in response to comments

You know it's weird how you experience something and just assume it's normal until you talk to someone else and find out that indeed it's not normal. I don't know how long I had this disease before my 2005 diagnosis, but it was at least for 2-3 years. I couldn't figure out why I ALWAYS felt like I was getting sick. You know that day before you get the full blown flu???? that's how I always felt. On top of that I was exhausted all the time. I chalked it up to working shift work, but reality is I've never worked anything but shift work so my body was used to that. Then there was/is the pain....constant and never ending. When Cinders and Jasmine mentioned growing pains in their last comments....it struck me that I too had horrible growing pains as a child. I know it's normal for kids to go through growing pains....but I definitely think that alot of my symptoms were present way back in childhood.

It's such a difficult disease to figure out and pinpoint since they don't know what triggers it, or how to track it...it just is what it is...and that is quite nebulous. It's not an easy one that is for sure.

I've been back at work now for 4 days, and it's been a huge roller coaster. My first day went not too bad, but then I woke up the 2nd day with a full blown migraine and tossed my cookies about 5 times before I even left the house. I couldn't rightly call in my 2nd day back after 5 weeks off, so I slogged through the day with many trips to the restroom...ick. By the third day it was total exhaustion, and a feeling like I'd never get ahead. My husband and I finally decided that I need to quit and take some time off, and hopefully get my health back on track. So then I was quite elated as we'd finally made the decision that we've been struggling with for almost a year now...then Friday came. It also happened to be the day of my annual review. I went into the meeting with the full intention of letting my boss know that I'm seriously working towards not working (if that makes sense)...but then....she gave me this glowing review and talked on and on about how she counts on me and me only to implement this new computer system we're getting and how I'm her "right-hand man" and she doesn't know what she'd do without me. Yikes. While I'm ecstatic that she thinks so highly of me....now I feel totally guilty for planning to quit. The only glitch on my review was my attendance. I've missed 11 days (not counting time off for surgery) since Jan.1,2008. All of which were either fibro...or my son being home from school, which I think only accounts for 2 days. I told her that my husband and I are working on that, but didn't have the heart to say anything further. ACK. I know I have to take care of me and my family, but I really do want to be working and growing as an individual and it's tough to give that up when I'm getting such good feedback.

so what now???? I go to work on Monday...and then we'll just take it day by day.....argh....this is a really tough one! Any thoughts out there?

hobbz

Invisible Illness...indeed!

In searching around the internet today I found the link you see to the left. It's a site that is trying to increase the awareness of invisible illnesses that people struggle with day to day. Fibromyalgia is one of these elusive illnesses and I am just one among many who suffer from it's debilitating effects. I was diagnosed in 2005 and I'm still struggling to this day to find a way to live life with fms on my terms....as my blog entries indicate it has been a rather difficult journey.

I started this blog with the hopes of connecting with others that have similar illnesses as well as to increase awareness about how someone's daily life is impacted by these diseases. So, I was excited to join this site and help them increase awareness and spread the word to thousands upon thousands, so that maybe our voices will be heard and we won't feel so alone and isolated in the worlds we live in!

hobbz

crappy/scrappy

I'm feeling pretty crappy today, which follows right into scrappy. Do you ever feel like you are just not getting anywhere? That's me. I'm healing and on the road to recovery...yes...but it's brought up all the old problems that I try to pretend don't exist in my life.

Number one on that list is (drum roll please)....employment. Since I started writing this blog it's been a huge issue for me. I know that being employed only fuels my fibromyalgia, and then in turn adds to my inability to cope with life...which then adds tons of stress to my family. I'm so fucking sick of know that I SHOULD NOT be working, yet understanding that I have NO CHOICE! What am I supposed to do?

This is such a touchy subject that nobody, and I mean nobody wants to deal with it, which makes it really hard for me to find a place to vent or discuss or anything, for that matter. There are those that believe that I'm making this into a bigger situation than it is...but I chalk that up to them never having lived with me, and my fms. Another big factor is that if I'm not working, I have to find a way to keep myself occupied, so I don't get mired down into the pit of "oh poor me". There's a fine line between staying social and active, and working your ass off in spite of how totally horrible you are feeling.

This just sucks, no matter how you look at it. I've been off work for 5 weeks and have to go back next Tuesday. The last week for me has been a living hell of a flare and I've barely made it through each day, without work. I'm dead dog exhausted and in more pain than I care to admit and now I'm going to add a 6 hour day of work each day???? Does this make sense? NO!...but what choice do I have. If I don't work that means my husband would have to work 2 jobs to make up for the lack of income....how fair is that? Not! So really I'm fucked...I have very few resources, and nobody in my immediate life who truly understands my fear, frustration, heartache, guilt etc....people try but unless you live it, you don't get it.

At this point I just want to scream...aaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhh...and then go hide in bed (unfortunately that isn't an option).

I can't go back, I dread going back....I'd rather poke myself in my eye with a blunt rusty object than go back.....but......i'll go back.

crap! hobbz

Ok so a bit of a pause between posts

So I took a bit of a break but now I'm back with a vengeance!!!! ta daaaaa! LOL Thanks for all the kind words of encouragement!
Overall the healing is going pretty well. I have to admit that it is alot better than what I'd dreamed up in my head. My inlaws were here for a week so that was a huge help! Since then I've had a bit of a flare, I'm hoping it doesn't get really bad, but it seems to be doing it's best to knock me on my butt...lol if it isn't one thing it's another.
In terms of swelling I've had a minimal amount but it still lingers today and I'm just 2 days shy of 3 weeks post-op. I saw my doc last week and much to my dismay I have to wear my neck collar for another 6 weeks at least....ick....but it's worth it to heal properly, I certainly don't want to repeat any of this.

So I'll be posting on a more regular basis again....thanks soooo much for your support everyone!

hobbz

Home from surgery

So I had my surgery yesterday and was able to come home this morning. I felt really icky last night in the hospital, but by this morning I was up and walking on my own....whew. I'm not having too much neck pain, but my throat is sore and starting to swell some.

I was able to sleep this afternoon in my own bed which sure was nice, but i woke up pretty stiff. So I'll probably spend tonight in a recliner.

That's all for now....i'll keep you all posted though!

hobbz

How very cool!

It's sooooo nice to have people checking in and leaving comments on my blog! Thanks guys! As all of you know, it can be alot of work keeping up a blog and my main goal is to open a dialogue so that people out there with these chronic diseases don't feel so alone.

All have you have helped me feel not so helpless. Sometimes I feel like I'm just putting my deepest thoughts out there and people read, but don't comment...then I start to doubt what I'm saying and doing....I really REALLY appreciate all of you out there who read my blog and comment on it....and all of you who support me with this disease...it means the world to me.!

So my husband gets home Friday, and then his surgery is on Monday YIKES! I felt bad because he said that he felt like he couldn't show me if he has pain after surgery because he doesn't want me to worry about what lies ahead for me...we truly are in a unique situation. While I love the fact that he's thinking about me, it's important that he gets what he needs during the 9 days between our two surgeries...so we'll have to really work on that.

We're trying to focus on having some quality time together and with our son, where we can play games, watch movies, and just hang out. My in-laws will be here for a week shortly after I get out of the hospital, so that will certainly help us out alot, and of course I know that our son is always happy to help out too. From what I've heard the recovery is reasonably pain free so the key will just be getting help lifting groceries and stuff....it will be interesting that is for sure!

lol....right now I'm choosing to laugh, for fear of crying....lol...we'll see how that holds up in a week or two.
Again thanks sooooo much for all of your support!

hobbz

Perspective

So I'm feeling a little better than I was when I last posted, but I still have to say I'm pretty shit scared of this surgery. I know that it's relatively routine, but I've always had a hugely unrealistic fear of breaking my neck, and now a doctor is going to be cutting, removing disks, and messing with vertebrae all that are impinging on my spinal cord....ick.

Not to mention the fact that they access your spine through the front of your neck, which means they have to push aside your esophagus and trachea....i'm not too wild about any of this....but I've got lots of time to get used to it...so hopefully I'll gain even more perspective.

As for the fibro???? the stress of all this medical crap has pushed me into a huge flare...ick. I hurt like hell, and I haven't slept more than about 6 hours total in the last 4 days....at least it's almost the weekend and I will hopefully will be able to relax and get some sleep on my days off.

until this weekend......

hobbz