invisible disease

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Fibromites, Do You Wake Up Refreshed? Just Smile!

It is Saturday morning, 6:30am and I am sitting here wide awake. Ask me why… c’mon, ask. Come onnnnn…. Okay fine! Because it’s Saturday and I can actually sleep in (well not really, my daughter has a soccer game and I would have to get up in a bit anyway, but that’s not the point!). The point is, it’s Saturday and I don’t have to get up at this time and it’s like flipping backwards day as usual in my life and I am awake for no reason when I should be asleep and here I am wide awake! Whew! That was a long sentence! It is not as if I got enough sleep so I woke up feeling…. and I hate this word now –> REFRESHED (Wait a minute, I honestly have tried to take that word out of my vocab… so rewind, erase and replace hate with strongly dislike). How many fibromites actually feel “refreshed” when they wake up? (could you actually feel me doing the quote/unquote really strongly with my fingers that time? because I was, well as strong as these grip-less hands would let me). I mean, that is just not something I have felt in years. I wake up feeling like …. hmmmm … not sure I have thought about this … I wake up and think about how I slept, what hurts and will I be able to walk when I get out of bed and then I try and figure out what day it is. Now as my daughter says, “sharing is caring” so when y’all read that one, laugh with me, not at me… because, for example, today I woke up and really thought it was Thursday for some reason. I was pretty happy it was Saturday once I figured it out. Still laughing at me, I mean, with me? That’s alright, that’s why you visited my blog today, some pain relief. :)

So back to my point, most days I wake up feeling tired, half of those days along with tired foggy decides to join the party and maybe 15% of those days depression decides to crash the party and bring everyone down. So refreshed never really happens. I wonder what that’s like. You know when you are watching t.v. and that commercial comes on with the chick in her all white pajamas changing the all white sheets, and the light shining through the wall of glass behind her and she just looks all clean and refreshed? She is the anti-me. I ha… oh wait, really dislike her.

It’s really not all bad, it’s my reality. I’m just saying it’s Saturday and “hellllllooooooooo”, just thought I might sleep in today, but apparently I needed to get up and greet the world. Okay… seriously, I am smiling… I really am. I just realized it. I am crackin’ myself up as I write this… I have to take my own advice, right? Don’t take life too seriously… and THAT my friends is why I am up early. I needed to wake up and get an early start so I could smile and hopefully make you smile. If I didn’t get up early enough I would not have been able to write this before getting out of the house for my daughter’s game. That’s the start of my day… smiling. Awesome!

Hope you enjoyed my post. Thanks for stopping by and I hope you start your day with a smile!

Stay cool!

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Reach One, Teach One: This video on Fibromyalgia is Amazing!

I read a lot of information on chronic pain and specifically Fibromyalgia. I personally feel like I am pretty educated. I just finished going through an awesome 10-week Level II Chronic Pain program through Kaiser (which I highly recommend to anyone who has Kaiser, send me an email if you want more information on this).

The video in the link below is of Dr. Sean Mackey, Chief of the Pain Management Division from the Stanford University Medical Center, he gives a detailed presentation of Fibromyalgia/ Chronic Pain that is just amazing… I generally have the attention of a gnat, I watched this entire video… IN ONE SITTING! I kept wanting to look away, or put my laptop down and do something else, but I was so intrigued by the information I stayed glued to the screen. He provides the answers to:

  • What is Fibromyalgia?
  • What are the symptoms?
  • What are some of the treatment options?
  • What is pain?
  • How should fibromites/ chronic pain patients be treated?
  • Alternative therapies
  • Latest studies
An Update on Fibromyalgia

http://www.researchchannel.org/prog/displayevent.aspx?rID=28078&fID=345

Tip: If you watch directly from the site (and don’t download the video), you will get the video with closed captions which is really nice to follow along with Dr. Mackey as he speaks.

The date of the video is October, 2008

Running time: 1:14 (well worth the time!)

You will learn everything you need to know about FMS in a language that anyone can understand. He is positive and I felt almost uplifted watching this even though the information was sometimes difficult to hear. He knows his stuff!

Encourage your friends and family to check this out so they can better understand what you are going through.

Thanks for reading, I hope you find this helpful!

Stay cool!

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How Do You Recover?

How do you start your day? If it starts out good or bad, does that determine how the rest of your day will go? Do you have the ability to turn your bad day around if and when it turns sour?

I tell you… with chronic depression, it’s like climbing up Mt. Everest carrying a 100 lbs. of cement on my back to turn a bad day — to good. Some days it just doesn’t work out. Some days the depression just hangs around like the cloud of dirt around Pigpen. Some days I am able to turn it around.

