Chronic Pain

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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.

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breathe in… “let”… breathe out… “go”…

Warning: I strayed from the regularly scheduled blogging and went with a more childish topic… I couldn’t resist…

So… I went to my Restorative Yoga class tonight, as I do every Thursday evening. Yet somehow tonight was going to be different.

I went to class and met up with my friend, there was only the two of us tonight. Usually there are three of us. Was this why things were different? As we enter into the yoga room. Very quiet, serene, candles lit… the lights are dimmed and I feel relaxed the moment I enter the room. I love this place. I look forward to it every week. It’s the one place I go to that I know my body will actually cooperate. I love this hour of relief that I get from my fibromyalgia. I go to my spot and put my mat down and apologize for dropping it just a bit too loudly on the ground. I whisper as I talk to my friend. It’s really warm in the room tonight. Is this what is different? No… wait, there are two men in this class. That’s different.

As I start to put my second mat down on the ground, I hear from behind me, the man laying on his mat let one loose… I mean he seriously RIPS ONE. wow. THIS is what is different.

I just keep talking to my friend like nothing happened. I’m going to give that man a one time gas pass. The class has not started yet. We are all warming up and hey… stuff happens! I’m going to let that slide. We all have our slip ups… you know, we’ve all slipped up.

The instructor comes in and we start warming up. For the next 10-15 minutes we stretch and do the normal breathing exercises to prepare for the restorative poses. I am relaxed and focusing on my breathing. The gas man is no longer on the brain.

Instructor: “Let’s get ready for our first pose.”

We all take our mats towards the walls and I get in the first pose. I am so ready to meditate.

Instructor: “I want you to just relax and let all the…….”

Gas Man strikes again… PFFFFFFFFFGGHHHHHHH!!!!!!The Gas We Pass

and again… PFFFFFGGGGHHHHHHHHH!!!!

and again… PFFGGGGHHHH!!!!!

and again PFFFFFFFFFFGGGGHHHHFFFFFFFFF!!!!!!!

Instructor: “… stress of the week leave your mind… as you breathe in say “LET” and as you breathe out say “GO” …. “L…E….T………………G….O…..””

Seriously. SERIOUSLY??  Did he just say that? I mean I know he says that every week, but couldn’t he have come up with some new material JUST FOR TONIGHT? I was no longer relaxed. I was dying inside. I knew if I even whispered a laugh I was going to lose it. I would not be able to stop laughing. I would have to leave my favorite yoga place and never return. I would die of embarrassment for laughing like a 6-yr old at the gas man.

I couldn’t look at my friend, I couldn’t talk, I couldn’t think about what happened. Here I was in my yoga class… NOT relaxing. I started to count… I started to think about funerals, arguments I’ve had, anything that would NOT make me laugh. I had another 45 minutes of class… this was going to be a long class…. this was a challenge. Thank goodness my other friend didn’t come, there is absolutely no way she would have been able to make it through that moment. That would have been  my last yoga class.

Needless to say… I did make it through and the rest of the class was quiet, thank goodness!

Well, it could have been worse. I could have been the one with gas!

Thanks for reading! Stay cool.

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i have faith. i will overcome this disability!

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.