April 24, 2010 by MyFoggyBrain

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!

April 12, 2010 by MyFoggyBrain

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!

April 11, 2010 by MyFoggyBrain

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.

February 3, 2010 by MyFoggyBrain

Working to Stay Positive When Life Gets In the Way

I cannot believe I have not posted a blog since January 1. That is just unacceptable! hmmm…. what has happened in the last month? Let’s see…. Well? The company I have worked for, for 20+ years was purchased (finally!) and I am now changing over to this new company. I am starting a new job in a of couple weeks. Trust me, there has been a lot of stress working up to these days. That’s one MAJOR change. What else? Oh yeah, I started my Level II Pain Program at Kaiser… that’s another MAJOR change. That alone is a whole other blog! What else? Oh, I went to the Craft and Hobby Association (CHA) Show in Anaheim for five days. You heard me right… FIVE DAYS! What else did I do in this past month… I also worked on two memorial collages and oh yeah I’m still working full-time and dealing with this wonderful condition we love to call FMS. So, I guess I will give myself a break now that I see all that in writing, and say January was a pretty busy month, and I’ll do better in February to blog more.

I have been meaning to tell all of you how much joy scrapbooking has brought me in the past month. Even if I haven’t made pages for myself, just working with the paper and being around friends has ensured I don’t fall into that January funk so many of us hit after the holidays and in the foul weather. This is usually a very difficult month for me. I started with working on a memorial collage. It was very sad as a young girl had passed away that the collage was for. I am finding that although the passing is extremely said, I have found that these scrapbook albums are so treasured after they are viewed at the memorial service on the collage boards, it is a true gift to be able to design the pages and put the pictures and paper together to create the life stories people will tell as they remember their loved one. I feel blessed to do this for people. This young girl Chloe was only four years-old when she passed and in her young life, looking at her pictures was not easy as we made the pages – yet I knew when her family saw the collage at the service and received the album afterward… they would treasure it forever. Truly a gift that I felt honored to be a part of giving.

Attending CHA right after finishing that collage was a refreshing change from my day to day job and nice to get away from home with the girls. We drove down to southern California and spent those days cruising the booths, looking at and testing the new products, we took some classes and a couple of us won the Making Memories Slice die cut machine! I can tell you… I was dead by the end of day 1, by day 2 I opted out of my first class, by day 3 I had a burst of energy until later that evening. Day 4 was a very painful day and Day 5 was a good time to start on our way home. It was a great trip! I did pace myself okay, but it was hard and very frustrating at times. I missed a lot because I just could not get around or had no energy left. I kept a warming pad in the bed and I always went to sleep with my “deep sleep” app on my headphones so I would go to sleep without distraction. In addition, lots of breathing exercises and I walked with my cane. I understand, there’s always next year! CHA L.A…. Here we come!!

Back home I worked on another memorial collage, which was very relaxing hanging with my friends and just putting my heart into the pages. This time it was for an older woman who had certainly changed the world because she was a teacher in so many ways… of young children in the classroom, of people in her kitchen with cooking classes, of people in her determination to get the word out about GIST, of young children on trips to Washington DC… she traveled the world… you could see through the eyes of the pictures what a life she had. Again a blessing to be able to help in this gift to her family.

My work life is changing and I am both scared and excited for this change. I know that it’s time, just need to get my heard around it a bit more. Is this the change that God wants for me? So many questions in my head right now. There’s so much stress at work with people confused and unsure of what is happening to them. I just want to fix everything and help people, but in most cases, it’s just a matter of patiently waiting things out. Patience and ME have never really been the best of friends… When I get stressed I try to do some breathing exercises to just get my head focused. This helps to calm myself so I don’t increase my pain levels.

As you can see, doesn’t matter whether my body is working or not … the world continues to move on and I need to keep moving with it! Working to stay positive and finding things that are relaxing and help to keep the stress down are what work to keep my pain levels down. This is what is important to me.

Just thought I’d share some of my activities with you… I hope you are all having pain free days!

Thank you for reading! Stay Cool!!

December 7, 2009 by MyFoggyBrain

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:

About.com: Survive Holiday Shopping With Fibromyalgia & Chronic Fatigue Syndrome
Nat’l Fibromyalgia Association: Holidays
Fibromyalgia Symptoms: Party Time

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:

http://thebloggess.com/ –> this chick is the absolute best!

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?

December 1, 2009 by MyFoggyBrain

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”: