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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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do you have my christmas spirit? can i have it back now?

what does christmas mean to all of you out there? when i was growing up i could not wait for thanksgiving because it meant christmas was right around the corner! it’s so strange for me, it’s as if the holidays don’t even happen these days. it’s really sad to me… so my question is, did my parents create the holiday spirit when i was growing up? if so, i gotta say, they did a hell of a job! my mom created a family environment where we put the ornaments on the tree together (unless i’m smokin’ dope and that’s not what happened… and i know i’m not smokin’ dope because i don’t have that medical marijuana card!)… maybe not all of us, but my middle brother and i did put the ornaments on the tree with my mom. okay so not the whole family but the three of us did this together. oh yeah, and yes we complained. but! we did put the ornaments on and i remember loving it… i loved the feeling of accomplishment when we were done.

i’m a grown up now (at least i like to think i am at times) and my mother passed the ornaments down to me. these are very special ornaments too. we made a lot of them growing up… my mom made a lot of them when we were growing up… she put a lot of love and care into these ornaments, how could i possibly let a christmas go by without putting them on the tree? she will want to see them when she comes over on christmas.

yes, this is my problem. i have not had christmas spirit for the past few years… i wish i could find it. i think it has been misplaced. if you have it, please send it back to me… i really miss it…

i should have put a warning at the top of my post “this may depress you”… that was honestly not my intent, i was just sitting here thinking as i was finishing up for the night (i am doing the normal christmas project craziness)… i’m going to go put some ornaments on my christmas tree now. i want you to go watch something funny now… or better yet, go read http://thebloggess.com/ she will make you laugh your ass off and i will have made up for depressing you…

Happy holidays!

thanks for reading! and really, stay cool!

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screw fibromyalgia and celebrate the best things in life!! my family is AWESOME!!!

i drove for the second time in 6 months today… coincidentally, it was also the day my boss came in to town. i picked him up from the airport, after a day of meetings and meals… all i can say is by dinner i was walking with my cane. after dinner walking back to the car my legs froze up and the pain was quickly moving up my arms to take a rest on the left side of my chest. nice. NOT! soooo…. i suck it up, drive to the hotel and drop off my boss… promptly ask my lovely friend to drive and i jump into the passenger seat. no tears today folks!

yeah well, i was not happy. in fact, i was really going into quite the mood. i had to call my husband and tell him we were on the way home. he needed to get in the car and drive my girlfriend home because i was in over my head with the whole “thought i was independent” thing. (please bust out the violins and start playing now)

it all gets worse… while we are driving i find out my baby girl (she’s eleven) is home alone for the first time at night while we are out on this driving escapade. an escapade that we wouldn’t have to be on if i would just get my shit together and win the lottery, so i could have a flippin driver instead of having to “phone a friend” every time i need to go somewhere. (the sarcasm is really heavy at this point… argh!)

i get home and i’m not happy (if you haven’t figured that out by now)… but as i walk up to the back door i see a red ribbon on the door… a little smile on my face. what the…. i go in the house and my girl is in the kitchen and gives me a hug, my smile is growing. i go in the house and walk further and i hear christmas music… and i’m wondering what is going on… and i go check out where the music is coming from… and this is what i see:

my family had gone out while i was working, picked the tree, brought it into the house, put it in the stand and put the lights on!!!

BEST DAY EVER!!!!!!! BEST FAMILY EVER!!!!!!!

need i say more??? on days like this, screw fibromyalgia and celebrate the best things in life!! my family is AWESOME!!!

thanks for reading! stay cool!

happy holidays!

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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?

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should i call this a fibromyalgia “flare down”? whatever it is… i like it!

i have been feeling really good the last six days. six days of relatively average, level 4-5 pain days. thanksgiving day was the first day i felt really good. friday i spent the day scrapbooking and i felt really good. saturday was up and down… sunday was just okay, i had some serious foot problems but thankfully my husband was home to help me through it. monday is usually the day that all hell breaks loose in my body so i was pretty worried…. i waited and waited and let me tell you. i made it! it was a good day. in fact, it was a really good day, all things considered. i had a clear head yesterday and my pain level was about a 5. i have not had a day with a pain level below 7 in many months. did you read that?? i said months! and a clear head? it felt like i went to the store and exchanged myself for someone new! what the hell is going on?

do i call this great thing a “flare down“??

today… well today was a big day for me. for all you fibromites out there, you can relate to this… i took a shower this morning and i still had energy after. i had to slow it down a bit (i got a little too happy and forgot that i actually HAD fibromyalgia for a second and completely overdid it) but i kept going. i got in my car and drove for the first time in many, many months. i drove up to the san francisco airport to pick up my boss and back down to santa clara for a meeting… i was in the office all afternoon and then out for dinner with the staff. this was a big deal for me. i have not been this active and driving since… well i honestly can’t remember! even better, i had a clear head all day… again!  again i say… what the hell is going on?

do i call this great thing a “flare down“??

at about 8:15 tonight while sitting at the dinner table… i started to feel the nudges and the tension and the bruised feeling and i thought to myself… “go away!… i am feeling good! i am feeling good!… noooooooooooooo!!… not fair!!!!!!!!!!” but i can feel the pain coming. so, i quickly decided to call it a night and come home.

now that i’m home, i can feel my elbows and knees tightening up and hurting and i’m getting pissed off. i need to do some self talk. i can feel my fingers starting to hurt as i type, my head is hurting and all i can think is “eff this shit! i am going to feel good when i get up tomorrow! nothing can stop me!”.

so did i have a “flare down”?? did i have six great average level 4-5 pain days for no reason at all?? well when i think about it … all the nights were pretty painful, the meds helped me sleep through it. i wake up and go back to sleep because of the meds… so… i’m going to think like this for right now:

  • i am having some really great days right now.
  • my nights are painful, but my meds are doing the job and helping me get some rest and when i wake up i go back to sleep so, for now, my insomnia is under control. this is great news!!
  • i probably overdid it today which is why i’m experiencing pain right now.
  • tomorrow is going to be a great day.
  • i may not be where i want to be… but thank God i’m not where i used to be!
  • i have the courage to change what i can and i will accept what i cannot… it is what it is…

my formula for getting here to my “great days”:

  • a whole lot of prayer
  • listening to my teachings by joyce meyer and pastor paul
  • my physical therapy and following through with it at home
  • a whole lot of prayer
  • the support from my family and friends
  • the support from the fibro social networking community
  • a whole lot of prayer

if  i can do this… so can you!

what do you think? “flare down”?? fluke??

thanks for reading! stay cool!

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Letter to people that don’t have Fibromyalgia (FMS) and/or MPS (Myofascial Pain Syndrome)

"Thank You!"

i have been writing this blog for just over a month now and, first of all, thank you! this blog has helped me through some very tough times. i had no idea that doing this would help as much as it has. 99% of my writing is done in the middle of the night when most sane people are sleeping. consider that i have insomnia during a flare up, i spend a lot of time reading and writing when i can’t sleep (in between facebook games, of course!).

through one of the blogs that i follow, i ran across this letter that i just love. it says it all. it’s a bit blunt, but it’s right on point… most important, i feel this way… except i am open to suggestions.

thanks to my newfound blogger/ twitter friend Sassy Nurse for sharing this with us:

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome): By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now –
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.
It’s because I have had almost every single one of my friends suggest one at one point or another.
At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.