Yes, I take medication. I take medication to help me manage my pain, my depression and to help me sleep. I remember what it was like without medication. I know I don’t want to go back to those days. I hate putting these pills into my body. Every time I have to refill my pill boxes, I hate it. It cause me to go down a bit, but I have to remember that in the end it helps me. I sleep better, It helps me walk, work, spend time with my family… it helps me be human.

I worked about 70 hours this past week. I had a colleague tell me on my fourth work day at our business dinner, when I finally gave in and used my cane, that I didn’t need to use my cane, that I had walked fine all day without it. Nice. It still kills me to have to use a cane, and it’s always nice to get comments like that on top of my own pride. By Friday I could barely stand up. A few hours into the day I just lost it and during the meeting started to tear up. Really nice. Nothing like being in so much pain and so exhausted you just can’t do anything but cry… while at work with your entire management team.

How do you recover on these days? I’m not sure I did on those days. Exhaustion is difficult to recover from without just laying down and going to sleep. It’s Sunday now and I have spent the last 48 hours since coming home from work on Friday basically in a complete fog. I have either been asleep or laying down only to get up to go watch my daughter’s soccer game and to take her to the store. To go watch her game was so fucking painful, I really had a hard time even watching. So five days of work, 2 days of sleep. Normally tomorrow I’d be going back to work, thankfully I am on spring break with the kids. This has been my schedule for the last few months.

So… again… how do you recover on these days?

  • You pray
  • You rest
  • You give yourself a break
  • You relax and take care of yourself
  • You smile
  • You laugh
  • You remember it’s just one minute, one hour, one day… you don’t look past right now

That’s what I need to do.

Take care of you.

Thank you for stopping by… please share with me how you recover.

Stay cool.

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Don’t let chronic pain steal your joy… My challenge to you: Enjoy life in 2010

I have started and stopped this blog at least fifteen times now. I have deleted four or five blogs completely, for this blog you are reading now I have erased sentences, paragraphs and entire pages before getting to the point of actually posting this one. I’m not sure what my problem is, I just have not been feeling the writing mojo in 2010… until now.

I cannot believe it is 2010… two-thousand-ten or twenty-ten or two-thousand AND ten or however the heck you want to say it! First, let’s get the awkwardness out of the way… YES I changed my look on my blog! Whew! I am one of those people that has to change things. I move the furniture (in the middle of the night I might add), I want to change the paint colors on the walls, I change my desk around, I always want something different! here again, easily distracted… now you know why! I love the feel of “brand new”. I thought, “new year” => “new look” to my blog. now that that is out of the way! Oh and before I forget… I also think I better start using my capital letters the right way. I am going to work for a “new” company soon, so I better think of it as a “new” job. I should start getting used to typing better in case I really really have to get a “NEW” job if you get my drift!!

So! There is a lot of newness going on in 2010. To be honest with you, and I feel I can be honest since you are all my virtual friends and family, I don’t like change. I like tradition. I like “brand new” added to tradition. I. don’t. like. change. Funny, I always thought I liked change, but now I realize I like “brand new” which is not the same thing as “change”. I will say this. I adapt well and I can be pretty darn flexible. I just fear the unknown. I said it. I don’t like change. I can move on now. It will take awhile to accept that, but at least I know.

I am still working on what I want my goals to be for 2010. The last couple years, in fact, the last three to five years have been tough ones for me. I have lost many loved ones and my health has not been great (understatement). I know one of the areas I really want to work on is just living above all the sadness and really getting into life and making 2010 all about living life at the fullest! I haven’t gardened in years, I haven’t done things just to have fun in a long time. I want to laugh and have fun and remember those people that have passed on in a fun/ loving way and be done being sad. I want to enjoy scrapbooking again. I want to enjoy working and enjoy living. I want to learn how to “LIVE” again. I don’t want fibromyalgia to take over my life. I don’t want chronic depression or any other medical condition to rule how I live. I understand this will not be easy, but I will take one day at a time and know that there will be days when things won’t go so good and on those days… doing something fun will be the most important part of my day!!

It’s interesting, in my Level II Chronic Pain program this past week, one of the homework assignments we received was to do something we enjoy every day… one of the people in the class said “everyday?” as she read the list that was provided as an example… we just seem to forget what it’s like to enjoy life when we are in pain.

Can you do something everyday that you enjoy? It can be something as simple as having coffee in the morning while you read the morning paper or playing games on facebook or something that requires more energy like going for a walk or seeing a movie… whatever you want! This is all about Y-O-U!

