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

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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!

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today’s a bad day…

Blue skies and windy outside and I am still laying down for the fourth day in a row. I think I have become a professional facebook gamer. It’s a good enough distraction from the pain, but it is starting be a constant reminder that I am doing nothing.

I stare outside the window and pretend I’m looking at the ocean. I wish I were scrapbooking or capable of reading a book. For all the hours I have sat and played facebook games, I could have completed many scrapbooks or read books that could enrich my life! It’s my life wasting away and it is THE MOST frustrating experience ever. I’m too anxious to read and I’m in too much pain to sit and scrapbook.

The last 3 days I have been in a deep depression. I feel like I am in a dark cave and I can’t see my way out. The fibro Twitter gang that I follow have been great! I feel like they can relate to what’s going on. My friends are worried and I feel incredibly sad about that, I just don’t know what to say or do. My husband is worried and I’d like to just snap my fingers and feel better. It just doesn’t work that way. I have to claw my way back to the light that is reality and make myself feel again. I feel broken.

I know I will have days that are good and days that are bad. I’m looking for my next good day to come soon…

Thanks for reading… stay cool!

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celebrate the small victories…

I had this crazy pain today in my feet that felt like the most intense type of pins and needles… like my feet went to sleep… It started to shoot up my legs and I just froze. It was so painful, I just froze. I called my husband when it first started to come and help me, do what? I’m not sure because when he came in the house I could not speak I was in so much pain.

Can I tell you how frustrating this experience was? I woke up this morning feeling pretty good. I intended to do some scrapbooking. I came and sat down and started to work and was highly motivated. FIFTEEN MINUTES into my relaxing scrapbooking project… BOOM! My feet just exploded in pain. WTF? I just don’t get it.

The pain lasted about 10 or 15 minutes… but my emotional state was not great. I was frustrated… very frustrated. I silently cried tears once again out of frustration for this pain causing havoc in my life. I was angry for getting emotional, which of course, didn’t help… Needless to say, I was exhausted afterwards. I ended up falling asleep for a couple hours.

I did get up and push myself up and off the couch and back to my scrapbooking project. I am very proud of myself. I finished ahead of my goal for the day. I will celebrate that!

It was a very rough day, but I made it through! I need to celebrate the small victories more often… Today I was so much better than my FMS!!

It’s so hard to remember that we are more than our condition, stronger, better… we need to celebrate our victories no matter how big or small… we need to lift ourselves up when we walk around the block for the first time, when we have a pain-free day, when we can remember where we parked the car… I am learning, with this condition, I need to celebrate all my wins. I don’t know how much pain I will be in tomorrow, but I can do my best to control my environment and stay positive.

Be cool!

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Yo-ga! Yo-ga! Yo-ga!

Fibromyalgia is a real downer… there’s no doubt there are a lot of things about this condition that can bring a person down. I experience them on a regular basis, and on most occasions, for me, the worst of it hits on the week-end for some crazy reason.

I can be “Debbie Downer” with the best of them, but I created my Twitter account and this blog to try and bring myself up (and those who I hope read this). I want to share my experience and hopefully give folks ideas on how to improve and live better lives. Selfishly, I hope folks give me ideas back so I can continue to learn. This week I thought I’d talk about my experience with yoga.

After dragging my feet for years, Restorative Yoga is really the getting me out of the house. I have been a hermit for months and finally my girlfriends convinced me to try yoga. Restorative Yoga, or I believe it is also referred to as Yin, is extremely gentle. I haven’t been able to get out of bed for months. This Yoga class has 15 minutes of gentle yoga to warm up… I’ll be honest, I generally only do about 50% of this as I can’t handle all of it, but I either modify or just relax during this part. This warm up part is where you do a lot of stretching exercises. I can’t bend over while standing so you can just forget that stuff!

The restorative part is where I am diggin’ this yoga stuff. Lights out, candles lit, soft relaxing music… all of these poses are done on the floor… EXTREMELY gentle. Each pose is held for 5 minutes. This is very relaxing…

I get two mats for the poses where you are on your knees, otherwise I am in pain. For the second mat, I fold it over twice and put it on top of the first mat so I have triple padding. It’s perfect!

I am a pretty anxious person… the first time I went I wasn’t quite sure about the class…. the second time I was starting to like it… now I love it! I look forward to it!! Honestly, this is ME time. Time to just relax and clear my mind for an hour. I don’t have to think about my pain, work, stress, or what words I need to use to finish my sentence! I can finally shut my foggy brain OFF! Woohoo!!

My girlfriends are the best, they go with me… grab your friends and go. I hope you find it as restorative as I do!

What do you do that takes your mind completely off your pain??

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The F word… Fibromyalgia

I have learned so much in the last 18 months. Things I could have gone a lifetime without learning… and quite frankly been okay. In the last 5 years I have been to the doctor off and on so many times I have lost count. I have felt stupid, crazy, frustrated… but for all of you out there who have gone through this experience, I don’t have to tell you. You already know. You have the F word too… FIBROMYALGIA.

Once you are diagnosed with the F word, you may feel like you are getting closure but it’s really only the beginning of your next F phase… FRUSTRATION. You thought you were getting out of that phase… but NO! At least not me. This, I have found out, is a medical condition that has no cure, no visible signs that you are not well and has not been 100% accepted by the medical field. WONDERFUL. “Welcome to the the F world people, hang on to your seats, this is going to be a rough ride!”

Whenever I see people who know I am not feeling well, I feel like I should look like shit so people will accept that I feel like shit. I should paint all of the places on my body that hurt a bright pink so that it will be obvious. Instead, my lucky ass, gets to be the one who can no longer finish the simplest sentences or remember what I was doing 5 minutes ago or even 5 seconds ago. Noone gets that brain fog has anything to do with the F word, people just think I’m stressed out, exhausted or just stupid. My foggy brain is a world I seem to live in 99% of my life these days… I can remember when I was smart. I can remember the days when I could actually train a room full of adults. Today, I’d have to play charades just to get through my first sentence presenting to a room full of first graders! So now you know my 3rd F word for today… FOGGY.

What I really hate? All the support groups that I went to online thinking there would be good ideas to help me feel better. What I found were too many online support groups with a bunch of sad people talking about how miserable they are…  in the end I got horribly depressed. Not to mention all those F’ING (my 4th F word for today) QUACKS trying to sell the miracle drugs that will cure us in 6 weeks or less!  Seriously… I’m in pain and in a brain fog… I AM NOT COMPLETELY STUPID!! These people have got to be stopped. I mean seriously… put the money towards research..

So what am I telling all this for? After taking 5 years to get diagnosed… 18 months after being diagnosed to finally get into a treatment program… that is 6 1/2 years of my life. That’s pure craziness! I am ready to take control and help others as well. Blogging seems to be the thing these days. I just wanted a place for me to share my journey with this crazy thing called Fibromyalgia.

This is my first blog and I hope it helps others. I am here to learn, share and network. I hope you share with me as well…

Thank you for reading!