fibro fog

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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?

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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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fibroFLUmyalgia… from bad to good

i am going out of my mind… it’s bad enough the weather is changing and every inch of my body seems to want to scream out in pain to let me know. it also seemed to be a good time to catch the flu. why not? why not get it all over with at the same time? i mean… let’s stop and pause for just a moment to think about why not:

  1. it’s not as if i haven’t missed enough time from work and
  2. it’s not as if laying in my bed 24 hours a day/ 7 days a week doesn’t thrill me to pieces and
  3. it’s not as if feeling like my head has been filled with cement is better than just the foggy feeling i usually have and
  4. it’s not as if my kids don’t love joining me in my bedroom for “mommy and me” time and
  5. it’s not as if that journey from my bed to the kitchen for my “once a day” trip out of bed doesn’t just make for a great “FIELD TRIP”! and
  6. it’s not as if the walls aren’t closing in on me in my bedroom and
  7. it’s not as if playing these same four facebook games don’t keep my interest, right? RIGHT?? and
  8. it’s not as if having the flu is really that bad… I mean it’s just aches and pains…

shit. it’s just aches and pains…. what the eff? if i thought my aches and pains were bad before… let’s just say TIMES TWO! i was not an 82-year old lady anymore, i was a 164-year old lady this week. a 164-year old lady that couldn’t sleep, had no appetite and was in excruciating pain. TIMES TWO.

this week, i was unable to walk the hall from the kitchen to my bedroom after dinner one night. it was a horrible experience. i was embarrassed. i was in shock really. it was as if i forgot how to walk. i could not lift my knees up to take a step so i just held on to my husband and literally scooted my way down the hallway in my slippers, one inch at a time. i had to stop three times to take a break it was so exhausting. meanwhile the tears are just rolling because i am in pain, i am frustrated, i am pissed off because i am once again put in this position of complete invalid. i feel the words at the tip of my tongue… “I AM PISSED OFF AND I CAN’T TAKE IT ANYMORE!!!!”, instead i just go lay down… take a few minutes to get it together and then call my son in to watch “grey’s anatomy” together and get my “mommy and me” time in. i cherish this time together like i cherish sleep.

this is when i realize… i am blessed. let me say that again. i. am. blessed. i have this beautiful child. my first-born. he is  a miracle child, he was almost lost to me during my pregnancy. he is a fighter, he has been since he was inside my belly. he had to fight to stay alive and he’s kept that attitude ever since. he’s an awesome kid. he’s graduating from high school this year and i must cherish every moment i have with him. so… screw this pain. don’t let this shit take away from my moments with him. i must remember this moment right now, this feeling i have right now. these are the moments to be cherished. you don’t get do-overs in life.

thank you for reading! time is so precious and i appreciate that you take the time to help me as i work through my experiences through my blog. this has helped me tremendously get through the days and nights.

stay cool!

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is this fibromyalgia stuff catchy??

contagiousi know fibromyalgia is not contagious… but you would have really thought it was in my house this past couple of weeks…

i gotta tell you, God works in interesting ways… the last few months, my husband must have really really wanted to know what it felt like to be me. i mean he must have really been saying to himself (in bold and underlined one hundred times if this web editor allowed me):

husband: “i wish i knew what it felt like to be in pain 24/7 and not be able to sleep”

[pretend insert me saying, to myself of course:  “what a complete idiot!“]

God’s response: “some wishes are really just too easy to pass up!”

… and so begins the best blog topic to come to mind!

my wonderful husband has a pinched nerve in his neck/ shoulder area… we think. aha! so begins the quest for the real diagnosis… sound familiar? anyone? anyone?

about a month ago, while starting the mower and pulling that damn string or whatever the hell you call it, he pulled or pinched something. this started in the shoulder and then moved up to his neck, down his arm and now his finger is numb. he’s been to the primary dr. who told him he had a pinched nerve and gave him prednisone and vicodine. he felt pretty good for a week while on the meds… well… after the week, he stops the meds and boom! he feels like crap because he stops the prednisone and now he’s feeling the pain of withdrawal and pain of … well… pain! we’ve all been there.

meanwhile… i have started my new meds and while still having sleep issues, when i actually do sleep, i sleep very hard. you can’t wake me up unless you turn the house upside down. i am scary asleep… like he tells me he’s watched t.v., kids coming in and out of the room, lights are on, crazy loud in the room and i am sleeping through all of it!

strangely enough he has become the light sleeper and the one who cannot sleep. he is the one getting up in the middle of the night because the dog and i are snoring in stereo on each side of him. he is in pain and now he’s getting up, leaving the room and sleeping on the couch. what the hell is going on here?

he has now become a walking zombie. shit. now there are two of us in the house. we can’t really afford this. i mean, i’m high maintenance as it is. my husband does everything in the house and he keeps it all together. he is everything to me. what do i do if my everything is broken? i’m already broken. we can’t both be broken… can we? this fibro shit is not cool. and i’ll be damned if all of a sudden it’s contagious… noone told me it was contagious! i gotta tell you, he even had a little bit of the foggy brain… i was getting a little scared! two of us in the house with foggy brain? the kids would be running the house… ummmmmm, halo3 24/7 in one room and texting, tv and facebooking in the other. we better get our shit together! thankfully his foggy brain only lasted about 8 hours. enough time for him to get a complete understanding of what it felt like to be me.

start of week 2 of my ever complaining, can’t take the pain, husband… (did i just say that?)… and he is in some real pain (truth be told, he is in real pain, i do know and most importantly believe that). he calls the dr. and they tell him to come in for a follow-up appt. he told his dr. that he shouldn’t be in this much pain (good for him for putting his foot down with his dr!) and the dr. gave a referral for him to see a rheumatologist and to come back to see him to get a lidocaine shot which will take the pain away…. however when he sees the rheumatologist, she tells him his dr. should not have given him prednisone and that the source of the pain was in his neck not shoulder, blah blah blah… end of the day… he still doesn’t have a diagnosis. and those damn shots didn’t help a bit. can we fibro people relate? hell yeah!

he says to me… “i understand how you feel. i know this is small in comparison to what you feel, if God wanted me to know… i got the point! i can’t believe you have to go through this everyday… ”

i never would have wished it on him or anyone else. it definitely makes a difference that he understands, but i don’t want him to feel pain. emotional or physical.

i find it interesting that this has occurred. anyone else have this happen in their relationship?

thanks for reading! stay cool.