I have my homework that I’d like to make a habit instead of just homework… that’s my challenge to you!

Thanks for reading. Stay cool!

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whew! i’m still standing. or rather sitting. or am i passed out on the floor?? all i know is… i made it through the holidays and now… i’m getting ready for 2010!!

merry christmas!! i’m still standing. or rather sitting. or am i passed out on the floor? all i know is… i made it through!!

what a whirlwind holiday season this has been! most days i had no idea if i was coming or going. i was foggy brain multi-tasking which, trust me, was the scariest thing ever. i mean it. think of this… my family room had about 15 projects going on, you could not see the floor, the table tops, the chairs, the couches, it was absolute chaos in there… but for me? i was workin’ it. i had three 6-foot tables in that room, i swear when i wasn’t in there, there were little project angels helping me… (a girl can dream, right?) i have to really give it to my husband, he let me do my thang (that’s right THANG). he generally (and by generally i really mean always, can’t stand it, has no patience for it) hates clutter and if that room was not the ultimate, extreme definition of clutter, i don’t know what is… but he just soldiered on each day, for weeks, and let me work. i’m pretty sure he knew i would have lost my mind if he said something, but that, my friends, is support.

i gotta tell you, i had a lot going on before that big guy was comin’ down my chimney… i had:

  • eight 12×12 scrapbook calendars to make (only 3 of which were the same) so i was designing scrapbook pages for hours!,
  • 28 kids to buy for (thank goodness for amazon.com!!) – let me tell you those lightning deals on amazon saved my “you know what”,
  • one 12×12 album to scan and copy to create two smaller 8×8 albums (seriously can santa bring me a 12×12 scanner next year?? scanning a page 4 times is so not fun!! can you say 26 x 4? and honestly my husband did all the scanning, what a guy!),
  • two desk calendars (thankfully there’s snapfish where i went to create online) and
  • two poster collage calendars (again i love snapfish!)
  • christmas cards (last minute decision… snap! fish!) and
  • i helped my daughter make eight custom designed tshirts (what was i thinking…. i was thinking in October… that she needed to start, which is what i told her… told her in November… told her December 1… 2… 3… you get what i’m sayin’… her beautiful brother helped me in the middle of the night to get these and the calendars done)
  • in addition to her one 12×12 scrapbook calendar… (again, why do i encourage the start of all these projects? i love the feeling of frustration and stress all at the same time… it’s such a yummy feeling! and honestly (again) i didn’t really do anything but encourage/motivate/yell/yell/yell at her to get it done) but… her creations were awesome! i have to say it again… totally awesome!!!

and all this in the span of the three weeks before santa arrives… 80% of it the 5 days prior to… oh yeah, totally forgot…i also had:

  • the cookies to bake, which the kids did (thank goodness for auntie cheryl who faithfully comes every year to lead the troops while i quality check the end result)
  • the tree to decorate, which i did in the middle of the night one night after i just couldn’t take it anymore (the tree had been put up and the lights were on it, what was my excuse? don’t get me started… but i had to put my mom’s handmade ornaments on it.)
  • i scrapbooked an album as a birthday gift for a family member (i was really happy to have done this, this one made me feel really good)
  • i worked a little bit up until christmas eve, which i had meant to take off completely… because i was needed to do some things. it took more time than expected, but it was worth it.

moving on… i’m getting ready for 2010!!

now that christmas is over it’s that time of the year where everyone starts to make resolutions for the coming year and reviews the goals they did or did not achieve for the prior year. we do this as a family in my house. we set aside a day and scrapbook a page and each list our “10 most memorable moments” and “10 goals for the year” some of the goals are the same for each year, some are different – it’s not a time to be judged. my son is very good about listing smart achievable goals, he knows how to create achievable goals. i am going to learn from him this time. what a novel idea… an achievable goal! this is such a great skill he has at such a young age… he is very wise for a 17-year old. tomorrow is the day we will work on our lists and scrapbook together as a family. i hope for a drama-free day… i plan to just work at my desk with the family with tani by my side and get into my groove with positivity and God on my side… because that is how i plan to start 2010!

this will be a year of change for my family…

  • my son will graduate from high school. we will find out what his next path in life will be in the spring, i am going to be brave about this, but i already miss him. my best friend’s son is leaving for the air force in february… i miss him already even though i never see him as they live a state away. he was the first baby between the two of us bff’s so i feel as though he is leaving me too.
  • the company i have worked my entire adult life for, the last 24 years will be acquired by another company come the end of January. this will be a change like no other for me…
  • i start my chronic pain program in january, this is supposed to change everything for me as far as my pain. the pain team says they have seen people leave this program, literally, with renewed lives. i’m excited to see how i am doing as i progress through the program.

i am thinking about my goals for the coming year, i know all of you are as well. i am wishing all of you less pain in 2010 than you had in 2009 and continued sharing and support. we hold each other up in the good times and the bad and together we will continue to make each other stronger.

thank you so much for making me a stronger and better person despite having fibromyalgia, this community of fibromites/ chronic pain people seriously ROCK! nothing can hold us down!

thank you for reading and stay cool!

