuous throwing up)... and I'm down to 140lbs at this point. And I texted my friend to get the 100 bucks back... and was met with a ton of attitude. She basically called me a liar (asking if I had really been to the hospital), and yelled at me over text message for not answering her calls during the week. She treated me like it was my fault that she hadn't paid me back yet.

My door is usually unlocked, and she takes full advantage of that when it benefits her. I'm generous with the things I have - food, drinks, etc. I feel like I get walked all over because people assume I have money. I have worked HARD for the things I have; they weren't given to me by Mommy and Daddy.

I don't live with my parents. I pay my bills on time (usually, excluding hospital bills). I have a car - (that I pay for). I certainly don't take money from my friends without asking.

I pay my friends back - WITHOUT THEM HAVING TO ASK - when I do borrow, or if they happen to front me for anything. I wish more people would be considerate to their so-called friends. Either that, or I need to start tossing people out of my life who have proven themselves to be less than trustworthy.

I hate growing up and getting older. Life lessons suck, bad friendships suck, and I'm tired of being treated like a freakin doormat by everyone.

Unrequited love is almost a fable...

I'm clueless when it comes to love.

I can usually fake my way through the whole "relationship" thing, but what does that have to do with love?

I mean, relationships have more to do with compromise, faith, trust, compatibility, and mutual adoration than it has to do with... LOVE. Where and when does love come into play?

My parents knew each other for a year, dated for six months, got engaged, and married within a year. That was 28 years ago, and they're still married today, happily, for the majority of the time.

I want to find that kind of companionship. Not just someone who wants to sleep with me, but also is interested in who I am and what I've done, and what I'll do next... I'm curious about what I'll do next, but I want to share that with someone!

I have a someone in my heart and mind; who has been there for awhile... but I have NO idea about their feelings for me. Are we 'just friends' or are we 'friends with potential for more' or 'friends only because I'm dull and don't understand hints' or... 'we feel the same and can't communicate them'.

I have no idea. Is everyone as lost as I am? Or is it really like they say, "you'll know when you meet the right one" and I just haven't met the right one?

It's so frustrating...

My doctor is ordering me to take two weeks off of work. For most people, this would be whee! vacation! or hooray! couch time! But for me, I'm going to spend most of it around people with medical doctorate degrees. I'm so sad, I could burst into a million pieces and vaporize.

I would give anything to feel no pain for a day. Just for a day, even. I don't know what it's like not to hurt. I know that most people can't swallow that concept - nor do they really want to. Once you put yourself into someone else shoes, you find you might care about them and their well-being. And, well, we can't have that in the workplace, now can we?

I will be somewhat out of reach or out of touch to most people for the next few weeks, and I apologize in advance for my slacking on friendships. I know I've let quite a few of my friendships suffer because of this damn illness, and I'm beyond frustrated by it. The friend I used to be is still in there somewhere - I just need to peel off the layers of pain so that I can come back.

For the people I will lean on heavily for the next few weeks, I love you and thank you for your patience with me. I will not always be easy during this transition - but remember that sometimes, the medicine is doing the talking, and I'm just the incoherent bystander, so please be patient.

To Mister Wiwille - I hope I can count on you for some company - maybe some Mario Kart? I miss you, but sometimes... I'm not so sure... if you miss me? I know my sickness and sadness spills over into our conversations - but at least I'm never anything but honest, right? Oh, and Nacho misses you.

Hopefully I will be able to return to work with no negative stigma attached to me just because I have a disability - I think that's probably my biggest fear. I do my job, I do it well, and I do it during VERY odd hours, with a debilitating disease. Maybe I am too proud, but I am proud of myself for my ability to pull through. I think it's justified pride.

Being able to cope is 90% of life... the other 10% comes from the pharmacy.

Pain Scale Information

For Children, usually:

http://en.wikipedia.org/wiki/Pain_scale

Pain is the Fifth Vital Sign.^[1] Pain scales measure patient's pain, using different methods. Pain may be evaluated as a single measure (intensity only) or using several measures (duration and intensity); the Wong-Baker FACES scale as shown above is a commonly used pain scale for pediatric patients and is now used for others; the Brief Pain Inventory uses an interview to assess how pain affects the ability to function in daily life.

For adults to rate pain:

http://en.wikipedia.org/wiki/McGill_Pain_Questionnaire

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971.

To use the questionnaire, circle the words that describe your pain but do not circle more than one word in a group. Then when you have that done, go back and circle the three words in groups 1-10 that most convey your pain response. Pick the two words in groups 11-15 that do the same thing. Then pick one word in group 16. Finally, pick 1 word in groups 17-20. At the end you should have seven words that you can take to your doctor that will help describe both the quality of your pain and the intensity of it.

Group 1 Flickering, Pulsing, Quivering, Throbbing, Beating, Pounding

Group 2 Jumping, Flashing, Shooting

Group 3 Pricking, Boring, Drilling, Stabbing

Group 4 Sharp, Gritting, Lacerating

Group 5 Pinching, Pressing, Gnawing, Cramping, Crushing

Group 6 Tugging, Pulling, Wrenching

Group 7 Hot, Burning, Scalding, Searing

Group 8 Tingling, Itching, Smarting, Stinging

Group 9 Dull, Sore, Hurting, Aching, Heavy

Group 10 Tender, Taunt, Rasping, Splitting

Group 11 Tiring, Exhausting

Group 12 Sickening, Suffocating

Group 13 Fearful, Frightful, Terrifying

Group 14 Punishing, Grueling, Cruel, Vicious, Killing

Group 15 Wretched, Binding

Group 16 Annoying, Troublesome, Miserable, Intense, Unbearable

Group 17 Spreading, Radiating, Penetrating, Piercing

Group 18 Tight, Numb, Squeezing, Drawing, Tearing

Group 19 Cool, Cold, Freezing

Group 20 Nagging, Nauseating, Agonizing, Dreadful, Torturing

Tactfully Tactless - learning to communicate is hard!

I seem to unintentionally hurt people's feelings a lot. I'm a little brash, and speak my mind a little too often for most people's taste. I don't ever intend to hurt anyone - outside of an argument, of course, we've all said things in anger that we don't mean.

I just find that there are so many circumstances that start out with me being polite and kind, but end with me being short tempered and not as tactful, with the other person's feelings bruised.

I try to voice my opinions in ways that people can easily understand and relate to, even if they don't agree. Of course I'm going to sound a little bit confident when I speak, but some view it as stating my opinion as fact.

For anyone or any friend I have done this to, I apologize. It was never my intent to hurt your feelings or change who you are. I was trying to communicate my feelings and seemed to have failed miserably.

I'll never stop speaking my mind, and I'll never stop caring. I will just change the way that I communicate. If something isn't working, you change it up and try something new, right?

I hope that everyone adopts that school of thought. It might make the world a lot nicer place if we consider the direct impact we have on someone with our words alone.

ME/CFS - I am moderate to severe. :(

www.sleepydust.net

Site has great information about the condition and the effects it has on your life. It also helps outsiders understand what we might be going through... at least a little bit.