Monday, October 29, 2007

a quickie note

I don't have time but I wanted to make sure to......



That is just soooooo damn cool. I've been blessed to have found my position and I know that it is a huge relief to not have to worry about a physically demanding job! Way to go girl! You rock!

Also I would like to thank my mom, who was kind enough to respond to my blog. She sent an email and it made all the difference in my frame of thought!

thanks Mom!!!!!


Sunday, October 28, 2007

Didn't make much difference did I?

So I see my last post didn't really touch anybody. Maybe it is just me and Appleseed, and of course Bret (my husband) who reads over my shoulder at times. I'm told I probably haven't given it enough time for people to respond so I'll try to kid myself into thinking that's the case and see what happens.

In any case this is a place where I can vent and say what I need to say, so I guess I'll just keep doing that.

Since buying my new shoes I've only really had today to see how they feel, but so far so good. This week will really be the test though. So now I'm splining my wrist as needed and wearing supportive orthotics 24/7....quite the cripple I've become....

I'm just gonna stop here because, this is sounding really negative, and quite frankly that's wear I'm at right now. I hate being sick, I hate hurting, and I can't stand that my body has become my enemy and the one thing that I CANNOT rely here's hoping all the other fibromites out there are feeling better than I....or at least know that you are not alone!!!!

trying to take good care....jan

Thursday, October 25, 2007

Ick Ack Oop!

To all the people that are lurking out there, reading but not commenting, I know you're there...please, please leave a comment or two. You can comment anonymously and nobody will
ever know who you are, not that I get why that would be a problem. This blog is extremely important to me and I'd like to know that it is making some sort of difference, in somebody's life besides mine. This is a great place for me to vent my feelings, ideas etc. and it has helped me share some of the daily struggles that those of us with fibromyalgia go through.....I think I can speak for most people that have this disease and of the biggest problems we face is the lack of awareness about FMS; AND the lack of support that we feel from those who are close to us. I don't expect gushing emotions and testimonials....just a few simple words to let me, and the other fibromites that visit this blog, know that you are tuning in. That's all I have to say about that! blink blink blink

Today has been a weird one, I've kind of trapped myself in my head, thinking self defeating thoughts about this dumb disease. As some of you know, I was diagnosed with fms when we couldn't find any treatment to help my plantar fasciitis (heel spurs). My body's lack of response to treatment was a big red flag that there was more going on in my body than just foot pain. Well in March 2006 I had surgery on both my feet, and they've done wonderful! up until this week, sigh. I noticed on the weekend that one of my heels was kind of tender and now there's no denying it....they hurt. So I went out today and spent another 200 dollars, that by the way we cannot afford, on new shoes and orthotics. I'm so fricken scared that I'm going backwards! My doctor told me that if my pain came back I'd be that 1 in a hundred that the surgery wasn't a permanent fix for! Of course I would be! So I'm trying, quite unsucessfully to not panic, I'm taking every precaution with them and doing all the right things.....pleeeeeeeaaaaase let it get better and go away! I'm having trouble with my wrist, and I'm pretty sure at this point that I have Carpal Tunnel Syndrome....and that's just going to be another 10,000 dollars down the drain. I'm so tired of what this disease is costing me, emotionally, physically, family wise, work wise, and mostly money wise. I have insurance and I'm still paying monthly installments on my last surgery. It fricken sucks!!!!!
So now the key is to not stress, cuz if I stress, I'll be in more pain, and if I'm in more pain, I'm less able to cope, and then my health spirals.....and on and on and on....



Wednesday, October 17, 2007

National Fibromyalgia Association NFA

I'm a member of the NFA and I logged on last night to see what's new....they are launching, what I believe to be an ingenius campaign! "take the clothespin challenge" The challenge is simple, place a clothespin on your finger and leave it there for 15min...then you donate x amount of money for every min that you didn't keep the clothespin on your finger. This is a simple exercise to show people a glimpse of what it's like to live with chronic pain. Can you imagine feeling that same finger pain, amplified around your entire body? pile on top of that extreme exhaustion, and sensitivity to light and sound???? How well would you cope? definately something to think about.