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tis the season… calling all fibromites! what’s your perfect christmas present?

today is december 7th and i can promise you, telling you i have a lot to do is the definition of an understatement. i am not going to be hard on myself. there’s no whip cracking (wait a minute! mayyyybeeeee that’s the sound i keep hearing… let me check, just give me onnnnnneeeeee second… nope, that’s definitely just the rain outside. whew! i got scared for a second there!), as i was saying i am on my own schedule. i put the pressure on myself every year.

i have this crazy idea that i want to make presents for people. i love love love to give people gifts. in my next life i’m coming back as santa. (to the one above, let me be specific… when i say i would like to come back as santa… i mean THE santa, not the homeless guy in nyc or any other person with that same name… i mean THE one and only the big guy that ‘makes the list and checks it twice, gonna find out whose naughty and nice’ please let us not do any funny play on words… thank you very much!) again, as i was saying, if i was a bazillionaire (this is a real word in my dictionary), i would just find ways to give away without involving all the politics… yet i digress.

in making all these gifts, every year, down to the wire… i always end up working around the clock. this is the first year i’m dealing with my pain levels being so crazy bad. this is the year my fibromyalgia decided to come and visit… and never go home (if you say it with that deep scary voice, it is much more effective and entertaining). last year was pretty bad, this year… let’s just say… prettier badder… or even prettierest badderrest!! okay shit… it just effing sucks but it’s christmas time and i’m trying not to say bad words and i just did and now i feel bad!!

so what was the point of all that anyway?

hmmmmmm my title says “tis the season… calling all fibromites! what’s your perfect christmas present?” what was i going to say… (the sound of my foot tapping does not help me remember oddly enough)… oh yeah! seriously… this is real time and i sadly did forget what i was writing… that was foggy brain at it’s best. you have just witnessed my foggy brain in action. whew! back to my blog.

what i want for christmas! geez i better type fast before i forget again… i want the perfect organization system for foggy brains. let me explain so you know what i mean:

  • something i can carry with me 24/7 in my purse
  • something i can write in and journal as i think (so i don’t forget!)
  • place to take down work notes while on calls or in meetings
  • calendar tickler to keep my work and personal key dates coming up
  • place to take down work and personal actions/ to-do’s
  • reference information that i need to keep either for work or personal
  • i would like to keep my work and personal separate

i have an iphone so i don’t need to keep contacts and i also have my calendar in my iphone for reminders… but i am a visual person i don’t remember unless i physically write things down to feel and see myself write it down… and also… if you have an app for that (hahahaha…. say it… say the commercial “i have an app for that!”) let me know, i’d love app suggestions for my iphone as well, i have tried GTD, OmniFocus, and i can’t remember what else…

if you have made something, i’d love to copy it… if you have thought of making something, i’m taking ideas…

i love stationary… i’m kind of crazy about paper, i think that’s why i love to scrapbook and love stationary stores… i have looked at tons of personal organizers (in weight.. really, i bet the total is probably 1/4 of a ton, what… does that seem like a lot or too little?). why the crazy look on your face?

this is my dream… to create the perfect organizer for people like me. an adhd foggy brained fibromyalgia chronically depressed insomniac scrapbooking crazed mom! if that is not the best description… man the next time i’m in a work meeting and someone says “why don’t we start by going around the room and introducing ourselves”, what do you think? should i start with that?

thanks for reading! stay super cool!

happy holidays!

ps. i thought i’d share some sites with you that may be useful to you fibromites/cfs peeps during the holidays:

pps. if you just need a serious laugh… (not for the politically correct folk), check out my most favorite place to go when i really need some relief from pain. she makes me laugh out loud every single time i read her blog:

ppps. if you actually read all the way to the bottom of this… i know that i could have matched my pictures to my blog a little better (like a diary or an organizer but i haven’t found the perfect one so that actually would not have made sense… hmmm), but i love my dog and any excuse to use her holiday pictures and i’ll take it… and really, it is my blog right?