Chronic Pain

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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.

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it’s ironic: invisible condition, invisible people & social networking

myfoggybraini found out i had fibromyalgia over a year ago… i started reading books and attempting to learn as much as possible, yet after a year has passed, i feel like i was not taking in as much information in as i should. in the last four weeks, i have learned more than in the entire year, not by books or doctors, but by social networking.

my name is “my foggy brain” and i am a fibromite. i have the “invisible condition” noone wants to believe and noone can see. the strange thing is, social media, by definition is “the unseen”. it is virtual. it is facebook… it is twitter… it is blogging. so i remain “invisible”. i remain invisible by choice. i admit i am new to this. i have only been doing the fibro twitter and blog thing for a month so maybe there is a time when people get together. i’m not sure if i’d be up to doing that… i mean by definition, we are a group of people who don’t travel well. i can’t fly and can’t see a time when that would be a good idea. i can’t ride in a car more than 45 minutes without major pain. soooooo where and how would a “tweet up” happen? don’t get me wrong here… i was just sitting here and found it ironic. invisible disease/ invisible people.

i have been doing the social networking thing for a long while now, i have two twitter accounts (probably not such a great idea for someone who can barely finish a sentence… but i digress). i have an account just dedicated to my fibro friends and it is the best thing i could have ever done. very focused, provides me great information and the people… the people are GREAT! the level of support that the people provide to each other is so nice… i would have never thought it would be so nice. it is like a 24/7 support group. i totally underestimated the value of twitter in this respect. i am kept completely up to date on the latest and greatest news, medications, therapies, etc. AND provided wonderful support… AWESOME!

with my blog… i love the comments. it’s nice to know i’m not alone. i have been reading other people’s blogs and it’s been inspiring… so many people are suffering from fibromyalgia and feel alone and many don’t have a lot of support. it’s hard to read, i want to reach out and jump through my laptop and help. this condition is so tough… it affects people in so many different ways…  the worst part about it to me is that it seems to affect people who in the earlier years were HIGH HIGH HIGH performers. people who went out of their way to help others and were always  doing too much and basically burned out their bodies. now when they need help, they don’t have a support system. just doesn’t make sense.

what do you think?

btw… if you want to follow me… i am @myfoggybrain

thanks for reading! stay cool!

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i did it… and i’m gonna celebrate it!!

yay_halloween

YAY!! I did it!!

Okay… all I’m sayin’ is… I DID IT! I was in some serious pain and I really believed I was not going to be able to go out with the kids trick-or-treating… but I ate some food, put my shoes on and I walked out the door.

So let me backtrack a bit. I went to my daughter’s soccer game in the afternoon and thought I was going to have to go to bed on the way home from that. I was almost in tears on the way home, my body hurt so bad. I just took some deep breaths and when I got home, I sat down and relaxed for about 20 minutes before folks started coming to the house.

As family and friends came over and we started to get the food out and the kids started to get ready, I started to get excited and at the same time really nervous… “would my body fail me… would I just go for it and pay later...”

My sister-in-law drove over the hill from Santa Cruz, bringing with her my 11-year-old niece and 3-year-old nephew… God bless her for that!

As we all stepped out the door to go trick-or-treating, the thoughts going through my mind… “please don’t make me have to call my husband to pick me up… body, please don’t fail me now… just let me have fun on this Halloween night!”

My nephew kept me laughing for the next hour and a half as we walked the neighborhood. He was sooooo excited, his excitement and happiness from the night just overflowed and had me smiling and laughing!! He ran from house to house to house and told us every piece of candy he got from each house. He was first at the door in front of the big kids. He said “Trick-or-Treat”, “Thank You! Happy Halloween!” at every single house without being told. He knew to only go to the houses with the lights on, he told us which houses to go to… he carried that bag of candy by himself and did not complain ONE TIME! Man! I was in awe of this child… how can we bottle up that joy? At the end his bag of candy had to weigh at least 1/2 his body weight! He carried it like Santa carries his bag of toys, slung over his shoulder…

So… yes… I am celebrating the fact that I walked the neighborhood and didn’t have to be picked up!

Mostly, I am celebrating the fact that I have this little angel to be thankful for, that made me so happy and allowed me to enjoy Halloween for another year.

Stay cool and thanks for reading!

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sleep… what does that feel like?

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What have I done to deserve this??

** I will not be held responsible for any spelling/ grammatical errors… blame this dang insomnia!! **

Sleep… who would have thought it was so difficult to achieve such an easy task? Apparently I always took it for granted. I remember in high school sleeping all the time! I guess I used up all my sleep hours. Damn! Had I only known then what I know now… I may have saved some of those sleep hours for now. Hmmmmm… doubt it I was too selfish then!

Insomnia is the best torture tactic ever. Without sleep one starts to feel crazy… at least I do. It’s been weeks since I’ve slept through the night. I don’t know why people say “I slept like a baby”… I’m sleeping like a baby now and waking up every couple hours SUCKS! The last few nights I can’t even get through an hour straight… Who made up that saying? Babies don’t sleep through the night! I guess if I’m ever in a situation where I need to torture someone, I know what to do… (Now you know I need sleep! I’m thinking I’ll be in a situation where torture figures in… )

I feel frazzled, my head feels like it weighs 20 pounds and what’s with this constant fog? I mean I live close to San Francisco, but there’s no fog in this city I live in!! It’s sunny and blue skies outside… I’d really like to take advantage of this weather!!

I would also like to work and be able to sound and feel like an intelligent human being. I am human, aren’t I? Wait… maybe THAT’s what the dr. forgot to test me for!! I’ve been tested for everything else!

I’ve just been prescribed Nortriptyline on top of the other meds I’m taking. I started to take it last night. I hope it helps with the pain and helps me sleep… I’d like to know what it feels like to sleep again… ahhhhhhh…. the feeling of …. zzzzzzzzzzzzzz……..  huh, sorry I dozed for a minute! Side effect of no sleep during the night… just kinda doze off and on throughout the day… yeah right! I wish!!

Praying for sleep tonight… for me and all you beautiful fibromites out there suffering from the same crazy insomnia…

Stay cool! Thanks for reading!