Living with this disease it's easy to forget just how MUCH stuff we deal with everyday, on top of the everyday living experience. I'm starting to see a clearer picture of why I'm frustrated, have very little patience, constantly feeling overwhelmed....well it's simply trying to adjust to my disease and integrate it into my everyday living. I can't keep up the same pace anymore....the hard part is some days I feel reasonably good and forget that "reasonably good" for me means moderate (not severe) pain, tired but not (drop dead exhausted), clear thinking (not in a total fog)....before current "good day" would have been a nightmare day!

It always comes down to perspective doesn't it. I noticed that my family thinks I have super sonic hearing, because I'm constantly asking them to turn down the TV, talk in a quieter voice etc. In reality I'm oversensitive to ALL noise. What's sitting quietly on the couch for my husband is for me.......

the dogs nails clicking on the tile floor, the kids outside yelling and playing, the furnace running, the dishwasher banging, the pencil my husband is writing with scratching on the paper AND the TV on. ...

I hear all of these things at what to the rest of the world would be 8 on a scale of 1-10....10 being, your ears bleeding it's soooo loud. If it was just one thing I'd be ok...but I hear all of these things, and on a bad day, I feel totally bombarded and would be easier to have 5 people screaming in my face, because then everyone would know why I was frustrated. It's these weird little things that crop up, that amaze me daily, that this has just become normal for me......and I'm not sure if it's good or just is, I guess.

it's all soooo very weird! I'm rambling I guess...I'm sure I had a point to this...but for the life of me I can't remember what it was lol lol lol lol

anywaaaays, check out the NFA website if your interested! take good care my fellow


Sunday, October 14, 2007

Still surprised

This disease still never fails to surprise me. Yesterday I woke up in incredible pain. You know how you feel the day after you workout too hard? Well that's kind of how I was feeling, except it was every single muscle in my body....even my toes and fingers hurt. If I didn't know better I'd say I was hit by a Mack today, everything's back to normal. Too weird. Just the regular ache in my legs and neck today...I even feel rested, and I got less sleep last night than I did on Friday.

There are some things that are very predictable about FMS, and then others, more often then not just crop up out of the blue. I wonder why that is? Is it the lack of serotonin that makes our brains sense pain differently than everybody else...or is it that I'm just weird? I dunno! :)

It's been a week of ups and downs everyday held something different. At least I can't say that this disease is boring...lmao! What to do what to do?


Saturday, October 6, 2007

Going with the flow

Another week down at work, and we are now down to 2 of us instead of 4. Let me tell you this had me stressing a bit...but all worked out. I am ever reminded how important sleep is to my health and keeping FMS as bay. I have always needed a good 8-9 hours of sleep a night....or my world just isn't right. Since FMS has entered my life, I really have to keep my sleep as a priority.

Last night for example I went to bed around 11pm....I got up around 8:30 this morning...took about a 30 min nap around 11am and then had a BIG nap this's almost 9pm here and I could easily go to bed and sleep all night. When I was healthy, I would one: not been able to sleep that much, and two: if I did manage to sleep like that I would have felt horrible for over sleeping....but not now....since I don't get enough of the "regenerative" body is in a constant state of exhoustion. I can sleep 8 hours and wake up more exhausted than when I went to bed. This is a VERY common symptom in FMS and is one of the big diagnostic symptoms.

It's weird how you get used to it though. I can't even tell you how many nights I've sat up with a book, on my puter, watching tv, even listening to Bret's just one of the constant daily reminders that I have FMS and this disease is not forgiving....if you don't take care of your suffer, plain and simple.

On good days like today when I'm recharging, it doesn't seem so bad, but if this happened on a Wednesday...I'd be done for. Obviously napping all day isn't an option when you have to work and when it happens in the middle of the week it's really hard to catch up. That's one of the wonderful things about my job is that I get off at 12:30 most days. It's just when we're shorthanded like right now, that I work a full 8 hours....
I only work 2 hours less a week than I did in the NICU but because of the hours, and my ability to "recharge" during the week that this position makes the difference. In that respect fate really dealt me a break by allowing me to find this position.....if only it paid

Well I'm off to play some games....hope all my fellow fibromites are doing well....and a big thank you to those non-FMS'ers that are proactively reading this blog...I hope that it gives some insight....